Pancreas Transplants
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This group is a place to discuss all issues related tp Pancreas transplants
Members: 24
Latest Activity: Oct 16
CMV virus
This is in response to a question asked by Nancy Schipper:
Nancy,
I have had major problems with CMV. I was CMV negative and my donor was CMV positive which is the worst-case scenario. As a precaution they kept me on Valcye for 8 months post transplant. I was taken off Valcyte last April and by May I had a full CMV infection with a viral load greater than 200,000. The virus settled in my intestine and Colon, which caused extensive internal bleeding and a month in the hospital and two months to fully heal.
The doctors at infectious disease put me back on Valcyte and I figured I would be fine. I went to the World transplant games in August and found I was very tired and under preformed in the cycling events. When I returned I went in for a blood test and sure enough I had CMV again. This time it stayed in the blood and while I was weak it did not do any real damage. The bad news was that the virus had mutated and the Valcyte was no longer able to work.
Valcyte is the only known pill (the Iv form is ganciclovir). Because of my resistance to both meds I was forced to take Foscarnet which only comes in IV form. I had a PICC line installed and infused it twice a day along with a liter of saline. The saline was required because the foscarnet is very toxic on the kidneys and needs to be flushed out.
If you become resistant to Valcyte then there are not any oral medications that one can take for maintenance to protect against re infection. So now I must be tested weekly and if the virus pops up go back on Foscarnet. The other down side is that there is a chance that the virus could become resistant to Foscarnet and my doctor tells me that there are no other proven meds.
My doctors hope that once the effects of the compath that I had at time of transplant wears off my immune system will help fight off the virus. The other option at that point might be to go off immunosuppressant’s.
Nancy,
I have had major problems with CMV. I was CMV negative and my donor was CMV positive which is the worst-case scenario. As a precaution they kept me on Valcye for 8 months post transplant. I was taken off Valcyte last April and by May I had a full CMV infection with a viral load greater than 200,000. The virus settled in my intestine and Colon, which caused extensive internal bleeding and a month in the hospital and two months to fully heal.
The doctors at infectious disease put me back on Valcyte and I figured I would be fine. I went to the World transplant games in August and found I was very tired and under preformed in the cycling events. When I returned I went in for a blood test and sure enough I had CMV again. This time it stayed in the blood and while I was weak it did not do any real damage. The bad news was that the virus had mutated and the Valcyte was no longer able to work.
Valcyte is the only known pill (the Iv form is ganciclovir). Because of my resistance to both meds I was forced to take Foscarnet which only comes in IV form. I had a PICC line installed and infused it twice a day along with a liter of saline. The saline was required because the foscarnet is very toxic on the kidneys and needs to be flushed out.
If you become resistant to Valcyte then there are not any oral medications that one can take for maintenance to protect against re infection. So now I must be tested weekly and if the virus pops up go back on Foscarnet. The other down side is that there is a chance that the virus could become resistant to Foscarnet and my doctor tells me that there are no other proven meds.
My doctors hope that once the effects of the compath that I had at time of transplant wears off my immune system will help fight off the virus. The other option at that point might be to go off immunosuppressant’s.
Discussion Forum
Low blood sugars? 4 Replies
I got my pancreas (and kidney) almost 4 years ago. Everything has been fine, except that occasionally I have low blood sugars. (The first time this happened, I was still in the stage of wanting to ...
Started by Allison B. Last reply by Allison B Oct 7.
very very tired 2 Replies
i was diabetic for 17 yrs before i received my pancreas only transplant. my biggest problem is i stay so tired all the time. i was very animic but doctors so that my blood is good again. i am still...
Started by jeri lynn rabon. Last reply by CatAnne Sep 18.
Renewed libido and fear of infection 9 Replies
I would love to chat about any aspect of the journey. I welcome any contact from anyone who WAS Diabetic (I was for 38 years) and am thinking about wanting to contact my donor's family.... I would...
Started by Cathy Kane. Last reply by Nancy Lee Schipper Jul 31.
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48 Comments
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Comment by Steve Diamond on October 16, 2009 at 3:25pm -
Candie,
I had a Pancreas only and still have my native kidneys. I waited a total of 6 weeks for my Pancreas so you might check out other centers because 2 years sounds way off to me.
My thoughts on doing both at the same time are why not go through only one surgery. Granted it makes it a bigger surgery but I was out of the hospital and doing well ten days after transplant.
I was transplanted at Northwestern Memorial Hospital in Chicago by a brilliant surgeon named Dixon Kaufman.
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Comment by Marie-Agnes Cederborg on October 13, 2009 at 6:35am -
The new World Kidney Day Website is there!
Please visit www.worldkidneyday.org and sign up now!
