kidney donation advice and information please

I hope its ok to post this here, I felt that this would be a good place to ask for information and advise as I don't really trust the governments published information on anything, at least here I will be given over all a balanced view,

If I assume I would be a match to donate a kidney, how likely is it that

a) my remaining kidney would last the rest of life

b) could having just on kidney make it much more likely the remaining one would fail me

c) how likely would it be that the recipient would get another 15 years without dialysis

d) does donation tend to affect mental or physical health after recovery from the operation

I am sure there are many more questions that need answering, but these are the only ones I can think of,

A school friend of mine needs a transplant, she won't survive many more years without one, she has a long term stable marriage, children, grandchildren, a fulfilling job and a happy life, no one in her family is a match, I can not begin to imagine what it must like for them, waiting and waiting,

If it was my child, or brother, I would just volunteer, but much as I would really like to do something meaningful for someone who I feel deserves it, the last thing I want to do is tell her I am interested in knowing more, then say no, in my mind, that is not fair.

has anyone here done this?

I am aware of the fact that there are many very educated and experienced people on here, hopefully a transplant surgeon who is happy to be totally blunt with me.

I do know I am o plus, so in theory can donate to someone of any blood group, but I did have a blood transfusion after 1979, so can not donate blood because of the risk of cjd.

apart from that I really know very little, can anyone fill me in? are there sites that give truthful information rather than NHS information, which to be frank, I don't trust very much?

I do hope you can all give me more knowledge on this, so I can make an informed choice about whether or not to offer to be tested.

I hope you all don't find this too trivial as its not a conspiracy, hopefully not anyway

reply to post by eccentriclady

but much as I would really like to do something meaningful for someone who I feel deserves it, the last thing I want to do is tell her I am interested in knowing more, then say no, in my mind, that is not fair.

I couldn't give you any useful advice how loss of a kidney would affect you. It is a noble notion on your part. If you are serious you can find out your questions without talking direct to her at first.

Why you have aversion to checking on line for information is a bit odd… Heres a list with FAQs and organizations that can answer some important questions.

links

reply to post by eccentriclady



If I assume I would be a match to donate a kidney, how likely is it that

a) my remaining kidney would last the rest of life

b) could having just on kidney make it much more likely the remaining one would fail me

c) how likely would it be that the recipient would get another 15 years without dialysis

d) does donation tend to affect mental or physical health after recovery from the operation


I have some medical knowledge and I am currently a 'Be The Match' bone marrow donor offer-er; I'll age out of that possibility in a few years, though.

To answer your questions:

a: There's no way of knowing if your remaining kidney will last the rest of your life or not; making sure you never allow your blood pressure to go too high (high BP really rips the kidney and its blood vessels to shreds), as well as avoiding toxins like tobacco, alcohol, etc would be a very good idea. If you feel you can't do this, you shouldn't consider it. Your overall health at whatever age you are now is pertinent. You probably wouldn't be considered in any event unless you were on the high end of 'healthy'.

b: Having one kidney is considered 'enough'. Two is considered redundancy. Obviously, if there's trouble with the one you have left, it's a more serious matter.

c: No clue about the '15 more years' without dialysis. It all depends on what caused the kidney disease in the first place, has that issue been mitigated, etc. Some kidney recipients are not so great at taking their anti-rejection meds and end up rejecting the organ quickly. Some reject for no particular reason...

d: As far as your mental or physical health goes, unless you have an untoward reaction to the anesthesia or the operation itself (a fairly simple one, actually) you shouldn't have any bad reaction and may actually have a good one, having done a good deed, etc.

Your blood type isn't the only thing that has to match. It sounds like you haven't been matched with this particular person, there's a lot more to it as you'll find if you get some more information.

Good luck, and thank you for considering this big step.

We have two kidneys. It has recently been found that there are some things one kidney does that the other doesn't do. I don't know if the other kidney will assume the job of the other, the article I read about this stated that it would need more investigation.

