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.
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)
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