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Comment by Candie on October 11, 2009 at 3:40pm - Just wanted to say hello to everyone and hope all is going well. Have to share this with you Tracy....saw one of the renal doctors on Friday and I brought up the kidney and pancreas transplant. Explained to her that I have a live donor for a kidney but never was told about a kidney AND pancreas transplant ever since I started dialysis in 2005....now that I'm towards the end of knowing if we (my donor and myself) are OK for surgery, now all these doctors are bring up all this still to me AFTER the fact. She said that usually you need to have both at the same time. She "thought" that the wait for a pancreas after kidney would be a 1-2 year waiting list but she didn't think that may hospitals around here does them...???? All the time she's talking, I'm thinking YOUR A DOCTOR!! She asked that I contact the UNC transplant unit and discuss it with them....I just laughed. Can you believe that?? But have truly got some great feedback of information that I really needed and some good advice. But wanted to share the story with you anyways...
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Comment by Candie on October 7, 2009 at 5:13am
- Good morning! Today is treatment day so I'm up and about:):) It's just kinda strange that my doctor didn't mention the pancrease when discussing the kidney. He said that the best route for me would be a tx since I'm still young and couldn't see me being on dialysis for the rest of my life. I told him that there was no way I would want to be on it for the rest of my life. At that time, he could of said something to me. But since we get our labs drawn each month, my labs have always came back fine. So maybe that is one reason he didn't think about bringing anything up...?? Who knows. It would be nice to not have to worry about anymore complications though:):) Well I better go get ready....have a great day and will talk to you soon. --Candie
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Comment by Tracy & Nancy on October 6, 2009 at 10:38pm - Hey Candie ...Well that is so way cool you're getting a Kidney tx soon:) You will feel so much better!.....and remember down the road a pancreas only (pancreas after kidney) is an option for you. Keep me posted on how all that goes OK...Tracy
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Comment by Candie on October 6, 2009 at 6:44pm
- Hi Tracy-thank you for the information. I am also a Type 1 diabetic and have been for 23 years. But I really do wish now that I think about it, my doctor would of at least talked to me about it. I would of really just wanted one surgery. And not be placed on the list. (for a pancreas) Due to my diabetes and having it for awhile, I have had some complications, but now my sugars are under control. But thanks for your all your information. I know that dialysis is no longer an option for myself as I've been on it since June 2005. If everything goes well with my live donor, it'll be a go! I just want to get off dialysis! ---Candie
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Comment by Tracy & Nancy on October 6, 2009 at 6:17pm
- ooooppps a typo I ment Type 1 not 2
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Comment by Tracy & Nancy on October 6, 2009 at 6:16pm
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Hey Candie,
I think for a Type 1 Diabetic the Kidney/Pancreas is the only way to go! Now since you have a living donor you have a couple of options...1. a living donor kidney transplant then a pancreas later ( I know some transplant center will do that) or stay on Dialysis for a bit longer and go for a SPK simultaneous pancreas kidney transplant from a cadaver. One of things you need to think about on this is the waiting time for a spk~~I know in my last SPK transplant (6/4/09) my wait time at UW (univ wisconsin-madison) was only 36 days but I was #1 on the B blood type when I was listed...I was also listed (double listed) at UCSF (univ calif. san francisco) and the wait was going to 1-4 years~~so alot to think about on this. But most defintely the Kidney & Pancreas is the way to go :) That's a bummer your Dr. didn't share that option with you. I got Type 2 Diabetes when I was 12 (1971) recieved a SPK tx in 1990 (at UCSF) and the Pancreas lasted 18 1/2 years!!! And having normal blood sugar levels 'from the tx pancreas' really helped reverse some bad Diabetic complications I had :) well I hope that helps you a little~~~God bless you, Tracy
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Comment by Candie on October 6, 2009 at 10:17am
- Hello all. I'm new to this site but have a question....I've been a diabetic for 23 years now. I have a live donor who is in the process of going through all the testing. Questions is, do you feel that a kidney/pancreas transplant is the best option or just a kidney? I've been on dialysis since June 2005 and my doctor never mentioned anything about having a pancreas transplant (along with a kidney)...?? Now I'm confused and don't know if this is something I should bring up with my doctor. I was hoping to only have one major surgery and that would of been my kidney transplant. And with a pancreas transplant, do you have to be on a waiting list also? Thanks for any advise----Candie
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Comment by Tracy & Nancy on September 26, 2009 at 4:23pm
- Well I just recieved my 2nd Kidney/Pancreas tx on Aug 4, 2009 ! :) Yes I am doing great and its nice to have a Pancreas again:) My first pancreas lated 18 1/2 years but failed July, 2008. Anywhos God bless and I hope everyone is doing great! Tracy
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if your on the waiting list and have questions feel free to contact me, I had a heart/Double lung transplant.
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Still waiting with a MELD of 25....go up to a 28 as of Nov 22!© 2009 Created by TransplantCafe.com
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