i recently found out that my boyfriend is diabetic. he has been since he was 13. at 19, the doctors have told him that his body produces NO insulin. the estimate that unless he gets help soon he won't live past 25. i heard about islet cell transplantation and that it has a higher success rate when it comes from a live donor. does anyone know a way that he could possibly be considered for the treatment....even if it's experimental. i would even be willing to donate cells. if anyone knows of any options your help would be greatly appreciated!
Markie offers good inforamtion below. Most of us with Type 1 make no insulin and that is why we all take injections or use an insulin pump. It is not exacatly the lack of "making insulin" that causes us our most serious risks, it is more the lifestyle choices we make (or don't make) to compensate.
Again like Markie, I've had diabetes for several decades and -- unless we find the cure before then -- I expect to have it for several more. Actually, I expect that what I eventually die from will not be related to diabetes.
As a teen, it can be a struggle to WANT to take good care of oneself and yet that's exactly what's expected of us. I remember my childish behaviors as a teen with diabetes and am grateful I eventually saw the light. It is unlikely that your boyfriend needs a transplant; it is more likely that he needs to learn to do frequent blood tests & to adjust his insulin based on those numbers and his exercise, food, stress levels, etc. Despite having a disease for several years, he may benefit from some professional diabetes education at this point.
Finally, pls recognize taht there is almost nothing YOU can do to change his attitude & behaviors toward managing his disease. In the end, each of us is responsible for what we choose. YOu can be encouraging & compassionate, you can educate yourself on good care, and yet if you find yourself PUSHING him more than he pushes himself, he is telling you he has no intention of taking care of himself. THen, you, too, have choices to make.
Since none of us here is a medical professional, encourage him to make an appointment with an endocrinologist, the type of specialist who treats folks with diseases like diabetes. At his age & stage, the choices are still his ...
I assume that your boyfiend is injecting insulin. Because if he is, and he is controling his blood sugar levels, he shouldn't have any problems. I have been injecting for 28 years and have no health problems at all. And I don't expect to have any either.
It sounds like the doctors have given your boyfriend a stern warning to get him to improve his control. Transplanting islet cells is really the last resort. It is only an option for people who have exhausted all the avenues and absolutely can't achieve satisfactory control with injected/infused insulin. It is a major procedure, it means that anti-rejection drugs become essential, and the benefits at this stage are generally temporary anyway.
I would suggest that at 19, there are other easier ways to achieve good control.
I must agree with the first two comments. I was diagnosed at age 12 and am now a very healthy grandmother. There is no reason a type 1 diabetic cannot live to a ripe old age IF that person tests often and adjusts his glucose levels with insulin or food, depending on whether the blood glucose test numbers are high or low. If this young man's doctor has given him such extreme advice, I must assume that either of two things are happening with him:
1. He is already suffering severe complications -- if he already has kidney disease or nerve damage or any of the other more severe complications, then the doctor's blanket statement about his future may be true and he may indeed be a candidate for an islet transplant. This treatment is still experimental, and is only done on patients who are carefully screened and who have serious health problems. The average otherwise-healthy diabetic is not considered as a candidate for transplants because of the risks involved and because of the side effects of anti-rejection drugs. If your boyfriend is indeed suffering from severe complications, he can ask his doctor to refer him to some of the research centers where transplants are being done. But there is a long waiting list, and the best thing he could do while waiting would be to get the best control possible. Most experimental transplant programs do not use live tissue donors.
2. He may have poor diabetic control right now, and his doctor may be trying to wake him up to the grim reality of what can happen to him if he doesn't start taking better care of himself. As a volunteer for the Juvenile Diabetes Research Foundation, I cannot tell you how heart-breaking it is to get e-mails from young people in their teens who already have lost their eyesight or who are on dialysis because of kidney damage -- they all say the same thing, that they would give ANYTHING to be able to step back in time and take better care of their bodies. Your boyfriend's doctor can tell how good or bad his overall diabetic control has been over the past 3 months by a simple blood test that is routinely run every time we go in for a check-up. There is no way to "cheat" on this blood test, and the doctor can see by the number that results whether your boyfriend is taking the right amount of insulin for his lifestyle or not.
If not, then the doctor must try to get his attention by reminding him of the damage that these high numbers are doing to his body. The solution in this case is not an islet cell transplant, but a determination to do what is necessary (test often and react with food or insulin) to get those glucose numbers within the normal limit.
The fact that he makes no insulin at all (most type 1 diabetics make no insulin) is not his problem if his control is not good. We now have all sorts of types of insulin and means of delivery (from tiny needles to pumps) that make it possible for EVERY type 1 diabetic to live happily with almost normal glucose levels. Good control is the best way to protect him from possible damages. I have no damages at all after living for 26 years with type 1 diabetes, but I would not be so fortunate if I had ignored the disease when I was young.
SO... one of the 2 situations I describe are probably what the doctor is responding to. You might ask him what his last hemoglobin a1c test result was. The standard is for doctors to tell diabetics that they need this number to be lower than 7 in order to protect themselves from damage. Many type 1 diabetics in this day and age are able to keep this number comfortably very close to 6, and some even in the upper 5's, which is normal for non-diabetics. If his number was above 7, then the doctor is trying to get him to wake up and smell the roses so to speak before he hurts himself.
I applaud you for caring enough about him to ask this question and for being willing to consider being a live tissue donor. You sound like a very caring person, and sometimes having someone care about us and about our health is just what we need to motivate us if lax control is the root problem.
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