My Transplanted Pancreas has Stopped Working

[MikeD]

I had a kidney and pancreas transplant in 1996. The kidney has been working pretty much flawlessly since then. It's a great source of happiness for me that I have not died, which was a destination that was clearly in the cards for me at the time.

The greatest source of happiness associated with my transplant experience is the pancreas transplant. It's such a relief not to have to worry about low blood sugars and have to watch what I eat.

The pancreas that was transplanted into me in 1996 stopped working in 2004 after about 8.5 years. I did nothing wrong and they clearly told me that it was not my fault. Apparently, a transplanted pancreas works about 5 years. I got 8.5 years from mine.

I went on the pancreas transplant waiting list and waited 3 years for a new one. It took THIRTEEN tries to successfully get another one. Twelve times, I was called in and then the potential pancreas was either in bad shape or the donor had a disease or there was some other obstacle. I was usually in the hospital (90 minutes away) and all IV'd up and ready to be put under when the bad news came. Then, the 13th time, (My lucky number!) in October 2007, everything clicked! No more low blood sugars!

Now, 7 years later, the second transplanted pancreas has failed after 7 years of faithful service in an adverse environment. I am back on insulin shots, having high and low sugars, and doing damage to my blood vessels again.

In about 3 years, the usual wait for a pancreas transplant after having a kidney transplant, I hope to get another pancreas.

I treat my transplanted organs with great respect and follow all the medical rules like a good, "compliant" patient is supposed to.

I hope to get on the waiting list soon. It's a long and complicated process. I will have to have the now, non-working, transplanted pancreas removed before I can get a new one put in. They don't want to do two operations at once to insure that they do not waste an organ should something go wrong in the removal operation.

My wife was thinking about retiring soon but we will not be doing that so that she keeps her company insurance until I get that latest pancreas transplant. She says she is glad to do that. I have Medicare from the kidney failure SS program so no matter what happens with her job I will have some sort of insurance.

It's always something! I did not know that transplanted pancreases only last 5 years. I only just found this out.

I hope to remain happy despite this adverse occurrence but am having difficulty. I think I need time to get used to this latest situation. I am normally a happy person but this is bothering me a lot.

Mike D.

[Moemg]

Mike , Sorry to hear this . I hope you get the new Pancreas soon in the meantime maybe a support group would help .

[daylatedollarshort]

Sorry to hear that. I hope you get on the waiting list and make it to the top quicker than expected.

[nash031]

Mike - sorry to read this story. I hope to provide a little bit of comfort by sharing this...

My dad was diagnosed with pancreatic cancer in January of 2013. 80% die within one year, and 95% die within 5 years of diagnosis. He's now 80, hanging in there against the odds. (He retired at 77, diagnosed at 78.5, and is the motivation behind my ER efforts).

He had what was considered an operable tumor, which is rare. Normally tumors of the pancreas are hard to detect and often too large and spread too fast to make surgery an option. We were lucky.

That said, his tumor spread through just his pancreas. The surgeon could not find "clean" cuts and opted to fully remove his pancreas. A year and a half later, at age 80, he's adapted to being insulin-dependent diabetic and is able to enjoy most of his favorite foods as his taste and strength allow. He's had few issues with being pancreas-free; most of the complications are related to the extreme invasiveness of the Whipple procedure, which you may have had (or some version thereof).

We work every day to give him a "normal" quality of life at 80. But he keeps hanging in there, and we're looking forward to yet another Christmas with the whole family around. He was very upset at having the diabetic lifestyle imposed upon him. He's learned how to use an automatic pump to manage his blood sugar, which is much easier than the pin prick three times a day, and has few issues. Proof that, once again, you can teach an old dog new tricks.

So while it is certainly an adjustment, I hope you take some comfort in my dad's experience. Nothing makes him happier than eating a "big gooey" pastry or stack of pancakes, and with a little education he's learned that he still can!

Best of luck to you!

[haha]

Tough pitches. Best of luck to you. Incidentally, you sound pretty up compared to what I fear I would sound like in this situation, so congratulations on your strength.

Ha

[Ronstar]

Mike, Sorry to here of your troubles - hope a new pancreas comes to you soon!

