The Date is set

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MatthewC
Posts: 75
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

The Date is set

Post by MatthewC »

Well, unless anything goes wrong in the meantime, or they just change their minds, I shall be donating to my brother on May 1st. He and I saw the surgeon yesterday and were surprised at the early date - we were planning on mid-June. I have to say that I was most impressed with the surgeon and her chat with me: concern, professionalism, confidence, listening - all the right things to make a donor happier!

The possibility of a mind change is because my brother's eGFR went back up to 17% (from 15% I think) and his potassium came down on the blood tests done AFTER we saw the surgeon, which is effectively where he was a year ago. Will they decide that, after all, he is still not too serious and defer it until he gets worse? We now have to wait for his neph appointment, but I'd like to know if anyone here was transplanted while stable at that level of eGFR?
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: The Date is set

Post by rheaybou »

Matthew.

Well I have nothing but respect for you and what you are doing.

eGRF can vary up and down depending on hydration and what you have eaten, the probably see the trend heading towards going lower and have a free date for you both to get enough time to prepare. Having confidence in your surgeon and your brothers is key, my surgeon swapped and I had never met the guy who transplanted me. But I tell you what he dod a fantastic job! Where will the operation be taking place if you dont mind me asking?
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.
dirverd
Posts: 212
Joined: Tue Aug 02, 2011 3:42 pm

Re: The Date is set

Post by dirverd »

I think the normal range for transplant is between 12Gfr and 8.

This depends on age, sex, and all his other blood results. And how quickly his GFR's dropped.

You should be able to call your co ordinatior and she should be able to help.

My brother donated to me, too. What you're doing is incredible. It really is the ultimate gift.

Good luck.
MatthewC
Posts: 75
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Re: The Date is set

Post by MatthewC »

Well, my brother has seen his consultant and she is very happy with May 1st. I think my brother was nearer than he realized to dialysis; when we saw the surgeon last week, he looked quite shocked when we came out - I don't think he was expecting to be given a date, especially one so soon!

I've had more test results which I'm told are all OK, and now have a date (next Tuesday) for the HTA interview. I somehow guessed that we would go from months of doing nothing to a frantic set of appointments all in a few weeks; you'll probably all tell me that's normal!
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: The Date is set

Post by Tibbs »

Bravo, Matthew, you're officially a hero!

Yes, from my experience and for others on here live donor transplantation is very much a foxtrot - slow, slow, quick-quick, slow!

Also don't be surprised if the operation date changes. Mine was moved back a week at quite short notice due to surgeon availability, and others have been moved due to last minute health hiccups / scheduling conflicts. Remember this is the NHS, and whilst the care is usually excellent, the scheduling often leaves something to be desired!

Where are you having your transplant done?
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
MatthewC
Posts: 75
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

The Date is NOT set any longer

Post by MatthewC »

Tibbs wrote:from my experience and for others on here live donor transplantation is very much a foxtrot - slow, slow, quick-quick, slow!

Also don't be surprised if the operation date changes.
Well predicted, but I bet you didn't think you'd be right so quickly!
Today they changed their mind and decided that my brother is not yet ill enough for the transplant, so it has been deferred until he gets two consecutive eGFRs below 15% :x :x :? . In the meantme they have found a couple more things they would like to do to me!
At least that means I can do the paving and wall in my garden this summer.
Duker5
Posts: 200
Joined: Wed Apr 25, 2012 4:44 am

Re: The Date is NOT set any longer

Post by Duker5 »

MatthewC wrote:Today they changed their mind and decided that my brother is not yet ill enough for the transplant, so it has been deferred until he gets two consecutive eGFRs below 15% :x :x :? .
How annoying for you and your brother! I would have thought they wouldn't want him to get more 'Ill' before they made him better, doesn't seem logical, it's like being told sorry your not ill enough for a transplant despite how you feel! Sorry to hear it and hopefully for both of you the transplant goes ahead soon! And thanks to you for willing to be a donor, it's a magnificent thing your doing :)
madonbrew
Posts: 60
Joined: Tue Nov 27, 2012 11:18 pm

Re: The Date is set

Post by madonbrew »

Hi, this is an interesting post for me to read because the other day I saw the neph Dr and he said he will put me on the transplant list when my egfr gets to 20%. It's 39% at the moment but has dropped from 70 to 39 in 2 years. From reading other posts I thought 20% sounded still quite high for a transplant, but reading your post that they were going to do your brothers at 17% maybe it's more usual than I thought?

