Losing a second Kidney

TommyOM

Someone very close to me had her Kidney removed last year. She is in her mid 20s and lived such a healthy life. It was said that it was a genetic condition that caused one of her kidneys to atrophy.

The operation went successful but now, a year later, she is telling me that she is beginning to feel the same symptoms that she felt last year when her removed kidney was failing. I can't let her see but I am absolutely devastated by this.

I wouldn't know what to do if this happened. She means the world to me and I caused her so much pain in the past that it seems so unfair that this has to happen to her.

What happens if a second kidney fails? Are kidneys easily available? Could I donate privately to her or are there regulations in place which prevent that meaning she has to be on a waiting list?

Does anyone have any experience with this? Is there anything that can be done to keep her sole kidney healthy as long as possible??? I've been researching about super foods and the like but are there any other ways?

My head is spinning at the moment, I just want to help her.

Big Bag of Chips

It's understandable that you are worried. I'm sure she is too! Her doctors will be talking her through all her various options. Medicines to take, possible dialyses, finding a donor, etc.

You seem to have gone into panic mode. You need to step back. She is your friend. But she is the one actually going through this, so try not to let your feelings get in the way of just being a friend for her. If she thinks you are a bit too emotional about this, she might pull back from you and not confide in you.

Let her sort herself out with her doctors first before you start worrying about what might happen. Be a good friend. That's what she needs at the moment.

pookie82

No one here can give you any medical advice. She will receive all of the advice, treatment and prognosis available to her from her medical team.

In order to donate a kidney, you need to have matching blood/tissue type, otherwise she will reject the donated kidney. She may do so even if you were a match.

Donating an organ is not something you do on a whim, even if you turned out to be a match. Your willingness to help is admirable, but it's not something that can (or would be allowed to be) rushed. I couldn't see you being able to "donate anonymously" either. In order for her to "skip the list" and receive one from you, you'd have to step forward and offer to be tested as a match, and that would just be the beginning.

You'll be of a lot more use to her now as an emotional support, should she need it. Has she seen a doctor yet? If not, encourage her to do so, to get to the bottom of why her symptoms are recurring.

Neyite

Mod:

We cant offer medical advice here. I appreciate you are upset about your friend, but in order to help her, you need to ask her.

af12

hi ,
I know I cant offer medical advice so ill keep it to general advice. both my kidneys failed in my mid 20s and when both kidneys fail a treatment- dialysis- is recommended, it takes over the job of the kidneys. I had a transplant and unfortunately no ,kidneys are not easily received. there are over 700 people on a waiting list as we speak, the average wait for a kidney is 3 and a half years from a deceased donor. you cannot donate or get tested privately ,one of my friends wanted to do this and we were told it cannot be done. the testing process has to be agreed upon by the kidney recipient.
in order for anyone to be tested to see if they are a match for her your friend needs to be active on the transplant list. getting on the list is a long process and only when she is active on the list can you go ahead and get tested. donor testing also takes a long time.
I hate to be negative but superfoods are a waste of time in relation to her kidney health, for her own general health they may be beneficial. I cant give medical advice so as long as she follows her consultants orders she is doing her best to keep the remaining kidney working.

if you have any other questions just ask. listen to her. don't try and fix everything. sometimes all we need is for someone to listen without interruption. and if she doesn't want to talk don't force her. I will say that dialysis wasn't as bad for me as some other patients. feel free to ask me anything.

af12

also I notice a reply above saying that you need matching blood and tissue, some blood groups are compatible with others. if theyre not the same group it doesn't automatically mean it wont work.

TommyOM

Sorry I probably should have explained that it's a bit more complicated than that. I am not just a friend. She was a partner of a few years. We only split a few months ago but still stay in regular contact.

I am aware that doctors would go through various options. I am more looking for advice from people that have had to deal with similar experiences and who could maybe give me some advice.

Thank you for the replies so far.

af12

well from a patients point of view as someone who has been through it I would just say talk to her, also try and keep things as normal as possible. when I got sick it was like everyone wrapped me in cotton wool , but she is still the same person. im sure she would appreciate if you keep the routine of calling her, texting her , meeting up-whatever you normally do.

TommyOM

af12 wrote: »

hi ,
I know I cant offer medical advice so ill keep it to general advice. both my kidneys failed in my mid 20s and when both kidneys fail a treatment- dialysis- is recommended, it takes over the job of the kidneys. I had a transplant and unfortunately no ,kidneys are not easily received. there are over 700 people on a waiting list as we speak, the average wait for a kidney is 3 and a half years from a deceased donor. you cannot donate or get tested privately ,one of my friends wanted to do this and we were told it cannot be done. the testing process has to be agreed upon by the kidney recipient.
in order for anyone to be tested to see if they are a match for her your friend needs to be active on the transplant list. getting on the list is a long process and only when she is active on the list can you go ahead and get tested. donor testing also takes a long time.
I hate to be negative but superfoods are a waste of time in relation to her kidney health, for her own general health they may be beneficial. I cant give medical advice so as long as she follows her consultants orders she is doing her best to keep the remaining kidney working.

if you have any other questions just ask. listen to her. don't try and fix everything. sometimes all we need is for someone to listen without interruption. and if she doesn't want to talk don't force her. I will say that dialysis wasn't as bad for me as some other patients. feel free to ask me anything.

Does being on dialysis mean she will be confined to a bed for up to 3 and a half years???

How will being on dialysis affect her? You say it is bad for some patients, what are the negatives?

How is your quality of life now?

I am sorry I am really clueless.

af12

don't apologise! I had no idea about all this before I got sick!
ok dialysis- no she will not be confined to a bed for 3 and a half yrs. there are different types of dialysis she can pick. they range from 4 hours 3 times a week in the hospital or 8hours every night at home on a home dialysis machine(this is the one I did). she will be tired from it but she will still be able to keep some level of normality. I managed to work and go out, meet friends ,go on hols all while on dialysis.

the negatives are its time consuming, it can be invasive depending on which type of dialysis she picks,basically she will have to fit it into her life and make adjustments. I think that's the hard part- trying to adjust to the treatment..

while on dialysis my quality of life was ok, I managed work, social life , but I got tired very easily. since I had my transplant my quality of life is amazing! its like a different life and gets better every day . did she happen to mention what her kidney function is at the minute?

Littlekittylou

OMG how awful. I feel for your friend. I don't know anything about dialysis or kidney transplants but if you could do some shopping for you maybe or laundry while she goes through the worst?

I hope all goes as well as can be.

FouxDaFaFa

Hi, OP.

I'm sorry your friend is going through this. It must be very difficult for her and for everyone that cares about her.

Try not to panic. As the situation stands right now, you don't know if her remaining kidney is failing. Even if it is, there are things that can be done.

I've had similar experience with someone close to me, except they had both kidneys fail simultaneously. It was because of a genetic condition called PKD and because it was genetic, I'm afraid they couldn't eat their way or exercise their way out of it.

Dialysis is not pleasant but it's not the end of the world either. In my friend's case, they opted to do hospital dialysis three times a week for a few hours. It took up a lot of time and they were often tired as a result but their quality of life was not dramatically altered. It took just over three years to get a new kidney and it's been 5 years since the transplant with no rejection or major issues.

I know your first instinct is to think "take my kidney" and that's an understandable and kind sentiment. It was my knee-jerk reaction too. This method of transplant is not common in Ireland, your friend would be more likely to get a kidney from a deceased donor.

As for what you can do for your friend, if she does end up needing dialysis or something like that, be available for her to talk to but don't make every waking moment about her illness. Often people in this situation crave normalcy and don't like being defined by whatever is wrong with them.