Hi Preta -
I had a kidney transplant in Nov 2005. It has helped me a lot. I use Cellcept, Prograf, and a few others. I know you were very sick at the time before you had the transplant. Maybe compared to needing a liver transplant, needing a kidney transplant is almost like needing elective surgery. I am glad that you have this chance.
There is a group called Diabetes and Organ Transplants. If you like, please join it. It is not very active, but it is a place to identify yourself. Thanks.
HI Colleen,
I am so happy that you are able again to live again without the ongoing terror of really bad lows. My sister gave me a kidney in Nov 2005 and it’s working fine in me so far.
If you like, please take a look at the Diabetes and Organ Transplants group. It is not very active. Maybe it can help us to identify ourselves a little more.
I wish you nothing but the best.
Hi George - I am a candidate for a currently suspended Islet Cell Study at Columbia Presbyterian Medical Center in NYC. The study may never actually go too far forward as science is changing so fast. Anti-rejection and a host of other drugs are called for in that study too, for the life of the Islet Cells.
For most of us, a transplant yields a much more satisfactory way to live. My kidney transplant (Nov 2005) has.
I used to take reglan in smaller doses. I have a dr. appt tomorrow and I think I will be going back on it. It’s getting to be more than I can handle w/o meds, although I am still fine-tuning my diet to figure out what foods are ‘good’ or ‘bad’.
I know what you mean about it not being just the stomach. I don’t have the most typical symptom (vomiting). I was diagnosed 5 yrs ago, although I started having the earliest trouble 5 yrs before that. I was only 12 then so diagnostics was a little different!
You are absolutely right about not getting a pancreas unless you are in dire shape. Anyone who is well-controlled should thank their lucky stars and follow their treatment plan. But for people like me that died, etc. transplant was my only option. The immunosuppression is a ■■■■■ and can lead to numerous problems but my new pancreas works great and I’m not diabetic, so I consider my transplant a cure and I thank God for my donor daily.
I lost my appetite after the transplant and it’s yet to return. I force myself to eat. The only good thing is I lost the weight I gained on insulin. Stay healthy and I’ll keep you in my prayers! Colleen
Gastroparesis is about the only problem I didn’t have with my six years of diabetes. The islet cell transplant will be good when it’s more effective. Unfortunately you still have to take antirejection drugs. There is a new procedure where they inject you with stem cells from your own bone marrow. These turn into islet cells and begin producing insulin. And no antirejection drugs because it’s your own stem cells. But this is incredibly new and only being done in Europe. Still it sounds good for in the future. At that point I’ll probably have it done and lose the antirejection meds. Let me know as the time grows closer for any transplant you decide on. You may already do this but if you don’t-call your MD’s phone nurse everytime you have a hypo reaction that needed treatment. When you are being medically evaluated my the transplant team it helps to have evidence of the times you went low. Take care. Colleen
Hi Colleen,
Yes, I had a very sucessfull PTA on Aug. 13, 2004. You can read my entire story at www.diabeteslivingtoday.com
Big Hugs To Everyone at TuDiabetes
kitty castellini
diabetes living today
I have never been told that, I was told I can get pregnant. I just had to wait a year after transplant. you just have to plan it, but being diabetic you should be planning it anyway.
Hi!
My name is Shahid n I m from Pakistan. My age is about 23 years… I m tye 1 diabetic for last 3 years./… I also wanna get pancrease transplant… What should I do now? from where I can get it? How costly is it?? can u plz guide me???
Dear Shahid,
Hi! The best way to look into a pancreatic transplant is through the use of the internet. First you need to find out if there are any pancreatic transplant facilities in Pakistan. If not, are there any in countries close to yours? If not and you need to come to the U.S. I would highly recommend Indiana University Hospital in Indianapolis, Indiana. This is where I had mine done. They do more pancreatic transplants annually than anywhere else in the world. And Dr. Jonathan Fridell, my surgeon, is supposed to be the best in the world. I can’t remember ever feeling this good physically although I’m sure I did at one time prior to the diabetes. I’m not sure of the cost because my medical insurance paid for it. And the antirejection drugs you’ll be on for the rest of your life are expensive. The number here in the U.S. for the Indiana University transplant center is 1+800-382-4602. Just tell them you are considering a pancreatic transplant and they will have you talk to a transplant coordinator. Please keep in touch. If you do ever come to the US, especially if you go to Indiana University, I’d be happy to come to the hospital and stay with you during your recovery. Please let me know if I can do anything else to help.