I would donate a kidney to my kids or grandchildren if they needed it but my kidneys were damaged from taking meds for five years that I was found to be intolerant to. I doubt if they would do any good. I guess I can't tell you if it would be problem, I haven't seen any more research on what I have said above. If my kidneys were good, I don't know if I would donate a kidney to a friend, it means I would only have one left, if the remaining kidney gets damaged, I would not have a backup, I would need a transplant myself. I don't have to worry about either situation, I am sure a doctor would never use my kidney on anyone, not even my own kids or my wife.

It is up to you, you are the one who has to make the decision.

reply to post by eccentriclady


I'm in agreement with signalfire.

Further, as with any medical procedure, especially invasive, there are risks.

Your recovery time from donation will be substantially longer than the recipient, but, afterwards, your life should resume to normal, though, without redundancy, I'd recommend keeping an eye on any health risks with medications that could affect your remaining organ.

I would suggest looking up some of the Living Donor websites and forums online where you can repeat these questions to a forum of people consisting of many who've gone through the procedure.

ATS being a Conspiracy website and all, as much as all of us enjoy it, there are other websites, as suggested, better suited to this kind of question.
There are also a number of Physicians online with blogs relating to this.

Review the available materials online. Get in touch with donors who are sharing their experiences online and in forums, and get as many opinions and statements on the subject as you can gather.
The majority of the information you will find will be supportive.

All in all, you should be fine.

Well ill tell you from my personal experience with my dad... regarding how much time will the kidney last healthy that will alwas be unknonw because as it can last 1 day it can last 20 years people who have recived a kidney will always be in danger of rejecting the organ. It will also depend on the diets and the lifestyle she has. She cannot get stressed, nor eat some seafoods or stay prolonged times at high temperatures. :m not trying to scare you with the organ rejection just being realistic. I have known some people who have received 2 or 3 kidneys and still they fail after 2 4 months and then they hit the right one that lasts 6 9 years. So its kinda like random on the time it will last but the better if she does good on staying healthy. Also she has to drink lots of water. She will have to be isolated for at least 3 months with no contact with the exterior house completley clean. Can only eat homemade food with certain foods that little by li tle she will be able to eat more foods after the 3 months she will be able to go outside but wth a mouth cover avoiding places that are too crowded always having her medication... if she want to eat out.. she has to go to restaurant that are very clean.. no fast food... and i dont remember what else you asked since im writing from my cel and i cant go back to see the questions...anything else feel free to asks... also it will be really difficult for her to recover over the time if you are the donor it wont be so for you... she will have a normal life eventually prefreravly over a year or so..hope it helps.. dont hesitate to ask.. and good luck.

I'm both a registered nurse and a kidney patient, my transplant is scheduled for February.

Even if you aren't a match, they have a paired exchange program where your kidney goes to someone else and their kidney goes to your intended person.

With the advancements in transplant technology and knowledge 15 years is very likely, but it depends a little on why the kidney is needed, some diseases do better than others.

I have PKD which luckily has the longest organ survival rate.

If they thought for a minute you would have a problem living with one kidney they wouldn't allow you to donate. You will be given a very thorough medical exam once you agree to be a donor, if there are any issues they will find them.

Mine is coming from my sister, which is also lucky since kidney donors have gone way down.

reply to post by intrptr


Its not that I am adverse to finding information on line, its more that as we all know, there is much inaccurate information around and although I trust myself to judge the accuracy where some situations are concerned, if I decided to go ahead and be tested for a match, it could be life changing, that makes a little more unsure about taking information as fact, when it may not be. Misinformation is rampant on the net, too many people believe everything they read, it can be difficult to weed out fact from fiction. Thanks for the links, will have a good read through

reply to post by signalfire


I am 46, my blood pressure is very very low, always has been. My physical health is fair for my age, even though I am a smoker.


I wouldn't even consider this if I didn't think my body could take the operation. I know I have two functioning kidneys, as in my teens I had a couple of kidney infections and ended up having tests done to check their function.

