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Author Topic: General questions about a possible transplant...  (Read 2738 times)
kristina
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« on: May 17, 2014, 03:26:58 AM »

Hello,
          I have thought about some general questions concerning a transplant i.e. :

1) If the donor’s kidney GFR functions – for example -  80%, does this mean the recipient would have 80% GFR
    with the new transplanted kidney as well,
    or does it “only” function 40% because of the fact that their one kidney takes over the function for two kidneys”?

2) Is there a “general age limit" beyond which specialists become reluctant to authorize a transplant, or is it always an individual matter?

3) Do kidney donors have also a biopsy as a matter of course to access their kidney condition ?
    Or is only the new kidney of the recipient having a biopsy... what happens if the kidney biopsy on the recipient goes wrong ?
    Is this a possibility?
    Is a kidney biopsy really necessary in the recipient's case... or is it mainly done for medical research reasons ?

4) If in a live kidney donation the recipient dies on the operating table - or soon after -
    does the donor receive their donated kidney back in such a case?

5) If high BP is due to poor kidney function does one’s BP normalize
    if one has a donated kidney from someone who has a normal blood pressure?

6) Does donating a kidney hurt the donor in “the long run” ? I would not like anyone to live in pain after they considered kindly
    to donate one of their kidneys to me ... I don’t think I could accept or even live with such a thought...
    ...even if I was very desperate...

7) I have read that the donor’s kidney enlarges to “make up” for the function of their one “lost” kidney ...
    ... does that also happen with the recipient’s new kidney?

   Thanks from Kristina.
« Last Edit: May 17, 2014, 03:34:28 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
SooMK
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« Reply #1 on: May 17, 2014, 05:03:39 AM »

I'm 5 weeks out of a live donor transplant. I can answer only a couple of your questions from my experience.
3) My donor did not have a kidney biopsy. Nor have I had one so far. My understanding is that biopsies are a diagnostic tool.
5) One of the most sobering facts of a transplant and why it is termed a treatment, not a cure, is the side effects of the drugs, among them high BP, kidney damage, cancers and so on. This is re-iterated throughout the process to set expectations. I was taken off BP meds several months before my transplant (I think changes to my diet reduced it) and so far the docs are happy with it. I find in my twice daily measurements that it seems to vary greatly but if the docs are happy, I'm happy.
6) Everything I've read says that donors experience no long term ill effects from losing one kidney. I know my donor went back to work two weeks after donating and she feels fine. The donating process itself is non-trivial and it is a humbling experience having someone do this for you. It is major surgery so there is the short term impact of that. I felt just as bad at the seriously aggressive evaluation process and wished I could spare her the aggravation but I think it is calculated to weed people out. I, like you, couldn't bear to have someone have long-term negative health issues related to donation but the testing tries to eliminate anyone who might have this happen. This is yet another reason that I'm glad both my donor and I are oldish (65). I would not have accepted a kidney from a young person and I still cannot believe that I had a wonderful friend at 65 who was healthy enough and willing to give me a kidney.

I'll be interested in the answers you get to the rest of your questions.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Ninanna
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« Reply #2 on: May 17, 2014, 06:13:39 AM »

Hi Kristina, I'm not an expert, but I will try to answer your questions from my experience.

1)  When my mom was evaluated, they never talked about gfr, only the creatinine and 24 hour urine test. They also did a CT with dye to look at my moms kidneys. We were told one is usually bigger than the other and that they were required to give the recipient the smaller one. In my moms case, this was the left one. It also had a very small stone.  At my moms post-op visit, her creatinine hadn't gone up at all. As for what the recipients function will be, that can vary a lot with drugs, etc. I heard mention in another thread where a larger recipient got a kidney from a smallish person and had higher creatinine levels, where as a smaller person got a huge kidney and had really low creatinine levels.

2)  I'm not sure if there is a general age limit or not. My mom was 54 when she donated.

3). As far as I know kidney donors do not have a kidney biopsy done. They did biopsy my moms kidney after they removed it from her but before they put it in me. I don't know if this is standard with all liver donor transplants or was just part of the trial I was in. As for biopsys for the recipient, there are 2 types of post tx biopsy: for cause biopsies and standard of care biopsies. For cause biopsies are when something isn't right and they need to check the kidney for signs of rejection, drug toxicity, etc. Standard of care varies from center to center and is just a check to make sure there is nothing going on behind the scenes that hasn't been picked up by blood/urine tests. Yes they can go wrong. KarenInWA has a biopsy story that will give anyone nightmares.

4). I do remember reading a story in New York where a main artery was cut and the donor died. The recipient did not receive the kidney. The kidney had not been removed from the donor yet and they were trying to save her life. If the kidney had been removed I'm not sure what would have happened. But I would assume once it's in the recipient they aren't taking it out.

5)  In theory yes, but this is a very individual thing. Before transplant I was on 5mg of lisinopril. Post transplant I had a lot of fluid problems and was on 2 different bp meds. Once my fluid normalized I was able to remove both bp meds. The immunosuppressants can also cause weight gain, diabetes, and high bp.

6)  My mom went through a lot (surgically speaking) and recovered extremely well. She had the kidney removal, then they rolled her over and harvested her bone marrow. They mad over 100 holes in her pelvis to get the marrow. After 3 days in the hospital she was discharged, and within the week she was moving around normally with minimal pain. She had a lot of exhaustion, but that was her missing bone marrow. She also has had some numbness and nerve sensitivity on her inner left thigh, but all that has improved or disappeared now. Just a few days ago she told me how good it felt to finally have delivered the baby (her kidney).

