I would love to be able to honestly say that everything is back to normal after all of this, but the only person I would be fooling is myself. It is hard to deal with what happened to Tim. He is doing wonderful with learning to walk but his balance is still very unsteady and it has caused a lot of tension and stress in the household. It seems that his patience is wearing thin and therefore causing my frustration to grow more frequently. I have been working longer hours trying to make it easier for myself to pay bills and get ready for the upcoming school semester but it seems like I am just working just enough to stay behind and not moving forward. The bills are always piled, the credit card statements are always there, and the debt that I've accumulated is haunting. I have been able to stay ahead of the game but I don't know how I can stay positive when there isn't an end of this in sight. Tim's vision is still very bad. He cannot see certain things peripherally (sp) so there is no way of him being able to drive in the near future. Its frustrating for him because cars is his entire life, but it's also frustrating for me because I spend more than I should on parking. I have asked my siblings for help through all of this and Jims work schedule does not add up to mine and Jason is less then accomidating and believes that he should be entitled to smell my car up with cigarette smoke and use all my gas when he takes my car for joy rides while I am at work. My relationship with him is minimal and we only talk or communicate when he needs something or when I am desperate for a ride. I feel like I get no support sometimes. I bend over backwards to help out anyone I could but the minute I need something I am ignored. I also don't ask too many people for anything because I don't want to be a burden.
I lay awake at night having trouble sleeping. I relive the events that have happened to us each and every night. I don't know if it is post traumatic stress disorder, or just stress. I enjoy working in the hospital because I meet new people everyday and I am able to communicate with them as a kind of therapy. My co-workers have been more than kind and helpful and always lend an ear to me, but I think that being inside of the hospital just brings up too many scary memories of how Tim almost died there. I walk past his wing and when I have to go up to the neurology unit I am forced to look inside of the room where he was in for almost 40 days. I can't move past what happened. I try to make positives out of negatives by telling people that he is doing great, and he really is for someone who has made it this far after brain surgery, but that doesnt mean that we arent struggling everyday with the aftermath of it all.
Things are just gloomy in CT. After the mass shooting in Sandy Hook people just are upset and not themselves. my Aunt and Uncle live in sandy hook with their 5 children and I cannot imagine what they are going through. Their neighbor was one of the little boys that was excecuted. It's sad and scary beyond words and just makes everything in this world look like shit.
Tuesday, December 18, 2012
Friday, November 2, 2012
Improvement
Happy November everyone. I didn't have a chance to really enjoy the summer with everything that happened since August but I anticipate a calm rest of 2012 and better 2013. Tim was discharged from Gaylord Hospital October 20th. He was handed a walker and told to continue to use that as he has a 50% chance of falling. I was trained how to help him up and down stairs, in and out of the bathroom and told that he shouldn't be left unattended. I have adjusted my work schedule so that I am home with him throughout the day and I go to work as Tim's parents are pulling into the driveway. The storm didn't really affect us very much. We were very lucky. Some doctors appointments were cancelled but we didn't lose power.. I'm surprised with the luck that we have had we didn't get washed away but I am very grateful that the storm passed by our neck of the woods. Physical therapy comes out to see Tim three times a week to work on his walking and balance. They are very impressed by the way he zips around with his walker, but take that saftey blanket away and he is stuck and frozen. He doesn't have the leg strength or balance to walk very far on his own. It is going to be a long road ahead of us but it is safe to say that the scary and deadly part is over. He has survived a brain tumor, kidney failure, and meningitis with a smile on his face... I think a little PT after all of that is the least of our worries. We went to see the neurosurgeon last friday and they did a repeat MRI of his neck Brain and Spine to make sure there were no more benign tumors that traveled down and was on his spinal cord. They were happy to say that there wasn't. He agreed to fill out paperwork for disability but assured us that Tim is months away from being back 100%. I really trust this doctor. He was the one that saved his life. Meanwhile we are adjusting to going on dates with him in a wheelchair and walking with the walker at home. The neighbors gave us a cute little wheelchair for us to stick in my car and we have gone out a lot. We went to a halloween party and Tim had a blast. i dressed up as a neursurgeon and he was a transporter .. our two friends went as patients and it was just nice to get him out of the house and to be back to a normal Friday night. We went to hooters of course because he missed that place and we just call ahead and make sure the resturaunts are handicap accessable. I have been lucky to get some hours at night at work and still continue to work fulltime and stay home with Tim throughout the day.
Wednesday, October 3, 2012
Living in Sweats.
I have updated my blog and my posts online about how Tim is doing and will continue to do so, but what I haven't done is write how I am doing with all of this. I am a wreck. It has been 9 weeks since Tim was admitted to the hospital. We have gone from Yale to Gaylord to Yale to Gaylord and it is a constant battle between the nurses to ensure that Tim is being taken care of. Not only do I stay with Tim the majority of the day but I work at the hospital to. I feel like I live in my scrubs and sweatpants. I never do my hair, put my makeup on, go out somewhere nice... I don't do anything except breathe hospital settings.. It is all around me. And I shouldn't feel this way. I should be strong and dedicated to Tim's success and improvement. I should be there to hold his hand when he is upset, or yell when his medication is late, but at the same time these doctors and nurses should know his routine and I shouldnt have to be the one that has all of this piled high on my shoulders. I am about to break and fall. I am about to crumble. I am tired. I am sad. I am sick of sleeping alone at night. every morning I wake up and its a struggle to get out of bed because I know that the only thing I am going to do today is stay at the hospital. Same routine. I know this is selfish because Tim has to do the same thing, and its because he is sick. But this is just how I feel. I am a strong support system for Tim and I know that, but I don't feel like I have a support system for me to see how I am doing. I know that is selfish too because everyone always talks to me about Tim and how he is doing. I get tons of feedback on my facebook posts from family and friends all around the world but it doesn't fill the emptiness that I feel inside of me. I don't know how to get out of this rut and if I am weak then Tim has no strength outside of his own to depend on. I am breaking and I don't know how to regain my strength.
Saturday, September 1, 2012
Inconclusive?
I can't keep track of the days anymore... 26 days in the hospital... 27? All I know is that it's way to long to be cooped up in a hospital room with hospital food, beeping, and constant strangers wanting to test more and more things. They did a spinal tap about a week ago and yesterday told us all the cultures were negative. Infectious disease came in and spoke with Tim and said they wanted to take a look at his case to see if there was somthing that neuroscience was missing.. Thanks for coming 20 days later than when he was symptamatic.
Better late than never but still... a little frustrating to hear he has menengitis over and over again instead of telling me that the vanco was working for him. They are going to do a repeat Spinal Tap to test the fluid one more time because they aren't convinced that the bacteria is completely gone. He is still having fevers at certain times of the day and they don't know where or why that is happening. It may be Tim's normal body routine or it may be something they missed... They are going to keep testing him for a few more days and I think thats the best option... he is in a good place and I'd rather them search for something than forget about it and something happens at home or rehab.
Rehab is the next step. We are thinking Gaylord Hospital in Wallingford. This will help him become more steady on his feet. He still has paralization in his right eye. The surgeon thinks it will resolve it is just taking a lot time.. Who knows. I thank God that he has his memory and his sense of humor back and if his vision takes a while to get going again so be it. Things outside of the hospital have been rough and it hasn't been easy for any of us. We are all dealing with this different ways and it is very difficult to keep everything together. I feel lost.
Better late than never but still... a little frustrating to hear he has menengitis over and over again instead of telling me that the vanco was working for him. They are going to do a repeat Spinal Tap to test the fluid one more time because they aren't convinced that the bacteria is completely gone. He is still having fevers at certain times of the day and they don't know where or why that is happening. It may be Tim's normal body routine or it may be something they missed... They are going to keep testing him for a few more days and I think thats the best option... he is in a good place and I'd rather them search for something than forget about it and something happens at home or rehab.
Rehab is the next step. We are thinking Gaylord Hospital in Wallingford. This will help him become more steady on his feet. He still has paralization in his right eye. The surgeon thinks it will resolve it is just taking a lot time.. Who knows. I thank God that he has his memory and his sense of humor back and if his vision takes a while to get going again so be it. Things outside of the hospital have been rough and it hasn't been easy for any of us. We are all dealing with this different ways and it is very difficult to keep everything together. I feel lost.
Wednesday, August 29, 2012
23 Days - Going Strong
The days are a blur to me... I can only imagine how Tim feels. He is getting his strength back slowly and surely. He still has low grade fevers daily.. and they are running every test imaginable to make sure he doesn't have an infection anywhere else.. They repeated the Spinal Tap on Monday to determine the pressure of fluid in his head and also test the fluid for the bacteria that they are treating.... a Staph infection. His transplant is going strong. They cut back his immunosupressant drugs by half to build his immunesystem enough to help with the infection.. Transplant comes to see us everyday. Neuro didn't see us at all last week. His Surgeon came in on Monday and said we must have missed each other last week... I was there 24 hours a day.. He said it will be another week but they think that they have the infection under control. They are going to test the pressure to determine if a shunt in his head is really necessary but he was 90% positive that the accumulation of water in his head has depleaded on his own. Tim walked around the hospital with Physical therapy yesterday afternoon.. He has no trouble walking a straight line but side to side is very difficult. After he is discharged from the hospital he will take some time at a rehabilitation center to work on his left to right motions and continue to build strength in his legs. 23 days in bed has took a toll on him. He is very weak and needs to get out of bed but has gotten very lazy with that. He is so strong mentally but physically he is drained and it is going to take a very long time to get him up to pair with the physical aspect of everything. His vision has not come back 100% although it has come a long way. He can look up, down, and to the right.. but the left is nearly impossible. His doctor said that it will come back over time but that it may take a while because they stunned the brain by being so aggressive with taking this tumor out.
23 days later and his mentality is back.. he is his normal grumpy self being nice as pie to the doctors and short and snippy with me.. just like I love him. He called me this morning to say hi and that he had a headache instead of telling the nurse he would like his oxycodone... (lol) and also to tell me that he was hungry instead of picking up the phone and dialing for his breakfast.. But I'm glad he was able to see well enough to dial the phone number to the house and that his memory of numbers and dates are becoming more clear. When I ask him questions like what month it is he is quick to say something different but then when I say... think about it... he says August.. his speech is very fast paced and he is more vocal than before. The doctor said it could have been slowed down and foggy because of the tumor so I may have had a blabber mouth on my hands and never knew it. All in all things are going in the right direction.. If only we can figure out these fevers and beat them. His sodium levels have been stable with the sodium water therapy... those things are hard to overcome.. and he is thirsty and just wants to bathe in a pool of Orange Drink from McDonalds. They have limited his fluid intake to 1500 cc (1.5 liters) just so he doesnt pee out the sodium .. when sodium levels are low his mood can shift and become dazed and confused and I don't want that to happen again.
He still has persistant headaches but they think its because hes been in bed and not moving his head alot.. also where the tumor was they had to move his neck muscles around to get to the brain stem.... he has been taking medication for it but it seems that it only tops it off and doesnt get to the pain. We are hoping everyday that this resolves and that he doesnt have to be on pain management when he is out of the hospital but I'd rather him take pain medication to be comfortable than be in the pain that he was in prior to all of this. To go through all this crap and still have a headache is unacceptable. We are not going to stop requesting help this time.. we are never going to give up. You have to be your own advocate these days. Never stop trying .. especially if you have signs and symptoms of things for greater than a few days. Don't be ignorant and think that things will get better.. When your check engine light goes on in a car it doesn't magically resolve itself.. you have to get it worked on. Ask Questions... be cautious, and most importantly don't give up. Just never give up.
