Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: bradwitt on June 11, 2013, 02:25:09 AM
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my brother just donated his kidney to me, the surgery went well, but due to something that occurred during surgery to remove his kidney (perhaps an allergic reaction to pain meds or anesthetic) his kidney and my transplanted kidney went into shock. My creatinine level prior to surgery was 605...my brother's level was 88. Two days post transplant his creatinine went to 479, mine was at 469. The next day mine went up 3 points, his went up 10. The next day mine went down 30 points,,,his went up another 10. The next day mine went down 80 points and his went down 30 points. Our kidney's had kicked in. we were visited by the surgeon prior to the numbers heading down...he apologized and said that in the history of Canadian kidney transplants, this had never happened before...ever, he could not tell us what the future had in store for either of us because, he has never heard of it before and their is no documented information. The next day the nephology team came in and told us that the surgeon might have never seen this happen, but they had, the condition will turn itself around etc etc. We subsequently found out that the surgeon was correct and that the nephology team had not ever seen this in a donor....recipient yes...donor...no. There seemed to be a power war between surgeon and nephrology with respect to who had the lead role.
Now it seems everyone is running for cover and there is allot of finger pointing...8 days post surgery and my brother called me to say that the head nephrologist came in and told him they were cutting him lose... he could go home. We left to go pick him up...while we were on the way the surgeon came in and told my brother that he disagreed with the nephrology team and he thought that my brother should stay in hospital. We had come to believe (through actions and words) that the nephrology team was responsible for our post transplant care and that the surgeon was responsible for the surgical side of things....so my brother came home...the surgeon signed his release papers. Tonight my brother called head of the Nephrology team to ask a question about blood work tomorrow. She seemed surprised that he was out of hospital...my brother said, well you told me I could go home this morning. She replied "I never discharged you...you are the surgeon's patient"...My brother said..."you told me I could go home, and the surgeon came to see me 30 minutes later to say that he disagreed with Nephrology...if you didn't tell me I could leave, why did the surgeon come to see me to tell me that he disagreed with your decision to send me home". She said "you are his patient, I never told you that you could go home". Now it seems everyone is running for cover and leaving my brother in the dust. I am more angry than anything else right now...my brother's creatinine is at 250 now (day 8 post surgery). I have lost trust in the Nephrology team...not sure where to go from here...I'm worried that my brother's health might be compromised. Has anyone heard of creatinine levels going from 88 to 500 in the donor post surgery? If so...any health issues? Any advice with respect to anything of this would be appreciated.
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Dear bradwitt,
So sorry to hear of your difficulties! I hope it all works out for you both. In the meantime, while Canada doesn't have the same requirement for an independent donor advocate as the US, does the hospital have an ombudsman and a CEO? Your provincial medical/surgical review board, provincial minister of health and premier, and the press are all possibilities.
These all take effort and you're both recovering from surgery, with complications, and he has a fractious medical/surgical team. Do you have family or friends who can champion your quality of care? A primary care physician or MD friend who can be your advocate? Finally, you can talk to a lawyer, but that's at the redress stage, not likely to be helpful fast enough for the improving treatment effectiveness and coordination stage you're in now. Best wishes.
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With a strong caveat that I am not an expert, I do know that it's normal for the donor's creatinine to shoot up after surgery. Effectively, the donor's kidney function has just been cut in half. Creatinine should come back down (and kidney function up) over the coming weeks and months (and it sounds like that's already happening). FYI, I think the creatinine numbers may be off by a couple decimal points. You probably mean "0.88 to 5.0" rather than "88 to 500". I'm not sure if the magnitude of the creatinine increase is normal or not.
