Why should we have to wait for kidney failure to occur before we can be considered for a pancreas transplant?

I was just looking at some videos on Yutube , and outa curiosity I typed in dialysis . Big mistake cause it ended up taking me to a video of someone going threw there first day on dialysis . His arm was bruised so bad it looked like it was broken or something . It’s one thing to watch someone go threw something like this and feel sad for them but your not supposed to end up feeling sad for yourself . I don’t know how to deal with the fact that I have the condition type 1 diabetes that caused that mans kidney failure . I can barely deal with the crap that this diabetes gives me at the moment ( highs for no reason , and can’t keep my bl between the perfect range of 80 and 140 cause when I do this I always go low ) if I Registor at 90 and I decide to walk down the block I will drop to like 60 . So my bl always seem to range between 130 and 230 which I know is a bit high but it let’s me live life first ! My point is this I just don’t understand why a type 1 like myself who’s been diabetic for the last 22 years ( currently no complications) would have to wait until dooms day to get a transplant ? Why not just do it while I’m healthy , young , and still have a chance of living to become a nice old lady . I looked all this up online about where these procedures are done and there’s one hostpiral called barns Jewish hostpiral in Washington I believe , they display a phone number and say " call to schedule your consultation " as it your about to order an item from the home shopping club or something like that . Then I saw a video of a girl talking about how perfect her life has become since her transplant where she never knew what it felt like to feel normal , and I don’t know if these stories are real or just actors trying to give the hostpiral a good name ? This has always been an issue that had lingered in the back of my mind , how would I deal if one day I got blood work back and it showed kidney failure . At the moment I’m 32 and a single mom of a 5 year old . If I had to go to do dialysis treatments I don’t even have a husband or a boyfriend that could hug me while I cry like a baby in their arms I would be all alone . So I think that this is why the future complications that can arise from this diabetes bother me so much . You always hear about the people who have survived threw major health problems , and you almost all the time will hear them say " oh and if it wasn’t for my husband/ wife / significant other I would not have had the strength to endure all of this . Am I crazy for thinking things like this ? Is there anyone else out there who has a hard time dealing with these fears of mine that have become a reality to alot of diabetics out there

MOstly becasue if you get a pancreas transplant alone, (just as with ither transplants), you have to take several immunosuppressant drugs which put you at risk for infection and other complications. They feel that the pancreas along with the kidney justifies the risk of being on lifelong immunosuppression. It is a risk benefit thing.

Well, a pancreas transplant is actually a serious thing. It is actually not a regular transplant because you need to keep your native pancreas because if the transplant fails and your native pancreas is lost, it will likely kill you (your pancreas does a lot more than just produce insulin). So they put the islet cells in another place. There are three kinds of transplants, Pancreas Transplant Alone (PTA), Simultaneous pancreas-kidney transplant (SPK) and Pancreas-after-kidney transplant (PAK). The vast majority are of the SPK variety. Any transplant places you at some serious risks afterwards and you have to take immune suppression drugs for the rest of your life. And those drugs can mean that you have some serious health risks because you are left with an improperly working immune system.

But most of all, for a variety of reasons, the PTA doesn't have the success rates. So because of the high risks of the surgery, the increased health risks because of the need for immune suppression and the lower success rates, we don't hear about many transplants of pancreas alone. Life after a transplant is not perfect, no matter what anyone says.

Transplants are very risky. First, it's major surgery, during which you can die. Following surgery, there is the risk of infections, blood clots, and all sorts of potentially-fatal complications. Then, like all transplants, you would have to take drugs to suppress your immune system so that you don't reject the new organ. Immunosuppresents (steriods, cyclosporine, etc) have some pretty serious side effects, one of which is....diabetes! They can also increase your risk of developing cancer and make you more susceptible to viruses and other illnesses.

In addition, type 1 diabetes is generally the result of an autoimmune attack on the beta cells in your pancreas. Basically, this means that you have antibodies in your blood stream that attacked the beta cells in your pancreas. My understanding is that these antibodies remain present and would likely attack the beta cells in the new pancreas. This is why people who get islet-cell transplants usually only get a temporary reprieve from diabetes, and eventually begin requiring insulin again.

This is not to say that better treatment for those of us living with type 1 diabetes doesn't exist in transplantation; just that, at this time, the treatment is too risky to be used extensively (not to mention that whole shortage of organs thing).

My father died from complications resulting from T1D after years of dialysis and other scary complications, so I saw that firsthand. But, more than ever, we now have the tools and knowledge to manage our disease in a way that can hopefully prevent these frightening complications. My father and the other relatives of mine who had T1D didn't have these tools; many of them lived during an era when they took one shot of NPH each day and never tested their BG (no meters back then). Today, we have meters, fast-acting insulins, pumps, and CGMs. No, these things are not a cure, but they enable many of us to keep our BGs and A1C in a range that, while not perfect, greatly reduces the risk of diabetic complications.

As others have stated transplantation is with HIGH risks, not only from the surgery but also all the immunosuppressant drugs you will have to take for the rest of your life. Not to mention the strong likelihood of type 1 being autoimmune, more than likely at some point the same immune attack would attack the new pancreas and you would be right back to where u started with. I know diabetes is a PIA, and it can be trickey and difficult, but to live a long life, and be relatively free of complications get yourself in good control. Me personally at this point in time, I would not trade managing my diabetes how I currently am for a pancreas transplant that will require the life long use of dangerous drugs and most likely does not have a very high success rate.

