12th Transplantiversary
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12th Transplantiversary
Hi all
Some of you may remember me (some more than others!) .. I was transplanted by a living donation from my wife with a blood match and 1/6 HLA match on 13th Sep 2004. (lol...13th .. I'm a 13/10000 chance of finding a 6/6 match according to the system)
I'm on tac, pred, aza and have been for around 10 years now ...and(with theexception of one small blip when changing to this combo) my creatinine has been steady in the range 90-110 throughout...and still is (edit : at 12.5yrs creat = 92!)
So now I'm into my 13th year (12 years done) ...
The message I wanted to give is that 1/6 match isnt necessarily a bad thing ... I assumed it wasnt great at all ...i reckon I've now taken over 20,000 tacrolimus capsules so far and no symptoms that I'm worried about and no evidence of them doing any harm so far. Maybe one day ...but not yet!
I'm still hiking mountains and am about 40% (edit : 41/49 done at 12.5yrs post tx) of the way through my project (started this April) to climb thehighest point in every (historic) English County ..
http://keithjohnelliott.blogspot.co.uk
Enjoy life and keep taking the tablets !
Some of you may remember me (some more than others!) .. I was transplanted by a living donation from my wife with a blood match and 1/6 HLA match on 13th Sep 2004. (lol...13th .. I'm a 13/10000 chance of finding a 6/6 match according to the system)
I'm on tac, pred, aza and have been for around 10 years now ...and(with theexception of one small blip when changing to this combo) my creatinine has been steady in the range 90-110 throughout...and still is (edit : at 12.5yrs creat = 92!)
So now I'm into my 13th year (12 years done) ...
The message I wanted to give is that 1/6 match isnt necessarily a bad thing ... I assumed it wasnt great at all ...i reckon I've now taken over 20,000 tacrolimus capsules so far and no symptoms that I'm worried about and no evidence of them doing any harm so far. Maybe one day ...but not yet!
I'm still hiking mountains and am about 40% (edit : 41/49 done at 12.5yrs post tx) of the way through my project (started this April) to climb thehighest point in every (historic) English County ..
http://keithjohnelliott.blogspot.co.uk
Enjoy life and keep taking the tablets !
Last edited by keithjohnelliott on Fri Apr 14, 2017 12:38 pm, edited 1 time in total.
Re: 12th Transplantiversary
Well done on the climbing.
Awesome.
Nice to hear about your good news on 12th anniversary, too.
Congrats!
Awesome.
Nice to hear about your good news on 12th anniversary, too.
Congrats!
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- Posts: 138
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Re: 12th Transplantiversary
Brill great stuff.
Keep at it.
C
Keep at it.
C
Transplanted Sept 1981
Still enjoying life like a 21 year old, or younger!
Still enjoying life like a 21 year old, or younger!
Re: 12th Transplantiversary
Hi keithjohnelliott.
Thank you so much for this encouraging post!
I am only 2 years and 8 months post transplant (combined kidney/pancreas) and I am only a 2/6 HLA match with my new organs (I understand lower HLA-match levels are more common away from the much larger kidney-only transplant list where better matching is more likely).
I am also on tac and pred along with MMF (restarting at low level after BKV, EBV (and CMV?) viral-copy count levels have been brought back down to acceptable levels)
I am not aware of any issues related to potential rejection in my case (For kidney: Creatinine ranges between 80 & 110, eGFR between 62 & 78 - neither obviously trending, just random fluctuations probably down to not always drinking enough water. For pancreas: HBA1C between 33 & 37, Amylase at top end of quoted normal range (but then I have 2 pancreases producing this))
I previously had also speculated that my lower HLA match was bad but I am feeling a little more positive about the possibility of longer-term stability now thanks to your situation.
Many thanks
John
Thank you so much for this encouraging post!
I am only 2 years and 8 months post transplant (combined kidney/pancreas) and I am only a 2/6 HLA match with my new organs (I understand lower HLA-match levels are more common away from the much larger kidney-only transplant list where better matching is more likely).
