Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: Terryw on May 18, 2011, 11:07:48 AM
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Hi all,
I have just started the process for my brother who got full renal failure just before Christmas, We both went for the first round of test on Monday and now have to wait for 2-3 weeks for the matching results.
Just wanted to say hi and will post as I go.
Have been reading some of the posts on here and its a big help along with the UK forum for Living Donors.
Terry. ;D
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Hi Terry
Think you're the guy I said hi to on the UK kidney forum so won't repeat it but just say hi again.
Remember that creatinine is measured completely differently in the US so the figures won't make sense to you until you sort the conversion. And I think eGFR is measured differently too.
Also remember that care in the UK thanks to the NHS is very different and we don't need to worry about insurance etc.
All the best to you and your brother - there is a wealth of information here.
:)
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Good luck Terry - we'll send positive wishes and prayers your way that all works out favorably for you both. Please keep us posted on your progress.
Peace
Scott
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Hi Terry and Welcome!
I am so glad you found this board! I am wishing you the best of luck with your first round of tests. Please let us know how it turns out.
Best of luck! :)
Linda
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Thanks all and yes I will keep you posted along the way I'm sure I will have lots of thing to ask and read up on.
And Thanks smudge I did notice that and was going to ask but your have just answered lol.
Also found the LDO Facebook Page.
Terry ::)
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Hi All,
Well after over 3 weeks I got the call today from my Living Donor Coordinator and I am a compatible match for my brother!!!!!!!!!!! Very pleased and has come at the right time after a few months of bad news!!!!,
The next lot of tests are being booked up and hopefully Sept/October the op will go ahead in Leeds!!!.
Terry. ;D ::) :P :-* :D ;) :) ;D
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Great news indeed Terry - it's always difficult to wait, but hopefully all will fall into place and you'll get the green-light to move forward. Your brother is lucky to have such a loving and selfless person in his life. Good luck and keep us updated.
Scott 8)
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Thanks Scott and we are 3 brothers who would do it for each other without being asked but cant wait to get the green light so he dont have to start dialysis, He is at 14% and hopefully it will hold out until then!!!
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We'll pray he's able to hold on for your gift Terry!
Scott 8)
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Praying here in Chicago....and blessings on the "motherland."
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Thanks Phil ;D
And just phone my LDC and she has arranged for the GFR,DMSA and also the Kidney mapping for the transplant team in Leeds UK to be carried out at the Kings College Hospital in London, Just got to wait for a guy called Magnus the LDC there to call me with a date/s for them.!!! a few more ticked of the test list !!! ;D
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At long last the LDC at KCH phoned after I phoned my LDC n Hull and now just waiting for the date to go for the CT scans!!! Hate waiting but guess its all part of it!!.
How did you all find the Human Tissue Authority (UK) ??
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Hi Terry
The HTA assessment was a bit of a let down. It was a chat (individually and then together) with a different doctor from the hospital who'd obviously had some specific training from the HTA. The whole thing took about 30mins in total.
We had to bring our passports (or other photo ID) and evidence that we were friends. It will be much easier for you with your brother as you probably have photos together from your childhood and early years as well as birth certificates that show you have the same parents (I'm assuming you do anyway). We had letters from people who had known us both, since before we knew one another who confirmed we had a genuine 'relationship'.
most of the questions we'd already been asked before - that we knew and understood the risks, that I hadn't been coerced or was receiving payment for my kidney etc. At the end she said she was happy with us and it then took a couple of weeks to get that in writing to our consultant.
The CT scan is interesting as that's how they decide which kidney to take based on the make up of your blood vessals. It's all very interesting but if you have a contrast scan the dye makes you feel like you have peed yourself. You haven't but it's a very strange sensation!
good luck
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Dear Smudge,
The CT scan not only helps them decide which kidney to take, but also shows whether ot not you actually HAVE 2 kidneys. Some people are born with only one kidney, but never notice unless they have a scan or X-ray done for some reason.
Fr. Pat
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Hi all,
lol Yes I have had a CT scan before and the dye and yes made me feel I had peed myself !!!
Well got the letter today and have the next and hopefully last tests next Thursday 28th in London and should know if all is ok the week after and my LDC has said that will just leave the Interview with the HTA and meet the surgical team in Leeds to set a date so could be 6-8 weeks away!! :o
So Fingers crossed all ;) ;D :P :-*
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Wow, things are really moving for you now :)
We had about 3 months from the appointment with the surgical team to the transplant due to scheduling but that does vary from Trust to Trust.
@Fr Pat - yes I know the CT scan identifies whether you have two kidneys, my point was about the interesting stuff around the blood vessals. As part of my early workup I had an ultrasound which confirmed I had two so we already knew that before the CT (actually I already knew that from a previous ultrasound but they had to be sure!!). I don't know if an ultrasound is routinely used in the US or not but I know several UK donors who have had that done early on.
good luck Terry
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Hi all,
After 7 hours at the Kings College Hospital in London yesterday its time to wait again lol should get green light next week and then its just the HTA interview and setting the date with the transplant :o :o
Started with the CT scan for the kidney mapping and also a X-ray followed by the Isotopes Injections and 30 min scan of the kidney funtion which was good to watch then the blood test after 2 hrs followed by one every hour for 2 more hours.