[Animorph]

Sorry about your situation, but thanks for the information.


Your wife can still retire. You can get ACA health insurance for the same price as anyone else. No pre-existing conditions problems now. You are eligible as soon as your wife's insurance ends, at any time during the year. You'd want to be sure you signed up in a timely fashion to avoid gaps in insurance, and you'd want to make sure the new provider network covers the doctors and hospitals you use.

[Sarah in SC]

Mike, I'm sorry to hear about this latest turn of events for you.
I, too, was unaware of the typical life span of transplanted organs, which also seem to vary depending on if they are from a cadaver or live donor.
My mom's first transplanted kidney lasted well past 10 years, and her second, from a live donor, will surely take her through the rest of her life.

Is there a possibility in your situation for there to be a partial transplant of a pancreas from a living donor? Perhaps that might make the wait time less onerous. I know you are frustrated by this; especially after doing everything right to be a compliant patient, to have to go through it all over again.

You are in my thoughts as you sort through the practical and the psychological parts of your news. So sorry.

[MikeD]

I am not a support group type of guy. I know what I need to do and am doing it but talking about it with others doesn't appeal to me. I also do not think I would benefit from it, ie. I don't think it would make me feel better.

The longer I go without my blood sugar being accurately controlled by a real pancreas and the resulting damage to my already damaged blood vessels, the shorter my life will be. I need a new pancreas right away and I am worried when I don't have one! I just need to get used to my situation, I think.

I am very grateful to the two people and their families who have donated organs to me. It's such an unbelievably nice thing to do. One of the reasons I took almost perfect care of myself (including my "new" organs) after the transplant was out of respect to the donors. I am truly grateful and think it would be a slap in the face to the donors had I not followed medical orders to the letter.

I am a talkative person. My wife bears the brunt of this personality trait for the most part. I talk to her as my support group. Neither of us is a "therapy" kind of person.

Thanks for the advice but I don't think it's the answer for me. Please believe me that I am glad that you offered advice.

Since I have already been through this exact thing before I am under the impression that I already know what to do in terms of getting a new organ and controlling my blood sugar in my new situation.

I have some pretty good doctors and nurses involved in my care. One of the only places that I have had bad experiences with the medical system is the transplant center that I go to. They have some extremely good doctors and facilities. The main problem seems to be a lack of funding. Running a transplant center costs a lot. Their staff has been cut back and I have repeatedly fallen through the cracks. I routinely do not get calls returned, even in emergencies. There are other examples of them not doing what they are supposed to when I have had to have someone in authority intervene on my behalf. This has already started with this particular pancreas' failure and the scheduling of the emergency tests needed to handle the situation. I have a really good and influential kidney doctor who agrees with me about the transplant center's failings and who has often intervened for me in some cases where I couldn't get the needed care. I have always gotten the appropriate care after I managed the situation myself and pretty much made them do what they were obligated to do. If I had solely replied on the actions of the transplant center nurses and coordinators, I would not have had a good outcome.

I also have tried not to alienate the very people who are supposed to be helping me. So I sort of walk a fine line. So far with this particular pancreas failure I am still on track to get the proper outcome. I did need my nephrologist to text the transplant surgeon to get me an emergency appt for diagnostic tests before Feb 5th which was the earliest date they would give me for organ failure! I am now getting tested in 6 days instead of over 90 days for an emergency. The staff has too much to do and has no authority to make decisions so things just do not happen as one would expect.

So, as long as I stay on top of things and force the issue occasionally, I get very good care. The transplant center's faults are due to not enough funding and staff as far as I can tell.

I would be glad to pay more for better service but that's not how things work. There are only three transplant centers in our area and the one I am working with is considered the best one. It is also the closest to me, the only one in my state, and not on the middle of a city, which I consider a plus.

Thanks for your suggestions. I appreciate them all and really have thought about what you have said and did not just dismiss it.

Thanks,
Mike D.

[Meadbh]

So sorry to hear that, MikeD. This is a great disappointment. You are the expert on your own health and healthcare, and your own best advocate. You are very fortunate to have such a supportive DW.