Sincerely,
Colleen
Our government doesn’t currently have control of healthcare, and I can’t for the life of me see how it could get any more expensive and less effective than it is now… at least for those of us who can’t afford decent insurance. I guess if you’re rich, it’s plenty effective, but from my end of the spectrum nationalized healthcare is looking pretty good, compared to beggaring my family to support my son’s need for insulin. And I say that having gotten a lot of supplies for free from the clinic.
USA Today author Scott Bowles published his journals on his wait for a pancreas transplant in USA Today back in 1998. (His story is also published as a book entitled “The Needle and the Damage Done”). The transcript is available on his website at http://www.scottbowles.net/pages/USAToday_Journal.html.
As for resources on pancreas transplants, I have a number of resources here:
Information About Getting a Pancreas Transplant
Info on getting a pancreas transplant from the National Kidney Foundation.
http://www.kidney.org/atoz/atozItem.cfm?id=162.
Information About Islet Transplantation
For the last 30 years, research at universities and private labs has moved slowly toward achieving a cure for insulin-dependent diabetes. The Islet Foundation (TIF) is dedicated to supporting the “final push” for that research effort, a push that may provide a safe and viable cure for millions of diabetics. While other charitable foundations provide essential funding to the broad spectrum of diabetic needs, including education, training, supplies, legal issues, and basic research. Their activities have improved the lives of many diabetics, but have frequently failed to support research initiatives that are likely to deliver a near-term cure for diabetes. The Islet Foundation is focused on advancing one specific line of research from the laboratory to human trials and, ultimately, to a routine cure for Type 1 diabetes.
http://www.islet.org/
International Pancreas and Islet Transplant Association
The International Pancreas and Islet Transplant Association is a scientific forum for the exchange and discussion of clinical and experimental results and experiences relevant to transplantation of insulin producing tissue in the treatment and cure of diabetes mellitus.
http://www.ipita.org/
Islet Cell Resource Centers (ICRs)
With support from National Center for Research Resources (NCRR), 10 Islet Cell Resource (ICR) Centers isolate, purify, and characterize human pancreatic islets for subsequent transplantation into patients with type I diabetes. The ICR centers procure whole pancreata and acquire relevant data about donors; improve islet isolation and purification techniques; distribute islets for use in approved clinical and basic research protocols; and perfect the methods of storage and shipping.
http://www.ncrr.nih.gov/osptemp/clinical/cr_icr.asp
Islet Transplantation to Treat Type 1 Diabetes
Information from the U.S. Food & Drug Administration (FDA).
http://www.fda.gov/cber/genetherapy/pancislet.htm
Listing of Islet Transplant Centers
Collaborative Islet Transplant Registry (CITR). This organization was initiated and funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), CITR was founded in September 2001. The islet/beta cell registry is coordinated by The EMMES Corporation of Rockville, MD (www.emmes.com), with Dr. Bernhard Hering of the University of Minnesota as the Medical Director.
http://spitfire.emmes.com/study/isl/roster/sites.htm
MatchingDonors
MatchingDonors.com is a web site created to give people in need of transplant surgery an active way to search for a live organ donor. Our goal is to increase the number of transplant surgeries and improve awareness of live organ donation. The most common organs transplanted from a live donor are single kidney and liver lobes. Over 80,000 people in the U.S. alone are on the national organ transplant waiting list, and 17 people a day die while waiting on that list. MatchingDonors.com is a venue where patients and potential donors can meet and communicate, and hopefully expedite a donor agreeing to give a patient a much needed organ.
http://www.matchingdonors.com/life/index.cfm
Pancreas Transplantation for the Treatment of Type 1 Diabetes Mellitus
Article published in the journal “Clinical Diabetes” by David E. R. Sutherland, MD, PhD, and Rainer W. G. Gruessner, MD, PhD of the Diabetes Institute for Immunology and Transplantation at the University of Minnesota on the option of pancreas transplantation to treat Type 1 diabetes.