So rejection of transplants are not unusual?

No I haven't even spoke to lady about this, it just an idea that has been rumbling around in the back of my mind for the past year, which has got stronger since I discovered that my blood type makes it more likely I could be a match.

I would then need to consider the odds of one of my sons needing my kidney in the future, or my last kidney failing.

She did tell me what caused the failure of her kidneys, but I forget, I do know it was just one of those things, it was diagnosed 3 or 4 years ago, right now, she is having iron transfusions, but it will progress to dialysis in time.

This is a difficult subject to discuss with family and friends, while it is just in the thought stage, I doubt my family would be supportive, as this not a close friend, just a lovely person who I believe deserves a break.

Thanks for you imput, plenty to think about here,

reply to post by rickymouse


I really don't feel I have enough information to even choose to speak to her and meet with her doctors, hence I am here. If it was one of children, I wouldn't even be asking questions, I would have been at their first appointment and insisted I was tested immediately!

Although I have looked at information, I was not aware that recent information suggested loosing one kidney could potentially cause problems unknown at this point! I will try and find more information about that. Thanks for bringing it to my attention

reply to post by AliceBleachWhite


I didn't realise there were medical forums that discuss this, although I have looked through the available information, I haven't come across them, I will look for them and post questions there.

I know this is site is for conspiracies, but there are so many knowledgeable people on here, who work in all walks of life, I thought it was worth starting here, on my quest for information, as I found the NHS sites had little in the way of real depth.

Thanks for your input, its very helpful

reply to post by carlosamado13


It is really difficult using a cell! I didn't realise there was so much to ensuring the recipient's health after the operation, although she seems to be a "clean living" type of person! There are many people I wouldn't even consider doing this for, because of their life style, choices etc, but I am as sure as I can be, she has plenty of support, (adult daughters and a wonderful husband) pretty convinced she would treat any donation with total respect and do all she could to ensure it "took".

Selfish as it sounds, I am more concerned about the future impact on my health along with where or not its worth me taking a chance, to help her. Guess I need to look at some statistic of rejection.

If I knew for a fact that she wouldn't reject just because, and my kidneys were still healthy I would be much more likely to go for match testing now. Rejection sounds to be quite random, possibly happening for no apparent reason, that concerns me.

Thanks for your experiences, if I decide to go further with this, I will ask you more questions, if that's ok

reply to post by Hmmmmmmm


I did see information on the paired exchange, but to be honest, didn't look at it, she is also 46, so it could give her enough time to see her grandson grow up.

I am so sorry you are going through this, life does throw some problems at us, its good to here you are going to have your transplant, I do hope it all goes well for you.

Perhaps you can tell me about the fact that I am not allowed to donate blood, or bone marrow. could this impact the possibility of donating a kidney to someone who could make an informed choice. I can find nothing about this on the web.

I had a 3 pint blood transfusion in the mid 80's, 3 months before donated blood was screened for HIV, I eventually got tested for everything under the sun and came up clear, but its not possible to be screened for cjd, which I understand to be the reason that people who received blood after 1979 are not allowed to go on donation lists. would this be a problem?

It is suspected that I am autistic spectrum, I am waiting for a specialist assessment, to decide, although it is looking very likely. Would that impact on the possibility of being allowed to donate?

Thanks for replying, its interesting to hear from someone who knowledgeably on both sides.

They took some fairly extreme measures once they found out HIV was in the donated blood supply, but it shouldn't keep you from giving a kidney.

If you make this decision nobody will know until after your testing is complete, this avoids emotional roller coasters for the person needing the kidney. If you aren't a match, or even if you are, it is your decision to tell the patient, not theirs. You will have an entirely different team for the whole process. We had to fill out a ton of forms just to avoid the information wall between donor and recipient, and my donor is my sister. This is partly to avoid the selling of organs (I've been approached) but mostly to lower the emotional stress on the donor.

