Being a Donor

[moggz101]

I was wondering if there was anybody here who can give me advice. My partner is close to being worked up for transplant. I have put my name forward to be tested as a potential donor for him. We are both 29, with out any kids yet (we want to get him through a transplant first). I know that the chances are that I won't be a match, but I wanted to try and get a range of views from people who tick the 'been there, done that, got the tee-shirt' box..so...would anybody mind giving me an idea on their experiences, whether you have donated, received from a friend/family member, or are in the process of - I'd prefer to get the views from you guys before I meet the transplant team!!

Thanks!!
Morag

[ives]

Hey Morag,

My mum tried to find out if she was a suitable donor. Unfortunately she was too small in physical stature (she's 4ft 10" - I'm 6ft 2"), so the surgeons were concerned that I'd wear it out in a few years. Also they found some unexpected growths in her bladder that they suspected to be cancer. She got them removed, and recently got the all clear. I was pretty down about it, but someone recently said that my mum was trying to save my life, but I ended up saving hers. Made me feel better about it.

Oh and I just had a quick look at your blog - do keep it up! I started keeping one when I first got sick. I'm a similar age (31) so there might be some similarities?!

MI

[rheaybou]

I was wondering if there was anybody here who can give me advice. My partner is close to being worked up for transplant. I have put my name forward to be tested as a potential donor for him. We are both 29, with out any kids yet (we want to get him through a transplant first). I know that the chances are that I won't be a match, but I wanted to try and get a range of views from people who tick the 'been there, done that, got the tee-shirt' box..so...would anybody mind giving me an idea on their experiences, whether you have donated, received from a friend/family member, or are in the process of - I'd prefer to get the views from you guys before I meet the transplant team!!

Thanks!!
Morag

Hello Morag.

First thing is its a long process and you have about a 30% chance of being a match (first thing they tell you)

My partner was tested and was a perfect match, we don't have kids either at the moment and you should look at the potential issues having a baby with just the one kidney can bring up.

Make an appointment to meet your local transplant team, they will give you all the info and allow you to ask lots of questions. At no point have they ever pressurised any of the people who were tested for me.

You are both (if it happens) are going to need time off work. The donor will get wages covered for the time, the recipient, well they get something money can't buy. You will both need some looking after once you come out of hospital, this is where living close to parents help.

Be prepared for the emotional roller coaster ride of epic proportions

[Otherstarfish]

Morag,

Firstly welcome- this is a great site and i am sure you and your partner will find some of the answers you need here somewhere! The people in the main are friendly and will do what they can to help. Note that whilst similar, everyone and it seems virtually every health services departments experiences are slightly different. As rheaybou rightly says it s a rollercoaster - in lots of ways. I have a view that says up until the transplant itself you are really just in the queue watching and getting all the butterflies and things as it gets nearer. When the Tx starts is where you are buckled in.

I am a donor to my sister (19 months and proud of it) - things didn't work out as planned the Tx took 2 years to get to whilst her eGFR declined and then the Tx wasn't as successful as anticipated. The whole story so far is here:

http://www.kidneypatientguide.org.uk/fo ... t=journeys
also one i like on the "ride to the theatre"
http://www.kidneypatientguide.org.uk/fo ... it=theatre

Remember doctors are human and the health service is um challenging at times and fabulous at others!

Good luck with it all and ask away.

Cheers
Gary

[cazpi]

It's a fantastic thing you're contemplating doing. My partner just said no, straight off.

My brother has been tested, and is a half-match, he is the only close relative I have of a suitable age, as my parents are in their late 70's. I was due to be transplanted in March 2011, but have had a lucky upswing in my kidney function, so am still battling on with my own kidneys. Since then, after spending a little more time with my brother, I'm now having my doubts about accepting the kidney from him, he just has too much on his plate, he has a full-time stressful job with a long commute, a severely disabled wife, and a small child. They have daytime help around the house, while he is at work, but otherwise he does everything, including lifting his wife in and out of bed/bath/wheelchair/car etc, which he wouldn't be able to do for some time after the op.

At the moment I feel a little in limbo, but am just doing my best to keep my native kidneys up and running as long as I can.

As everyone else says, it is a huge rollercoaster, it has been for me already, and nothing's even happened yet.

[Tibbs]

My dad donated to me, and I'm sure he'd be happy to chat to you about it. If you read the team Tibbs results thread (warning it's loooong) I've put in quite a lot about day's journey.

Let me know and I'll ask him and put you in touch if he says yes.

