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/
Wednesday, January 25, 2012
Tuesday, January 17, 2012
Dialysis Update-
Tim had a rough time with the Hemodiaylsis. After the hospital he was sent to hamden Davita on Dixwell Ave to have hemodialysis (where the filter the blood) 3 times a week. Every single time he would vomit and get a bad headache. Things just weren't good at all. His health was supposed to improve with doing this and it seemed to be getting worse. I monitored his blood pressure a couple times a day and the stress was making it go up along with his pulse rate and his quality of life was going down. I spoke with a doctor on Saturday and they advised us not to go Hemo on monday but instead go to the New Haven Dialysis for peritoneal training... Although they told us they wanted to wait two weeks for his stomach port to heal they were going to gradually introduce the new process to us and fully prepare us for the at home Peritoneal Dialysis (PD).
Monday we were told that for the next two weeks Tim would have to stay at the clinic for 8 hours a day to get this training and have his dialysis at the same time. I have been doing my overnight job and then going straight to New Haven until about 6pm for the past two weeks. Well worth the time and effort because Tim feels great. He has not gotten sick one time on this new system. It is less stress on his body. What they do is fill up his peritoneal cavity which is all the space between his ribs and stomach and all his organs.. Once that is filled up with a solution Osmosis takes place.. That is where the particles go through the fluid and the toxins that build up in Tim's body bind together with the concentrated solution and stick there.. after about 45 minutes they drain Tim's port and refil. We have been learning techniques on infection prevention and ways to manage time. By the time Tim is ready he will do 4 transfers a day.. putting 2000cc's of fluid into his body, wait 6 hours and then dump it out and refil. That is a manual transfer which can be done if the power is out or the overnight machine does not work. On Monday we will be receiving out Baxter machine which will do all the transfers at night for him while he is sleeping. That way he can do whatever he wants during the day and plug himself in at night.
We've learned a lot these past few weeks on the signs and symptoms that he needs dialysis. Alot of questions were anwsered as to why Tim was feeling the way he was. When you have built up toxins in your body and your Kidneys don't produce enough urine to let the toxins out it just sits there and eventually your body does not allow any new products come in.. This explains why Tim was dehydrated and throwing up since before Christmas. His blood pressure was elevated.. not significantly because of the blood pressure medications he was on, but there are two types of blood pressure.. The top number when you take it (systolic) shows how fast the heart is beating and how hard its working.. The bottom number (dysystolic (SP) shows how hard the heart is working inbetween beats.. The top number should be between 100 to 129 and the bottom number fro 60-90.. anything higher is considered an issue and needs to be addressed with blood pressure medication or in Tim's situation Dialysis. His blood pressure ranges from 130/100.. the bottom number shows that Tim is full of fluid and needs to have the extra fluid taken out of his body. Dialysis also can take the extra fluid away by using a higher concentration of fluid which will grab ahold of the extra water in his body. Tim's daily weight can fluctuate now that his kidneys aren't functioniong in a productive way. He can gain up to 10lbs of fluid a day depending on what his fluid intake is and also how much salt he is eating. He had the weekend of dialysis off and he gained about 8lbs.. that shows that although he is still urinating that he is not letting go of all the necessary fluid in his body. This causes his blood pressure to remain high. There are also sure signs that he is retaining fluid.. swollen face, eyelids, fingers and feet. From now on he is going to monitor this daily to determine what level concentration fluid to use to grab the extra water out of his body.. This is an everyday thing. Not doing this can be very harmful to him.
All of this is said because a lot of people don't understand what Tim is going through and what adjustments are going to be made in both of our lives. Although Tim is the person experiencing this, being with him I am completely by his side every step of the way (granted the few hours I need to sleep during the day for my sanity and health) Although this seems like a lot right now, it will get better and this will all become second nature in our life. We still have time to spend with each other, our families and have fun. This is not painful or stressful on our end.. just busy. I decided to go back to school this semester because I would like to have better knowledge about medicine and it is something that can benefit Tim and I, as well as other people that are close to us. I will be starting classes January 20 through May.. I want to specialize in Nephrology and Cardiology. (the Kidney and the heart) as well as learn all that I can about Lupus and other Autoimmune diseases.