I made a promise to Tim and to myself that I will be heard and seek out attention to try to be an advocate to others. I want to make sure that when someone is in pain or they have an issue that these Doctors are taking the time and listening to them instead of ignoring the problems that are blatently there. There have been thousands of times when I said.. Tim had no signs and symptoms and he ended up with Kidney failure.. These headaches are persistant.. there has to be something wrong if Tim went the entire time asymtamtic and now he actually had a sign.. and you are ignoring him. These specialists only look through a tiny whole in a window of issues.. Kidney specialists tend to think that everything is related to the Kidney and all the problems people have can be resolved once a transplant takes place. They don't stop to think of other areas of the body where issues can happen. The body works together to run properly.. The brain, the heart, the kidney, the liver, the pancreas, the heart etc are all connected and work together to keep the body in line. If Tim had kidney issues and heart issues.. why not scan and search and test all areas of the body to ensure that all his organs are properly functioning.. not just ONLY address the already broken ones.. ? If they diagnosed him with Lupus Nephritis.. how come they didn't check other areas of the body to see if the lupus had conquered another organ. If lupus did this much damage to one organ.. what makes them think that it stopped there? Luckily, they don't think that he had lupus this entire time and that some how the tumor was related to the kidney disease.. so if they found the tumor when they were supposed to last year on the CT scan that they never looked at.. would there have been residual kidney function that could have come back ?? would he have needed the transplant if they caught this when they billed us for checking so? Alot of questions that I have.. a lot of built up anger, but I know that medicine is a practice not perfected and ALL of these doctors can learn from this to prevent this from happening to another patient.. and I think that it was meant to happen like that.. And that I am the crazy manic that is vocal enough to get my point across to all these Doctors, Nurses, and Physician's assistants who don't look at the bigger picture.
23 days later and his mentality is back.. he is his normal grumpy self being nice as pie to the doctors and short and snippy with me.. just like I love him. He called me this morning to say hi and that he had a headache instead of telling the nurse he would like his oxycodone... (lol) and also to tell me that he was hungry instead of picking up the phone and dialing for his breakfast.. But I'm glad he was able to see well enough to dial the phone number to the house and that his memory of numbers and dates are becoming more clear. When I ask him questions like what month it is he is quick to say something different but then when I say... think about it... he says August.. his speech is very fast paced and he is more vocal than before. The doctor said it could have been slowed down and foggy because of the tumor so I may have had a blabber mouth on my hands and never knew it. All in all things are going in the right direction.. If only we can figure out these fevers and beat them. His sodium levels have been stable with the sodium water therapy... those things are hard to overcome.. and he is thirsty and just wants to bathe in a pool of Orange Drink from McDonalds. They have limited his fluid intake to 1500 cc (1.5 liters) just so he doesnt pee out the sodium .. when sodium levels are low his mood can shift and become dazed and confused and I don't want that to happen again.
He still has persistant headaches but they think its because hes been in bed and not moving his head alot.. also where the tumor was they had to move his neck muscles around to get to the brain stem.... he has been taking medication for it but it seems that it only tops it off and doesnt get to the pain. We are hoping everyday that this resolves and that he doesnt have to be on pain management when he is out of the hospital but I'd rather him take pain medication to be comfortable than be in the pain that he was in prior to all of this. To go through all this crap and still have a headache is unacceptable. We are not going to stop requesting help this time.. we are never going to give up. You have to be your own advocate these days. Never stop trying .. especially if you have signs and symptoms of things for greater than a few days. Don't be ignorant and think that things will get better.. When your check engine light goes on in a car it doesn't magically resolve itself.. you have to get it worked on. Ask Questions... be cautious, and most importantly don't give up. Just never give up.
I made a promise to Tim and to myself that I will be heard and seek out attention to try to be an advocate to others. I want to make sure that when someone is in pain or they have an issue that these Doctors are taking the time and listening to them instead of ignoring the problems that are blatently there. There have been thousands of times when I said.. Tim had no signs and symptoms and he ended up with Kidney failure.. These headaches are persistant.. there has to be something wrong if Tim went the entire time asymtamtic and now he actually had a sign.. and you are ignoring him. These specialists only look through a tiny whole in a window of issues.. Kidney specialists tend to think that everything is related to the Kidney and all the problems people have can be resolved once a transplant takes place. They don't stop to think of other areas of the body where issues can happen. The body works together to run properly.. The brain, the heart, the kidney, the liver, the pancreas, the heart etc are all connected and work together to keep the body in line. If Tim had kidney issues and heart issues.. why not scan and search and test all areas of the body to ensure that all his organs are properly functioning.. not just ONLY address the already broken ones.. ? If they diagnosed him with Lupus Nephritis.. how come they didn't check other areas of the body to see if the lupus had conquered another organ. If lupus did this much damage to one organ.. what makes them think that it stopped there? Luckily, they don't think that he had lupus this entire time and that some how the tumor was related to the kidney disease.. so if they found the tumor when they were supposed to last year on the CT scan that they never looked at.. would there have been residual kidney function that could have come back ?? would he have needed the transplant if they caught this when they billed us for checking so? Alot of questions that I have.. a lot of built up anger, but I know that medicine is a practice not perfected and ALL of these doctors can learn from this to prevent this from happening to another patient.. and I think that it was meant to happen like that.. And that I am the crazy manic that is vocal enough to get my point across to all these Doctors, Nurses, and Physician's assistants who don't look at the bigger picture.
Sunday, August 26, 2012
Meningitis - staphylococcal
As we move forward (although it feels like we are always moving backwards) Tim is battling what is called Staphylococcal Meningitis which is a Staph infection in the cerebral spinal fluid. This was caused by the brain surgery that he had status post 16 days ago. We are battling this day by day by monitoring his temperature, and white blood cell counts. He had started running a fever last Sunday and they did what is called a spinal tap to test the fluid. Although at first they said it was highly doubtful that the culture and bacteria was most likely in the brain, it was determined on Thursday that it was. He has been on Vancomycin and Cefa Drugs since Last sunday. Last night and the night prior he had no fever. This is a good sign that he is breaking the infection. The antibiotics caused a thrush in his mouth so they are giving him a medication to help him with that. Otherwise he has a healthy appetitie and a good sense of humor through all of this. It seems as though his mentality is back to normal although he does not seem to remember certain dates or months very well. If I was caught up in a hospital for a month I wouldn't start to remember the month either.
I've been working and visiting him constantly making sure the nurses are doing their jobs. Not one doctor has come to visit from neurology.. the PA says its because they are waiting for the infection to go down and its just a waiting game. Transplant doctors have come in everyday to ensure us that his kidney is healthy. They had to cut back on the immunosuppressant drugs because he needs strength to battle this infection. This may take a lot longer because he is in immunocompromised with the Kidney. But as long as Tim is in Good spirits and comfortable he is able to be strong and patient while all of this is going on. I have started to calm down a bit. I was a wreck the first 3 weeks. But now I just am angry at this infection and ready to stand behind him and fight the battle with him. I ensure the nurses are doing their job. Checking to make sure he needs to use the bathroom, helping him with getting up and down with physical therapy.. those things that some nurses tend to neglect with Tim. He can tell me who does what and who neglects him. Its all written down in a book that I will present to the medical director and other people once things have subsided a bit. People look at me like I am stupid being in the hosptial room all the time but it is all for a reason. The reason is I love my Tim and the second reason is everyone that has been neglectful since the beginning of this will have a talking to by several people. What has happened to Tim this past year has been a miracle and a disaster all at the same time. Although I think things happen for a reason and am very positive on the events leading to this.. it is because of my faith in God I have this output. But for someone that is fascinated by medical and has been persuing a job in the medical field I have another opinion on all of this. I am never going to let something like this every happen to someone else. I have to be an advocate to every single person in that hospital who asked for something or had a sign and symptom that was ignored. This will turn out all right for Tim.. I have my faith that it will, but this may not be a miracle case for everyone and how many times does this happen to people? I am ready to fight a battle greater than anything I have ever done and I am determined to have justice for the people who do not have knowledge of medical or someone in their family that does. People put a lot of faith into doctors and medical staff to be their care givers and to do the right thing. it's time they realize how truly important that really is to the livelyhood of our people.
I've been working and visiting him constantly making sure the nurses are doing their jobs. Not one doctor has come to visit from neurology.. the PA says its because they are waiting for the infection to go down and its just a waiting game. Transplant doctors have come in everyday to ensure us that his kidney is healthy. They had to cut back on the immunosuppressant drugs because he needs strength to battle this infection. This may take a lot longer because he is in immunocompromised with the Kidney. But as long as Tim is in Good spirits and comfortable he is able to be strong and patient while all of this is going on. I have started to calm down a bit. I was a wreck the first 3 weeks. But now I just am angry at this infection and ready to stand behind him and fight the battle with him. I ensure the nurses are doing their job. Checking to make sure he needs to use the bathroom, helping him with getting up and down with physical therapy.. those things that some nurses tend to neglect with Tim. He can tell me who does what and who neglects him. Its all written down in a book that I will present to the medical director and other people once things have subsided a bit. People look at me like I am stupid being in the hosptial room all the time but it is all for a reason. The reason is I love my Tim and the second reason is everyone that has been neglectful since the beginning of this will have a talking to by several people. What has happened to Tim this past year has been a miracle and a disaster all at the same time. Although I think things happen for a reason and am very positive on the events leading to this.. it is because of my faith in God I have this output. But for someone that is fascinated by medical and has been persuing a job in the medical field I have another opinion on all of this. I am never going to let something like this every happen to someone else. I have to be an advocate to every single person in that hospital who asked for something or had a sign and symptom that was ignored. This will turn out all right for Tim.. I have my faith that it will, but this may not be a miracle case for everyone and how many times does this happen to people? I am ready to fight a battle greater than anything I have ever done and I am determined to have justice for the people who do not have knowledge of medical or someone in their family that does. People put a lot of faith into doctors and medical staff to be their care givers and to do the right thing. it's time they realize how truly important that really is to the livelyhood of our people.
Tuesday, August 21, 2012
I Shunt Complain
Two weeks and one day in the hospital. Seems like this is never going to end. I think that when I heard the words "Tim's survived the surgery" my heart wanted to believe so much that everything would be peaches and cream going forward, but it hasn't. Tim has been dealing with double vision eye sight, neck pressure from where the incision is, to fevers as high as 102.6, as well as dealing with an infections. This kinda slapped me in the face with the reality of.. this is not going to be over for a while.
The good news is he is out of the ICU and Step Down for that matter. They did a lumbar tap to gain some spinal fluid for testing. The tests take a couple days but so far they don't think that his infection is in the brain (meningitis) I am thinking he may have MSSA which is a staph infection of the blood or a urinary tract infection. Either way they have him on two different types of anitbiotics twice a day. Vancomycin is one and a Cephzollin type is another. The surgeons also told me that they will have to put a shunt in his brain. Because where the tumor was placed and that it was placed there for a least 20 years. the muscles on the fourth ventricle are parlayzed and stuck in the same position. This shunt will be placed (a metal stent lik thing) so that the spinal fluid to get back and forth the way its properly needed. This should help with the confusion, the aggitation, and incontinece (he rarely has that) and also help him see straight.
I have some information on Shunts that also show signs and symptoms if you think this pertains to you or a loved one.
Patients are placed on a special operating room bed that allows for optimal access to the head and room for the surgeon to work and helps greatly reduce the potential for blood loss.
Your surgeon will make an incision in your scalp. A small hole will then be made in the skull. Your surgeon will then place the catheter into the ventricle. The other end of the catheter will be tunneled under your skin into your abdomen, chest or heart, depending on where your neurosurgeon has decided.
If you require rehab before going home, a doctor from the Physical Medicine and Rehabilitation department will see you and make specific recommendations regarding your discharge.
You need to be able to walk, eat, urinate and your surgical wound must be healing well.
The good news is he is out of the ICU and Step Down for that matter. They did a lumbar tap to gain some spinal fluid for testing. The tests take a couple days but so far they don't think that his infection is in the brain (meningitis) I am thinking he may have MSSA which is a staph infection of the blood or a urinary tract infection. Either way they have him on two different types of anitbiotics twice a day. Vancomycin is one and a Cephzollin type is another. The surgeons also told me that they will have to put a shunt in his brain. Because where the tumor was placed and that it was placed there for a least 20 years. the muscles on the fourth ventricle are parlayzed and stuck in the same position. This shunt will be placed (a metal stent lik thing) so that the spinal fluid to get back and forth the way its properly needed. This should help with the confusion, the aggitation, and incontinece (he rarely has that) and also help him see straight.