http://journal.diabetes.org/clinicaldiabetes/v15n4J-A97/PG152.htm
Pancreatic Islet Transplantation
Article published in the journal “PLoS Medicine”, an open-access, peer-reviewed medical journal published monthly, online and in print, by the Public Library of Science (PLoS), a nonprofit organization.
http://www.pubmedcentral.gov/picrender.fcgi?action=stream&blobt…
The Islet Foundation (TIF)
TIF is focusing on islet replacement without immunosuppression. The main activity of TIF is to provide information on the most promising research and to apply pressure to funding organizations and investors to support these initiatives. As a result, TIF is in regular contact with such groups as the National Institutes of Health (NIH), the National Institute of Digestive and Diabetes and Kidney Diseases (NIDDK), the Juvenile Diabetes Foundation (JDF), the American Diabetes Association (ADA), the Medical Research Council (MRC) of Canada, the Food and Drug Administration (FDA), the Institute of Medicine (IOM), the Diabetes Research Working Group (DRWG) of the US Congress, politicians, regulators, pharmaceutical companies, and other private and public bodies that are key to realizing a cure for diabetes in the near term.
http://www.islet.org/
United Network for Organ Sharing (UNOS)
The UNOS Organ Center, established in 1982 as the Kidney Center, celebrated 20 years of service on July 15, 2002. In 1984, as more organ types were being successfully transplanted and the sharing of lifesaving organs became more common, the name was changed to the Organ Center. Since its inception, the Organ Center has provided continuous, uninterrupted service to the transplant community. The UNOS Organ Center helps facilitate organ sharing among transplant centers, organ procurement organizations and histocompatibility laboratories across the U.S.
http://www.unos.org/
hi colleen
my name is karole and im 42… ive had diabetes type 1 since i was 8 and been on kidney dialysis for a little over two years now… i live in ontario, canada… i am on the list for combined kidney/pancreas transplant… it could happen any day and could be another couple of years
i know a lady who has had this surgery… first she had a living donor kidney transplant from her mother… but it rejected… later she had the k/p transplant from a cadavor donor… got some sort of bug and the pancreas died… later had another pancreas transplant… was very sick for a few months… and now is doing very well…
i’m scared to death… i want the surgery very badly… im desperate to be rid of the highs and lows and dialysis and nausea and all the long-term things that have and still could go wrong…
ive had lazer work on both eyes (saving me from blindness) and i have numbness and hypersensitivity in my feet and lower legs… i have frozen shoulder now for the second time… cant take pills for the pain because of the kidney disease and cant have surgery because of the diabetes and pending transplant… ive had appendicitis that went misdiagnosed because it presented itself as a peritonitis would (im on peritoneal dialysis)… i had the flesh eating disease which wasnt caused by diabetes but apparently we are more prone to getting it)… i truly want to be rid of the diabetes and the kidney disease…
but there are so many things that can go wrong during and after transplantation…
no matter what… i know it is worth the risks… still… im scared…
wow, does it feel good just to say that
i go around sounding brave to my friends all the time because i dont want them to worry but it sure feels good to say it…
im scared
Karole
You are very brave. You’ve been through a lot! I’m glad that you’re here and open to discussing these types of things with us. I have not been through half of what you have. I’m terriifed of what you’ve been through. But, aside from that, you are so strong to still be able to put on a courageous front for your family. I’d be a mess, I think.
Thank you for sharing your experiences. I have learned from you.
Thanks for sharing and keep us updated! Our diabetes center will only do pancreas/kidney transplants. Reasoning being, if you need a kidney transplant and will have to take the antirejection drugs anyway, you could then do the pancreas transplant. This is very interesting. I am hoping, by the time my niece is older, there will be islet transplants without the need of immunosuppressant drugs. I have some questions: First, why a pancreas transplant instead of islet transplant with immunosuppressants? Second, how long is the pancreas transplant supposed to last (general timeframe, of course, it is individual), five years? ten? Third, your experiences with immunosuppressant therapy. Fourth, are pancreas transplants more durable, long-lasting and reliable than islet transplants (both using the immunosuppressants) at the present time?
Colleen, is this the BURT study? The one done in Brazil? (injecting stem cells from your own bone marrow)? If so, you have to be newly diagnosed for this approach to work. If not, PLEASE tell me about this study!