Although we missed christmas this year, and Tim was stuck back in the hospital the beginning of January this was something that we knew was going to happen sooner or later and I am glad that Tim is very proactive with advising when something is wrong or not feeling right with his body. The worst pain he has gone through was a bad headache.. and the time spent running tests, going to doctors appointments and taking his medication and blood pressure. Other than that he is very lucky to have something that is not painful or dibilitating. over 80,000 people a year are affected by Kidney Disease.. 200 people today found out that they have Kidney Failure. This is something that isn't going to change in the near future except get worse. This is very important to educate yourself about this disease especially if you have someone in your family that has this chronic illness because it is genetic and could affect you. This disease does not discriminate and can hit people at birth all the way to old age. In Tim's case he doesnt have Chronic Kidney disease but the disease is associated with Lupus. This doesnt mean that he wont be affected by this for the rest of his life. Even after Transplant his daily routine will be based on taking preventative medication to help his new foreign kidney stay strong.
Do yourself a favor and get checked.. a full metabolic blood test every single time you go to the doctor. Have your Kidney function tested to determine if it is acting correctly. Do not wait. And make sure you get checked at least once a year. If you have high blood pressure, headaches, decreased urine output, or edema don't wait just go to the doctors. Getting diagnosed early can prevent this from progressing to endstage which requires dialysis or transplant.
Tim gets to eat potassium again. He was limited to very little but now he can start eating bananas and orange juice again. He is very excited :)
-Jackie
Monday we were told that for the next two weeks Tim would have to stay at the clinic for 8 hours a day to get this training and have his dialysis at the same time. I have been doing my overnight job and then going straight to New Haven until about 6pm for the past two weeks. Well worth the time and effort because Tim feels great. He has not gotten sick one time on this new system. It is less stress on his body. What they do is fill up his peritoneal cavity which is all the space between his ribs and stomach and all his organs.. Once that is filled up with a solution Osmosis takes place.. That is where the particles go through the fluid and the toxins that build up in Tim's body bind together with the concentrated solution and stick there.. after about 45 minutes they drain Tim's port and refil. We have been learning techniques on infection prevention and ways to manage time. By the time Tim is ready he will do 4 transfers a day.. putting 2000cc's of fluid into his body, wait 6 hours and then dump it out and refil. That is a manual transfer which can be done if the power is out or the overnight machine does not work. On Monday we will be receiving out Baxter machine which will do all the transfers at night for him while he is sleeping. That way he can do whatever he wants during the day and plug himself in at night.
We've learned a lot these past few weeks on the signs and symptoms that he needs dialysis. Alot of questions were anwsered as to why Tim was feeling the way he was. When you have built up toxins in your body and your Kidneys don't produce enough urine to let the toxins out it just sits there and eventually your body does not allow any new products come in.. This explains why Tim was dehydrated and throwing up since before Christmas. His blood pressure was elevated.. not significantly because of the blood pressure medications he was on, but there are two types of blood pressure.. The top number when you take it (systolic) shows how fast the heart is beating and how hard its working.. The bottom number (dysystolic (SP) shows how hard the heart is working inbetween beats.. The top number should be between 100 to 129 and the bottom number fro 60-90.. anything higher is considered an issue and needs to be addressed with blood pressure medication or in Tim's situation Dialysis. His blood pressure ranges from 130/100.. the bottom number shows that Tim is full of fluid and needs to have the extra fluid taken out of his body. Dialysis also can take the extra fluid away by using a higher concentration of fluid which will grab ahold of the extra water in his body. Tim's daily weight can fluctuate now that his kidneys aren't functioniong in a productive way. He can gain up to 10lbs of fluid a day depending on what his fluid intake is and also how much salt he is eating. He had the weekend of dialysis off and he gained about 8lbs.. that shows that although he is still urinating that he is not letting go of all the necessary fluid in his body. This causes his blood pressure to remain high. There are also sure signs that he is retaining fluid.. swollen face, eyelids, fingers and feet. From now on he is going to monitor this daily to determine what level concentration fluid to use to grab the extra water out of his body.. This is an everyday thing. Not doing this can be very harmful to him.
All of this is said because a lot of people don't understand what Tim is going through and what adjustments are going to be made in both of our lives. Although Tim is the person experiencing this, being with him I am completely by his side every step of the way (granted the few hours I need to sleep during the day for my sanity and health) Although this seems like a lot right now, it will get better and this will all become second nature in our life. We still have time to spend with each other, our families and have fun. This is not painful or stressful on our end.. just busy. I decided to go back to school this semester because I would like to have better knowledge about medicine and it is something that can benefit Tim and I, as well as other people that are close to us. I will be starting classes January 20 through May.. I want to specialize in Nephrology and Cardiology. (the Kidney and the heart) as well as learn all that I can about Lupus and other Autoimmune diseases.
