I've been doing a lot of research into becoming a living donor and have decided it's something I really want to do.
The problem is I have type 1 diabetes (insulin dependent). From what I have read and after a quick discussion with my local organ donation department that automatically rules me out.
I was told I cannot donate a kidney as the diabetes increases my own chance of renal failure at some point in my life.
Apart from the diabetes I'm perfectly healthy. The diabetes is well controlled, my kidneys are regularly checked as part of the diabetes monitoring. The research I have done suggests that donating a kidney does not increase the risk of kidney failure in the donor.
I feel like I have a spare kidney that thousands of people are literally dying to have. I know and accept the risks and feel like it should be my choice and not a pre made decision.
So my questions are...
Am I being niave, is there alot more risk to my health than I understand?
Is it black and white, there no way or can I still pursue volunteering to donate?
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Timostag
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Hello!!!very kind of you thinking like that, but I don’t think you can do it! For your safety and for the recepient also! Thay wont put a kindey from a person with diabetes!!! Its a huge operation, they minimise all risks!!!
Im a mum of s girl that recently had a kidney transplant from her father!❤️🙏🏻
It's a wonderful thing that you wanted to do but yes you are at a much higher risk of kidney disease your self and even possibly needing a kidney and pancreas transplant yourself. The medication you take takes it's toll on your kidneys which is why yearly th should be having bloods that not only look at your glucose levels but also your kidney function. You really should have had these things explained to you. How long have you had type 1 diabetes?
I don't want to say your naive you just haven't ever been told and had the full extend of the effects of type 1 diabetes can have.
The answer to your second question is yes it is black and white and no way they will let you donate.
I don't want to worry you but you probably already have some sort of function loss. My mum tried to do the paired exchange for me as she wasn't a match and they said her renal function was 90% but later found it was coming from just the one kidney because of scathing and the blood pressure medication she is on.
I'm sorry you were trying to do a wonderful thing and it's people like you that I hang onto and admire as I'm in desperate need of a kidney myself with a renal function a 4% I'm about to start dialysis this week.
Your an amazing person for even considering this and remember you tried to help but you really do need both yours and I hope you never to have to be in this position.
Listen to your doctors and keep your diabetes under control which I imagine you already do. Try and keep fit and health too.
My kidney function is tested every 6 months as part of the diabetes care so I am confident they are currently perfectly healthy. If I died I could donate (my pancreas wouldn't be able to be donated).
I understand that having diabetes increases my chances of kidney problems, but if the average healthy person has a 1 in 3000 chance of kidney failure and a diabetic has a 1 in 1000 chance (I have completely made up numbers) then as I see it I have a 999/1000 chance I'll be fine and therefore should be allowed the choice.
Although your kidneys are tested every 6 months you actually don't know that both are working it could just be one more than the other.
Sorry I know you really want to my dad was a match bit because his function was 70% and they needed it to be 72% he is in excellent health no blood pressure issues, good weight not an ounce of fat on him they would not allow him because of the possibility of an issue and that was some one that only had 2% under the requirement so they are strict and don't bend the rules.
I really do feel for you as I can tell you really want to do this but I would be amazed if they bent the rules. My dad went to 3 different hospitals for 2nd opinions and they all said the same it's the what ifs. They won't run the risk of possibly giving you an issue.
I wish I could have told you different. What about giving blood I'm not sure of the rules on that one I know it's not an organ but that would be a way of helping or bone marrow donation. All massive and very positive things.
I have no idea if you can do these but maybe worth looking into.
You sound like your annoyed at me because I couldn't tell you better news. You were thinking of doing an amazing thing don't ever forget that.
Please keep me posted if you have more success with blood donation or the Anthony Nolan donation
Sorry I didn't mean to come across as annoyed at you. I really appreciated your comments.
I'm frustrated. I've always said to myself that I wouldn't allowed diabetes from stopping me at anything. I know that there is a 6 month testing process to see if a living donor is suitable, so there would be a good chance I would fail those tests. I just want the chance.
The same policy applies to blood donation. The NHS sees it as a risk to my health and therefore I cannot donate, however in most other countries including the US it's not an issue. I cannot donate bone marrow or stem cells as there is a possibility the recipient could develop type 1 diabetes the same reason my pancreas wouldn't be used if that was donated.