7)  I have no idea!
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
kristina
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« Reply #3 on: May 17, 2014, 08:46:11 AM »


Thank you SooMK and thank you Ninnana, your answers give lots of food for thought.

I mentioned a kidney biopsy because I wondered if a biopsy might be taken from the donors kidney,
after being taken out from the donor but before being put in the recipient,
I thought that if the biopsy was done in transit, there would be no bleeding...
... but as soon as the kidney was in the recipient and under the pressure of their vascular system,
the donated kidney could begin to bleed as a result of the biopsy made outside the body.
Could this happen?

Thanks again from Kristina.

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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Poppylicious
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« Reply #4 on: May 17, 2014, 09:25:21 AM »

I can't answer all your queries, but as a donor in the UK I can answer some.

2. I think it's done on an individual basis. I don't know the age of the oldest recipient in the UK but the oldest live donor was in their eighties.

3. Kidney donors don't have a biopsy and it isn't standard to do a biopsy whilst its in transition from one body to another.  The only reason you'd need a biopsy after transplant is if your 'new' kidney is showing signs of rejection, and even then they won't do it immediately because they'll want to rule other things out. 

4. The donor doesn't receive their kidney back. It's given to someone on the list (the donor signs paperwork to say this is okay; if they're not okay with it and don't sign it will be disposed of instead, rather than be put back).

6. Sometimes some things do go wrong.  I have heard of donors who have had complications caused, resulting in numerous hospital stays and continuous constant pain.  When someone goes through the evaluative period they are informed (and expected to do their own research too) of the complications which can arise, including death (very rare, my living donor coordinator said no donor in the UK had died in the ten years she'd been arranging live transplants) and the fact that later on in life the donor may need dialysis (not due to kidney failure but due to accident ... if one kidney gets damaged most people would be able to live healthily with the undamaged one; kidney donors don't have that option!) It is major surgery and it isn't needed ... there's always a risk. However, no one can donate unless they're deemed to be in tip-top condition so there shouldn't be any issues beyond bad luck, in the long run.

7. I have no idea!  My kidney went into a larger male and his creatinine is higher, but stable. As long as it stays stable and all his other labs are fine then the nephs are happy. I'd love to know if my kidney has grown since it became his kidney!

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
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sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
kristina
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« Reply #5 on: May 17, 2014, 11:51:10 AM »


Thank you Poppylicious. This is some more very good information.

I really appreciate all the effort that is put into answering these important issues.

Kind regards from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
nursey66
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« Reply #6 on: May 17, 2014, 03:58:02 PM »

My hubby had 2 sisters work up for donating to him. They ended up being a perfect match to each other, but 3 of 6 for him. The whole family is type 0. Anyway, one of the sisters wanted to donate so badly, she said she would give it to a stranger, if not her brother.Anyway, he got her kidney, hers was removed laperoscopy, and she went home from the hospital the next day  !!!  She was back to work in 2 weeks and has had no problems in the past 11 years. Now he needs anouther kidney , that one failed after almost 11 years, so his other sister is again being worked up. No one had a biopsy or any type of invasive testing that I know of.  We all met at the hospital early in the AM before the surgeries ,then split apart for pre-op stuff. He has 8 sibblings and has had kidney problems since grade school , so they all knew he would need a transplant at some time. Some have health issues that take them out before they get to any testing. A living donor is a gift that is so hard to be able to thank them enough ,it's really a big  generous gift ,nothing  can compare.
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kristina
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« Reply #7 on: May 18, 2014, 08:31:48 AM »


Thank you Nursey66 for sharing this wonderful story with us.

It is very encouraging.

Kind regards from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
jeannea
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« Reply #8 on: May 18, 2014, 10:27:13 AM »

My mother donated to me in 1998. She was in her 50s. She is still doing great. Her creatinine is 0.9. Her only effects from donating were recovery from being operated on. Her body took a few weeks to heal and since then no problems. She did blood tests and a 24 hr urine. They also do a renal arteriogram to determine which kidney you get. As the recipient you get the "worse" one. They claimed my mother's kidneys were working 60% and 40% in her body so I got the 40%. Her kidney was plenty of function for me and the kidney she kept is plenty for her. They do not do a biopsy on the donor. It carries way too many risks and is not done on a healthy person. They also examine the kidney after it is removed but before it is inserted. I don't know exactly what that entails but I don't believe there is a biopsy. If a problem is found, the kidney is discarded. If the recipient dies, the donor does not get it back. That would be more harmful than helpful.

BP is always an issue. It is important to keep your BP under control for the health of the kidney. However, Prograf can increase your blood pressure. So almost all of us have to take BP meds.

I don't believe the kidney actually enlarges to take over. Each kidney already comes with more function than you need to live. They just comtinue to function.

The age limit thing is controversial. Some centers have age limits and some don't. The limits vary and exceptions can be made. Best thing to do is ask your doctor.

I wouldn't worry so much about GFR in yourself or a donor. If you get a kidney and it works, who cares what your GFR is? I have been diagnosed since 1992 and my doc has never mentioned GFR. My kidney is working or not. We watch the trend of my creatinine to detect problems. According to my official lab reports, my GFR is marginal to not good. But my creatinine is 1.2 and my transplant is working.
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kristina
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« Reply #9 on: May 18, 2014, 12:05:19 PM »


Thanks for the detailed description jeannea .  It all helps to form a more complete picture

and I am very glad that you are both doing so well.

It would be interesting to know some more details of transplants with life donors who are not a relative of the recipient.

Thanks again from Kristina.

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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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