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Author Topic: Has anyone had a kidney and pancreas transplant?  (Read 5564 times)
paddbear0000
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« on: September 27, 2007, 11:31:30 AM »

Has anyone here gotten a kidney AND pancreas transplant? I ask, because my neph wants me to get both because of the advanced state of my diabetes. I'm extremely nervous about a dual transplant. I already have issues about getting just a kidney! I was interested in hearing about your experience if you have. :thx;
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
jbeany
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« Reply #1 on: September 27, 2007, 11:40:15 AM »

I'm on the list for one.  It is a higher risk surgery, but if it works, the long term benefits would be wonderful.  I've already got gastroparesis and retinopathy.  The dual transplant would end the damage being done, and hopefully save the rest of my eyesight.  Plus, the waiting time tends to be shorter for the dual list.  What's a bit more risk for those kind of benefits?  In for a penny, in for a pound, as the saying goes.
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paddbear0000
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« Reply #2 on: September 27, 2007, 11:46:03 AM »

I mean, what if the pancreas is rejected?! There is no dialysis for pancreases! It also creates your digestive enzymes. Can you not eat if this happens! I'm kind of freaked out by this!
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Romona
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« Reply #3 on: September 27, 2007, 02:12:55 PM »

I have met several people that have had this and had great results. 2 guys I know are both 5 years out and are doing great. I met a young man that had a kidney pancreas but lost the pancreas right away. He was got another one in less than a week and did great.
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paddbear0000
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« Reply #4 on: September 27, 2007, 02:20:18 PM »

I have met several people that have had this and had great results. 2 guys I know are both 5 years out and are doing great. I met a young man that had a kidney pancreas but lost the pancreas right away. He was got another one in less than a week and did great.

If you (or he) don't mind me asking, what happened during that week? What happens if the pancreas fails while you wait for a new one?
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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www.facebook.com/profile.php?id=1659267443&ref=nf 
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Romona
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« Reply #5 on: September 27, 2007, 04:46:15 PM »

He had been diabetic since he was 5. I believe he was in his mid thirties. He was in the hospital so I am not sure what they did. I guess we could search pancreas and see what we find.

I also met a lovely woman originally from England who had just a pancreas. We were roomates for a very short time. Her pancreas was going to be removed because in her words "it went mutant" and grew around her intestines. Now I am curious. I'll see if i can find a link.
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Romona
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« Reply #6 on: September 27, 2007, 04:56:44 PM »

The original pancreas is left in place. You need the native one. I am sorry I can't answer your question. Maybe someone else can find an answer.  :)
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stauffenberg
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« Reply #7 on: September 27, 2007, 05:08:06 PM »

Type 1 diabetes is caused by an auto-immune attack on the islet cells of the pancreas.  Since only the islet cells, which make insulin, are destroyed by this attack, the rest of the original organ continues functioning to produce all the digestive enzymes you need.  In some patients who have to have a total pancreatectomy because of pancreatic cancer, these enzymes have to be substituted in pill form.  So don't worry that the rejection of a transplanted kidney would ever leave you unable to digest your food.

There are many difficulties with a combined kidney-pancreas transplant, however.  The risk of rejection of one or both of the organs is higher than if either were transplanted alone.  Also, because the pancreas cannot be situated in its normal position in the body, for reasons of the complexity of the surgical geometry involved, there are frequent metabolic difficulties caused by having to make an artificial drainage for the pancreas through the urinary bladder. There are much more likely to be problems during the transplant follow up with the combined transplant than with the kidney alone.  The choice depends on whether you would prefer to maximize security or maximize the possibility of the most optimal health outcome.  For security, go with a kidney transplant alone; to gamble for the better possible outcome, go for the combined kidney-pancreas transplant.
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« Reply #8 on: September 27, 2007, 05:27:07 PM »

Stauffenberg is correct.  A kidney transplant alone is a much less complicated, safer procedure, with good outcomes that are pretty predictable.  A newer, somewhat experimental form of transplant that is proving effective in type 1 diabetics is transplantation of pancreatic islet cells into the liver.  The islet cells normally contained in the pancreas are responsible for producing insulin in the body.

Removing these cells from the pancreas of a deceased donor and transplanting them into the liver of a recipient is a non surgical procedure performed using a catheter.  It would seem that this would be an ideal procedure for a type 1 diabetic who also requires a kidney transplant or for any type 1 diabetic wishing a cure.