I have some information on Shunts that also show signs and symptoms if you think this pertains to you or a loved one.
Brain Shunt
A shunt is a narrow piece of tubing that is inserted into the brain in the fluid-filled ventricle. The tubing is then passed under the skin into another area of the body, most often into the abdomen. Occasionally, the shunt tubing can be placed into one of the chambers of the heart or the lining of the lungs. The shunt tubing relieves pressure on the brain, a condition known as hydrocephalus, by draining the extra fluid in the brain ventricle(s) to a different area of the body where it can be absorbed more quickly.Types of Shunts
- Ventriculo-Peritoneal – The shunt catheter goes from the ventricle in the brain to the abdominal cavity
- Ventriculo-Pleural – The shunt catheter goes from the ventricle in the brain to the pleural space located outside the lung
- Ventriculo-Atrial – The shunt catheter goes from the ventricle in the brain into the right atrium cavity of the heart
- Programmable – These shunts have special valves that can be adjusted to allow more or less fluid to drain
- Fixed Pressure – These shunts have valves that drain at a set rate, either low, medium, or high
About Your Shunt Surgery
For most shunt surgeries, patients are given general anesthesia to put them to sleep. A breathing tube may also be inserted to assist your lungs throughout the procedure.Patients are placed on a special operating room bed that allows for optimal access to the head and room for the surgeon to work and helps greatly reduce the potential for blood loss.
Your surgeon will make an incision in your scalp. A small hole will then be made in the skull. Your surgeon will then place the catheter into the ventricle. The other end of the catheter will be tunneled under your skin into your abdomen, chest or heart, depending on where your neurosurgeon has decided.
Length of Stay
Your length of stay in the hospital depends on the reason you had a shunt and what type was inserted. Also, patients may experience difficulty with walking, talking, balance and strength after surgery. Most patients who have a shunt inserted will go home the day after surgery, but your surgeon will decide when you are ready for discharge.If you require rehab before going home, a doctor from the Physical Medicine and Rehabilitation department will see you and make specific recommendations regarding your discharge.
You need to be able to walk, eat, urinate and your surgical wound must be healing well.
At Home
- You should continue to gradually increase your activity and walking within and outside the home is encouraged.
- Avoid lifting and strenuous activity
- You are not allowed to drive a car. Your doctor will give you specific instructions about driving on discharge or when you follow-up in the office. You can ride as a passenger in a car as directed.
- Sexual activity may resume when indicated by your doctor
- Remember to call and schedule your follow-up appointment with your doctor once you are at home
- If you have a programmable shunt, it will have to reset each time you have an MRI
- You may shower, but try and avoid bathtubs, whirlpools and swimming pools until cleared with your doctor.
- If you have steri-strips (strips of tape), cover your incision as directed by your doctor. You or a companion may remove the tapes as directed. If your tapes do get wet, you pay pat tapes dry or use hair dryer on cool setting.
- If you have staples, you may wash your hair but not scrub over incision.
- DO NOT apply lotions or creams near incision site. No hair dying/perming until cleared by your doctor.
- Swelling on around the incision
- Incision becomes red and hot or has drainage
- Difficulty breathing or chest pain
- Fever of 100° or higher
- Double or blurred vision
- Seizure
- Vomiting or nausea
- Severe headache
- Change in level of consciousness
Friday, August 10, 2012
I'm a tumor, I'm a tumor, I'm a tumor
I think that yesterday may have been the scariest and most intense day of my entire life... When someone goes in for surgery they have their nervousness and their doubts but they know that if something happens they are under and would never no. I truly believe that the people who have to sit in the waiting room next to their loved ones and family members have it the worst. I have to tell you, Tim's parents and relatives are a tough group of people. They were so positive and open minded and very optimisstic about this sugery. Me on the other hand.. was tired, hungry, drained, and freaked out beyong anyone could describe. I sat in that chair the morning of his surgery just staring at him while he slept and watching the clock for when the nurse was going to tell us that transport was going to be here shortly to take him down for surgery. I had a knot in my stomach and my heart was beating out of my chest. First they said noon, then they said one, then Three o'clock so when noon hit and transport showed up at the door I was so scared and sad because I thought I would have three more hours to just sit there and watch him sleep. I walked behind the bed as they transported him down to the operating room at the Smilow Cancer Center. They have a 16million dollar cancer brain tumor operating room designated just for people with brain tumors. the doctor said he absolutly did not need this big fancy schmancy room but that it was there and we might as well utilize it.
His surgery began at 12:53... and I figured it would take an hour to shave the back of his head, and put him under anisthesea. and then 5 hours to perform the surgery. That was the longest five hours of my life. I paced back and forth that room, walked to the bathroom, walked past the secretary... she talked to me and I told her the entire story (poor lady) and at about 4 hours in the buzzer rang...
We waited for about 45 minutes in the consult room. I couldnt handle it.. I was like something is wrong, somethings not right.. this is not good, I was crying and not breathing right and the secretary told me.. listen. I can see what they are doing.. they update my screen.. operation ended at blah blah blah.. they stiched him up at this time.. and they are bandaging him up now.. meaning... hes good.. nothing bad happened. I started balling my eyes out.
The doctor came in and said.. Jackie (SMILING) I have nothing bad to say. I got up and hugged him for like 10 minutes (poor doctor)... he said that he was alert and talking.. and that hes acting like a drunken trucker right now but that was to be expected for a couple weeks after the surgery because of the sensors where the tumor was and they had to play around in there to get everything out. Then he said he wanted to talk to me about some crazy stuff.. He said.. I am beside myself.. I don't know how Tim has been able to function with this thing.. its a tumor only found in children.. I have never or anyone has ever seen this in an adult.. its completely cancer free.. just one of those tumors small children get and they take it out and make sure its completely outta there and they move on with their life. Its the best kind of tumor to find because it means no chemo, no radiation, and quick recovery. He then went on to tell me that he couldnt explain why they overlooked this a year ago but that it was a very good thing that whoever made that mistake did because he would have never been able to have a kidney transplant with that thing noted in his brain... it would have kicked him off of the eligiblity list for a very long time, and to top it off, if he didnt have a kidney transplant the doctors would have deemed him too sick to have the tumor taken out of his brain..
He said that today has been quite the pheonimon of a day and that he is safe to say that there is someone of a higher power watching over every moment of this kids life. I was floored.
Thursday, August 9, 2012
A Brain Mass? Seriously?!
For as long as this whole kidney disaster has been happening Tim has been complaining about serveral things: a headache, a whooshing noise in his head, and nausea. While all the doctors around us discussed kidney disease, dialysis, transplant, and what was associated it didn't feel right that these other symptoms were constant throughout the kidney failure, the dialysis, and the transplant. Tim has been constantly having a pressure in his head that was uncontrollable and this past week his vision was starting to decrease. His right eye had a blind spot right in his periphreal vision.. We decided to make an eye doctor appointment and they took us in right away. So Here we are.. in August, and just a year ago almost to the day he was at the eye doctors being told that he had a hemmrohage in the back of his eye and go to the eye doctor. So now a year later we were told by the same doctor that there was edema in the eye and that we need to go to the emergency room yet again. I packed a bag with some underwear, some pants, and my lap top and we made our way down to yale new haven hospital.... again.
We werent placed in trauma or cardiac this time but in the less severe section of the emergency room. They took Tim for a CT Scan and what they saw was a bleed in his brain. The neurosurgeon came in and they knew it was small, they knew it was blood, but they didnt know why. They did a function test to see how Tim was feeling and if he was competant to anwser questions. She looked at me and said she was amazed that he was walking and talking. Tim laughed and said I worked last week. She said that there will be surgery but they didnt know what or when and then they said that he will be admitted to the neuro ICU for constant monitoring. A second neuro surgeon came in and said a bunch of scary things. how that where the bleed was was centered near the fourth ventricle of his brain and that because the bleed is so close and the ventricle is what drains spinal fluid throughout the body at any time tim would need to be emergency intabated and drained from the brain to relieve some pressure. That freaked me out and that was all that was on my mind after that.
Coming up to the room was very scary because I work here and I know what the neuro icu is like.. nobody walking and talking.. 90% intabated and constantly monitored by nurses, computers, brain monitors. They checked his vision and motor function every hour that night. I was a wreck and constantly stood up to check on him, sit down to relax, stand up again.. but I didnt know what to do with myself, so I went back to Tim's house to try to get some sleep. Which didnt happen at all.. I came back at 630 in the morning and Tim had his MRI done but no results were in... around 11am the head of the neuro surgery department came in and said that they believe that there was a mass of some sort in the brain. He was not sure and wanted to consult with neuro oncology to have a better understanding of what they can do and what was the next step. An entire afternoon went by and then they came back in. I was home because I needed a rest (the wait is the hardest part)
So they said there was defininetly something there.. and that it was there for a while.. in fact it was there last year (august) when he came in and they diagnosed him with kidney failure. But it was not noticed until now (we will get back to that one later) Anyways they said that it grew a tiny bit but now it is pressing against this ventricle and not allowing the spinal fluid to go through.. which is why he has been nauseus, hes been foggy, and have been very irritable. Although the news is devistating we are glad they have finally been able to pinpoint the issue and why this has been happening to him for an entire year straight. They only way I can express the way Tim was feeling was imagine that you have a sharp pain and constant pulsating pressure all over your head, severe neck pain, and then you are so dizzy that you start to get nauseous and then throw up everywhere. It was like that for Tim 24 hours a day seven days a week for an entire year.
So he goes for surgery to take this crap out of his head and determine what the hell it is. Because they have been able to determine that hes had this for so long they are very positive that it is not a cancerous growth because if it was a cancer then he would not be here today to present these problems to everybody.
He was able to get up and take a shower and is the only one that has been able to walk around on the intensive care unit. They all love him although last night when he talked to his best friend from California he was yelling and talking really loud because he was excited to tell him how much he wants to come visit and his whole story. This all sounds like a crazy novel and we like to tell our story because it truly has been a crazy journey thus far.
Although things have been terrible Tim has kept a smile on his face. He is so excited that they found out what it is and to get it out. He is anticipating waking up later from surgery without a headache and to be able to live a normal life again. He said that this alone is worth the scary thoughts of an unsuccessful surgery.
The only frustrating thing about all of this is the fact that we were completely ignored every single time that Tim and I complained of our issues and concerns with obtaining a CT scan and an MRI to just rule out that something was wrong on his brain or in his head. There has been over 200 times that tim has complained to all 40 of his doctors whether it was in transplant, primary care, rheumotolgy, nephrology, cardiology, dialysis, chemo... hemo.. and in the hospital. and not one person gave us a referral to go see a doctor. And then I even told them I would pay out of pocket because I just want to rule out that something is not wrong with his head. I had did my own research and asked numerous doctors about intercranial hypertension and gave them ideas on why that he had these constant headaches but was constantly ignored. Its a terrible feeling to find out we were right about something so dangerous and devistating. I want to scream at the top of my lungs I told you so this entire time. I want to gather every doctor that ignored our request for a CT scan and I want to tell this how much life is going to change once Tim gets this surgery... I know that they couldnt stop this mass or tumor from happening but they could have found it and treated it before it got so dangerously close to his fourth ventricle. I am lost. I am angry, I am scared beyond words, I am livid, I am tired, and I am hurt. But I have to be strong for Tim.. I have to be strong for my family.. our son.. his parents, our friends... I have to ensure that nothing like this ever happens again and that it never happens again to anyone else.
I dont know what the outcome of all of this is going to be, but I place it in the hands of a dedicated staff and of course in the hands of God. I think that with everything there is a reason for all of this.. and a reason why this has not come up until now.. and when all is said and done Tim has a smile on his face with the mentality of a winner, and that is all the glory I need.
