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Kingston, Massachusetts, United States

Saturday, February 19, 2011

February 19, 2011

Dilemma…also known as, a quandary, a tight spot, a catch-22, a predicament, an impasse, or simply a problem…do I choose chocolate ice cream or vanilla ice cream.  However, my dilemma is not so simple.

During my last appointment with Dr. Pavlakis, we discussed me being listed on the UNOS list for a pancreas as well as a kidney.  Ultimately, after much discussion, I went with her recommendation to be listed for both. 

One might think that this would be an easy decision to make, especially after having to rely on either insulin injections or messing with an insulin pump for the last 27 years.  I would finally be free of the daily grind of thinking my body was a big, constant chemistry experiment every day, every hour, trying to balance my blood sugar levels - think of it as a seesaw and on one end you have insulin, the hormone produced by the pancreas, and on the other end is all of your carbohydrates and other foods, and you have to try to keep your blood sugars in a normal range (think of the seesaw being level, maybe swaying just a little up and down).

That daily, or hourly, chemistry experiment, keeping the seesaw level, is hard work.  So, given all of that, wouldn’t it be a no-brainer, then, to opt for having a pancreas transplant in addition to the kidney transplant?  The quick answer is yes…absolutely, I would give up having to regulate my blood sugar, and all the worry that goes along with it, in a heartbeat!  But only if I knew that it would truly mean an end to my Diabetes.

Diabetes sucks, plain and simple.  It took the life of my sister, Linda – she was only 24…24!  She was a nurse, and her whole life ahead of her.  Diabetes is the sole reason why I am here today in need of a kidney to live.  It has toyed with my eye sight, to the point of needing laser surgery to repair my retinas.  It has messed with my heart, requiring me to have several stents placed and eventually leading to double by-pass heart surgery.  It has taken away the sensation, or feeling, in parts of my feet – nearly losing one of my big toes because an ulcer was slow to heal (due to having a great foot doctor, I still have all ten toes, but my balance is a little off).

So, if I have a pancreas transplant, there is no guarantee that I would be Diabetes-free for many years to come.  The success rate is about 90% (meaning no need for insulin injections) after one year, and 70 – 75% after five years.  I know I am asking for a miracle, but part of me feels that if I am all in on a pancreas, I don’t want to ever have to go back to the way it was.  I know that is being selfish, and there are those that would say, “hey, at least you had a few years where you didn’t have to take shots every day or adjust your pump.” 

And you know what, they would be right, at least I had that.  It would be bitter-sweet if I had to return back to the life of insulin and worrying about my blood sugar.  I would do it, of course, but it would be bitter-sweet…I would hate it, but I would do it.

There are other things to consider as well.  If this were to happen before Tommy is scheduled to donate a kidney to me (it would have to be a perfect match), that would mean that someone else would have to have died in order for me to live – I still have trouble wrapping my head around that.  Plus, the wait on the list is longer when you are looking for a kidney and pancreas together.

There is also the option of receiving a kidney from Tommy, and then a pancreas becoming available later from a cadaveric donor, and I would have the option of saying yes I will take it, or pass on it.  It is my understanding that if I pass on it, I will still remain on the list and I could be called again to make a similar decision.

If only life were as easy as choosing between chocolate or vanilla ice cream…


  1. I saw your post on Transplant Buddies and have been following your blog. I am a PAK - pancreas after kidney. I got a kidney from my wonderful cousin in 2002. We were a 1 antigen match and yet I have never had an episode of rejection (knock on wood). I had my pancreas almost exactly 3 years ago. It is joyful. That's all I can say. The second surgery isn't necessarily the easiest thing in the world, but it wasn't that bad. I still test, but only for fun. I have had some health problems in the past few years, but I couldn't have gotten through it without the pancreas.

    Just as an aside, with modern drugs etc, I believe that the average expectancy for a pancreas transplant is about 10 years. I am 3 years out and my a1c ranges between 4.8 and 5.2. I did manage to get a nuclear powered pancreas and sometimes have a bit of a problem with low blood sugar (reactive hypoglycemia) but it's not severe and I don't mind.

    I wish you the best of luck and want you to know that PAK works quite well and you do tend to get a longer life out of a living donor kidney.

  2. Hi Michael- I am 71 yrs old and also on the T list. I am a healthy female with no other illnesses, not even on dialysis yet (knock on wood). But at my evaluation I did test positive for TB. I don't have any symptoms and have to see the infectious disease center at the Mayo for consult. Don't know what it means but Drs. have given the go-ahead for transplant, they don't seem concerned. My 3 year old great-granddaughter Mia did test positive for TB and is on medication. I will find out more after my consult on Friday. I have been staying away from my grandchildren until I know for sure about my condition. My husband tested negative for TB - so it's confusing.
    Michael you are going to be fine after your transplant, you are young and strong, so keep up your spirts. Here's a little poem I found for you. "Angel of the morning, Guide me through each day, Keeping watch in the nighttime, Please take my fears away." DMMaroney
    Until next time.