Please see the following link for a description: http://diabetes.niddk.nih.gov/dm/pubs/pancreaticislet/
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jbeany
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« Reply #9 on: September 27, 2007, 10:02:57 PM »

I mean, what if the pancreas is rejected?! There is no dialysis for pancreases! It also creates your digestive enzymes. Can you not eat if this happens! I'm kind of freaked out by this!

The only thing that happens if the pancreas rejects is that you go back to being diabetic and need insulin shots again.  Your original pancreas will go on producing the same digestive enzymes it always has.
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« Reply #10 on: September 28, 2007, 05:20:10 AM »

Rob's transplant team at his hospital, Mass General in Boston, say he has better odds of both organs lasting longer by doing separate kidney & pancreas transplants.  I trust them completely, they have the best record of any hospital in the US of kidney's not rejecting in the first year. 

So, he is going with that plan of action.  He'll get a kidney transplant and about 1 - 1 1/2 years later get a pancreas transplant.
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stauffenberg
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« Reply #11 on: September 28, 2007, 07:32:22 AM »

It is true that sequential kidney and pancreas transplants are less likely to be rejected than simultaneous kidney-pancreas transplants -- though just transplanting the kidney alone is the most secure way to guarantee a long-lasting renal graft. 

The transplantation of pancreatic islet cells alone into the portal vein of the liver, without the entire pancreas, is still a highly experimental procedure.  Unfortunately, the islet cells only survive a short time there, usually three years at most, which is much less function than can be expected from a whole organ transplant. 

Various methods are being tried now to encapsulate islet cells in a differentially porous membrane which allows insulin to get out into the body but keeps immunologically active cells away from the islets, thus permitting diabetics to live without insulin injections and also without having to take any immunosuppressive drugs.  But for those who will have to take immunosuppressants anyway for their kidney transplant, this method obviously is less advantageous.  Since the total cadaver supply of insulin producing islets is only great enough to treat about 1% of the world's type 1 diabetics, there have been recent efforts to transplant islets from pigs without immunosuppression, protecting the islets by encapsulating them.  Unfortunately these transplants also have shown a very limited effectiveness and life expectancy, with the patients seldom being able to stop injecting insulin completely, and the islets functioning for at most around two to three years.  Since it is not known what is causing these encapsulated islets to be so ineffective while they survive, and to die off so quickly even though they are protected against the action of the immune system, it may be a long time before this becomes an effective way of treating diabetes.  For now, some are suggesting that the islet transplant simply be repeated every year or two to keep the patient forever either wholly or largely free of injected insulin, but the expense of doing this would be enormous.
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paddbear0000
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« Reply #12 on: September 28, 2007, 09:27:32 AM »

Thanks for all of the great information guys! This helps alot. Unfortunately, this info also makes me even more wary of getting the dual transplant. I guess I should start out by seeing if my insurance will even cover a pancreas transplant. I know they won't cover anything experimental tho.
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
jbeany
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« Reply #13 on: September 28, 2007, 10:05:53 AM »

Rob's transplant team at his hospital, Mass General in Boston, say he has better odds of both organs lasting longer by doing separate kidney & pancreas transplants. I trust them completely, they have the best record of any hospital in the US of kidney's not rejecting in the first year.

So, he is going with that plan of action. He'll get a kidney transplant and about 1 - 1 1/2 years later get a pancreas transplant.

Huh - my docs said they rarely do a seperate operation, because of the possible damage to the transplanted kidney when they have to up the immunospupressants just after the pancreas operation.  They told me if I had a live donor that they wouldn't normally consider doing just a pancreas transplant after.
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« Reply #14 on: October 05, 2007, 08:49:24 PM »

With insurance these days of cutting cost, the question comes to mind is would they pay for another transplant at a later date that can be treated with insulin. So to me a simultaneous transplant maybe better to think about. Before doing that though, if you can, go to another transplant center and go to their transplant seminar to compair notes  Get an objective view so you can get informative answers before you make this big decision. Nervousness about having a transplant I would say is normal, but once you have had it, it is the best decision you may make. Just have to keep in mind that not everyone has a rosy ending. Some transplants may take awhile to get going. A book that is good reading even though it is about 12 to 15 years old is titled "Organ And Tissue Transplantation/ Nursing Care from Procurement through Rehabilitation" by M.K. Gaedeke Norris and Mary Anne House. There is another book that has been recently updated is from the American Transplant Association. There is a $12 yearly subscription in which you receive newsletters about news in transplantation.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
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No two day's are the same, are they?
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