We werent placed in trauma or cardiac this time but in the less severe section of the emergency room. They took Tim for a CT Scan and what they saw was a bleed in his brain. The neurosurgeon came in and they knew it was small, they knew it was blood, but they didnt know why. They did a function test to see how Tim was feeling and if he was competant to anwser questions. She looked at me and said she was amazed that he was walking and talking. Tim laughed and said I worked last week. She said that there will be surgery but they didnt know what or when and then they said that he will be admitted to the neuro ICU for constant monitoring. A second neuro surgeon came in and said a bunch of scary things. how that where the bleed was was centered near the fourth ventricle of his brain and that because the bleed is so close and the ventricle is what drains spinal fluid throughout the body at any time tim would need to be emergency intabated and drained from the brain to relieve some pressure. That freaked me out and that was all that was on my mind after that.
Coming up to the room was very scary because I work here and I know what the neuro icu is like.. nobody walking and talking.. 90% intabated and constantly monitored by nurses, computers, brain monitors. They checked his vision and motor function every hour that night. I was a wreck and constantly stood up to check on him, sit down to relax, stand up again.. but I didnt know what to do with myself, so I went back to Tim's house to try to get some sleep. Which didnt happen at all.. I came back at 630 in the morning and Tim had his MRI done but no results were in... around 11am the head of the neuro surgery department came in and said that they believe that there was a mass of some sort in the brain. He was not sure and wanted to consult with neuro oncology to have a better understanding of what they can do and what was the next step. An entire afternoon went by and then they came back in. I was home because I needed a rest (the wait is the hardest part)
So they said there was defininetly something there.. and that it was there for a while.. in fact it was there last year (august) when he came in and they diagnosed him with kidney failure. But it was not noticed until now (we will get back to that one later) Anyways they said that it grew a tiny bit but now it is pressing against this ventricle and not allowing the spinal fluid to go through.. which is why he has been nauseus, hes been foggy, and have been very irritable. Although the news is devistating we are glad they have finally been able to pinpoint the issue and why this has been happening to him for an entire year straight. They only way I can express the way Tim was feeling was imagine that you have a sharp pain and constant pulsating pressure all over your head, severe neck pain, and then you are so dizzy that you start to get nauseous and then throw up everywhere. It was like that for Tim 24 hours a day seven days a week for an entire year.
So he goes for surgery to take this crap out of his head and determine what the hell it is. Because they have been able to determine that hes had this for so long they are very positive that it is not a cancerous growth because if it was a cancer then he would not be here today to present these problems to everybody.
He was able to get up and take a shower and is the only one that has been able to walk around on the intensive care unit. They all love him although last night when he talked to his best friend from California he was yelling and talking really loud because he was excited to tell him how much he wants to come visit and his whole story. This all sounds like a crazy novel and we like to tell our story because it truly has been a crazy journey thus far.
Although things have been terrible Tim has kept a smile on his face. He is so excited that they found out what it is and to get it out. He is anticipating waking up later from surgery without a headache and to be able to live a normal life again. He said that this alone is worth the scary thoughts of an unsuccessful surgery.
The only frustrating thing about all of this is the fact that we were completely ignored every single time that Tim and I complained of our issues and concerns with obtaining a CT scan and an MRI to just rule out that something was wrong on his brain or in his head. There has been over 200 times that tim has complained to all 40 of his doctors whether it was in transplant, primary care, rheumotolgy, nephrology, cardiology, dialysis, chemo... hemo.. and in the hospital. and not one person gave us a referral to go see a doctor. And then I even told them I would pay out of pocket because I just want to rule out that something is not wrong with his head. I had did my own research and asked numerous doctors about intercranial hypertension and gave them ideas on why that he had these constant headaches but was constantly ignored. Its a terrible feeling to find out we were right about something so dangerous and devistating. I want to scream at the top of my lungs I told you so this entire time. I want to gather every doctor that ignored our request for a CT scan and I want to tell this how much life is going to change once Tim gets this surgery... I know that they couldnt stop this mass or tumor from happening but they could have found it and treated it before it got so dangerously close to his fourth ventricle. I am lost. I am angry, I am scared beyond words, I am livid, I am tired, and I am hurt. But I have to be strong for Tim.. I have to be strong for my family.. our son.. his parents, our friends... I have to ensure that nothing like this ever happens again and that it never happens again to anyone else.
I dont know what the outcome of all of this is going to be, but I place it in the hands of a dedicated staff and of course in the hands of God. I think that with everything there is a reason for all of this.. and a reason why this has not come up until now.. and when all is said and done Tim has a smile on his face with the mentality of a winner, and that is all the glory I need.
Sunday, June 3, 2012
Two Months Post Op- Update
Today marks two months since Tim underwent his kidney transplant. It has been a busyy two months with post operative visits and learning the new medications and adjusting to a new lifestyle. Things are going extremely well. After the transplant Tim has seen the doctors twice a week and has now graduated to twice a month. We had a little bit of a scare in the beginning because his creatinine levels were elevating when we had his dialysis port taken out but the biopsy showed that Mr Bean (our Kid Kidney) is working well and is very happy. We obtained assistance with his prograf medication. The social worker helped us apply for a grant which gives Tim two thousand dollars a year to help pay for the anti rejection medications. The Prograf Medication ran about 400/a month and it was something that we could not afford. The 12 meds he is on a day run about 150/month and on top of the prograf it just was not happening. I am grateful for their generosity and assistance in their continuance help with us.
Although Tim's kidney is functioning well he has had some issues with other things such as headaches and getting sick after some meals. We tried switching around some medications and tomorrow we will be going to yale to get an endoscopy to make sure that everything is okay with his digestive system. With Lupus it can attack any organ at any time, and we have to constantly check everything is something seems a little off. We cannot have another organ turn into scar tissue like it did his kidneys. We have to be very careful and very cautious. With Lupus stomach paralysis is very common. This will rule that out or give us a better understanding on what we have to do to help Tim be able to digest and hold down his food. It could also be the medications but because he was doing this before his transplant and even before dialysis we are not sure that it is medication related. With his headaches I have researched a diagnosis called Intercranial Hypertension which is also common in lupus patients. I am going to talk with his rheumotolgist to see if this is something that Tim could possibly be going through because he constantly has headaches. When he does we check his blood pressure to see if it is low or high but since April 7th it has been pretty stable.
I started my new Job at Yale New Haven Hospital about 3 weeks ago. I like it there and my coworkers are very nice. I have nothing negative ever to say about YNHH and the days go by quickly. I am starting a surgical technicial program in September so hopefully I can get a job working with Transplant and organ delivery which is what I want to focus my career on. I know it hits close to home with everything that is going on with Tim but I feel like I need to give back and utilize my interpersonal skills and knowledge to help out others who have gone through the same things. I enjoy talking to the patients and being an advocate. Anyway I know a lot of people have been asking how Tim was doing so I thought I'd put an update on here. I hope Tim has continued success and these issues can be resolved soon.
~jackie
Although Tim's kidney is functioning well he has had some issues with other things such as headaches and getting sick after some meals. We tried switching around some medications and tomorrow we will be going to yale to get an endoscopy to make sure that everything is okay with his digestive system. With Lupus it can attack any organ at any time, and we have to constantly check everything is something seems a little off. We cannot have another organ turn into scar tissue like it did his kidneys. We have to be very careful and very cautious. With Lupus stomach paralysis is very common. This will rule that out or give us a better understanding on what we have to do to help Tim be able to digest and hold down his food. It could also be the medications but because he was doing this before his transplant and even before dialysis we are not sure that it is medication related. With his headaches I have researched a diagnosis called Intercranial Hypertension which is also common in lupus patients. I am going to talk with his rheumotolgist to see if this is something that Tim could possibly be going through because he constantly has headaches. When he does we check his blood pressure to see if it is low or high but since April 7th it has been pretty stable.
I started my new Job at Yale New Haven Hospital about 3 weeks ago. I like it there and my coworkers are very nice. I have nothing negative ever to say about YNHH and the days go by quickly. I am starting a surgical technicial program in September so hopefully I can get a job working with Transplant and organ delivery which is what I want to focus my career on. I know it hits close to home with everything that is going on with Tim but I feel like I need to give back and utilize my interpersonal skills and knowledge to help out others who have gone through the same things. I enjoy talking to the patients and being an advocate. Anyway I know a lot of people have been asking how Tim was doing so I thought I'd put an update on here. I hope Tim has continued success and these issues can be resolved soon.
~jackie
Thursday, May 10, 2012
Failing Miserably.
I truly don't ever like to admit defeat but I am failing miserably with my goal of losing 80lbs by my wedding September 2013. It is now operation lose 85lbs because I have gained fivelbs since I started this crap. I am depressed and my clothes do not fit me anymore. I wish I could have a second surgery to lose the weight again but I don't have that option. I am not lazy.. I try to stay active and go to the gym as much as I can.. it is the food cravings. When I first had gastric bypass three years ago I could only eat a thumb size portion of food. three years later I am back to eating normal sized portions but on top of that my stomach digests food twice as fast as before.. so I am hungry twice as much as the normal person. It also doesn't help that I haven't been working an active job in quite some time. I hope all of this ends when I start work on Monday. I will be having a heavy position where I am forced to walk 8-10miles per day around the hospital. This should increase my workout and cardio so when I go to the gym at night I can work solely on strength training and toning. I hope that this will get me out of this weight gaining funk.. because I really do not like buying new clothes that are bigger sizes than 10... and it keeps happening.
Monday, April 30, 2012
Eat Fat Get Fit
On one of our walks. Tim has been out of surgery and post transplant for almost a month now. May 3rd will be exactly four weeks and since we have gotten home from yale we have started to walk and hike non stop. We joined LA fitness and ventured to hikes on Castle Craig in Meriden, Sleeping Giant, and the beach. I am trying to maintain a healthier lifestyle. Since surgery on July 07, 2009 I lost 200lbs but since August 11 ive gained back almost 50 of it back. I want to not only look good for my wedding next sept 12 but I want to obtain a fit and active body. By doing this I have a plan. gym daily.. eat out less.. protein, minimal carbs.. and the paleo diet. So far its been a struggle... I have to get out of the habit of wanting fast food or take out. I crave these certain things like burgers and chinese food still.. I need to cook more at home using minimal salt and really taking careful consideration on the intake I eat. I started taking a stimulate called Cellucore Super HD about a week ago.. its twice a day.. one in the morning on an empty stomach, and one about 5-6 hours later... it promotes energy, focus, and appetite curve. It doesnt appear to make me jittery or confused but I have had a headache for the past couple days. That could very well be allergies. I can only take if to 8 weeks on and 4 weeks off.. its around 50 bucks and can be found at GNC on online. so far since ive taken it ive lost 4lbs. I am really worried about my fat/muscle ratio. My fat percentage is 39% which is ridiculous. Tim is like a 17% .. he is in much better physical condition than I am and he had a kidney transplant! but that is why I am trying to work harder in improving my workout regimine.. Eat Fat.. get Fit.
Sunday, April 8, 2012
Rejection-
What is Rejection?
Your body's immune system is designed to seek and destry any foreign object that it finds in your body, such as a cold virus, a flu virus, or a transplanted organ. The process of destroying the foreign object, the transplanted organ, is called rejection. Rejection occurs as your body's immune system responds to the presence of the transplanted kidney. Rejection actually shows that your immune system is working. However, in transplant recipients, this immune response needs to be suppressed to protect the transplanted kidney.
There are several types of kidney rejection. These types are described by the kind of cells causing the rejection, when the rejection occurs, and by the severity of the rejection.
Hyperacute Rejection- occurs within minutes of the kidney transplant. It occurs when the recipient's antibodies immediatly recognize the kidney as forgein and attack it. An antibody is a protein produced by the immune system. Antibodies help the body fight organisims that are recognized as forgein, or not belonging to that body. Hyperacute rejection can not usually be treated and results in the loss of the kidney. A special test called a crossmatch is completed before the kidney transplant to indentify antibodies that could cause hyperacute rejection.
