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Author Topic: creatinine level on donor increased from 88 to 500 post transplant  (Read 20662 times)

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Offline elephant

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #15 on: June 24, 2013, 11:25:28 AM »
Sear bradwitt

That was some great advice from Dr. Bill. 

I developed Ulcerative Colitis less than a year after donation.   No way to know if it was related to the stress of surgery, or would have happened anyway.

The illness doesn't change my perspective on the donation.  But I was disappointed at the lack of interest from the transplant center when I called to report my problem and ask for advice. 

My recipient has better kidney function than I do, based on  creatinine levels.  But I suspect that mine is impacted somewhat by weightlifting and running, since I'm more muscular than your average elephant.   Since the medication for colitis can affect kidney function, I do have blood work done regularly and plan to continue with that.  We do need to monitor our own health carefully now.

Love, elephant

Offline bradwitt

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #16 on: June 24, 2013, 01:02:23 PM »
Thank you so much Dr. Bill...I'm not sure where to begin...
First of all, my brother and I would love to meet you when you next roll through to Maurelle Island (My father owned a farm on Hornby Island for years...the islands off the coast of Vancouver Island are beautiful. I actually live just outside of white rock in an area called Panorama Ridge...about 10 minutes from the border...you would be passing by my house (Scott Road and 60th)...just off Highway 10.
My brother lives in Shawnigan Lake...just before you get to Duncan.
My brother and I both eat and live a better lifestyle than we did pre-transplant (we both lived a pretty healthy life prior to as well).
We just found my brother a new Nephrologist in Victoria, and we plan on getting all of the documentation you requested. The surgeon told us flat out that we should take this as far as we can....which we most certainly will do...if we can make a positive out of a negative and have an impact on post transplant care for the donor then, that is something to strive for. The big thing that I would like to be a part of changing is with respect to the follow up on the health of the donor, as well as with the pre-transplant information that is disclosed to the donor. We certainly were not told that there was a chance that the donor could go into acute renal failure...I know that it is very rare, so I can't  point any fingers in that regard...and I think that disclosure of that information could really hurt the living donor program...Not something I want to do, but, I feel that they need make some adjustments, one of those adjustments is a need for transparency...another is that a system needs to be implemented to follow and chart the donor's health from the day of surgery until day the donor dies. The fact that this is not being done boggles my mind, it's like a meat factory that just churns out transplants without a second thought towards the potential health concerns of the donors themselves...It really feels like they are taking the kidney, slapping the donor on the back and then ushering them out the door...mean while the front door is opening with a new donor walking through...neither will receive any follow up care that will be documented for the benefit of all donors, and all people who are considering donation.
Thanks again Dr. Bill, and you Elephant...really appreciate the information, and so does my brother.
Cheers

Offline poodles

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #17 on: June 24, 2013, 05:34:51 PM »
Hi Brad I read your report of your brother's donation and although somewhat shocked I am not really surprised. I donated a kidney to my husband & as a consequence he set up a Canadian Donor Discussion Board http://fordonorsonly.com/

There is also a sister board for Recipients Only http://www.forrecipientsonly.com/ both under the auspices of the Canadian Kidney Foundation.

We Canadians are reluctant to make a fuss so as to reduce the possibility of creating an adverse opinion for the whole donor process. However there is a huge problem due to a seeming lack of accountability & Donor Follow up. When I was leaving hospital the Doctor on Call said "we have no procedure for this". He was referring to my request for discharge papers. I now see this as the central problem with Canadian Living Organ Donation.

If you feel comfortable posting about your brother's experience on For Donors Only, please do, we need to get more information as to the situation here in Canada. For example you would not have got got information you needed so quickly & freely given, here in Canada right now and that is something that we are hoping to create, over time, with this board as our model.

Offline bradwitt

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #18 on: June 26, 2013, 05:30:32 PM »
Hi Poodles...you bring up a few interesting points.
When my brother and I went to "my" first post transplant clinic visit they were really only set up to receive me...the recipient...you see...Donor's have no files...The only reason he was with me was to discuss his very rare case.
If there is no file...how can they follow the future health of the donor...I think the answer is clear...they don't follow the health of the donor.
If they don't follow the health of the donor, how can any clinic say that there are few health risks associated with donation...what are they basing their statement on?

Offline bradwitt

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #19 on: June 26, 2013, 05:39:16 PM »
By the way, my brother's creatinine has now come down to 140...(deep sigh of relief)
Mine recently went from 202...down to 191...then up to 218...and now sits at 189.
Apparently it will go up an down a bit while they are adjusting my meds. I am feeling less stress with respect to my brother...what is still unresolved is "Has his kidney been compromised because of the acute failure. My Surgeon feels it has, just not sure of to what degree (he says my graft will have a shorter life as well)...The head Nephrologist tells us that he will be 100% and there will be no affect to the life of either kidney. Tough to know what to believe. Such has been the case throughout the entire post surgery process.

Offline WilliamLFreeman

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #20 on: June 26, 2013, 06:25:56 PM »
bradwitt,   Sorry, yet again!