Though transplantation is not an option for most people with diabetes I knew a lady locally in my area that had the kidney/pancreas transplant and she swore it was like being reborn despite the anti rejection drugs. I am aware of a few companies closing in on protected islet cell transplants either using stem cells or pig cells that may function for periods of time without the need for anti rejection drugs. Just don't expect it any time soon.

Yeah, I'm with you. Managing T1 is a real pain sometimes, but overall I'm healthy, active, and able to do whatever I want (provided I have access to insulin, which I do).

I have a colleague who had a kidney transplant three years ago. She's been a T1 since she was 3 years old; she's 47 years old now. I believe she also received some islets from her donor, but I don't know how much about that part of the transplant except that the kidney came from a living donor. She is still on an insulin pump and a CGM and she tests her BG more frequently now than she did before the transplant. She says that she has to test more often because elevated BG is often the first sign of illness or infection. She's more manic about her diet and particularly her carbohydrate intake than I am, and lots of people think I go overboard! :-) In addition to her care team, she has regular meetings with the pump manufacturer representative as they all work together to keep her insulin levels as absolutely normal as possible, using an intricate combination of basal, bolus and square waves. And she takes heavy retroviral drugs that caused her to gain weight and become fatigued. It took her over two years to lose the 25 pounds she'd gained from the cortisone: losing weight is much more difficult now than it was before she had the transplant.

She's very glad she had the transplant. Her kidneys were shot and dialysis was horrible. But I don't think she'd say that she has a perfect, normal life. She feels so much better than she has in years, maybe ever, she says. But she can't forget that she's diabetic. Her body still manufactures antibodies that will attack her pancreas and kill beta cells. Keeping her BG absolutely normal is her best hope for avoiding damage to her new kidney and further damage to her pancreas. She says that the biggest change is that she isn't having dialysis any longer; she's still putting an enormous amount of time, energy and effort into staying well.

When I told her I had been dx'd and that I'm still not sure whether I'm a T1 LADA or a T2--I have other autoimmune conditions (Hashimoto's and MS); I'm producing insulin, but not in great quantities; I'm insulin resistant; some of my overall patterns are like T1, others more like T2; my endocrinologist thinks I'm an atypical T2 and may gradually become a T1--my friend's immediate response was to get my BG under control, whatever it took, and to maintain it. She believes very firmly that this is realistic and that it's the only way to avoid nasty complications in time to come.

Marie, why not see your endocrinologist and/or a diabetes educator to find out how to manage your BG better? I'm sure there's a way to compensate for what happens to your BG when you exercise--a way that's better than running at levels that are too high for your long-term health.

I think we're all afraid of complications, for very good reason. There's no 100% guarantee that normal BG will result in a complication-free life. But the odds are so much better that it's worth the struggle to get there. You can do it! Ask for help everywhere you can. You deserve to have excellent control and a long, healthy life.

I’m a bit confused how some people can have such good control and some people just can’t ? For example if I’m 90 before dinner I will still Registor at 200 an hour later . So when people say they have very good control does that mean that there bloodsugar never goes above 200 even after a meal . Sometimes I’ll be 140 before I start to drive but yet I feel weird so I’ll keep
A bottle of coke in the cup holder and just sip it as I drive and after a 25 minute drive I’ll test my bloodsugar and I’ll be exactly the same give or take 10 points , so that makes me believe that I start to feel low before the machine registers as a low because I start to feel low as soon as I start dropping . So this has become a problem for me because sometimes I have to just listen to my feelings . The other day I was 134 and I felt really thirsty
And I ate nothing except for a sugarfree icetea and an hour later I was 210. So it’s very annoying that my body
Starts to feel the weird feelings of a low as soon as I start dropping and I feel the symptoms of a high once I start riseing . Like right now I feel terrible I just tested and I was 220 and I took 4 units of humolog with no food and I feel even worse so this means that I was rising before I registered at 220 .

First off how high is your carbohydrate intake at meals, the majority of us all maintain a pretty low to moderate carb intake, some more so than others. I try to average no more than 30 grams of carbs per meal, but I've found lately that I really do get even better control avoiding certain food. If your bs is spiking to 200 after eating, then you are either consuming to many carbs, or you need to adjust your insulin/carb ratio. 2 hours after eating you should be below 140 and coming down. Also several of us use insulin pumps which makes fine tuning a lot easier, you can give yourself much smaller corrections and make adjustments much easier than you can with MDI. However the pump is not a magic fix it really does require a lot of attention, and more vigilence in staying on top of things. If you don't have a good endo managing you, I'd HIGHLY recommend it. Diabetes is so complicated, and each and everyone of us varies in our treatments, even the types and amounts of carbs we can eat. In my personal opinion this is way out of a general practioners management level.

My last A1c was 5.5...that doesnt mean I dont ever have days that just go to heck, but those days are minimized considerably. Your basal rates might really need adjusting too if you went from 134 to 210 without eating. But if you don't have a good endo please find one. I really think that can make a huge difference in your management.