Accelerated Acute Rejection occurs within the first three to seven days after kidney tranplant. It is cause by antibodies that may have been inactive at the time of transplant but get reactivated soon afterwards. This form of rejection is difficult to treat, but there have been recent improvements i treatments for this type of rejection. Patients with High antibody levels are at high rist for developing this rejection. Some transplant centers have special treatment protocols for patients with high antibody levels that are used before they receive a transplant.
The most common form of rejection is acute cellular rejection In this type of rejection, the bodys blood cells identify the kidney as foreign and begin mounting an army of cells to attack the kidney. Although acute rejection can happen at any time, about 15 to 25% of kidney transplant recipients have at least one mild to moderate episode of acute rejection within the first three months after transplant. Acute rejection does not mean that you will lose your transplated kidney, but it is very important that rejection is diagnosed and treated as soon as possible. To help detect rejection, you should have your blood tests completed routinely as requested by your transplant center, and report any symptoms you are having to your transplant center.
If the rejection process does not completely resolve, or if it continues slowly over time this is called chronic rejection. Chronic rejection is more difficult to treat because of more permanent changes in the kidney tissue.
Signs and symptoms of rejection:
Fever greater than 100
Increased kidney function tests (bun and creatinine)
decreased urine output
tenderness over the graft
swelling in hands, eyelids, or lower extremities
weight gain of 2-4lbs in 24 hours
additionally, you doctor may want you to have a kidney biopsy to confirm that your symptoms are caused by rejection.
Your body's immune system is designed to seek and destry any foreign object that it finds in your body, such as a cold virus, a flu virus, or a transplanted organ. The process of destroying the foreign object, the transplanted organ, is called rejection. Rejection occurs as your body's immune system responds to the presence of the transplanted kidney. Rejection actually shows that your immune system is working. However, in transplant recipients, this immune response needs to be suppressed to protect the transplanted kidney.
There are several types of kidney rejection. These types are described by the kind of cells causing the rejection, when the rejection occurs, and by the severity of the rejection.
Hyperacute Rejection- occurs within minutes of the kidney transplant. It occurs when the recipient's antibodies immediatly recognize the kidney as forgein and attack it. An antibody is a protein produced by the immune system. Antibodies help the body fight organisims that are recognized as forgein, or not belonging to that body. Hyperacute rejection can not usually be treated and results in the loss of the kidney. A special test called a crossmatch is completed before the kidney transplant to indentify antibodies that could cause hyperacute rejection.
Accelerated Acute Rejection occurs within the first three to seven days after kidney tranplant. It is cause by antibodies that may have been inactive at the time of transplant but get reactivated soon afterwards. This form of rejection is difficult to treat, but there have been recent improvements i treatments for this type of rejection. Patients with High antibody levels are at high rist for developing this rejection. Some transplant centers have special treatment protocols for patients with high antibody levels that are used before they receive a transplant.
The most common form of rejection is acute cellular rejection In this type of rejection, the bodys blood cells identify the kidney as foreign and begin mounting an army of cells to attack the kidney. Although acute rejection can happen at any time, about 15 to 25% of kidney transplant recipients have at least one mild to moderate episode of acute rejection within the first three months after transplant. Acute rejection does not mean that you will lose your transplated kidney, but it is very important that rejection is diagnosed and treated as soon as possible. To help detect rejection, you should have your blood tests completed routinely as requested by your transplant center, and report any symptoms you are having to your transplant center.
If the rejection process does not completely resolve, or if it continues slowly over time this is called chronic rejection. Chronic rejection is more difficult to treat because of more permanent changes in the kidney tissue.
Signs and symptoms of rejection:
Fever greater than 100
Increased kidney function tests (bun and creatinine)
decreased urine output
tenderness over the graft
swelling in hands, eyelids, or lower extremities
weight gain of 2-4lbs in 24 hours
additionally, you doctor may want you to have a kidney biopsy to confirm that your symptoms are caused by rejection.
Saturday, April 7, 2012
Drugs- How Fun
We were advised that after a transplant Tim would be on some medications for the rest of his life to prevent what is called rejection of the organ. Because our bodies are so good and fighting off disease and foreign objects, someone elses organ falls under that category. We are starting to learn the medications he will be taking and what they are used for. I found this interesting so I thought you would too.. here are the meds and what they do!
1. Tacrolimus aka Prograf is a medication that lowers the bodys ability to fight an infection/disease (this is called an immunosuppression) This helps prevent rejection of a kidney, heart, or liver transplant. This weakens the bodys defense system to help your body accept the new organ as if it was your own. Right now he takes 8 pills every 12 hours. This drug is closely monitored by his team of medical staff and may increase or decrease as time goes on. This medication he will take as long as he has this organ. This medication monthly runs about 300 dollars with his insurance. Without would be about $1400.... yeah.
2. Dapsone- this medication is used to decrease inflammation and stop the growth of bacteria. This is used to treat certain immune system disorders like what Tim has, Lupus. This kind of builds back his immune system and throws it off track while the immunesuppressants are used to take away his immune system. This he takes once a day and is a common medication that costs him about 10$/monthly
3. Labetalol. He takes this medication to control his blood pressure. Because he has excess fluid in his body and the new kidney is adjusting his blood pressure can be a bit on the high side. Also because he is on some steroids that also has a tendency to make his blood pressure high. He has been taking this medication since August and is used to the hypertensive (high blood pressure) drugs. This is a typical cost $10/month drug
4.Nystatin- He takess medication 3 times a day. This is to prevent Thrush and a fungus infection in the mouth. He cannot eat or drink anything for 20 minutes after he takes this. He will only have to take this medication for a few months and then they will take him off that. With the meds that he is taking this is very common to get thrush and can be harmful for people with transplants
5. Acyclovir- No Tim does not have herpes but with people with organ transplant the typical cold sore or chickenpox can be dangerous for him so he is on. It greatly helps people with weakened immune system and can decrease the risk of a virus spreading and causing a major infection somewhere in the body.
6. Prednisone- he takes this once a day. This is also a organ ressistant drug and helps the organ from rejection. This causes some side effects like mood swings and weight gain. Tim was on a much high dose than this since August and has done okay with it. He will taper down slowly and eventually be on a very low dose but for the rest of his life.
7. Cellcept- another anti rejection/ immunosuppressant drug. He takes every 12 hours.. 1000 mg's.. which is about 4 tablets twice a day.
8. Plaquenel- is a immunosuppressant drug that throws the immune system off course. He takes this twice a day and this helps trick the immune system for his lupus. This has been very effective since he has been in remission since August when he was diagnosed.
9. Reglan- This is taken with every meal and also at bed time. This helps with his stomach. He has formed a bit of what is called gastroparesis (paralysis in his stomach) and it is very hard for him to digest his food. This helps tremendously. He has been on this since December of 2011.
10. Stool Softners.. two of them.. because of all the meds there can be an issue with constipado.
11. Tylenol with condiene- he never needs pain medication but just incase they prescribe him that.
So 11 meds.. about 30 pills a day.. and Tim gets to live with his new buddy and have a second chance at life. It is important to understand that this isnt a cure for Tim.. he will always have End stage Kidney Failure and Lupus Nephritis.. however this is a new way of handeling it. Some people choose dialysis.. others who are fortunate can obtain a transplant. There are 800,000 people in need of a new kidney and only about 10,000 a year obtain one from a living or recently deceased donor. If you or someone you know would like to be a living Donor go to Donatelife.org and make sure when you renue your license you put donor.. You dont always have to donate life while you are alive.. you can help someone in need when your time is done here on Earth!
1. Tacrolimus aka Prograf is a medication that lowers the bodys ability to fight an infection/disease (this is called an immunosuppression) This helps prevent rejection of a kidney, heart, or liver transplant. This weakens the bodys defense system to help your body accept the new organ as if it was your own. Right now he takes 8 pills every 12 hours. This drug is closely monitored by his team of medical staff and may increase or decrease as time goes on. This medication he will take as long as he has this organ. This medication monthly runs about 300 dollars with his insurance. Without would be about $1400.... yeah.
2. Dapsone- this medication is used to decrease inflammation and stop the growth of bacteria. This is used to treat certain immune system disorders like what Tim has, Lupus. This kind of builds back his immune system and throws it off track while the immunesuppressants are used to take away his immune system. This he takes once a day and is a common medication that costs him about 10$/monthly
3. Labetalol. He takes this medication to control his blood pressure. Because he has excess fluid in his body and the new kidney is adjusting his blood pressure can be a bit on the high side. Also because he is on some steroids that also has a tendency to make his blood pressure high. He has been taking this medication since August and is used to the hypertensive (high blood pressure) drugs. This is a typical cost $10/month drug
4.Nystatin- He takess medication 3 times a day. This is to prevent Thrush and a fungus infection in the mouth. He cannot eat or drink anything for 20 minutes after he takes this. He will only have to take this medication for a few months and then they will take him off that. With the meds that he is taking this is very common to get thrush and can be harmful for people with transplants
5. Acyclovir- No Tim does not have herpes but with people with organ transplant the typical cold sore or chickenpox can be dangerous for him so he is on. It greatly helps people with weakened immune system and can decrease the risk of a virus spreading and causing a major infection somewhere in the body.
6. Prednisone- he takes this once a day. This is also a organ ressistant drug and helps the organ from rejection. This causes some side effects like mood swings and weight gain. Tim was on a much high dose than this since August and has done okay with it. He will taper down slowly and eventually be on a very low dose but for the rest of his life.
7. Cellcept- another anti rejection/ immunosuppressant drug. He takes every 12 hours.. 1000 mg's.. which is about 4 tablets twice a day.
8. Plaquenel- is a immunosuppressant drug that throws the immune system off course. He takes this twice a day and this helps trick the immune system for his lupus. This has been very effective since he has been in remission since August when he was diagnosed.
9. Reglan- This is taken with every meal and also at bed time. This helps with his stomach. He has formed a bit of what is called gastroparesis (paralysis in his stomach) and it is very hard for him to digest his food. This helps tremendously. He has been on this since December of 2011.
10. Stool Softners.. two of them.. because of all the meds there can be an issue with constipado.
11. Tylenol with condiene- he never needs pain medication but just incase they prescribe him that.
So 11 meds.. about 30 pills a day.. and Tim gets to live with his new buddy and have a second chance at life. It is important to understand that this isnt a cure for Tim.. he will always have End stage Kidney Failure and Lupus Nephritis.. however this is a new way of handeling it. Some people choose dialysis.. others who are fortunate can obtain a transplant. There are 800,000 people in need of a new kidney and only about 10,000 a year obtain one from a living or recently deceased donor. If you or someone you know would like to be a living Donor go to Donatelife.org and make sure when you renue your license you put donor.. You dont always have to donate life while you are alive.. you can help someone in need when your time is done here on Earth!
Thursday, April 5, 2012
Adopting a Kid(ney)
Well, all these months of worry and heartache about Tim receiving a kidney from his Uncle Kenny is finally a thing of the past. I was not worried about him needing a kidney transplant, but moreso going under for surgery. But with faith in God and faith in his team of hundreds of Doctors and Surgeon's this entire experience has been amazing.
The week before surgery Tim had to be cleared by all his specialist doctors. We had to go see his cardiologist and have a EKG and Echocardiogram to determine if he still had a plueral effusion around his heart (fluid). It had subsided around September but just to make sure everything went smoothly they wanted to double check. He still had some fluid around in there but nothing compared to when he was admitted in August for his cardiac emergency. Next we went to Tim's nephrologist (kidney Doctor) and had to be cleared by him. We have a fantastic relationship with this doctor as we have seen him every couple weeks since August. We knew he was on board with this transplant since day one so meeting with him was almost routine and he was cleared right away. He sat with us and explained that they are very excited to get this done for Tim and anticipated a great transplant story when this is all over. He was very comforting to me and told me to call him whenever I needed (or Text) if I needed someone to talk to. I thought that was very kind of him. (I only contacted him after the surgery to tell him the great news of success) and lastly we had to be cleared by rheumotology. That team decided in January that he was not ready for transplant as they did not know if the lupus would stay in remission. (they didnt want to risk the new kidney being affected by his disease)... we were most nervous about this because they could have been the deal breaker but even that was a piece of cake... Pre-Op was the Friday before surgery... and we were up and at the hospital from 6am to about 4pm.. he had an appointment to meet the anisthesiologist who was going to be in charge of putting him in his sleep for the surgery as well has his surgeon who was going to perform the surgery.
