The transplant coordinator from DRI called me today. Since August I have been postponing the process of collecting blood sugars, hypoglycemic reports, and medical records from my doctors in hopes of qualifying for an islet transplant trial. She had called to help me make some difficult decisions concerning the direction I want to go while completing my application for the islet transplant.
I had talked some with my current doctor back in August about wanting to try for an islet transplant because of my problems with lows and my ability to sense them until I am much too low for my own comfort. Her feelings on the matter were that if I was having so many problems with hypoglycemic reduced awareness, we needed to stop the symlin. I understand and understood then that reduced hypoglycemic awareness is a contraindication of symlin use, but I was not ready to stop. Now, after 10 months of use, repeated problems and voluntary reduction of use to only once per day, I believe I am finally ready to stop symlin. I am also ready to start moving forward and trying for this transplant. I talked about this in depth today with the transplant coordinator and she was very understanding. She told me that she has another patient who is on symlin and is in the stage where she is gathering information. She told me that I don’t need to stop taking the symlin as far as they are concerned unless I make it through the final loops and actually qualify for this trial. This means I can continue to take the symlin in the morning, my most difficult meal concerning PP highs. I’m also at the point that if my doctor feels she needs to d/c my symlin, I can be okay with that as well.
This is a time of new beginnings in my health care. November I will start to see a new physician at the IDC in the cities. I’m hoping to use my problems with hypoglycemia as a card to help get a CGMS system covered. Heck, they already cover 1,350 test strips per month because of my problems with lows. My insurance might actually SAVE money with a CGMS system. I’m also hoping to find support in the endocrine team at the IDC as I pursue an islet transplant.
The transplant coordinator is going to mail me out new paperwork. I have the old paperwork somewhere but I can’t say I know exactly where or in what repair it is in. I don’t know if this path will lead anywhere. I may get kicked out for many different clinical reasons, but so far so good and unless I do this additional work, I’ll never know.
I can’t talk for anyone else about whether or not pursuing an islet transplant is good for them. I know that I personally have spent a long time evaluating the risks and benefits, knowing full well that even if I do finally qualify for this, it may just be a fix for a few short years, if it even works at all. That’s pretty scary. All of this is pretty scary, but it is exciting too, and one day, at least I can say I tried, even if it doesn’t amount to anything.
After, all you can do is do your best, try your best, make the best out of all of the gifts in life you have been given.
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4 comments:
Sarah
I'm sorry that you're having such an awful time with your numbers, that really stinks.
I also hope and pray that your islet transplant works. From the little I've read, these tend to work for more than a few years. I hope you're blessed with a long life for those transplanted islets.
I'll be keeping an eye out for updates on your progress.
Bernard,
Thank you for the kind words! My main problem at this point is the lows. I’ve always had lows, but as I’ve gotten older I can’t tell I’m low for the most part until I’m well into my low thirties. I feel blessed and lucky that I haven’t had any incidences leading to ER visits or hospital stays, but I also check my blood sugars around 19-20 times a day and I will let myself run higher if I am particularly concerned. I think a big part of it for me is being at home alone with the kids. I worry that if something happens to me, what will they do? Can they take care of themselves, and hopefully get someone over to help me in time if something does happen? I have no guarantees I will qualify for this transplant after we have all of the paperwork finalized and laboratory tests done. I do want to try, though. I guess I’ll see what happens, and if it doesn’t happen, perhaps it isn’t in God’s plans for me!
Very interesting!
I'm anxious for things to develop for you - I'm sure it will be an interesting journey to experience, either way it goes, and I am hoping that you'll share as much as you can with us.
Sarah,
Your blog has peeked my interest, 1. your daughter's probable diagnosis, and
2. your interest in islet transplant.
Truly look deep at all the research of the islet transplant and the side effects of the immunosuppressing drugs. Ask many questions and many many more.
I know several people who have had the transplant and all have said that they would not do it again, they would find another way. At the time, the CGMS was not out yet - it is now and I believe it would be cheaper than the cost of the drugs you would be on for the transplant. They are not "there" yet. Wait for something better to come - and it will!
You are young, you have two young children to look after.
The drugs they give you do horrible things to your body. And the papers the doctors publish - don't think they include everything because they don't.
Take care,
Cyndi
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