Update on me and my brother

[MatthewC]

Hi all - time for an update on me and my brother after I donated to him last October. He had a biopsy in early May which showed no sign of rejection and he was then discharged by the consultant as "boring"! He's now back to the care of his local hospital; he's off the MMF and his Tac dose has been halved.

He's sent me a few e-mails about what he's been doing: "On Saturday we cleared out the garage, took photos, put some stuff on Ebay, went to the dump in the rain, went out to a party in the evening. I probably haven’t even been into our garage for 4 or 5 years – could never have done all that before."

And another: "The trailer tent is now gone, several trips have been made to the dump – I can put a car in the garage! Seems like a strange space to have. Vegetable patch is planted... Grass is cut, hanging baskets planted – everything grown from seed. Cleared out the spare room – more trips to the dump. Can’t remember when I could last do all this sort of stuff in one weekend."

And another one: "Kidney function is pretty much back to where it was when I was first diagnosed (50% - 9 years ago??) and I was unaware then of anything being wrong."

I have had absolutely no problem since feeling a bit fragile when I left hospital just 48 hours after the op. I'm back to my usual strength and activities but would admit to being a bit lacking on stamina perhaps, or is that just age?! I just had my routine check up at my GP's surgery, and this experience has really shown me again how well the NHS treated me as a potential living donor - in other words my GP's surgery has really messed me around; I'll post about that on my blog when I've calmed down!

My creatinine was 133 (eGFR 50) in December and it's now 126 (eGFR 53) which is fine. Tim's is now 139/46 (and pretty consistent) so he's close to me.

[lizbee]

Hi what a lovely post. I seldom hear anything from the living donar and I was delighted to hear how well your brother is doing and also that you are well.........my very best wishes are sent to you both long may it continue for you both.........great outcome.............

Liz

[rheaybou]

Matt,

It sounds like you have given your brother a normal life, what more could anyone ask for. My donor had his 12 month check and he is fine, he put it off for a while and got me and his wife very nervous. But the promise of a few beers soon had him booked in. My local newspaper will be doing a follow up article as part of transplant Week in July.

Great to hear you are both doing so well and long may this continue

[Chris In Trowbridge]

My creatinine was 133 (eGFR 50) in December and it's now 126 (eGFR 53) which is fine. Tim's is now 139/46 (and pretty consistent) so he's close to me.

Very nice post Mattew, so you have CKD also then, i am surprised they let you donate with a eGFR of just 50 thou ?, or am i missing something, take care.

[SKM23435]

Matt,

Lovely to hear your story. It is a fantastic thing you have done.

I found your blog fascinating. Lovely to see the donor story. It also made me feel a bit better going throughout the same thing with a possible donor myself. Unfortunately my transplant is not to be at present (I have antibodies), but if I am lucky enough to find another donor I shall point them in the direction of your blog.

Best wishes to you and your family

Sue

[MatthewC]

My creatinine was 133 (eGFR 50) in December and it's now 126 (eGFR 53) which is fine. Tim's is now 139/46 (and pretty consistent) so he's close to me.

Very nice post Mattew, so you have CKD also then, i am surprised they let you donate with a eGFR of just 50 thou ?, or am i missing something, take care.

BEFORE donation my eGFR was 80 ish, so I reckon 53 with just one is pretty good. Although the current eGFR figure puts me in the range for Stage 3 CKD, I do NOT have kidney disease - I wondered about this some time ago and found a definition of CKD which says that you also have to have other symptoms for it to be considered as CKD; since I am fine, I don't have CKD.

[Dixie1]

Hi Matthew

Thanks for the update. It's great to read that you and your brother seem to be doing so well.

[lainiepop]

Glad to here u and your brother are doing so well! I am just 2 yrs post tx i got mine from my dad and we are both doing well even tho he had a heart bypass op 6 weeks ago !
How do u feel as the donor, do u notice a change in your body how u feel? x

[MatthewC]

Glad to here u and your brother are doing so well! I am just 2 yrs post tx i got mine from my dad and we are both doing well even tho he had a heart bypass op 6 weeks ago !
How do u feel as the donor, do u notice a change in your body how u feel? x

Have they checked your dad's test results to see if they should have picked up his heart issue when they tested him?

I feel absolutely fine and have noticed no side effects or changes whatsoever; I actually feel slightly guilty for having had such as easy journey through all this. My brother's life has effectively been restored to what it was eight years ago, and I start to well up when I think of it!

[lainiepop]

Hi Matthew, they wouldn't have picked it up during donor testing, because nothing flagged up as unusual (low cholestrol, low bp, normal ecg). He was almost 67 when he donated tho. He was very lucky they realised he had a heart attack tho he just said he felt dizzy and faint, mum took his bp which was 80/40 so they rushed to gp who checked hhim over, by then all back to normal but gp said something feels wrong so did an ecg there in the surgery which showed he'd just had a heart attack! If she hadnt done that he might have had another fatal one. He was taken to hospital where they did an angiogram (this is what shows up the blocked arteries which is not done in the UK as donor work up testing, but is in the states), and he had 2 stents put in. His kidney suffered during th bypass, creatinine went u to 200 (it affects normal people tho as they take a vein from your led to put into the heart or something) and when u mess with veins and blood flow it can temporarily affect the kidneys, they even had a dialysis machine in the operating theatre! But 6 weeks after op his creatinine is back to 126, and mine runs around 70 so neither of us can complain. I felt very guilty when i heard he's had a heart attack, even tho its not my fault, and would have happened if he hadnt donated the kidney too, him and mum were just happy he was able to donate before it happened!

[Chris In Trowbridge]

My creatinine was 133 (eGFR 50) in December and it's now 126 (eGFR 53) which is fine. Tim's is now 139/46 (and pretty consistent) so he's close to me.

Very nice post Mattew, so you have CKD also then, i am surprised they let you donate with a eGFR of just 50 thou ?, or am i missing something, take care.

BEFORE donation my eGFR was 80 ish, so I reckon 53 with just one is pretty good. Although the current eGFR figure puts me in the range for Stage 3 CKD, I do NOT have kidney disease - I wondered about this some time ago and found a definition of CKD which says that you also have to have other symptoms for it to be considered as CKD; since I am fine, I don't have CKD.

Sorry i must have missed this post, thx for reply Matthew, can i ask what age you are, cheers

[Thumps]

Nice one Matthew My donor and I are almost 6 years post tx and all is going swimmingly.

[MatthewC]

Sorry i must have missed this post, thx for reply Matthew, can i ask what age you are, cheers

I'm keeping quiet about my age but I just got a bus pass....

[Chris In Trowbridge]

Matthew i see