Don't worry I understand that your really frustrated at the situation. I thought that might be the case with blood and bone marrow. I can't give blood either because of my kidney condition but also because I'm under 50kg.
Maybe you could do some fundraising for a kidney charity I was a volunteer at the British transplant games this year and it was amazing. My mum and dad because they couldn't be my donor have rmdone a 300mile walking challenge over 3 months to raise money and awareness for kidney research.
I know its not the same but would make so much difference
I'm thinking volunteering as a blood biker would be a good idea. I live to ride my motorbike (Ironically bikers are often nicknamed organ donors) and although it's not the same as being able to donate myself at least I can contribute to the process.
That is wonderful that you are willing to do that, but there is no way they will let you donate. My kidneys took only 3 years from doing good to needing dialysis. Unfortunately anything can happen. Best wishes to you!
The real problem is the arrogance of the medical profession, which imagines that because it plays a technical role in performing organ transplants that must mean that it also becomes the ethical supervisor over what transplants can be undertaken from whom and to whom. Of course physicians don't know the first thing about ethics, yet they think that because they know the technical aspects of transplants that automatically makes them ethical experts on the matter. This results in many absurdities and tragedies, such as parents who would be willing to die to save their children being denied as potential kidney donors because the operation would not be perfectly safe for them, for example.
I believe, in contrast, that patients and donors should be free in a free society to make their own arrangements, and the doctors, like any common carrier in the law, should just be available to carry out the will of the people involved. As an example of physician arrogance, just consider that it was illegal in Canada to form a ring of donors to form a transplant chain between multiple donors and recipients where there was an incompatibility in blood types between a potential donor and recipient pair, solely because doctors considered themselves entitled to make this decision for the state, the law, and the desperate patients. They dilly-dallied for many, many years, causing the death of many people who lacked matching kidney donors as a result.
So, in your case, you would be denied your choice to make a donation because doctors would deem it unethical to facilitate it. A further consideration is that diabetic kidneys are considered suspect organs for transplant, so for many years they were not accepted for donation after a diabetic donor died, even if the donor had not died of diabetic kidney disease. However, on one occasion out of desperation such a kidney was transplanted and it was found, remarkably, that once it was in the non-diabetic recipient the prior diabetic damage to the organ was repaired. So this argues for diabetic kidneys being safe for potential organ recipients to receive.
That is quite honestly the most ignorant and insulting thing I've read in a long time. I'm a young patient desperately in need of a kidney and your comment insulting the many doctors and consultants who've kept me alive is baffling me.
If a doctor believes an operation to be unsafe or life threatening to either patient then that's enough reason for them to refuse to do it. My parents would do anything for me but they have diabetes and heart conditions which make them unsuitable donors. I would NEVER ask my parents (or anyone else for that matter) to go into a potentially deadly situation to give me a kidney.
Theres always a risk that my body would reject a kidney, or the other person might get severely unwell, but have you actually considered what that would feel like? If you needed a kidney and someone gave it to you only for them to get sick or die as a result?! One successful transplant is not a rule and just because that one person was lucky doesn't mean we should start making exceptions everywhere. If a doctor says it's best for someones health not to transplant then they should listen. Doctors know what they are doing. They keep us alive when we would die otherwise and they try their best to make things as fair as possible.
I feel for OP and I'm so grateful for the people like them who want to give that gift, but if they have a problem that makes them unsuitable then it's better for everyone that they dont.
Suppose a desperate mother saw her child screaming from the window of a burning building and wanted to rush in to save the child. Would bystanders have the right to stop the mother from doing that because they thought it was risky? That is the situation we have when a person wishes to donate and doctors refuse to cooperate because they think it is medically inadvisable for the potential donor to do so. Why is it any of their business?
There was a case a few years ago of a father who was serving a life sentence in prison who had donated one kidney to his very young daughter. The transplant failed after a few years, and he wished to donate his remaining kidney, but doctors regarded this noble act of self-sacrifice as unethical because the father would then be on dialysis. But if, in the father's own judgment, given his essentially worthless life in prison, it was a sensible and ethical trade-off for him to go on dialysis so his daughter would have another chance at life, whose decision should it be, his or some people who don't know either him or his daughter, other than as customers?
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