Aww, well enjoy doing your paving in your garden first!!! That's if the weather ever warms up enough to step outside for more than two minutes!!
IgG4 systemic disease causing chronic pancreatitis, CKD, and affecting the liver.
MatthewC
Posts: 75
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Re: The Date is set

Post by MatthewC »

madonbrew wrote:Hi, this is an interesting post for me to read because the other day I saw the neph Dr and he said he will put me on the transplant list when my egfr gets to 20%. It's 39% at the moment but has dropped from 70 to 39 in 2 years. From reading other posts I thought 20% sounded still quite high for a transplant, but reading your post that they were going to do your brothers at 17% maybe it's more usual than I thought?
The thing was that he had one blood test which gave 15% eGFR and we met the surgeon and the op was planned. Then, when we left after that meeting, there was another blood test done which gave 17% and so they changed their minds as they consider that too high. It seems they want to see two consecutive readings of 15% or less, I think. He has been at 17% +/- 2% for a year, and apparently he could continue like that for another year or more. Meanwhile, I am not getting any younger!
madonbrew
Posts: 60
Joined: Tue Nov 27, 2012 11:18 pm

Re: The Date is set

Post by madonbrew »

Thanks for your reply Matthew! I guess they must try and keep from doing them until egfr is a bit lower then hey. It's all very confusing! It also seems to be very individualised on the surgeon and patient, so one surgeon might be more up for doing one sooner than another.

It must feel pretty stressful too getting yourself psychologically prepared then to have it all changed again. You are amazing to offer your kidney!! My dad keeps saying he'll give me one of his but he's 76 - I dunno if that makes him too old. Otherwise I'll have to wait for another donor to come along...like lots of others on here.

You take care!!
IgG4 systemic disease causing chronic pancreatitis, CKD, and affecting the liver.
MatthewC
Posts: 75
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

The Date is set - Again

Post by MatthewC »

Well, the date is set again. The hospital team have acepted that my brother's "quality of life" is affected and so have agreed that the operation should be scheduled, eeven though his eGFR remains obstinately above 15% (just). I think they have accepted his evidence which was that he could not physically do the same walks on holiday in May this year which he could do the previous year, even though his eGFR had hadly changed.

So, the operations will be on October 16th, and I only have the HTA interview and another ultrasound to be done in September.
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: The Date is set

Post by rheaybou »

HTA is a walk in the park for both donor and recipient.....if you enjoy crying that is!

From what my donor told me about the ultrasound, well they picked which one they take. So about 15 minutes after that he saw the surgeon and they told him which one they would like to take.....he agreed about his left one, he called me and we both cried like little girls.

Again I have nothing but admiration for what you are doing.
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.
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: The Date is set

Post by Tibbs »

Well done Matthew, you're a real hero!

They almost always take the left kidney, as the blood vessels and the ureter tend to be longer which makes the implantiation into the recipient a bit easier.

I agree about the HTA being easy - for us it was an exercise in how to cram a 5 minute meeting into 45 minutes.
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
lainiepop
Posts: 121
Joined: Thu Mar 29, 2012 5:42 pm

Re: The Date is set

Post by lainiepop »

What a wonderful thing you're doing! And great u have a date now!
My dad donated to me just over a year ago, they took his left one, they said they always take left as easier to get unless it has more blood vessels attached or something, thats what they look at on the ultrasound the number of vessels. Luckily dads right one had more :)
What is the HTA again?!
Do keep us updated, i cant believe a year for me and dad has gone so quick, i remember a month after him saying its so strange a month ago it was in me now its in you :)

Tons of luck xx
1982 - born with one imperfect kidney, no bladder
1984 - urostomy op
1990 - bladder built out of colon op
2007 - birth son, gfr drop 30% to 26%
July2011 - birth prem daughter, gfr 17%
August2011 - gfr 10%
Now - gfr 8.8% transplant from dad 29th May2012!
MatthewC
Posts: 75
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Re: The Date is set

Post by MatthewC »

Tibbs wrote:They almost always take the left kidney, as the blood vessels and the ureter tend to be longer which makes the implantiation into the recipient a bit easier.
Well, they already know that the left has one artery in and one out, but the right is far more complicated, so left it is. I can't then understand why they need another - that's not going to change, is it?!
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