[moggz101]

Hey Morag,

My mum tried to find out if she was a suitable donor. Unfortunately she was too small in physical stature (she's 4ft 10" - I'm 6ft 2"), so the surgeons were concerned that I'd wear it out in a few years. Also they found some unexpected growths in her bladder that they suspected to be cancer. She got them removed, and recently got the all clear. I was pretty down about it, but someone recently said that my mum was trying to save my life, but I ended up saving hers. Made me feel better about it.

Oh and I just had a quick look at your blog - do keep it up! I started keeping one when I first got sick. I'm a similar age (31) so there might be some similarities?!

MI

Hi Ives,

Thank you for your reply. Having read your blog, your situation seems not to dissimilar to my partners. His CKD was first picked up with an astonishing blood pressure, that had to him losing partial sight. I took him down to A&E where we found he also had 6% Kidney function left. Weight loss is still something we are batteling hard with - he keeps retaining fluid like a mad man!

I agree with what others have said about saving your mum. She was meant to be tested for you to pick up the other problems. I hope you aren't on the transplant list for too long though, and both you and your mum are well now. I will follow your blog, as there does seem to be a few similarities!!

Morag

[moggz101]

Hello Morag.

First thing is its a long process and you have about a 30% chance of being a match (first thing they tell you)

My partner was tested and was a perfect match, we don't have kids either at the moment and you should look at the potential issues having a baby with just the one kidney can bring up.

Make an appointment to meet your local transplant team, they will give you all the info and allow you to ask lots of questions. At no point have they ever pressurised any of the people who were tested for me.

You are both (if it happens) are going to need time off work. The donor will get wages covered for the time, the recipient, well they get something money can't buy. You will both need some looking after once you come out of hospital, this is where living close to parents help.

Be prepared for the emotional roller coaster ride of epic proportions

Hi Rheaybou,

Thanks for your reply. I hadn't realized the statistics before, that kind of puts it into perspective a little. We both decided that kids would need to wait until after a (hopefully) successful transplant. His fluids take up all the room we would need for kids, and with him not being able to work full time it's not financially viable either. But I have to admit, I never considered the affects missing a kidney could have on these plans either - this is something we need to take to the transplant team, as well as with each other.

I am lucky in that my work are fantastic about me wanting to be tested. They support me 100%, even with knowing how long I would need off if I was a match. I know that living donors have a slightly better success rate, and I think that is one of my main reasons for wanting to do it, to try and give him the best possible start with a new kidney, and hopefully get a good number of years out of it before he's back on dialysis.

That's good news that your partner was a perfect match for you though. I hope you are both doing well now

Thanks!
Morag

[moggz101]

Morag,

Firstly welcome- this is a great site and i am sure you and your partner will find some of the answers you need here somewhere! The people in the main are friendly and will do what they can to help. Note that whilst similar, everyone and it seems virtually every health services departments experiences are slightly different. As rheaybou rightly says it s a rollercoaster - in lots of ways. I have a view that says up until the transplant itself you are really just in the queue watching and getting all the butterflies and things as it gets nearer. When the Tx starts is where you are buckled in.

I am a donor to my sister (19 months and proud of it) - things didn't work out as planned the Tx took 2 years to get to whilst her eGFR declined and then the Tx wasn't as successful as anticipated. The whole story so far is here:

http://www.kidneypatientguide.org.uk/fo ... t=journeys
also one i like on the "ride to the theatre"
http://www.kidneypatientguide.org.uk/fo ... it=theatre

Remember doctors are human and the health service is um challenging at times and fabulous at others!

Good luck with it all and ask away.

Cheers
Gary

Hi Gary,

Congratulations on donating to your sister, although she has had the post opp complications, it was a fantastic gift to give. I read your thread, and bookmarked them. One of the biggest fears I have to his transplant is rejection...whether it be from me, or someone else. There is a huge amount of work up, and getting your hopes up prior...but them=n as I noticed somebody pointed out in your thread, if it fails, it fails...your just back where you started on dialysis again, and you can always have another go.

We were sent this forum with a load of leaflets from the PD team when he was first diagnosed, and I've found invaluable...a lot of small complications that have come up, I've managed to find solutions to on here without having to speak to the renal team. We don't see anybody else at the unit who is the same boat as us (they seem to want to keep everybody segregated), so it's fantastic to know there's a whole host of people out there with the same worries, complaints and complications we do!!!!

Morag

[bigbuzzard]

Hi Morag

I'm the recipient of two transplants, both from living donors, one in 2007 and the 2nd a couple months ago in November. I also 'crash landed' with a kidney function of around 6% at Guy's in London back in Feb 2006, and have done 2 stints on APD of around a year each. I managed to make it into a bit of a game - most of the time! - though it's a huge relief to be free from all that once more. Heading into hospital tomorrow to get the PD catheter removed.