[MikeD]

Just an additional note:

I am not down about the pancreas failing. That's apparently just part of reality and the hand I was dealt in life. I am not happy that I have to worry about having low blood sugars and controlling my diet and shots and, especially, finger sticks for blood glucose monitoring. I was feeling so free and happy and unencumbered (Ha! I take pills six times a day! I go to the doctor for some reason or another at least once a week! I am on 14 real, doctor prescribed, legitimate prescriptions! I spend a fortune on copays! All that doesn't bother me at all, really.) and now I have to worry about falling over from LOW blood sugar.

It's just a personal peccadillo. I will get used to it and get over it.

Thanks,
Mike D.

Really appreciate the advice. I guess this is like a support group!

[Walt34]

So sorry to learn of this happening to you. However you seem on top of it and know what to do to manage it so it will have a good outcome.

Best to you.

[Dash man]

Best wishes to you and your DW for what you're going through. You appear to have a good handle on things and know what to expect. It's amazing the things medicine can do for us these days to keep us around. What's more amazing is the support a spouse can provide to help us keep our sanity when things look the darkest. Sounds like you've got a good one!

[Bestwifeever]

Your positive attitude shines through here, Mike. Thanks for sharing what you have been through for the last 18 years--your story makes me count my blessings. You have all my best wishes and a few prayers for another healthy 18.

[spncity]

Thank you for sharing your story. I learned a lot and you articulated that frustrating part of healthcare (walking a fine line) of being your own advocate. I wish you every excellent outcome.

Kindest regards,
spncity

[W2R]

MikeD, I am so sorry you are going through this extremely tough situation.

Quote:

Originally Posted by MikeD In about 3 years, the usual wait for a pancreas transplant after having a kidney transplant, I hope to get another pancreas.

We never know what the future will bring, at least not completely. Even if 3 years is the usual wait, your wait possibly could be even longer than that or shorter than that. I am hoping that by some miracle your wait turns out to be much, much shorter than 3 years.

Meanwhile, your good attitude shines through when you talk about how careful you are to treat your donated organs well. While you are waiting, you can put that same energy into your overall health so that the next donated organ will be put into the best body/environment that you can provide for it. General health measures like eating properly, getting as much exercise as is advised, and doing everything you can to remain as healthy as possible while you wait, will surely help.

Good luck and I will continue to hope for a *good* donor organ this time, with no problems, maybe even before you expect it.

[imoldernu]

Mike...
Inspiration! Acceptance and courage to make the best of what life offers.

Your story puts the little problems DW and I face into a new perspective.

Thank you for the message, and best wishes for a good outcome .

[2soon2tell]

Mike,

I'm sorry to hear about your failing pancreas and feel you are very brave to share your story on this site.

I'm a pancreatic cancer survivor (going on eight years) and live with half of my pancreas. It was removed along with part of my stomach, gall bladder and small intestine during the Whipple surgery. I'm also diabetic now and must take metformin and digestive enzymes to function properly.

I wish you a quick match for a new pancreas transplant. When I was undergoing the cancer surgery, radiation and chemo I realized it's all about the three F's. Your faith, family and friends are most important and are there to help you get through the ordeal. I hope they are there for you as they were for me.

Best wishes for a quick recovery.

[aja8888]

Mike, thanks for sharing the story and hang in there. Maybe a new pancreas will make its way to you sooner than you think. Our current story below will hopefully give you some hope.

Our family just went through a similar event with my brother-in-law who is the closest sibling to my wife. He has been suffering for years with congestive heart failure and had a pacemaker for the last seven or eight years. A few months or so ago, he started downhill and ended up in the hospital with the docs telling him he had three months or so to live as they could do no more to save his heart.

He managed to get on the transplant list two weeks ago and was told he may have to wait up to 8 months for a donor heart, which was way outside the time estimate he had with his current heart. Well, within SEVEN days, a donor heart became available and was put in him last week. Talk about luck!

All seems good and he is fighting rejection, which I understand is normal. We hope he is home soon.

[Redbugdave]

Thanks for sharing your story, Mike. You presented a lot of facts I did not know.

When we die, (my wife and I), we want our organs and whatever else to be harvested for those people that need them. Other than on our driver's license for organ donation...what else should be done to make sure our bodies do not go to waste?