Kidney live transplant

[Hannahct99]

Hi, I am being tested and hopefully going to be a live Donor for my wonderful Mum. Has anyone any experiences they can share? I'm worried about (everything!) Partucularly it not working for her and the after effects of a transplant for both of us.

[Charlene_Coxhead]

It's a wonderful thing you are offering to do Hannah for your mum. Be warned it's an emotional rollercoaster. Both my parents were tested to help me unfortunately dad was a match but had kidney disease so wasn't able to go any further but my mum did 4 months of tests and it turned out one of her kidneys was smaller so there is no option now.

You need to talk to some one about your concerns.

Charlene x

[Hannahct99 in reply to Charlene_Coxhead]

Thank you for taking the time to reply. I appreciate there is a very long road ahead but I think that I at least have to try to help. Fingers crossed! x

[Charlene_Coxhead in reply to Hannahct99]

Keeping everything crossed for you all. Just be prepared for the long process which can be emotional.

You are offering to do a fantastic thing and even if it doesn't go to plan you have always offered to the do such wonderful selfless thing and never forget that

Cx

[Nicolala]

Hi Hannah

What a wonderful thing you want to do for your mum. My donor wasn't a live one but I've seen this many times.

Be prepared to not be a good enough match. None of my family were and although I was ok with it, they felt terrible.

Be prepared for difficult times ahead if you do donate, particularly in the first 3 months. Your mum will be going from heaven to hell every hour. The drugs and the whole experience can cause mood swings and emotions your mum won't expect.

Be prepared -it may not work straight away, or not at all. It may work but the drugs can cause other health issues.

Talk to your mum openly. Talk to doctors. Find out everything so you are prepared for every eventuality.

I'm sorry if this isn't overly positive. But it's important to know both sides of donation and transplantation.

Good luck to you and your mum x

[Hannahct99 in reply to Nicolala]

Thank you for your reply. I really appreciate your honesty. In Nottingham where we both live, the nurses are very positive about the live transplant and are being very open with us both. I do realise that it us a long road and I may not even be suitable, but we are willing to try paired transplant also.

Good luck to you and thank you!

[Nicolala in reply to Hannahct99]

I'm in Nottingham too!

[Nicolala in reply to Hannahct99]

And I'd say Nottingham has one of the best renal and transplant teams in the country. Which consultant is your mum under? I know most of them... or shouldI say most of them know me!!!

[evamay in reply to Nicolala]

Hi Nicolala - this is Hannah's mum replying (my user name is Evamay). I am under Dr Devonald who seems lovely. Are you with him also? My GFR is now down to 13 so I am starting to worry about possible dialysis. It would be marvellous if Hannah was a suitable donor but we both realise there's a long road ahead before we know about that. I'm sorry you were not able to have a live family donation. I feel guilty about the possibility of leaving Hannah with only one kidney - do you really think it's safe for her to donate?. How long did you wait before you got your eventual donor?

[Nicolala in reply to evamay]

Hi evamay

For Hannah the operation is as safe as any operation of this magnitude and she will have a long recovery time. If it is a success, you will probably feel much better before she does! One thing is certain; no risks will be taken with Hannah's health. If there are any indications she may not be suitable at any point, the surgery will not go ahead.

I waited 16 years for a cadaver kidney. Certainly when I first began dialysis, live donor transplants were few and far between.

Dr Devonauld looked after me then, but that was 10 years ago and he wouldn't remember me. Once you no longer have a transplant, they drop you like a tonne of bricks!

I appreciate your wanting to be transplanted before dialysis is necessary, but in my experience this rarely happens so be prepared for that. And dialysis isn't so bad.

Good luck

Nicola x

[evamay in reply to Nicolala]

Hi Nicolala - thanks for your reassurance. Hannah goes for her first test this week (ultrasound to make sure she won't get poly-cystic kidney disease) so we are starting the process. We will let you know if she is or isn't a suitable donor. Fingers crossed!

evamay

[Stonebroke]

H Hannah, My Wife was a donor for me nearly 18 months ago now and luckily all has gone really well for us. Be prepared for lots of tests and more tests as obviously they have to be extra sure you are going to be fine with your remaining kidney.My consultants and transplant coordinator told us of every possible scenario and to be honest I thought wow we are going to be lucky to get through this without something going wrong. But we did and feel so lucky. After the op my wife was sent home the next day ( Not looking great and too early I thought) but we all know about bed shortages! Post op my wife had quite a bit more discomfort than I did and she does seem to get tired easier than she did before. Me I feel like I am 21 again and hope you and your mum have the same success. Best of luck Stonebroke

[Hannahct99 in reply to Stonebroke]

It is lovely to hear a positive story. Thank you for taking the time to reply. Can I ask how long all the testing took please? I realise this depends on what they find (e.g if they have to go off and explore an area of concern in me) but I just don't know what to expect!!

Thank you

[Stonebroke]

I was on transplant work up for about a year then when it was decided we were going ahead it took about 6-8 months of tests . Some have to be repeated every 3 months if you have not got the go ahead. I think it depends on which transplant centre you are at as they differ a little. My renal department is Hull and transplant was done at Leeds and can say they were excellent for us. All the best Stonebroke

[Lipstick16xx]

Hi Hannah,

I'm new to this group but wanted to share with you my experience so far. My husband needs a transplant , he's been on peritoneal dialysis for the past 2 + years . He had a transplant 36 years ago from his mum ( she's still going strong at 95 !!) what an advocate for donating ! So his transplant lasted 34 years ... Amazing !

I' m not a match for him but I was 'worked' up to go on the living donor scheme. My tests have taken the best part of a year and we were finally included on the living donor list in January . To our utter amazement our prayers have been answered and a match was found ! My husband is due to have his 2nd transplant next month . So even if you're not a match for your dear mum, have a think about the living donor list. ( paired or pooling Donation). All the best with your tests, really hope it works out for you and your Mum. X