I am also on tac and pred along with MMF (restarting at low level after BKV, EBV (and CMV?) viral-copy count levels have been brought back down to acceptable levels)
I am not aware of any issues related to potential rejection in my case (For kidney: Creatinine ranges between 80 & 110, eGFR between 62 & 78 - neither obviously trending, just random fluctuations probably down to not always drinking enough water. For pancreas: HBA1C between 33 & 37, Amylase at top end of quoted normal range (but then I have 2 pancreases producing this))
I previously had also speculated that my lower HLA match was bad but I am feeling a little more positive about the possibility of longer-term stability now thanks to your situation.
Many thanks
John
Type 1 diabetes: c.1974
Stage 5 CKD: Dec2012 (creatinine 395 eGFR<15)
Dialysis (CAPD): Oct2013 (creatinine 609 eGFR<10)
SPK transplant: 18Feb14 (both still going well)
Stage 5 CKD: Dec2012 (creatinine 395 eGFR<15)
Dialysis (CAPD): Oct2013 (creatinine 609 eGFR<10)
SPK transplant: 18Feb14 (both still going well)
Re: 12th Transplantiversary
i think this goes to show that modern techniques and a little bit of good fortune that the match you get isn't that important.
Great to see you hit this milestone and I wish you many more with your gift and your wonderful wife (hope she is doing just as well as you)
Great to see you hit this milestone and I wish you many more with your gift and your wonderful wife (hope she is doing just as well as you)
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.
My living donor and his family are doing all well.
==
Alports.
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Re: 12th Transplantiversary
Quick update .. managed to reach the top of each of the 49 historic english counties within a year from starting. There are lots of really nice places to visit around England!
It seems to me that having a successful transplant only really holds you back as much as you want to let it!
12.5 years post-tx and creatinine just came back as 92 ...which is pretty good considering I'm about 100kg and 1.92m (6ft 3ish).
take good care of yourselves and those who are close to you
cheers
Keith
It seems to me that having a successful transplant only really holds you back as much as you want to let it!
12.5 years post-tx and creatinine just came back as 92 ...which is pretty good considering I'm about 100kg and 1.92m (6ft 3ish).
take good care of yourselves and those who are close to you
cheers
Keith
Re: 12th Transplantiversary
Fantastic to hear! Amazing. Big congrats to you and your wife
Re: 12th Transplantiversary
Good to hear such positive news. Makes me feel good to know that one day l may be in that position too.
Congrats to you.
Congrats to you.
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- Location: Spalding, Lincolnshire
Re: 12th Transplantiversary
Hi All,
Its been a while since I've been on here. Had my blood results back from the doctor today and reading the figures make me realise how lucky I am. Creatinine sitting pretty at 111 and efgr at 73. This september will be my 13th anniversary.
I hope and pray it continues like this for many years and my sentiment goes out to everyone else.
Take Care
John
Its been a while since I've been on here. Had my blood results back from the doctor today and reading the figures make me realise how lucky I am. Creatinine sitting pretty at 111 and efgr at 73. This september will be my 13th anniversary.
I hope and pray it continues like this for many years and my sentiment goes out to everyone else.
Take Care
John
Re: 12th Transplantiversary
Early congratulations on your 13th, John. It is a wonderful inspiration for us who are waiting for transplant to hear successful stories.
Hope your kidney continue to serve you a great many more years!
Hope your kidney continue to serve you a great many more years!
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- Joined: Sun Jun 26, 2016 12:23 pm
Re: 12th Transplantiversary
Another year has rolled by and the 'Ides of September' are upon us again (I wonder if my former neph had a classical education?!)
..so it's now my 13th transplantiversary ... all remains well, creatinine still being reported as 90 (as of Jun this year) and no symptoms that I'm worried about.
Finished my county top project visiting all 49 English ones in the year, now thinking about taking up 'oval woodturning' as a bonus hobby!
Best wishes to everyone & keep taking the tablets!
..so it's now my 13th transplantiversary ... all remains well, creatinine still being reported as 90 (as of Jun this year) and no symptoms that I'm worried about.
Finished my county top project visiting all 49 English ones in the year, now thinking about taking up 'oval woodturning' as a bonus hobby!
Best wishes to everyone & keep taking the tablets!