When your brother sees the independent nephrologist, and after she/he has reviewed his entire medical & surgical record regarding his donation nephrectomy, have your brother ask:  1] What caused the ARF?  2]  How long did his elevated creatinine clearance (GFR) last?  3]  Would the nephrologist order a *MEANSURED* GFR (e.g., a 24 hr creatinine clearance, iothalamate scan, etc.)?  Then 3]  Given your brothers age, gender (women on average do a bit better following ARF than men), the cause of the ARF, the duration it lasted, and his current measured GFR, what are the chances for having some impairment of his kidney function down the line -- and what can be done to minimize any possible impairment?]

It is not clear why *your* kidney should be affected, unless the cause of his ARF occurred *before* your kidney was removed.  Knowing the cause of the ARF & when it occurred has implications for the health of your kidney, too.

All the best in the health of both of you -- and in trying to navigate the transplantation health care system.

Bill
Bill - living kidney donor (non-directed, Seattle, Nov 24, 2008), & an [aging] physician  :-)

Offline bradwitt

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #21 on: June 26, 2013, 09:06:57 PM »
Thanks Bill, The quick question is that they don't know, they believe that he had a reaction to one of the drugs injected into him at the onset of the operation, they do believe that what ever happened occurred prior to them taking the transplanted kidney out...the surgeon is pretty certain that both graft and my brother's kidney were affected by the same culprit (my kidney wasn't working and neither was my brothers)...I know that the transplanted kidney sometimes takes a while to kick into gear so I don't know how he can differentiate between the one or the other.
My brother is looking for a new Nephrologist in his area, I have sent him all of your information...much appreciated.
Thanks again
Brad

Offline Fr Pat

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #22 on: June 28, 2013, 07:19:31 PM »
Dear Dr. Bill,
     Hi. I know that this is a bit off the topic of the problems faced after this transplant, but as in your very informative post you mentioned some good things donors could do to make "productive worry" a source of good health-maintenance decisions I wanted to add a question.
     Elsewhere I read a posting from a kidney donor who said that in a routine check-up her doctor had recommended that she take small daily supplements of vitamins D and B-12. The doctor said that she believed all living donors should do this. I don't recall any reasons given as to why living donors might be more subject to shortages of those vitamins. And I had never heard that suggestion elsewhere. To play it safe I have started to take a small daily dose of those, but I don't really know if it is worth it. I was wondering if you might have heard/read anything about this?
    best wishes,
      Fr. Pat

Offline dodger

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #23 on: June 29, 2013, 08:46:31 PM »
Sorry to hear about you and your brothers less than stellar outcome, but it is looking better.

Your brother may want to talk with a dietician as well.  Less animal protein helps.  I am 125 lbs and was told to cut down my protein to 40 grams of protein a day.  My creatinine had been creeping up over the last year of my follow up with the US transplant hospital, so I kept a food diary and that is what they found.  I was eating dairy, yogurt, cheese, and nuts, besides what I was eating in meat protein.   So now I eat eggs and toast in the a.m., have a non-protein lunch and then a small protein supper.  It brought my creatinine way down, yeah.  So to take the strain off the kidney, you might both want to try this for awhile or for good.  Most eat way too much protein anyway.  You can get protein through veggies, the brighter the color or darker the green, the better. Just a suggestion.
Donated 3/10/11 to my niece at UW Madison, Wi