Right arm was a little sore and still is today but worth it!!!!!!
Fingers crossed everyone ;D :-*
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Fingers and toes Terry - Hope it all works out! Good luck friend and God Bless for continuing and your perseverance!
Scott 8)
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Thanks Scott
Just texed my LDC as she was on holiday last week and just a reminder to get resultsd from London !!! lol Should get a call Tuesday afternoon!!
Terry.
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Hi Terry
The CT scan is .... all very interesting but if you have a contrast scan the dye makes you feel like you have peed yourself. You haven't but it's a very strange sensation!
Hmm. I just had my CT last Thursday, and never felt that. All I felt was initial pain, for a brief moment, then quickly spreading, strong heat (this wasn't bad, since the room was kept extremely cold, so it balanced out in the end). I never felt the need to urinate. I wonder if the difference is that I was given an overnight course of steroids because they worried about my possibly being allergic to the contrast dye? Your mileage (apparently) may vary.
What did happen, though, was that an hour or so after the CT, after I had broken my overnight fast and was wandering around the Transplant Unit's hall, I suddenly got very slightly dizzy, went back to my bed to rest a while (this was near the end of my overnight, Wed/Thurs. in-patient testing), and wound up sleeping for around an hour.
In any case, good luck with the process! Snoopy
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Well just phoned my LDC and shes only had one set of results back from the tests and got to wait for the CT scan results and for the consultant to take a look then she will ring me.
But the one she dose have is the GFR and that is "Borderline" ??
Anyone else had this???
Terry ??? ;D
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Well I'm sad to say that I had a call from my LDC and my GFR results are too borderline (GFR of 70 at age 40) and I cant go any further and cant donate to my brother............
But was fully aware of this at the start but still a hard thing to take but we are going to stay positive and see whats next and just a thanks for all th info and post from you all as it helped so much in the last few months.
Thanks Terry :-\ ;D
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Oww! I'm so sorry to hear that, Terry. What a tough break.
Is there anything left you can do about that? A re-test, for example? A second opinion? I hope so.
But, if not, know that you did everything you could. I've heard from several people that just knowing that somebody was even willing to donate for them was a tremendous boost to their spirits, even if it didn't pan out in the end.
I hope everything works out in the end, for both of you!
Be well, Snoopy
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Terry - so sorry to hear you didn't get the results you were hoping for. I know you said you were three brothers and you'd all do this for each other in a moment, but I'm guessing there's saying that and then there's living it by putting your words to action. I'm certain your brother very much understands YOUR disappointment also in not being able to donate. Prayers and consolation my friend, for you and your brother. I hope he finds a suitable donor soon. I don't remember, was your other brother an incompatible donor match? Please keep in touch and keep us updated on your brother's journey.
Peace and God Bless buddy
Scott 8)
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Terry,
I am so, so very sorry that the results did not come back favorable for you to donate to your brother. I can only imagine how disheartening that is for you and him. I just wanted to tell you how fantastic I think it is that you were so willing to step up and help your brother. Is it possible that your other brother would be able to donate? I am keeping you and your family in my prayers that a donor is found for your brother.
God Bless,
Linda
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Hi all
Well my Kidneys were no good I have a GFR of 70 and now have to be tested once a year but still would not change anything as my other brother was also tested just before the end of the year and was also a match plus his GFR was 110!!!! so on the 23rd of this month they both went into St James hospital in Leeds and they did the transplant!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My brother asked me not to post any ware until it was all over lol.
Both are doing good and just having the normal things with a little pain ect but my brother that had the renal failure is looking good, the kidney is working well and he has already got color back in his face and cant wait to get out now!!!.
Its some good news after a very sad beginning of the year my brother who had the renal failure lost his wife (38 years old) after she lost her battle with a brain tumor after 9 years of fighting it.
It was one of her last wishes that the transplant went ahead as soon as it was possible so she get that wish and a healthy Dad for there 2 children.
Welly Grin
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Hi Terry,
So good to hear back from you - thank you so much for the update!
I am so glad to hear that your other brother was able to donate to your brother that was in renal failure, and that they are both doing well. That is fantastic news!
I am so, so sorry to hear that your brother lost his wife. 38 years old is far to young and my heart aches for all involved.
As far as how you are doing. It certainly had to be a shock and great disappointment for you to learn of your own low GRF. However, it really is good that this was noticed now, and this is something that you and your doctor will be able to monitor and hopefully this will keep you healthy and you will live a long and normal life. A person can do just fine with a GFR of 70, it just isn't high enough to be able to donate.
I wish all the best to you, both of your brothers, the children and the rest of the family.
God Bless you all! :)
Linda
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Dear Terry,
Thank you for sharing both your joy and sorrow. How marvelous that your sister-in-law has a fulfillment of her last hope and that your nephews/nieces have a healthier father. And also some terrific uncles!
love, elephant
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Dear Terry,
Thank you so much for coming back and posting your update. I'd been worried about you since last year.
I'm very happy to hear about the successful transplant, but sad to hear about the recent tragedy. What a year for your family!
Take care of yourself. As others pointed out, had you not tried to donate to your brother, the issue might not have been caught soon enough. Good luck to you and your family!
Be well, Snoopy