They were all pretty calm, nice, and funny with everything which made us more comfortable with the entire thing. The fact that these doctors are not uptight and arrogant makes it a lot better for me because I don't think anyone is better than anyone.. although I do find it admirable that they get to do this for a living.
The weekend flew by and we kept ourselves busy buy fixing the breaks on my car and taking Tim's son Jake to a bunch of fun places and Monday we kept calm by sitting in bed, spending some quality time together and watching House (I know... morbid right??)
The alarm beeped at 545 on tuesday but my eyes were already open. I turned over and Tim was snoring like he was having the best sleep of his life and our 30lb cat right by his side sprawled out in the middle of both of us snoring and probably dreaming about going outside and chasing squirrels. I listened as Tim's parents got up and put the coffee machine on, took turns in the bathroom and getting ready for the big day... I shut the alarm off and Tim's eyes opened. The deep blue eyes stared at me for about a minute as we sat there in silence.. He was as anxious as I was scared and together we got up and got dressed. We packed a few pairs of socks, underwear, and shirts... and the four of us got into the car and began our journey to Yale.
We got there around 6:30am and signed in. We were a half hour early but that was fine by us. about 10 of 7 Tim kissed his mom and dad goodbye and we took the elevator up to the third flood and signed him in. They checked his blood pressure which was slightly elevated but not enough to send him home (the nurse said) they had him slip into a baby purple Johnny coat and a baby blue hair net. The anisthesiologist came in and said hello. He couldnt have been any older than Tim.. explained to us about what they were going to do and put his IV in his arm. Tim joked around with him because at first he couldnt find the vein and said.. I hope you arent the one putting the kidney in!! (I shook my head).. the Dr. was hysterically laughing though and replied.. not incharge of the Kidney just incharge of your coma.. (too funny).. The surgeon came in and said hello.. and then around 8am.. his bed showed up and he was on his way. I watched him wheel off and gave him a kiss, told him I loved him and by 815 he was in the operating room.
Tims uncle was also in the same area as we were while they were prepping him for surgery. He went under about a half hour before Tim and by 1030 he was out of surgery. my heart skipped a beat when his Aunt called and said that the surgeon wanted to talk to her.. I got up and ran to the waiting room. She was already in talking with the Dr. She came out and said that everything went beautiful and that his kidney was very healthy and they were going to use it for the transplant. My chest felt like an elephant was sitting on it. Either I was going into cardiac arrest or I was so excited for the success of the Nephrectomy (Kidney extraction).. I sat with Aunt Angelyn until they allowed her to see Kenny (the donor) and I went downstairs. My best friend Fran was at the hospital giftshop waiting for me. We all sat down next to Tims parents and talked for about an hour. The surgeon paged us and we went upstairs and around 12pm and said that everything went awesome. He has a greek accent so it was hard to understand him because he talks so fast but we got out of it that he was doing great and making the pee pee... hahahaha.. So then we just waited for him to sleep for 90minutes and Tims mom and I went in to see him.. His anisthesiologist came up to me and said.. I didnt want you to see me eating lunch and wonder why he was out of surgery (lol they know im crazy) and said that his surgery went great and assured me that everything was fine. We saw Tim and being the jokester that he is asked who I was.. he knew I was so scared.. we laughed and within a half hour they had him up to his room. He was pain free thanks to the morphine pump. (more to come... im hungry)
The week before surgery Tim had to be cleared by all his specialist doctors. We had to go see his cardiologist and have a EKG and Echocardiogram to determine if he still had a plueral effusion around his heart (fluid). It had subsided around September but just to make sure everything went smoothly they wanted to double check. He still had some fluid around in there but nothing compared to when he was admitted in August for his cardiac emergency. Next we went to Tim's nephrologist (kidney Doctor) and had to be cleared by him. We have a fantastic relationship with this doctor as we have seen him every couple weeks since August. We knew he was on board with this transplant since day one so meeting with him was almost routine and he was cleared right away. He sat with us and explained that they are very excited to get this done for Tim and anticipated a great transplant story when this is all over. He was very comforting to me and told me to call him whenever I needed (or Text) if I needed someone to talk to. I thought that was very kind of him. (I only contacted him after the surgery to tell him the great news of success) and lastly we had to be cleared by rheumotology. That team decided in January that he was not ready for transplant as they did not know if the lupus would stay in remission. (they didnt want to risk the new kidney being affected by his disease)... we were most nervous about this because they could have been the deal breaker but even that was a piece of cake... Pre-Op was the Friday before surgery... and we were up and at the hospital from 6am to about 4pm.. he had an appointment to meet the anisthesiologist who was going to be in charge of putting him in his sleep for the surgery as well has his surgeon who was going to perform the surgery.
They were all pretty calm, nice, and funny with everything which made us more comfortable with the entire thing. The fact that these doctors are not uptight and arrogant makes it a lot better for me because I don't think anyone is better than anyone.. although I do find it admirable that they get to do this for a living.
The weekend flew by and we kept ourselves busy buy fixing the breaks on my car and taking Tim's son Jake to a bunch of fun places and Monday we kept calm by sitting in bed, spending some quality time together and watching House (I know... morbid right??)
The alarm beeped at 545 on tuesday but my eyes were already open. I turned over and Tim was snoring like he was having the best sleep of his life and our 30lb cat right by his side sprawled out in the middle of both of us snoring and probably dreaming about going outside and chasing squirrels. I listened as Tim's parents got up and put the coffee machine on, took turns in the bathroom and getting ready for the big day... I shut the alarm off and Tim's eyes opened. The deep blue eyes stared at me for about a minute as we sat there in silence.. He was as anxious as I was scared and together we got up and got dressed. We packed a few pairs of socks, underwear, and shirts... and the four of us got into the car and began our journey to Yale.
We got there around 6:30am and signed in. We were a half hour early but that was fine by us. about 10 of 7 Tim kissed his mom and dad goodbye and we took the elevator up to the third flood and signed him in. They checked his blood pressure which was slightly elevated but not enough to send him home (the nurse said) they had him slip into a baby purple Johnny coat and a baby blue hair net. The anisthesiologist came in and said hello. He couldnt have been any older than Tim.. explained to us about what they were going to do and put his IV in his arm. Tim joked around with him because at first he couldnt find the vein and said.. I hope you arent the one putting the kidney in!! (I shook my head).. the Dr. was hysterically laughing though and replied.. not incharge of the Kidney just incharge of your coma.. (too funny).. The surgeon came in and said hello.. and then around 8am.. his bed showed up and he was on his way. I watched him wheel off and gave him a kiss, told him I loved him and by 815 he was in the operating room.
Tims uncle was also in the same area as we were while they were prepping him for surgery. He went under about a half hour before Tim and by 1030 he was out of surgery. my heart skipped a beat when his Aunt called and said that the surgeon wanted to talk to her.. I got up and ran to the waiting room. She was already in talking with the Dr. She came out and said that everything went beautiful and that his kidney was very healthy and they were going to use it for the transplant. My chest felt like an elephant was sitting on it. Either I was going into cardiac arrest or I was so excited for the success of the Nephrectomy (Kidney extraction).. I sat with Aunt Angelyn until they allowed her to see Kenny (the donor) and I went downstairs. My best friend Fran was at the hospital giftshop waiting for me. We all sat down next to Tims parents and talked for about an hour. The surgeon paged us and we went upstairs and around 12pm and said that everything went awesome. He has a greek accent so it was hard to understand him because he talks so fast but we got out of it that he was doing great and making the pee pee... hahahaha.. So then we just waited for him to sleep for 90minutes and Tims mom and I went in to see him.. His anisthesiologist came up to me and said.. I didnt want you to see me eating lunch and wonder why he was out of surgery (lol they know im crazy) and said that his surgery went great and assured me that everything was fine. We saw Tim and being the jokester that he is asked who I was.. he knew I was so scared.. we laughed and within a half hour they had him up to his room. He was pain free thanks to the morphine pump. (more to come... im hungry)
Tuesday, March 13, 2012
Mein Versuch zu blog in Deutsch
Ich versuche, die Software zu übersetzen, damit ich mein englisch auf deutsch halten können die Aktualisierung alle meine Blogs und wie Tim tut. Er soll für seine transplantation on April 3rd. Er wird 10-14 Tage im Krankenhaus verbringen zu vergewissern, dass die niere wurde erfolgreich in Tim und, dass es gut funktioniert. Er wird lernen, wie man seine Nieren- und auch die pillen zu helfen halten seine neue niere gesund. Wir freuen uns sehr, dass ich diese Chance so bald nach der im vergangenen August wurde er diagnostiziert wird.Sein onkel ist ein Gott senden. Bitte beten sie für Tim und informieren sie uns alle in deinen Gedanken! Vielen Dank!
Friday, March 2, 2012
Down in the Dumps?
48 things to be grateful for
Everything is possible
I’ll tell you a little secret, except it’s not secret at all: There are no limitations on how you can live your life. EVERYTHING. IS. POSSIBLE. Now, if that’s not something to be grateful for (every day!), then we need to have a serious talk.Dreams in the making
Are you a girl on a mission? Are you making conscious choices and living the life you want to live? Are you on your way to dream come true? Be grateful for the path you’re on, the joy it gives you and the hope you’re experiencing.Dreams come true
Even better! Make a list of all the dreams you’ve had that you made come true! This list will be the ultimate inspiration list to achieve even more and bigger goals.Being able to help others
Be grateful when you find yourself in a position to help others, because it means you are abundant. Think of it this way: You are so plentiful, you are filled to the brim, you have more to give! It’s a wonderful situation to be in, and think about how you are making an impact on someone else’s life.Family
Familiy is familiy, and no matter if you’re close or not – think about what your family members actually mean to you. It’s well worth your time to take a few moments and appreaciate all the good things about your family. Bonus points if you call your mum and thank her for everything she has ever done for you !
Friends
It’s easy to be grateful for good friends. Do you remember to tell them too? For your own sake, it can be really nice to write a list of all your friends and a little note on what about each one you’re grateful for.
Being thought of
“I’ll think about you,” she said while I was standing on her doorstep, tears flowing down my cheeks. Being thought of, especiall during hard times, really means a lot, and to this day, I am so grateful for those four words she said before I left. Is anyone thinking of you right now? Maybe someone is worried about you? Or just really care? (Or maybe someone is deeply in love and can’t stop thinking about you!?) Time to add it to your list of wonderful things to be grateful for.Moments with strangers
Sometimes a shared moment with a stranger makes your day really special. It’s when you see something funny and realize the person next to you on the bus saw the same thing and is trying to keep his laughter in. You eyes meet for a second, and suddenly you’re both laughing out loud. He’s getting off at the next stop and you’ll probably never see each other again, but that moment probably made both of your days. That moment – be grateful for it. Just thinking about it will make you smile.Your strength
You are probably stronger than you think! Being grateful for what you have achieved, endured and lived through can only lead to good things. Take a moment and appreciate what you’re good at, how well you manage. Well done!
Good health
Health is the most imporant thing, and yet we often take our good health for granted. Even if you’re not in perfect health at the moment, it is possible to be grateful for what you have, when you feel better, that it ain’t worse.Opportunities
It’s easy to be grateful when a wonderful opportunity opens up, but gratitude can also work the other way around. Be grateful for opportunities and look back at the last few days. What kind of opportunities were you given? Does something strike you as a great opportunity now that you didn’t immediately realize then? For example – invites, requests, demands of attention, changes of plans might look more like an opportunity now than it did when you were first presented for it.
The place you were born
Chances are, if you’re reading this right now, that you live in a well-developed and modern country. It’s so easy to take this for granted! Personally, I’m lucky to be living in one of the richest countries in the world (thank you, oil), and I very often take that for granted. Think about all the benefits of living where you do – do you have great health care, universities, media industry or sunshiny warm weather? Do you have the best food tradition, holiday locations or job opportunities? Even if you don’t have it all – appreciate what you’ve got!