Nobody is waking up in a bathtub full of ice and finding a kidney gone, the testing is way too extensive for a kidney like that to be used. But there are payment arrangements between some, which is a big no no. I had a few offers while registered at a kidney disease discussion forum. At the time they were asking between 10k and 20k, and while I said no, quite a few say yes. You will be asked if you are being paid anything of value from the donor, don't be offended, everybody gets asked.

One patient I met was given a kidney from a janitor at the hospital. He was in the elevator with her and her husband and overheard their conversation. No family in the country, fairly new to the area so few friends, etc. He went to the transplant center and described her saying he wanted testing and they were a 6 for 6 match.

What you are considering is a pretty huge gift, and the medical field knows it, so they will put in the effort to ensure it isn't wasted.

Part of the decline is because young healthy donors were seeing their organs go to 85 year old brittle diabetics with heart conditions who only lived a short time. So now the amount of time on the list is only one thing they look at, outcome and potential life are given more weight.

Read the literature, talk to a donor coordinator, become as knowledgeable as you can before deciding. And you can back out at any time, so just going there doesn't lock you in or anything,

reply to post by Hmmmmmmm


So I would approach the hospital dealing with my friend and speak to them first? I didn't realise that was the way it worked. Years back I saw a family ripped apart, the daughter didn't manage her diabetes, needed a transplant, the mother came home from abroad was given a council property so she had somewhere to live while waiting and for the recovery period, then at that last minute pulled out! I wouldn't want to raise false hope, as much as I would like to do this, I am not sure at this point I am actually prepared to do so, horrid as that sounds, its a very very big decision for me. I would feel terrible raising the families hopes only to dash them again.

Much as a few thousand would really make a big difference to me, I am considering this because over the years I have seen many people I feel undeserving, get help in so many different ways, from so many sources, but those who have created a good life for themselves seem to get little in the uk. I feel this lady deserves a break, the opportunity to enjoy that which she has worked so hard for. No other reason, unless you count the fact that if it was my child, or sister I would hope that someone would do this for them.

I haven't had time today to look at the forums, but I will do so. I intend to discover all I can about this, then if I feel I want to go ahead, get tested and check its possible. Then I would talk to my sons and if I still felt the same, my friend would be the last person I told.

I really am only at the very beginning of this process, I need to be very well informed to take it any further, I do not want to put pressure on myself to do this, as if I happened to be a good match, (which isn't that likely) I could then feel almost obligated to go ahead.

I am really grateful for the information, support and comments given here, I didn't know where to start, now I do. Thank you

reply to post by eccentriclady


Thats quite alright. I totally get the 'who to trust' thing on the internet. Thats a good attitude to have. Having said that, I also know and you said that you could recognize good information when you read it. It depends on your search queues.

I included "consequences" and the articles that appear speak to negative aspects of donating a kidney (what to watch out for in other words).

This one was good. It highlights the problem that donors aren't cared for as well as the recipient…

donors plight

This one asks questions about your motives and who is eligible, etc.

FAQs

Good info. Sorry if you already read these.

I'm not sure how the UK is, my info is about U.S. donations.

But yes, become educated about the entire process, it's the only way to be sure.

reply to post by intrptr


I haven't read them, I became a bit overwhelmed with all the information, so put it to the back of my mind for a few months, then posted here as she is having an iron transfusion today and it made me start thinking about this again. An elderly friend (retired research nurse) used to have them, the state she came home in was dreadful, although they did benefit her in the long run, they were very painful. She used to tell me how valuable donors are, although she would never have wanted one, due to her age, she felt that any available kidneys should go to the young. A wonderful women. she is part of the reason I am looking into this.

I don't trust any government run establishment, website etc, however I am at ease with the hospital that would be involved, as I lived in the area for years, have been treated by them a few times, as have my children and my family. It is not a perfect hospital by any means, but personally I have a reasonable opinion of them. There are problems like mrsa to consider too!

I have found the coordinators phone number and will call in the morning, as I now know it will be confidential at this point. That really made a difference.

I doubt the procedures are very different in America, I will have to see.