Thinking of donating a kidney to a stranger - good or bad idea as a CFS sufferer?

[helperofearth123]

Hi everyone,
As the title says I'm thinking of donating a kidney to a stranger, just as a good thing to do. I know the risks for healthy people and am willing to accept those but there are a few other potential problems that I am aware of as someone with CFS/ME.

A bit of background
I have had moderate CFS for 6 years, I can currently walk about 30 mins a day and struggle to read large amounts. Mine started originally from a verified lyme infection which was then treated effectively with antibiotics only for CFS to follow some months later.

Problem number 1:

What if I'm still infected with lyme or have other (undetectable) infections that are causing my CFS? Could they be passed on? The doctor say I am not infectious and latest research coming from Norway seems to involve a non-infectious mechanism, but still is there a small risk? Although its better for the recipient to come down CFS than die from lack of a kidney, so this may not be enough of a reason to not go ahead. Still it seems unlikely they would get 'infected' with CFS but there does seem to be some very low risk.

Problem number 2.

What if I need antibiotic treatment or rituximab in the future? Will my body be able to handle future CFS treatments with just 1 kidney?

Any thoughts on this would be appreciated,

Thanks

 

[Old Bones]

@Matthew Jones It sounds like you have given this serious thought, so perhaps you have already seen this article:

https://aprescriptionforme.wordpress.com/2015/06/18/can-people-with-m-e-give-blood-and-organs/

One issue you haven't mentioned is the adverse reaction many people with ME have to anaesthetics. This would be a concern for me based on past experience, and just one of the reasons I would only consider donating an organ to someone whose medical condition was worse than mine, and whose potentially worsening illness, or death, would adversely impact my life.

Your considering donating an organ to a stranger is very noble, but not one I'd make for myself, especially while dealing with my own disabling chronic illness.

 

[Neunistiva]

These is just speculation on my part, but if Dr. Mella, Fluge and Dr. Davis are right, our cells get healthy in other people's bodies.

One issue you haven't mentioned is the adverse reaction many people with ME have to anaesthetics.

I've seen this mentioned often, but I would like to say that I spent 26 hours under general anesthesia with ME/CFS of medium severity and my body handled it very well.

Nurses seemed concerned with my low blood pressure, but now I know that's just a regular ME/CFS symptom.

I would be most concerned with any future therapies. But maybe one kidney can handle it?

 

[Keela Too]

Are we not banned from blood and organ donation?

 

[Kati]

Hi @Matthew Jones I do not think that giving away tissues, organs or blood/plasma is a good idea if you have been diagnosed with ME, for the sake of the recipient.

There is one proof that there are changes in biochemestry when blood is exposed to healthy muscle cell, from The latest norwegian paper. Read the section "Effects of ME/CFS patient serum on mitochondrial respiration and lactate production in cultured skeletal muscle cells." from their paper.

There are many who feel they have transmitted the disease to their partners, while it has not been studied well. There are also multiple generation families affected, which raises another red flag.

While your intentions are great, you may do more harm than good in the light of the recipient needing to be on immunosuppressants for the rest of his life in order to prevent organ rejection. i am sure the last thing you want is create more problem for the recipient.

We need to get to the bottom of what we have before we can donate tissue/blood products.

If you are not convinced, I invite you to write to dr Fluge/Mella to see what they think.

Best, Kati

 

[Seven7]

Bad Idea.
In my book Cfs is worst than death.

 

[Jenny TipsforME]

@Matthew Jones this seems like there would be problems on a number of levels. We're ruled out for giving blood but not organs, which is a weird distinction. There isn't enough knowledge to know that you wouldn't pass on ME to the recipient.

It would put your health under unnecessary strain. I suspect for this reason you wouldn't be accepted, so the decision making process is probably only hypothetical.

It is amazing that you're altruistic enough to want to do this but could you channel this in another way? Would you feel like you've done enough if you raise money for a relevant charity or volunteer to encourage other people to sign up as organ donors?

 

[TiredSam]

I know someone with ME who donated a kidney to her son. He now has ME too.

 

[Kati]

I know someone with ME who donated a kidney to her son. He now has ME too.

That is quite telling and quite sad
In my opinion, until we find cause and mechanism of illness it is best to not donate organs, tissus or blood products. There are other ways to share the good.