Your job
In uncertain times, you can be grateful for your job. Even if you don’t like what you’re doing, or you’re paid next-to-nothing, there are always things to be grateful for: the best boss, co-workers, work-time or the prettiest view from the office. You have wonderful customers or clients, great opportunities or are you just lucky to have a job at all? There are positive sides and lots of gratitude potential in your job!
Your wealth
Food on the table, money to spare, money in the bank, enough to come by, 5 dollars for a magazine, a small side-income, making money doing your thing – rather than focusing on what you’re lacking – focus on what you’ve got.
Great conversations
This is one of my favourites. I really, truly, deeply, appreciate a good and interesting conversation. When was the last time you had one?
Change
Most people fear change. This is where you use gratitude to really help you through. It’s so easy to find ways that change will be bad, but take five minutes and think about what you appreaciate with the changes you’re facing. Can you find room for being grateful for change too?
Health care
I’m really grateful for all the help I’ve ever received (and am still receving) from all the wonderful people who make it their mission to help and care for others. Instead of feeling bad about your illness and hurt, focus on your gratitude. I’m sometimes amazed at how wonderful it is that us human beings take care of each other in this way.
Help from others
Up the same alley, has anyone helped you today? People interact and help each other every day, so chances are that you’ve received help in any way. Look out for help in disguise! People might be trying to help even if you don’t realize it right there and then.
Fresh starts
If you’ve ever been given a second chance, you know what I’m talking about here. Fresh starts, new chances and big life changes are wonderful and easy to appreciate. However, have you ever thought about that every single day is a fresh start? I am grateful for this day.
Good food
Food on the table is a basic human need and if you’ve never starved – easy to take for granted. I’m not saying you have to be grateful for food just because you have it and others don’t (although you should seriously consider it), but how about being grateful for a wonderful and tasty meal? Sometimes I’m so grateful for chocolate it feels like I’m going to explode with joy!
Inspiration
You can always be grateful for inspiration. I’m willing to bet that you find a lot of inspiration around you to be grateful for if you look a little closer! For example, I’m very grateful for really inspiring blogs, books, poetry, and photography that inspires me every day. Which inspiration sources are you grateful for right now?
Smiles
Let’s be grateful for smiles together! Smiles from a stranger, a loved one or in a photo – smiling is contageous! Be greateful for the smiles others gift you with, and be grateful for your own ability to smile and spread love and happiness.
Education
If you’re fortunate enough to receive a good education, this is something you can be grateful for. How about thanking your teachers and professors, your parents if they pay for your college or be grateful for your own intelligence and ability to learn.
Synchronicity
Synchronicity is when you’ve just decided pursue a career and then immediately meet someone who is willing to be your mentor. Synchronicity is when you’ve decided to use the colour green to brand your business and you suddenly is surrounded by green everywhere. Synchronicity is when you think about a friend and then suddenly your friend calls! It’s the most wonderful thing in the world, and if something like this has happened to you lately – be grateful for it because it doesn’t happen all that often!
Shared or aquired wisdom
Sometimes people share their wisdom without even noticing, so be on the lookout for shared wisdom in disguise. In addition, people often deliberately want to share their wisdom because they care about you! It’s a nice thing to be greateful – give thanks – and to look at each little piece of wisdom as a blessing. Aquired wisdom is when you suddenly realize something, make a connection or learn from your mistakes. Be greateful for your own insight, your knowledge and your wisdom!
Painful lessons
Some of life’s lessons are inevitably going to be painful. However, I often find that the harder the lesson – the more potential for growth it represents. Being grateful for life’s hard lessons, for the pain and the suffering – because it will help you grow – is a really nice way to turn something bad into something good.
A great book
Getting lost in a really good novel, or diving into a great non-fiction read is a wonderful feeling. The next time you sit down to read, send a little thought of gratitude to the author of the book, and be grateful for the book itself. Sometimes it amazes me how words on paper can bring me so much joy!
Great music
For the same reasons as above, music has the power to transform your mood and nothing is better than some music to dance to while you do your chores! The next time you enjoy listening to music, send a little thought of thanks to the musicians, the song-writers, the producers and the artist. Appreciating the people who contribute to make magical music will make you feel good as well.
Art
The next time you appreciate a work of art, focus your gratitude towards what the artwork gives you. Inspiration? Motivation? A sense of belonging? Do you feel anger? Disgust even? Focus on how the work of art makes you feel and focus your gratitude on the artworks ability to move you. Most of all, I feel grateful when I come upon a work of art that calms me down, but I’m working on that sense of gratitude for other kinds of art too.
The small things
The magic really is in the small things. That’s why I tend to focus on these when I do my gratitude tweets. A tasty treat, a cup of tea, sunshine through my window, a small moment of joy – all are really small things that give me tremendous amounts of happiness.
Pets
If are lucky enough to have a pet, you know how much joy and company it brings. I think everyone who has a cat, dog, horse or turtle (oh yes!) feels that their pet is the best one in the world – and it is! So, if you’re feeling low, tired or depressed, just be grateful for the moments when your dog greets you at the door, when your cat sneak up against you to cuddle or when your turtle smiles (apparently they do!).Connections
Connections are wonderful to include in your gratitude practice. The really strong connections you have with the people closest to you – or a shared smile with a stranger on the bus. All connections are sacred and mean so much to us. Take a moment to think back on the connections you’ve made the last day. Grateful?
Kindness
Most people automatically give thanks when they recognize kindness in other people. So there are two more ways to be grateful for kindness: You can try to recognize it more, which means to actively be on the lookout. Can someone’s action be interpreted in a way that means they are actually trying to be kind? For example, that person who uses ages to order in a coffeeshop might actually be buying coffee to all of his friends. Or your flatmate who never cleans might be the too busy taking care of the people around her.
The other way you can be greateful for kindness is to do it consciously, not automatically. Look at how many times during one day you say “thanks”. How many of those times do you really mean it? How do you think it would make you feel if you managed to do it consciously every time? I’m willing to bet it would give you a lot of smiles and happiness.
Insight and clarity
You know when you look back at something that has been bothering you and suddenly see it in a different light? Or when you manage to make a really good decision in the middle of chaos? Add it to your grateful list and let the happiness you get from it grow!
Perspective
Looking at things in perspective is another one of life’s blessings. And it’s so much easier in hindsight than in the moment! Be greateful when you manage to look at a situation differently, from another persons point of view or you see consequences for different actions. Seeing things from another person’s perspecitve is often painful and hard, and it will often make us grow as human beings. Being able to feel gratitude when looking at a time when you experienced painful growth will double it!
Life
So easy to overlook, but so so fundamental. Be grateful for being alive!
Time
Free time, an open calendar, time off, fun times – be grateful for the time you have to do what you love. Even if you are super-busy, do you have the time of your life? Add it to your grateful list for an instant positive mood-booster.
Beauty
No need to explain this one, I just want to remind you to be grateful for all the beauty in your life. So easy to include in your daily grateful list!
Daylight
If you live in country with only 6 hours (or less) of daylight in the winter (like me), you’ll learn to appreciate the daylight when you have it. What are you grateful for right now that you wish you could have more of?
Memories
If you’re lacking of things in your present to be grateful for (look harder, dear!), look to your past. Focus on those good memories that make you smile!
Good service
… is often taken for granted, as we tend to focus on the times when we receive our coffees from the really grumpy barista, not the nice one who remember your daily order. How about thanking the staff next time you receive good service?
Gifts
No explanation needed here, just want to remind you that gifts come in a lot of different ways.
Creativity
Be thankful for the times when you can’t hold it in, when you just want to create, create, create. God a new creative idea? Add it to your list of things to be grateful for!
Your special talents
Can you remember almost any number combination? Do you write the most sparkly application letters? Or can you balance three grapes on your nose while singing a song? (lucky you!) Be grateful for your special talents, the cherry on top of the cake of you!
A good cup of coffee or tea
Well, I know I included this in the list of the small things, but a good cup of anything hot usually sneaks in on most of my grateful lists. Lavender earl grey latte, coffee with milk, red berry rooibos – I’m bursting with gratefullness for the ease it gives me. How about you?
Love
It’s to the end of the list, but it’s not because it isn’t important! Love in any form – just the thought of it will make you smile. I think there’s nothing in the world that makes me more grateful than the love I’m feeling from the people around me, and the love I’m giving in return. Are you experiencing love? Big life-changing-, deep mother-daughter-, or instant take-out-the-fire-exstinguisher-LOVE: I’m willing to bet that love is part of the solution to the meaning-of-life riddle.
Generosity
Look out for generosity and be grateful for the people who are! Generosity comes in a number of ways, people can for example be generous with their time, attention, help, advice or money. It’s easy to remember to be grateful when money and things are involved, but remember to keep an eye out for other kinds of generosity too.Having something to look forward to
Last, but not least (as this list is not in any order), be grateful for the things you are looking forward to in your life right now. Are you planning a journey, starting something new or are you just looking forward to your friends birthday party? Thinking about something great that will happen in the future is an instant way to feeling good right now. Think about it this way; being grateful for something in the future now will double the fun!
Sunday, February 26, 2012
Just a side note-
I go to bed at night thanking God that I had today and hope for a tomorrow. I sometimes watch Tim as he sleeps. The sounds of his dialysis machine fills the room with a soft noise that eventually erases from my ears and I too fall asleep. But on an honest note there are times when falling asleep just isn't an option for me. I toss and turn thinking about the day and it's content and I often recite the past couple months through my head over and over thinking about what could have been different to prolong what has happened. I don't have an anwser and I won't ever have an anwser. Thinking we could have changed something we did is just being in denial. Nobody knows why Lupus happened to him and why it caused his kidneys. Nobody knows why there is not a cure for kidney disease and nobody knows what the outcome is going to be with all of this. I repeat these thoughts in my head over and over again and eventually I drift into sleep but then wake up throughout the night having these thoughts linger in my head. Sometimes I have realistic dreams of everyday situations.. some dreams of health and happiness and other nights.. well lets just say that my dreams aren't of happy things. I needed to talk to someone, to stress what I was going through tonight and I thought it would be a good thing to write about this. Someone reached out to me the other day and asked how I was and told me that she often reads my blog but wanted to know how I was Really feeling and I got to thinking... I am not always strong and collected and I don't always have a positive attitude with all of what is going on but, I try my hardest to stay strong for those who are around me and those that need a positive encouragement. Sometimes I am the one that needs the shoulder or the crutch but my entire life I have always stood up and stood strong in hard situations and found that to be therapeautic for me as well. Anyway.. maybe writing this will help me stay asleep tonight. Maybe I can sleep an entire 8 hours without waking up with another thought in my head. Goodnight .
-Jackie
-Jackie
Monday, February 13, 2012
What to expect with a new Kidney
A kidney transplant is surgery to replace your own diseased kidneys with a healthy (donor) kidney. See a picture of a kidney transplant 
. There are two types of donors:
You will need to have tests to make sure the donor kidney matches your tissue type and blood type. This helps reduce the chances that your body will reject the new kidney. You will also be evaluated to make sure that you do not have significant heart or lung disease or other diseases, such as cancer, which might decrease your life span.
Kidney transplant surgery takes about 3 hours. During surgery, the donor kidney will be placed in your lower abdomen, blood vessels from the donor kidney will be connected to arteries and veins in your body, and the ureter from the donor kidney will be connected to your bladder. Blood is then able to flow through the new kidney, and the kidney will begin to filter and remove wastes and to produce urine.
The new kidney usually begins to function right away. In most cases, diseased or damaged kidneys are not removed unless you have a severe infection of the kidney (pyelonephritis), kidney cancer, nephrotic syndrome, or extremely large polycystic kidneys.
For more information, see the topic Organ Transplant.
After the surgery you will have to take medicines, such as prednisone, azathioprine, and cyclosporine, to suppress your immune system. These medicines are used to help keep your body from rejecting your new kidney. You will need to take these medicines for the rest of your life.