Although we missed christmas this year, and Tim was stuck back in the hospital the beginning of January this was something that we knew was going to happen sooner or later and I am glad that Tim is very proactive with advising when something is wrong or not feeling right with his body. The worst pain he has gone through was a bad headache.. and the time spent running tests, going to doctors appointments and taking his medication and blood pressure. Other than that he is very lucky to have something that is not painful or dibilitating. over 80,000 people a year are affected by Kidney Disease.. 200 people today found out that they have Kidney Failure. This is something that isn't going to change in the near future except get worse. This is very important to educate yourself about this disease especially if you have someone in your family that has this chronic illness because it is genetic and could affect you. This disease does not discriminate and can hit people at birth all the way to old age. In Tim's case he doesnt have Chronic Kidney disease but the disease is associated with Lupus. This doesnt mean that he wont be affected by this for the rest of his life. Even after Transplant his daily routine will be based on taking preventative medication to help his new foreign kidney stay strong.
Do yourself a favor and get checked.. a full metabolic blood test every single time you go to the doctor. Have your Kidney function tested to determine if it is acting correctly. Do not wait. And make sure you get checked at least once a year. If you have high blood pressure, headaches, decreased urine output, or edema don't wait just go to the doctors. Getting diagnosed early can prevent this from progressing to endstage which requires dialysis or transplant.
Tim gets to eat potassium again. He was limited to very little but now he can start eating bananas and orange juice again. He is very excited :)
-Jackie
Tuesday, January 10, 2012
Dialysis Training-
Well it was confirmed that Tim's transplant commitee does not want to do the transplant until he is in 6 months of Lupus remission. He did not have signs of Lupus since before November so they are going by the date of his last chemo treatment and will do the Transplant then. It was kind of hard news to take in because when we were in the hospital it was pretty much told to us that they were going to do the Transplant this week, but I am glad they have a plan of action and I trust their judgement. So he went for two minor surgeries last week... one was a port through his chest so he would be able to do hemodialysis and one port through his stomach so we can do dialysis through the peritoneal cavity at home. Hemo was a little rough at first for Tim... he was getting really bad headaches afterwards and he was exhausted. The process took about 3 hours each day and he had it 4 days in a row. When we got home we were set up with Davita in Hamden and they are having us go Monday, Wednesdays and Fridays for 3 weeks in house to get treatment. On Monday there was a little bit of a disaster with the Dialysis... Tim is not a regular Kidney Failure patient. He is still producing Urine and passing Toxens through his body, and he also does not gain any fluid weight so there is no need to take fluid out of his body when they perform Dialysis on him (they filter the blood and usually take excess fluid out of the body that would normally pass in urine in most patients) At the hospital they were taking less than a cup of fluid out of his body a day and Monday they took about 3 liters of fluid, He began to crap up in his chest, his legs, and his hands and his blood pressure went from 140/90 to 90/60 in a matter of minutes. He began to get stomach sick and vomitted violently in the center. They rushed to him and put 2 liters of fluid back into his body and he slowly began to feel better.. I was not happy at this point and within minutes called our doctor and got him on the phone right away. He did not seem very happy at them at all and called over to them to make sure this never happened again. He was very upset that Tim had a shitty first day of dialysis after his discharge of the hospital, but Tim felt better within an hour or so and understood it was a mistake. It took me a little bit longer to calm down.
Today we started our peritoneal dialysis training and went to the Davita center in New Haven which is located next to the yale school of nursing. They were very friendly and they apologized for Hamden Davita's actions for the previous day. We had one on one training with a nurse who explained home dialysis and how it could be done by a machine at night while he sleeps or manually without electricity throughout the day. Tim felt great today and I havent seen him this energenic or alive in months. Today was a great day and I have faith that this is going to get better and better.
Tim's uncle was cleared medically to go ahead with the transplant so we are just waiting the six months and then Tim will have his surgery, a fantastic birthday present for Tim. We are planning our wedding to be 2013 because we want him to be fully healed and doing well with the transplant before we walk down the isle. 2012 is too soon for our wedding anyway and we know that another year will go by very fast.
