Yet more bad luck: I asked my husband the... - Kidney Disease

Kidney Disease

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Yet more bad luck

fartikins profile image
27 Replies

I asked my husband the question yesterday - would you ever consider donating a kidney to me.

He said yes he would.

For the first time in ages I felt really positive.

Guess what - I am blood type O and therefore a living donor isn't acceptable unless the donor is a blood type O themselves.

I am gutted - I can't believe what is happening to me

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fartikins profile image
fartikins
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27 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

Before you give up.... there is hope. I am not sure if it is the same in the UK. But here, if you have a live donor, but not a match, it still guarantees you a transplant. They will take your husbands kidney but find you one that is a good match. Takes a bit longer.

What if my kidney is not compatible with my intended recipient?

You may consider a “paired exchange.” A paired exchange involves two pairs of living donors and their recipients. The two recipients “swap” donors so that each receives a kidney from a compatible donor. If this is an option for you, your transplant team will coordinate the entire process, including finding the matching pair. kidney.org/transplantation/...

fartikins profile image
fartikins in reply to Bassetmommer

Thank you - yes we do have a similar scheme here in the uk - husband not so keen now because he does not know how long he has to wait until a compatible one comes up for me. I think they wait until an O becomes available and the start the procedure.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to fartikins

I think you both would do well to get the facts correct from the transplant coordinator you are working with.

fartikins profile image
fartikins in reply to Bassetmommer

this is getting so difficult now - I had some hope yesterday but its gone now. Because I take anti depressants I can't have a transplant - because I have a constant UTI I can't get a transplant - there is really no point in going on now.

Marvin8 profile image
Marvin8 in reply to fartikins

Anti-depressants are a disqualifier? I wonder why?

fartikins profile image
fartikins in reply to Marvin8

people get depressed with ckd - that is how mine started - but they say that taking them disqualifies you from the procedure. Do you have depression?

Marvin8 profile image
Marvin8 in reply to fartikins

Of course, but have never heard that it was a disqualifier. Makes no sense since most ckd patients have some degree of depression. Perhaps if it's bad enough that they don't think you'll take care of yourself?

fartikins profile image
fartikins in reply to Marvin8

Hello - yes I think that is the case.

renegade70 profile image
renegade70 in reply to fartikins

i got off antidepressants because they did not help. doctors tried both ssri and snri. i do take a small dose of lorazepam which helps a lot and ambien to sleep, although because they cause dependence my doctor wants to take me off those two meds. i will put up an argument because they are the only drugs that have helped me with depression and anxiety.

Blackknight1989 profile image
Blackknight1989 in reply to renegade70

Just as an FYI, which you may know already, but I too have run the gambit on anti-depressants and benzodiazepines for depression and anxiety. I’ve been drug free since 2004 as biofeedback and positive self-talk effectively control my issues, but look up serotonin syndrome if you are unfamiliar and that might help explain the ineffectiveness or worsening of symptoms on SSRIs/SNRIs. Also a recent Psychology Today (US publication and website)article highlighted new studies that show depression and anxiety are not linked to serotonin as previously thought and that led to the drug companies arms race developing first SSRIs then SNRIs. Of course even though I’d been diagnosed with that twice once in 1999 and again in 2017, after 20 minutes on a telemedicine appointment with a VA psychiatrist who was typing other patients notes and talking to her assistant I was informed I had been misdiagnosed and promptly prescribed Effexor 37mg x three a day to treat all my problems when all I wanted a a referral to the local VA psychologist to reinforce some biofeedback methods. The perks of mental health care provided by the government and they can’t understand why suicide amount Veterans is nearly four times as high as non-Vets especially in females a true tragedy of disservice to some who went to war zones 3/4/5/6 times when asked by their government but a dirty little secret that gets plenty of politicians lip-service but not politicians attention. Anyway I digress, my point, shrinks are some of the most know-it-all drug pushing doctors with total disregard for true patients mental health well-being I’ve ever encountered both in private practice, serving in the Army and treating active duty soldiers or working for the VA servicing Veterans. So I’m not surprised with the lack of effectiveness of common anti-depressants.

fartikins profile image
fartikins in reply to Blackknight1989

Thank you so much for your positive reply.

fartikins profile image
fartikins in reply to renegade70

you do that because since they took me off my sleeping medication things have got worse best of luck.

barbara55109 profile image
barbara55109 in reply to Marvin8

In the US they are not a disqualifer.

Beachgirl32 profile image
Beachgirl32 in reply to fartikins

sorry you are having such a problem .I know when I went for transplant evaluation I had to answer lots of questions to see if I can psychologically handle getting a transplant . Did you have to take that test. Ask what can you do to improve your chances getting on the list.,Having uti all the time ask doctors why are you having them all the time and ask for help getting under control talk to the doctors telling them you are trying to get a transplant . Talk to a psychologist if you have to to get you on track good luck to you don’t lose hope 😘

fartikins profile image
fartikins in reply to Beachgirl32

thanks for that but things get more difficult every day.

Irelandy profile image
Irelandy in reply to Bassetmommer

Same thing happened to me I'm o Andy cousin is ab..he's going to take part in the kidney sharing scheme....so fingers crossed. Good luck

fartikins profile image
fartikins in reply to Irelandy

that is fantastic.

Bunkin profile image
Bunkin

where do you live? In the US there is a kidney swap program where they match up donors to recipients.

fartikins profile image
fartikins in reply to Bunkin

yes I do think that they do that in the UK as well but I don't hold out any hope

Bunkin profile image
Bunkin

always hold out hope! Research it! Know all you can know. Never give up!!

fartikins profile image
fartikins in reply to Bunkin

My hope is all but disappeared - every time I get put down by our great NHS - I just get the feeling they do not want you around after 60.

Bunkin profile image
Bunkin in reply to fartikins

I’m so sorry you’re going through that. I can’t imagine. I certainly don’t mean to make light of it. I do understand the disappointment though. I had a donor all lined up and a match, on my birthday she talked a good game, I never heard from her again! But I didn’t give up and don’t want you to either! Will be praying!!

fartikins profile image
fartikins in reply to Bunkin

Thank you so much for your support.

Bunkin profile image
Bunkin

also, if you don’t do swap program there, start a campaign! The more you get the info out there the better chance you have. That’s how I got mine!!

fartikins profile image
fartikins in reply to Bunkin

Thanks

Darlenia profile image
Darlenia

If you can show progress, just a little at a time, with you mental and urinary situation - the doctors will take note and cheer you on. I've seen people overcome great odds (cancer, heart attacks, mobility issues) and be gifted with a kidney. Yes, even Type 0 kidneys, become available. There could indeed be one for you.

fartikins profile image
fartikins in reply to Darlenia

I think a doctor in this god forsaken country to cheer you on would be rarer than hens teeth.

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