 

[alex3619]

Are we not banned from blood and organ donation?

Depends on the country. We are in the UK.

PS It used to be the case, and I think still is, that we cannot even donate organs in the UK after we die.

 

[alex3619]

I know someone with ME who donated a kidney to her son. He now has ME too.

 

[Dechi]

You've had very good answers. I agree with everyone. For the sake of the other person, and for your own sake, I would not even consoder it if I were you. I don't know if you have financial problems and are looking for a way out, but even then, It's just not worth it.

 

[Little Bluestem]

I'm also in the 'No' camp. People with ME often have viruses. I know someone who got a heart transplant, then came down with a viral infection. The doctors thought the virus probably came along with the heart of the apparently-healthy donor. Since she was on immuno-suppressent drugs, the virus eventually killed her.

 

[CFS_for_19_years]

You never know when you might need to hang on to both of your kidneys. A lot of medications can cause irreversible kidney damage. I'm thinking of NSAIDs here, but I'm sure there are others.

I think the best donor is someone who is for all intents and purposes healthy, not someone with ME/CFS. You have no idea what you might be passing on to the recipient.

http://www.ucdmc.ucdavis.edu/transplant/livingdonation/donor_criteria.html

4. Health Problems: Donors must be healthy individuals.

http://www.uwhealth.org/healthfacts/transplant/5285.pdf

Any living donor needs to be in good physical and mental health.

https://transplantliving.org/living-donation/being-a-living-donor/qualifications/

Living donor candidates should be:

• in good physical and mental health.

http://www.ohsu.edu/xd/health/servi...ney-Donor-Information-to-Consider-3-03-14.pdf

Can anyone be a kidney donor?
No;
donors need to be in excellent health

I think you can see a pattern emerging here.

 

[antherder]

I'd only donate my body to the medical school, once I've finished with it, or perhaps, once it's finished with me. (I'm not sure if they'd want it though. Haven't asked yet.)

I agree with the other posters who say it's too risky, for you, and the recipient.

 

[Sasha]

I think the possibility of making yourself permanently worse through the physical strain of surgery is a distinct possibility and then you'd have not only that consequence for yourself but for anyone who would have the responsibility of caring for you.

I applaud your wish to help people but I think there are ways to help others that don't carry such a serious risk to yourself, to the lives of your own loved ones, and to the donor recipient.

The ME community itself needs people willing to volunteer time, effort and cash - perhaps you could consider something along those lines. Or if you don't want to focus on ME (and it can feel good to escape), perhaps you could donate those things to another cause you feel strongly about.

 

[helperofearth123]

Many thanks for all the thoughtful replies. I thought I'd mention that I have had major surgery before while ill with CFS for a perforated appendix and I actually improved dramatically for several weeks afterwards (no one knows why), so I know I can tolerate anaesthetic and surgery.

The comments have made me think twice about this. I'm still not sure. I might write to a few CFS doctors and see what they think. Thanks again!

Edit:
I found this:
http://solvecfs.org/first-study-of-organ-donation-by-cfs-patients-reported-in-transplantation/

and this:
http://forums.phoenixrising.me/index.php?threads/chronic-kidney-disease-and-me-cfs.9200/

 

[alex3619]

You never know when you might need to hang on to both of your kidneys.

Kidneys shutting down are a big problem for some very severe ME patients. General organ failure is a not uncommon cause of death.

 

[Sidereal]

I actually improved dramatically for several weeks afterwards (no one knows why)

Many people with ME/CFS report an improvement in all their symptoms with opiates so the post-surgery painkillers is one possibility.

so I know I can tolerate anaesthetic and surgery.

There are many different anaesthetics with vastly different physiological effects. The fact that you tolerated whatever they gave you during the previous surgery doesn't mean you would be equally lucky next time.

 

[Dx Revision Watch]

Are we not banned from blood and organ donation?

In England, not necessarily barred from organ donation:

https://aprescriptionforme.wordpress.com/2015/06/18/can-people-with-m-e-give-blood-and-organs/

Also: http://www.nhsbt.nhs.uk/news-and-media/news-archive/news_2010_10_07.asp

https://my.blood.co.uk/knowledgebase/Index/C

"CFS : Post Viral Fatigue Syndrome
I am sorry but unfortunately, we cannot accept a donation if you have this condition or if you have previously had the condition even if you are now recovered."