During the first weeks to months after your surgery, your body may try to reject your new kidney. This is called acute rejection and occurs in 25% to 55% of people after transplant. Most of the time, acute rejection can be treated with immunosuppressive medicines.
Chronic rejection is a process of gradual, progressive loss of kidney function and can occur many months to several years after your surgery. Experts don't fully understand what causes chronic rejection. There is no treatment for chronic rejection. Most people go back on dialysis or have another transplant.
Transplants using a kidney from a first-degree relative, such as your father, mother, brother, or sister, are the most successful. And transplants from living donors are usually more successful than transplants from deceased donors.1
There is often a long wait before you receive a donor kidney. And there is no guarantee that the transplant will be successful. Fewer complications occur in people who are good candidates for surgery and who do not have other serious medical conditions, such as unstable coronary artery disease or cancer, that may limit their life expectancy.
Not everyone is able to have a kidney transplant. You will not usually have a kidney transplant if you have an active infection or another life-threatening disease, such as cancer or significant heart or lung disease.
After having a kidney transplant, you will have to take medicines that suppress your immune system (immunosuppressive medicines), such as prednisone, azathioprine, tacrolimus, and cyclosporine, to help prevent your body from rejecting the new kidney. You will need to take these medicines for the rest of your life. Because these medicines weaken your immune system, you will have an increased risk for serious infections. There is also the chance that your body may still reject your new kidney even if you take these medicines. If this happens, you will have to start dialysis and possibly wait for another kidney transplant.
Immunosuppressive medicines also increase your risk of other diseases, such as skin cancer, lymphoma, and Kaposi's sarcoma. You have a greater risk for diabetes, high blood pressure, heart disease, cataracts, and inflammation of the liver (cirrhosis) if you are taking these medicines.
Complete the surgery information form (PDF)
(What is a PDF document?) to help you prepare for this surgery.
. There are two types of donors:- Living donors. A living donor may be a family member, a friend, a coworker, or any person who is willing to give a kidney to someone in need. A person only needs one healthy kidney to live.
- Cadaver donors. A cadaver donor is someone who has recently died. Most donor kidneys come from this source.
Most urinary tract infections (UTIs) involve only the bladder and urethra (the lower urinary system). Pyelonephritis results when a UTI progresses to involve the upper urinary system (the kidneys and ureters). Pyelonephritis is a potentially serious kidney infection that can spread to the blood, causing severe illness. Fortunately, pyelonephritis is almost always curable with antibiotics. The kidneys filter the blood to produce urine. Two tubes called the ureters carry urine from the kidneys down...
You will need to have tests to make sure the donor kidney matches your tissue type and blood type. This helps reduce the chances that your body will reject the new kidney. You will also be evaluated to make sure that you do not have significant heart or lung disease or other diseases, such as cancer, which might decrease your life span.
Kidney transplant surgery takes about 3 hours. During surgery, the donor kidney will be placed in your lower abdomen, blood vessels from the donor kidney will be connected to arteries and veins in your body, and the ureter from the donor kidney will be connected to your bladder. Blood is then able to flow through the new kidney, and the kidney will begin to filter and remove wastes and to produce urine.
The new kidney usually begins to function right away. In most cases, diseased or damaged kidneys are not removed unless you have a severe infection of the kidney (pyelonephritis), kidney cancer, nephrotic syndrome, or extremely large polycystic kidneys.
For more information, see the topic Organ Transplant.
What To Expect After Surgery
You will have to stay in the hospital for 7 to 10 days after you receive your new kidney. In some cases, it may take time for your new kidney to produce urine. So you may have to receive dialysis and take medicines, such as diuretics, that help your new kidney get rid of excess water and salt from your body.After the surgery you will have to take medicines, such as prednisone, azathioprine, and cyclosporine, to suppress your immune system. These medicines are used to help keep your body from rejecting your new kidney. You will need to take these medicines for the rest of your life.
During the first weeks to months after your surgery, your body may try to reject your new kidney. This is called acute rejection and occurs in 25% to 55% of people after transplant. Most of the time, acute rejection can be treated with immunosuppressive medicines.
Chronic rejection is a process of gradual, progressive loss of kidney function and can occur many months to several years after your surgery. Experts don't fully understand what causes chronic rejection. There is no treatment for chronic rejection. Most people go back on dialysis or have another transplant.
Why It Is Done
During kidney transplant surgery, a healthy kidney (donor kidney) replaces the lost function of your own damaged kidneys. Kidney transplant is used when you have severe chronic kidney disease (renal failure) that cannot be reversed by another treatment method. You will not be able to have this surgery if you have an active infection, another life-threatening disease such as cancer, or severe heart or lung disease.How Well It Works
If you have severe chronic kidney disease and choose to have a kidney transplant, you may live longer than if you choose only to treat your kidney disease with dialysis alone. 1Transplants using a kidney from a first-degree relative, such as your father, mother, brother, or sister, are the most successful. And transplants from living donors are usually more successful than transplants from deceased donors.1
Risks
The risks of having a kidney transplant include:- Rejection of the new kidney.
- Severe infection.
- Bleeding.
- Reaction to the anesthesia used for surgery.
- Failure of the donor kidney.
What To Think About
Kidney transplant may be a better treatment for you than dialysis, because survival rates are better after transplant. You will also be able to live a more normal life, because you won't have to have dialysis. Although a kidney transplant is an expensive procedure, it may actually be less costly than long-term dialysis treatments.There is often a long wait before you receive a donor kidney. And there is no guarantee that the transplant will be successful. Fewer complications occur in people who are good candidates for surgery and who do not have other serious medical conditions, such as unstable coronary artery disease or cancer, that may limit their life expectancy.
Not everyone is able to have a kidney transplant. You will not usually have a kidney transplant if you have an active infection or another life-threatening disease, such as cancer or significant heart or lung disease.
After having a kidney transplant, you will have to take medicines that suppress your immune system (immunosuppressive medicines), such as prednisone, azathioprine, tacrolimus, and cyclosporine, to help prevent your body from rejecting the new kidney. You will need to take these medicines for the rest of your life. Because these medicines weaken your immune system, you will have an increased risk for serious infections. There is also the chance that your body may still reject your new kidney even if you take these medicines. If this happens, you will have to start dialysis and possibly wait for another kidney transplant.
Immunosuppressive medicines also increase your risk of other diseases, such as skin cancer, lymphoma, and Kaposi's sarcoma. You have a greater risk for diabetes, high blood pressure, heart disease, cataracts, and inflammation of the liver (cirrhosis) if you are taking these medicines.
Complete the surgery information form (PDF)
(What is a PDF document?) to help you prepare for this surgery.Wednesday, January 25, 2012
Tachycardia- High Pulse Rate and Update on Tim.
I posted on Facebook an update on Tim but I also like to update things on here because a lot of people read this and are interested in Tim's updates. I also like to type up things that I've learned along the way not just with Kidney Disease but other things that can be associated with the disease and other co-morbitites and other aspects of life to look out for. It has been three weeks since Tim was admitted to yale for his dialysis port. He has been healing well with the peritoneal port and his hemo dialysis port no longer is in. Taking out the hemo port which was a cathater that was inserted into the main artery in his neck took all about 15 minutes to take out. They cleaned the area, numbed in, and then pulled it out. The Physician's assistant was very nice and informative and did everything she could to make things very comfortable and quick. The Peritoneal port goes in through the cavity and inserted through the belly. As the port heals the skin cells form and grow around the port and it makes the port second skin. Tim has to simply wash around the port and cover it with a gauze every other day and just watch for infection. He has a 18 inch tube that surrounds his body which he just tapes to stay out of his way and other than that it doesn't look or feel too out of place. The biggest problem with Peritoneal Dialysis is peritonitis which is inflammation of the peritoneal cavity and can be treated with antibiotics. The best way to prevent this is to be extra clean and to closely monitor any redness, tenderness and swelling of the area. There is a special solution that is bleach and water that if washed for a minute will kill the bacteria that grows inside of the tube. within seconds bacteria can multiply from 1 to 5 and within an hour will grow to over a million. This is important to know when washing your hands and just keeping a clean area with anything.. not just cleaning your area prior to dialysis. Anyway because he has been filtering his body and removing the toxins his blood pressure has significantly dropped which makes pill taking a lot less.. with the beginning he was taking 14 medications in the morning, 3 with every meal and 6 at night before bed. Now he takes 4 during the morning, 3 per meal, and 2 at night. His blood pressure is at a perfect state. He does however experience Tachycardia (rapid heart rate) which may have come from the blood pressure spike in August.
I wanted to write a little bit about Tachycardia for those who may experience rapid heart rate. This is without exercise or exertion... Arrythmias have three different types.. Tachycardia (too fast of a heart beat) Bradycardia (too slow of a heartbeat) and or irregular heartbeat. Normally your heart can beat normally without the heart working and harder than what is needed. you have a SA node (a sinus node) that is your own personal pacemaker. Nerves message your heart to beat faster or slower when needed. Problems that can cause Arrhythmias include Atrial Fibrillation (flutter) Heart blocking, sick sinus syndrome, and/or wolff-Parkinson-white syndrome.
The risks of getting arrhymias varies greatly depending on blood chemistry imbalances, weakening of the heart muscle (cardiomyopathy), heart failure, overactive thyroid gland, and past heart attacks. You can also have arrhythmias from subtances or drugs including amphetamines, caffeine, cocaine, beta blockers, sympathomimetics.
Symptoms seem like every other issue these days, Chest pain, fainting, Fast or slow heart beat, light headedness, paleness, shortness of breath, skipping beats, and sweating.
You can take tests to determine if you have this condition. Tests include ECG echocardiogram, electrophysioligy study, or a coronary angiography.
Complications: Angina, Heart attack, heart failure, stroke, and sudden death
prevention can be a well balanced diet and exercise and NOT SMOKING!!
You can check your pulse by having a second hand watch.. count the beats for 15 seconds and multiple by 4.. that determines how many beats per minute you are averaging. Do this when you have not walked around or exercised. Your heart rate will increase if you are working out or walking around. If it is higher than 120-160 when you are not walking around and doing much of anything check with your doctor to have a test done. This can be treated by either a pace maker, some electro stimulation and can help save your life.
-Jackie
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002091/
I wanted to write a little bit about Tachycardia for those who may experience rapid heart rate. This is without exercise or exertion... Arrythmias have three different types.. Tachycardia (too fast of a heart beat) Bradycardia (too slow of a heartbeat) and or irregular heartbeat. Normally your heart can beat normally without the heart working and harder than what is needed. you have a SA node (a sinus node) that is your own personal pacemaker. Nerves message your heart to beat faster or slower when needed. Problems that can cause Arrhythmias include Atrial Fibrillation (flutter) Heart blocking, sick sinus syndrome, and/or wolff-Parkinson-white syndrome.
The risks of getting arrhymias varies greatly depending on blood chemistry imbalances, weakening of the heart muscle (cardiomyopathy), heart failure, overactive thyroid gland, and past heart attacks. You can also have arrhythmias from subtances or drugs including amphetamines, caffeine, cocaine, beta blockers, sympathomimetics.
Symptoms seem like every other issue these days, Chest pain, fainting, Fast or slow heart beat, light headedness, paleness, shortness of breath, skipping beats, and sweating.
You can take tests to determine if you have this condition. Tests include ECG echocardiogram, electrophysioligy study, or a coronary angiography.
Complications: Angina, Heart attack, heart failure, stroke, and sudden death
prevention can be a well balanced diet and exercise and NOT SMOKING!!
You can check your pulse by having a second hand watch.. count the beats for 15 seconds and multiple by 4.. that determines how many beats per minute you are averaging. Do this when you have not walked around or exercised. Your heart rate will increase if you are working out or walking around. If it is higher than 120-160 when you are not walking around and doing much of anything check with your doctor to have a test done. This can be treated by either a pace maker, some electro stimulation and can help save your life.
-Jackie
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002091/
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