Offline WilliamLFreeman

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #24 on: July 02, 2013, 09:10:55 AM »
Fr. Pat,
     Vitamin B12 deficiency causes a type of megaloblastic anemia called pernicious anemia (and also specific damages to the neurological system).  Kidneys are not involved in any way in the absorption and utilization of Vitamin B12.  Almost all people with end-stage renal disease (ESRD) have an entirely different and unrelated type of anemia, due to low production of the hormone erythropoietin that is needed to make red blood cells by the bone marrow.  People with ESRD do not have a higher rate of pernicious anemia compared with people without ESRD.  Since people with ESRD do not need more Vitamin B12 than “normal” people, I do not see that otherwise healthy people with one kidney -- i.e., us LKDs -- would need to take Vitamin B12.
     HOWEVER, Fr. Pat, it may be a good idea for *you* -- and I and other oldsters, whether or not LKDs -- to take supplemental Vitamin B12.  Absorbing Vitamin B12 in food requires stomach acid.  Some of us oldsters, and other people on certain medicines, produce little or no stomach acid and do not know it.  If they do not absorb any Vitamin B12 from their diet, the body first uses up all the Vitamin B12 stored in the body, and then, with no more stored Vitamin B12 to use, Vitamin B12 deficiency starts -- with no symptoms until pernicious anemia and/or the other damage is felt or discovered.  Medical tests can be done to determine if one is absorbing Vitamin B12 from one’s diet -- but it is cheaper and less hassle to simply take Vitamin B12 daily [for instance, by taking a daily vitamin pill like Centrum for people age 50+ or equivalent].  (This is not an advertisement for Centrum -- in fact, I take a generic equivalent for less than half the price of Centrum.  I, like you, became an oldster long ago -- and, to boot, I am taking a medicine that often causes the stomach to produce little or no stomach acid.)  The doses of all vitamins in daily vitamin pills, equivalent to Centrum for age 50+, are not so high that they cause more cancer or heart disease.  (Yes, too much of certain vitamins can cause disease.)  BTW, lack of stomach acid interferes with absorption of Vitamin B12 *only* from food, but does not interfere with absorption of Vitamin B12 from vitamin pills.  Centrum for age 50+ and equivalent have 17 times the Recommended Daily Allowance (RDA) for Vitamin B12, and thus it can be absorbed in sufficient amounts by people with no or little stomach acid.  High intake of Vitamin B12 does not cause disease.
     Vitamin D:  Many people with ESRD have problems with proper bone development.  Those problems are not due to inadequate intake of Vitamin D or to low levels of Vitamin D among people with ESRD.  Exposing skin to sunlight and dietary intake, including milk that usually is fortified with Vitamin D, is more than adequate.  Thus, I do not understand why all LKDs should take Vitamin D.
     HOWEVER, due to fear of sunlight-induced skin cancer plus changes in occupational work and yards-work, more people are less exposed to direct sunlight for periods of time, thus causing some to have “insufficient” Vitamin D levels, or even (progressively lower) “mild, moderate, or severe” deficiency.  (People with dark skin and/or living in northern climates tend to have lower levels of Vitamin D than others.)  In the case of this vitamin, the test for Vitamin D level is easy and relatively inexpensive.  I think it is worth it to be tested for Vitamin D level, before us oldters or others start taking Vitamin D pills.
     I hope this helps, Fr. Pat.  As always, you are an inspiration for all us LKDs of any or no faith!   Bill
Bill - living kidney donor (non-directed, Seattle, Nov 24, 2008), & an [aging] physician  :-)

Offline tantemorte

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #25 on: July 02, 2013, 10:06:56 PM »
http://www.ncbi.nlm.nih.gov/pubmed/19857678 which points out D3 deficiency in more than half of donors.
http://en.wikipedia.org/wiki/Calcitriol which points out that D3 is produced in the kidneys,thus showing vitamin D production & levels are indeed affected by the kidney.

Offline Fr Pat

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #26 on: July 03, 2013, 01:46:40 AM »
Dear Bill,
     Thanks for the good info.
     I'm going to put in the "living donation in the news" section an article that the National Kidney Foundation just sent out, regarding vitamin D.
    best wishes,
       Fr. Pat

Offline bradwitt

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #27 on: July 11, 2013, 12:50:24 PM »
Quick update on my brother (donor) and I.
Both of us are doing much better thankfully, my brother's creatinine has come down to 131 (canadian measurement)...The Readers Digest version in case you are reading this for the first time...my brother was 88 pre transplant and then had a reaction during surgery that sent him into Acute Renal Failure (very rare)...his creatinine climbed to 500 post transplant and stayed that way for 3 or 4 days...fortunately his kidney began working and his creatinine started heading down to his new level of 131.
My creatinine level is now 155 and my Hemoglobin is almost back to normal (our transplant date was June 3rd)....I feel a little hop in my step...food tastes great and I am feeling better every day...it's a magnificent gift...I take my hat off to all of you...donors are my new super hero's. 
Very thankful, I feel that we both dodged a bullet...I just wanted to thank everyone of you on LDO that responded...your information was incredibly informative and your genuine concern was much appreciated at a very low point in our lives...Thank You.
My brother and I are going to follow up on the problems we experienced post transplant...he has found a new Nephrologist who is going to look over his medical and surgery records to try and figure out what went wrong.
Dr.Bill...I hope one day that we can meet at some point...I appreciate the fact that you took the time to research our case...your information was and is invaluable.
Again, thank you so much, again...hats off to all of you.
Brad

Offline sherri

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #28 on: July 11, 2013, 02:12:21 PM »
Bradwitt,

So glad to hear things are improving for both you and your brother. What you described sounded like a very scary situation, one donors all put in the back of their minds (and I think the doctors too). We all go in hoping for the best but having a healthy organ removed is serious surgery. The statistics are always minimal until it happens to you and then it is 100%. Thankfully it usually goes well and our other kidney compensates. I know people talk about having a "spare" kidney. I never felt like my left kidney was any more than a spare than my left arm is to my right one. Yes, we have compensatory systems built in, but I consider myself "driving on my spare" now that I am a donor.

Hope your brother finds a nephrologist who is willing to work with him and be honest and transparent about everything that occurred. It isn't anyone's fault per se but how a doctor and institution treat a patient after a complication is what is so important. Good luck on your new journey and wish you and your brother both a long and healthy life.


Sherri

Sherri
Living Kidney Donor 11/12/07

Offline elephant

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Re: creatinine level on donor increased from 88 to 500 post transplant
« Reply #29 on: July 12, 2013, 07:31:12 AM »
Dear bradwitt,

So good to hear you are both feeling better! 

I actually received a 2-yr followup call from my transplant center.  Still think it strange that's the end of followup, but they did call.

Love, elephant

 

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