I got an islet cell tx three weeks ago! I am more than excited to no longer be a type one diabetic. Instead I can have the freedom of not checking my blood glucose, taking insulin, and using pump(s) and their paraphernalia. I am elated beyond belief! Anyways I have two pumps and some supplies I have no clue what to do with. Any ideas on how to purge myself of these in a LEGAL manner. I don’t need to spend time in the hoosegow because of a legality issue regarding medical equipment!
Thanks
Which immunosuppressives do they have you on? Are you completely insulin independent after 3 weeks? How long do they expect the transplant to last?
You can donate your pumps- call the manufacturer. They all have programs for that sort of thing.
They don’t know exactly but it’s better than nothing.
Congrats on the transplant. Sounds very exciting!
There is a organization called ipump.org that accepts donations and gives them to people in need. I think that you can also get a tax deduction for donating to them because they are a non-profit.
Ali,
I hope you will keep us posted on your experience. Can imagine your elation! I’d feel like I was dreaming. Would probably take me a while to feel like I could actually eat like a normal person without worrying.
Like Jason, I’m interested in what immunosuppressive meds you’re on & for how long.
Ali - I am also interested on learning more about what immunosuppressive meds you are taking, if you had just a single transplant so far, etc, etc, etc. I have just sent in my info to the U of Minnesota to be considered for their program - I’m rather on pins & needles til I learn if i will be accepted or not. Regardless, congrats!
Where did you have your transplant? How are you doing on the immune suppression? I am on the waiting list at the University of Minnesota.
Shelly - I am also on the waiting list @ the U of MN. How long have you been on the list? Who is your MD there - I am a pt of Dr. Belland’s. Where are you located? Looking forward to talking with you!
You’re kidding right? Tell us more.
Tracy,
I got a call on Dec 23 that I was accepted. I just got back from my second three month check last week. I did the continous glucose monitor and had an eye exam. I live in Idaho so its a long way to travel but I did a lot of research on this and decided that the University of Minnesota and Miami have the best success rates so I picked the closer of the 2. I believe I am also assigned to Dr. Bellin but I have not met her yet. I have been a diabetic for 32 years and if this works it will be a dream come true for me. I have to admit I am nervous about the immune suppressants. Tell me more about yourself!! How long on the wait list?
Here’s some stuff about the islet trsplant procedure.
http://diabetes.niddk.nih.gov/dm/pubs/pancreaticislet/
http://diabetes.webmd.com/islet-cell-transplantation
http://www.ucsfhealth.org/adult/special/i/70759.html
Each one reports that immunosuppressant drug therapy will last for the rest of the patient’s life.
Terry
Shelly - I have been on the waiting list since 10-1-09; I had my second 3 month check on 1-14-10. I applied to the UMN for the same reason - they have a phenomenal success rate! I live in Iowa, was diagnosed at age 6 1/2, (some 39 years ago), & I am thrilled to be on the list! I share your concern re: the immunosuppresant drugs, but I have faith knowing the possible risk it puts us at will enable us to watch more carefully for any problems that could arise. Dr. Bellin is just wonderful - very kind, easy to understand, and very thorough as well. Feel free to contact me on-list or off(@ tlhjnck@gmail.com) any time you want - how exciting, to meet a fellow “list-waiter”!
Tracy,
When do you go back for your next visit? Mine is in April and wouldn’t it be wonderful if we could meet? I also have complete faith in the University of Minnesota and the prodigal that we are in is suppose to be excellet. They have done 2 transplants in the past month with exellent results. A new enzyme was approved that is yelding way more islets per pancreas which hopefully means insulin independace with one transplant, even on larger patients. The immune supp are continually improving. I think this procedure will probably be FDA approved soon because of the success that they have had. I have gotten discouraged from some of the negative information that is on the web but I have noticed that alot of it is outdated. U of MN in the last prodigal said that every patient said that their quality of life had improved. Do you have complications from diabetic yet? We have both had it a very long time. I have been really fortunate that it has this far effected me very little. I got it when I was 4 years old and so I don’t even remeber life without it. However I have watched the devasting effects that it has had on 2 of my aunts.
Glad to hear they are having better success with the Islet transplants these days. Its only what 10 years since the Edmonton protocol surfaced. Also encapsulated cell transplants from LCT are being more routinely done but haven’t started in the US and they don’t require Anti drugs. I locally met a women that had a pancreas transplant some years back and she said the Immune suppressants have virtually no side effects for her. Of course thats not the case for everyone. To me more of the problem would be the cost to take those drugs. From my understanding they can cost around $30k a year… (Sorry no Walmart generics for $4 a month) Even if Ins covers it what if you loose your Ins? Nightmare waiting to happen. I would probably trade my diabetes for the transplant but I am praying Smart Insulin comes to fruition. Ideally Faustman or Exsulin may have the best solution! I am 35 years into this myself and time is of the essence.
Hi Ali,
I had an islet cell transplant in 2008. I would love to know how you are doing.
Kathy
Ali - I just took a peak at your date of becoming diabetic - and thought at first you were newly diagnosed - but man oh man - you are close to my date of diagnosis (you are 1975 and I am 1968)! So excited to hear your news here. Were you having problems before with controlling your diabetes? I ask, because I was refused for the Edmonton Protocol due to being healthy. They were only taking on diabetics that were on the edge (in my words, kidney failure, etc.). Did it cost alot to have this done, and like others are asking, are you taking anti rejection meds (which sometimes the effects of taking them not much fun). Can’t wait to hear more about your transplant!
Wow!!! soooo happy for you. Wish I could get one. Didn’t even know you could here in the states.
What do you have to do? How? etc…
I will be praying for you and a very long healthy successful life of freedom…
There are centers all over the country that are doing clinical trials for islet cell transplants. Google Collaborative Islet Transplant Registry This website shows where the centers are located and what trials they are recruiting for. The inclusiion/exclusion criteria are about the same for all of them.
I have been very lucky with mine. I have been off of insulin for about 17 months now and am going strong. Let me know if you have any questions.
There are going to be people who cannot take Faustmanns treatment, due to some of the exclusion criteria of her study, and there are going to be people who cant get an islet cell transplant (Edmunton), but may be able to get the encapsulated version when it becomes readily avalible (those immunosuppressants can cause nasty effects for some people with previous health issues), So there may be a point where you see people being treated in different ways, depending on their overall health and biology. In this particular case, having options is going to be a good thing… And some of this unfortunately is going to be based on cost. For some the short term cost for a temporary solution (Smartinsulin and such ideas) might be more feasable than a large intial cost and paying for it for the rest of your life, seeing the insurance companies will probably take another 10-15 years to pay for major treatment, like an islet cell transplant… Look how long it took for pumps to be accepted by the insurance industry, and we wont even discuss the current state of CGMS
Hi Kathy,
I’d love to hear about your transplant. Do you get bad side effects from the immuno-suppressants? Do you think it’s worth it if you are someone with an A1C <8 ? That’s super exciting that you are doing well.
elizabetta