-Jackie
Today we started our peritoneal dialysis training and went to the Davita center in New Haven which is located next to the yale school of nursing. They were very friendly and they apologized for Hamden Davita's actions for the previous day. We had one on one training with a nurse who explained home dialysis and how it could be done by a machine at night while he sleeps or manually without electricity throughout the day. Tim felt great today and I havent seen him this energenic or alive in months. Today was a great day and I have faith that this is going to get better and better.
Tim's uncle was cleared medically to go ahead with the transplant so we are just waiting the six months and then Tim will have his surgery, a fantastic birthday present for Tim. We are planning our wedding to be 2013 because we want him to be fully healed and doing well with the transplant before we walk down the isle. 2012 is too soon for our wedding anyway and we know that another year will go by very fast.
-Jackie
Monday, January 2, 2012
Monday- Recap
On Sunday January 1 I received a call from Tim's nephrologist who advised me that he talked with the transplant team and that they will be able to put in a peritoneal dialysis port in his stomach but it would take a few weeks to set up. He hinted to me that if we went to the emergency room and was admitted then it would happen in a matter of days. It would have been a month before Tim was set up and actually start dialysis because it takes a long time to heal so we decidecd to pack up our belongings and head down to the hospital on Monday Jan 2.
EKG's scare me because I don't want any surprises with everything that has been going on. It came out normal. We met with the transplant team and they advised us of the plan and that he would most likely have the dialysis port placed in his peritoneal cavity on Wednesday and released to go home on Thursday. Dr. Turner, Tim's nephrologist came to visit him in the Emergency Room just to make sure Tim was okay with everything that was going to take place. He set up a room for Tim in a wing specially designated for Kidney patients and he has his own room.
When we got settled in Dr. Turner and the head of the Kidney transplant clinic came in to see and talk with us. They have a different idea on what they'd like to do but it is not 100% a go yet. Tim has a potential donor and if he is cleared to have the surgery instead of Tim having peritoneal Dialysis he will have a port placed in his chest, have a few rounds of dialysis to clean the toxens out of his body and have the transplant within the next couple weeks as opposed to months on a home dialysis system. When you need a transplant you have your own committee and when you are a live donor you too have a committee and they come together, discuss the case and determine if this the benefits are better than the risks. So on Tuesday Tim will be going down to get his port and immediatly placed on three days of dialysis to clean his toxens and then see if he can have the transplant.
This is amazing news. Its overwhelming but with Joy. I am very nervous and have my own thoughts about everything but I have full faith in God and the surgeons and our team of nephrologists. Once Tim has the transplant his blood pressure will be back to normal, he will be able to eat normal food again, he will feel 100% better and resume a normal life back to work. He has to take a cocktail of medication a couple times a day but we are already used to that. Please continue to pray and have Tim in your thoughts, all of you have been amazing
-Thanks
EKG's scare me because I don't want any surprises with everything that has been going on. It came out normal. We met with the transplant team and they advised us of the plan and that he would most likely have the dialysis port placed in his peritoneal cavity on Wednesday and released to go home on Thursday. Dr. Turner, Tim's nephrologist came to visit him in the Emergency Room just to make sure Tim was okay with everything that was going to take place. He set up a room for Tim in a wing specially designated for Kidney patients and he has his own room.
When we got settled in Dr. Turner and the head of the Kidney transplant clinic came in to see and talk with us. They have a different idea on what they'd like to do but it is not 100% a go yet. Tim has a potential donor and if he is cleared to have the surgery instead of Tim having peritoneal Dialysis he will have a port placed in his chest, have a few rounds of dialysis to clean the toxens out of his body and have the transplant within the next couple weeks as opposed to months on a home dialysis system. When you need a transplant you have your own committee and when you are a live donor you too have a committee and they come together, discuss the case and determine if this the benefits are better than the risks. So on Tuesday Tim will be going down to get his port and immediatly placed on three days of dialysis to clean his toxens and then see if he can have the transplant.
This is amazing news. Its overwhelming but with Joy. I am very nervous and have my own thoughts about everything but I have full faith in God and the surgeons and our team of nephrologists. Once Tim has the transplant his blood pressure will be back to normal, he will be able to eat normal food again, he will feel 100% better and resume a normal life back to work. He has to take a cocktail of medication a couple times a day but we are already used to that. Please continue to pray and have Tim in your thoughts, all of you have been amazing
-Thanks
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