Road to transplant......we hope....

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Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Road to transplant......we hope....

Post by Dixie1 »

As mentioned in a previous post, my husband is hoping to donate a kidney to me. He has cleared the first hurdle threatening to stop him and that is that Guys hospital have given him clearance to do the work up, despite suffering testicular cancer almost 10 years ago.

Anyway - good news - second hurdle cleared. My husband appears to have an AB blood group, which could have been a potential hitch, in that he can only donate to other AB's, and these account for only 4% of the population (3% positive and 1% negative) apparently. Well, it transpires I am also AB, so that's a bit of a result!

The HLA matching shows that we only match on 2 of 6. We have been told (by email) that that is not a great match, but that it does not preclude a transplant going ahead. Does anyone have any experience of matches such as ours?? Ones that aren't so good? Until we visit for an appointment, I am not too sure of the implications. I am guessing it means that potentially I would need a higher level of immunosuppression? Should we be asking to go in for paired exchange instead?? Anyone contributions with someone with knowledge about this would be greatly appreciated.

Anyway - next step apparently is the blood mix or crossmatch. We are just waiting for an appointment.
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Road to transplant......we hope....

Post by AmandaClare »

That's sounding hopeful, Dixie- amazing that you're both AB. Fingers crossed for the next stage.

I'm know 0/6 matches are possible these days, let alone 2/6, but you're probably correct re immunosuppression.

Keep us posted
Amanda
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: Road to transplant......we hope....

Post by Tibbs »

I was also told that a 0/6 live match was 'better' in terms of longevity than a 6/6 cadaveric.

I think it'll all be dependent on your crossmatch. In my experience, doctors tend to err on the side of the extremely negative when talking about the chances of being able to donate so you don't get your hopes up.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: Road to transplant......we hope....

Post by Dixie1 »

Thanks for the replies Amanda and Tibbs - what match were you guys when you had your transplants?
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: Road to transplant......we hope....

Post by Grey »

Dixie I will be a 4/6 match with same blood group O. Seems like it is going ahead for me just received my pre-op callup in the post. My heavens now it, s real.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Road to transplant......we hope....

Post by AmandaClare »

Dixie1 wrote:Thanks for the replies Amanda and Tibbs - what match were you guys when you had your transplants?
I don't know - I was 16 and if I was ever told I can't remember it.

One of the nurses said it was a 'good kidney and a good match'.

Amanda
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: Road to transplant......we hope....

Post by Tibbs »

Mine was never talked about as an x/6 match, I was a 1:1:1 match with my dad.

No idea what that means!
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Thumps
Posts: 1304
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Road to transplant......we hope....

Post by Thumps »

I got a 1:2:1 which from what I understood wasn't very good??

Funny how little we know :)
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: Road to transplant......we hope....

Post by Dixie1 »

Well, that sounds hopeful for me then Thumps. If yours wasn't considered very good and everything is still going strong for you, that must mean there's hope for me! I read on another thread that you have just had your best eGFR results for 4 years. Great news! :)

Next stage for us is the crossmatch, which is being done on either 23rd or 30th March (tbc). Fingers crossed.
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Road to transplant......we hope....

Post by jbell »

Hi Dixie I cannot help with numbers about a match but I just wanted to say how good it is that things are going ahead , so far so good for you and your husband, I hope it continues in that way for you both ...Jan :)
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
MandyA
Posts: 185
Joined: Tue Dec 21, 2010 6:45 pm

Re: Road to transplant......we hope....

Post by MandyA »

I had a cadaveric transplant, with a 3/6 match.

Mandy
Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: Road to transplant......we hope....

Post by Dixie1 »

Results in from the crossmatch and thankfully it's negative, which I am told is what we want. :D Things are going to slow down a little again now, as my husband has been told they'd like him to lose about 6kg (approx. 12lbs) and they won't do anything further until he has achieved this......I warned him about this quite some time back but now that he's been told by the co-ordinator herself he's actually sat up and taken some notice! :roll:
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Road to transplant......we hope....

Post by rheaybou »

Dixie1 wrote:Results in from the crossmatch and thankfully it's negative, which I am told is what we want. :D Things are going to slow down a little again now, as my husband has been told they'd like him to lose about 6kg (approx. 12lbs) and they won't do anything further until he has achieved this......I warned him about this quite some time back but now that he's been told by the co-ordinator herself he's actually sat up and taken some notice! :roll:
Great news, the whole process is so stressful for all involved. Sure your husband will be extra motivated to lose the weight now. Just make sure you keep in tip top condition and the date could be a lot sooner than you think.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: Road to transplant......we hope....

Post by Dixie1 »

Well, my husband lost the weight so is scheduled for the next round of tests on Tuesday next week. It sounds as though the majority of the day will be spent at the hospital. He has got to have a GFR study done, which I understand involves an injection of some radioactive material, followed by about 4 x 1 hourly blood tests and then, in the afternoon, he has got a CT scan of his abdomen, to check out his kidneys etc.

He has been told that if there is any more than a 20% difference between the function of his two kidneys, he will be ruled out as a donor. So 50/50 or 60/40 would be fine for example but 65/35 or 70/30 would not. With regard to the scan, he has been told that it is not uncommon for someone to have more than one renal artery and should he have more than two that will also rule him out as a donor, as Guys hospital will only ever consider donors with a maximum of two arteries.

Results from the above tests on 11 August, so fingers crossed........
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: Road to transplant......we hope....

Post by Grey »

Good luck Dixie
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
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