Re: How long have you had T1?

Good question, Scott. I believe I already had the background retinopathy before the pump with more progression afterwards. I am not sure in my case the two were related. My control (HBA1C) was not horrible before the pump but my endo felt I could get better control with the pump than multiple daily injections. Overall I do feel that my control is better. But for me the greatest benefit has actually been the flexiblity to not always have to live so structured and eat meals at different times etc. I sort of feel like mine was just the natural progression of the disease. I have read of people like you though were the tighter control caused the eyes to get worse. Aggravating, isn't it?

I had it for 42 years. After about 35 years my kidneys failed and I went on dialysis for a year and had a transplant. In 2008, at almost the exact 42nd anniversary (Feb 28), I had a pancreas transplant and have been insulin free since April 27th of that year. My last shot was 6 units of lantus (which was all I'd been taking for about a couple of weeks before). It's been a blessing. I'll know I'll have it again at one point when the organ fails (hopefully many years down the road) but I know I'll be able to do it again, especially with the help of my pump.

Cora

Cora... can you tell me more about your pancreas transplant?  i have been looking into it and really would like to talk to someone that has been successfully through it.  Where did you have it?  How long until you felt "normal" again.  Is it covered by insurance?  Are you still on antirejecion meds.  Are there any drawbacks from doing it?  Please let me know if you dont mind???

Dawn

Hi Dawn. First off, there are only 2 reasons they will do a pancreas transplant. First, if you need a kidney transplant as well or have had one. Second is if you have such severe hypoglycemic unawareness that you are a danger to yourself or to others. I had mine at the University of Minnesota in Minneapolis which is where I also had the kidney done. They actually did the worlds first pancreas transplant.

I had a slow recovery from the pancreas tx because of other issues. They were cautious and kept me on small doses of insulin for a couple of months after and then stopped it. The really weird thing is that I had reactive hypoglycemia for a couple of years after. I had a really strong pancreas and if I ate something a bit too heavy in carb with not enough protein or fat, I would go low. I think the pancreas is nuclear powered. lol

As with any transplant, you will always be on the anti-rejection medications, That's why they are so stringent with who they give it to. If you don't have complications from the D, it is too dangerous to take the rejection meds as they do have significant side effects. Of course it's way better for me than being on dialysis so I wouldn't go back, but it is something to be aware of if you are thinking of a pancreas only transplant.

The most fun part for me is that I test for fun with no surprises. I felt a little weird the other day and I tested. I was 74. Woo Hoo. I have had other health problems since then and have been so grateful to the pancreas. I don't think I would have recovered as well if I had still had diabetes. And despite these other medical setbacks, both my transplants have continued to work well.

Feel free to ask me any other questions. I know pancreas transplants are getting more common, but there's still not a lot of us out there.

Cora

Thank You Cora.. I actually do have severe hypo unaware and have had 4 or 5 trips to the ER in the last yr or so, thinking I was having a stroke.  My BS were in the 20's and 30's.  My sugars drop like a brick as soon as it hits 80 or so... I can be at 40 or lower within minutes..  

I just started on the CGM due to this and am hoping to get put on the pump soon.  I am also on disability and as my Doctor says I have EVERY complication from diabetes with the exception of kidney failure which is good (knock on wood).  But I lost my Grandmother last sept to end stage renal failure and watched her go through dialysis for over 5 yrs and I am NOT doing that!!! I would rather die than live like that.  My heart goes out to anyone who has to endure that hell.  

I was actually on the candidate list at the University of Wyoming (or was it wisconsin) a few years back, but had 6 family deaths and my own divorce) one after another for the last 2 yrs for one reason or another and just couldn't focus on myself.  I also just almost lost my right leg due to shattering my ankle in November and now 4 surgeries later and my ankle fused together (due to diabetes and not healing properly)I am hoping this works.  I'm from Boston and hear they may be doing the transplant here at Mass General. Is there anything that you are going through now or have gone through that has made you think " I wish I hadn't done it"

Thanks for the info.. It is definately something to think about.  Good Luck and I hope you continue to do well!  God Bless!!

Dawn

I did make one mistake with the pancreas. I was CMV (cyto megalovirus) negative and my donor was positive. They talked about "flu-like symptoms" for a while but I got so sick that I ended up in hospital for 7 months (cascade failure involving severe vomiting due to my gastroparesis - I barfed for 3 of those months). I wish I hadn't been so sick of the diabetes that I was willing to take that risk with the CMV. Since then I have had other problems, but nothing due to the pancreas. I am actually grateful for it as some of what I have been through (other surgeries and emergencies) wouldn't have been as easy to handle without it. And through it all, both my transplants have fared beautifully.

Transplant though is never an easy thing. It is a very big surgery and especially at the beginning the drugs will mess with your brain. There is a lot of depression and paranoia involved at the beginning making things hard to handle sometimes. In the long run, I am happy I did it, but it wasn't easy.

I just hit 36 years of T1, and was also diagnosed at the age of 10.  My only diabetic related complication is a frozen shoulder, which started about a year ago.  My range of motion on my left side is pretty bad, but all things considered, I really should not complain.

Wow... is that really Diabetes related?  I have it too and just thought it was Arthritis?  Learn a new thing everyday!!

I had frozen should too and had a great deal of success with accupuncture/accupressure. From everything I read about it heat and manipulation will help it go away. I wasn't able to tuck in my shirt in the back but now have normal range of motion.

I am two months short of 69 years with T1, since age 10. It seems like there have been many in this thread who started at age 10. I started using a pump 16 years ago, and that has made things a lot better for me. I had lost track of the # of times I had been treated in the ER for severe hypoglycemia, but since starting the pump in 1995 I have not had even one severe hypo. I have been riding a bicycle since 1978, and have accumulated almost 105,000 miles on my bicycle. I'm still riding, even though I'm almost 79. Again, like many others in this thread, I've had background retinopathy since 1964, and it got proliferative in one eye about 2005. I have the 50-year medals from Joslin and Lilly.

Tom, that is awesome!  I want my 50 year medals too!!  I am so happy to hear that things do go well with care.

I too had/have bi-lateral frozen shoulders - for about 3 years.  The only explanation was diabetes.  I did not do surgery and after 3 years of severe pain, I am mending well.

I am now 42 years old and diagnosed 1980.  31 years no complications...  Thank goodness for that!  I like hearing about other peoples experiences...  I do not talk about it too much..  

I was diagnosed 14 years ago (at age 9). How have all your a1c's been? I have had no complications so far, but my a1c last week was 13! Since I took my pump off 2 years ago I have been running high, but not this high. It made me really nervous and scared that I am going to develop complications soon.

That's great! Keep up the great work.