It seems these days that you're almost more likely than not to be compatible for a transplant, as the 'match' element is not so important as it once was because of supposedly better anti-rejection drugs. With my first donor, we were just a 1 out of 6 HLA (tissue type) match. I've never come across the 30% chance that someone quoted above. Perhaps that's the case. Do you also know about the 'paired donation' scheme - where potential donors who aren't able to donate to their recipient of choice, are paired with another similar couple where the donations are both possible?

As Gary says, the NHS does have its moments: I've found it essential to keep on top of all the things the different people say, and to be completely ready to ask questions when it looks like someone might have missed something, or something that one person says 'will be done' doesn't seem to be happening. There've been several times when something quite serious has been resolved by doing this. But despite all that, I do feel that being diagnosed with kidney failure was a bit like being given a 'platinum NHS membership card' - that means I rarely have to wait for anything - it just happens as quickly as necessary.

Good luck with everything. It sounds like your partner is as lucky to have you as I've been with my wife - who's been amazing through this whole journey. My first diagnosis was about 7 months after we got together - so not what she was expecting at all. We're now married and have a gorgeous 3 year old daughter. If talking to anyone else would be useful, send me a PM.

[amanda in CA]

If your brother turns out to not be,a match or not a good match, you could always look into a paired donation scheme where you cross swap with your donor to another person. My personal view is that this should be routine to ensure that people get either a perfect match or the best match possible although I do believe that a kidney from a family donor is considered to be preferable since you share genetic material anyway. Maybe something worth asking the opinion of the doctors on.

[ives]

Thank you for your reply. Having read your blog, your situation seems not to dissimilar to my partners. His CKD was first picked up with an astonishing blood pressure, that had to him losing partial sight. I took him down to A&E where we found he also had 6% Kidney function left. Weight loss is still something we are batteling hard with - he keeps retaining fluid like a mad man!

Had the eyes thing too, but a recent check up has actually shown that my eyesight has marginally improved... Who needs laser treatment?!

[rheaybou]

Morag.

Fluid retention can be caused by the blood pressure mess he is on. All my time on PD my BP never went below 150/100 even as meds were increased. Staying on top of fluid restrictions can be difficult and PD doesn't help if he is an absorber of fluid during dwells. (all problems I had)

[moggz101]

It's a fantastic thing you're contemplating doing. My partner just said no, straight off.

My brother has been tested, and is a half-match, he is the only close relative I have of a suitable age, as my parents are in their late 70's. I was due to be transplanted in March 2011, but have had a lucky upswing in my kidney function, so am still battling on with my own kidneys. Since then, after spending a little more time with my brother, I'm now having my doubts about accepting the kidney from him, he just has too much on his plate, he has a full-time stressful job with a long commute, a severely disabled wife, and a small child. They have daytime help around the house, while he is at work, but otherwise he does everything, including lifting his wife in and out of bed/bath/wheelchair/car etc, which he wouldn't be able to do for some time after the op.

At the moment I feel a little in limbo, but am just doing my best to keep my native kidneys up and running as long as I can.

As everyone else says, it is a huge rollercoaster, it has been for me already, and nothing's even happened yet.

Hi Cazpi,

That's great news that you've gained some function back...and it seems that you've managed to get a good amount more use out of them. I have read that for some people you can re-gain some use, although I'm sorry to here about your doubts for donation now. You should sit down with him and discuss how you feel, and see how your brother feels as well. I told my partner I was going to put forward for testing not long after his diagnosis (he had little choice ). At the time I felt very helpless - he was still in hospital, waiting for dialysis, and looking very unwell. But getting tested, I felt I was able to do something proactive to help him. That was 18 months ago now, and we've settled into a routine at home where I have a bigger role to play in helping him everyday, but I still want to help him come off dialysis - if nothing else, it means he has no excuse not to help with the housework and shopping anymore!!!

I hope everything works out well for you - and I hope you can get a lot more use out of your kidneys. Keep us updated to how you do!

Morag

[moggz101]

My dad donated to me, and I'm sure he'd be happy to chat to you about it. If you read the team Tibbs results thread (warning it's loooong) I've put in quite a lot about day's journey.

Let me know and I'll ask him and put you in touch if he says yes.

Hi Tibbs,

Thanks for your reply. I have booked marked your thread, and will look through it with my partner. He in having tests for a few days, so once he's out we'll go through it together, and if we have any questions on top of what you've put, I will get back in touch with you if that's ok. Everybody has been so kind and helpful on here so far, and I do think there's a lot more valuable info here than any transplant team could give out...there's nothing better than experience itself!!!

Morag