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Canada uses a different measuring tool for creatinine so I think it is difficult for those in the US to understand the numbers mentioned above. This conversion table is from http://www.ccpe-cfpc.com/en/pdf_files/drug_lists/normal_values.pdf
Creatinine, serum Canada US
Male 70 -120 umol/L 0.8 - 1.4 mg/dl
Female 50 -90 umol/L 0.56 - 1.0 mg/dl
I agree with Clark, you would need to get a patient advocate involved in order to help you or at least involve your brother's primary care physician to help sort things out. Is there an agency within the National Health Care system to help patients to report a grievance? And most of all a nephrologist needs to be consulted to see about the unusually elevated creatinine post surgery.Please let us know how things are going. I am so sorry this surgery has had some unexpected results.
Sherri
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Dear Dave,
Everyone is different, but this seems extreme to me, especially the continuing increase over multiple days post surgery. To be discharged while it is unresolved, and to be put in the middle of a professional disagreement about one's care, while one is both recovering and experiencing a mysterious complication just adds to the stress these guys must be experiencing. Let's recognize that bradwitt posted at 2:30 a.m. with his concerns about his brother's conditions and treatment.
I've taken the unprecedented step of forwarding bradwitt's post to the nephrologist who evaluated me, in what passed for independent review of my fitness 12 years ago. I don't know what help she might be moved to offer, or reassurance, but perhaps this isn't as novel in her experience, and she may have a clear treatment path to recommend.
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Sorry, I probably posted too hastily this morning. I certainly didn't mean to sound unsympathetic - this sounds like a really frustrating situation for bradwitt and his donor. Sherri is right; Canada has a completely different measurement system for creatinine, and I missed that this morning. For what it's worth, I ran the numbers by my wife, who is a nephrologist. She suspects the donor suffered from acute renal failure of the remaining kidney during surgery. Unusual, but it can happen. According to her, most patients in this situation regain full kidney function (normal creatinine levels) over the course of a few weeks. The fact that the donor's creatinine is trending back down is encouraging. Of course, as Sherri and Clark say, the donor should definitely be seeing a nephrologist that he trusts. I hope things work out well for you guys. Best of luck.
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Thank you all very much.
We are now 10 days post surgery, yesterday my brothers creatinine was 205 (Canadian) and mine was 265 as of several days ago. Good news on both accounts because the numbers are heading in the right direction, a great relief.
We met with the surgeon yesterday, a very talented surgeon, his initial bedside needs some work, but all of the information he gave us was correct...tough to hear, but the truth is what we wanted to hear, regardless of how bad it was.
Nephrology feels my brothers numbers should settle in the 120 to 130 range (based on a calculation based on, 70% of (pre-transplant level (88) x 2)...if that makes sense.
The surgeon feels good about our numbers, but he did say "I don't know if nephology will tell you this or not, but both the donor remaining kidney and the transplanted kidney have experienced some level of cell death due to the acute renal failure, and the life span of both graft and donor kidney has been compromised...perhaps only marginally, perhaps more than marginal" Any information with respect to that statement would be much appreciated.
The hospital has now had 3 meetings consisting of nephrology, surgery and hospital management...apparently there has been some tongue lashing from administration...That, in and of itself is a good sign that this will lead to positive change...terrible patient experience.
The surgeon finished our meeting with "you should take this as high as you can, we will certainly meet with the head of surgery and nephrology as well as management. I will keep you all posted on that.
My big concern now is my brother...is there anything that he can do to regenerate (if that is the correct term) the damaged cells. Does acute renal failure always compromise the life expectancy of the kidney?
We both know this could have gone south, and both feel relieved that it didn't (so far)...any information received will be much appreciated.
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Bradwitt,
I'm glad to see that the creatinine levels for both you and your brother are trending in the right direction. Clearly, there was an adverse outcome during the surgery that was unexpected or rather a rare occurrence. What is more concerning to me is your conversation with the surgeon:
"I don't know if nephology will tell you this or not, but both the donor remaining kidney and the transplanted kidney have experienced some level of cell death due to the acute renal failure, and the life span of both graft and donor kidney has been compromised...perhaps only marginally, perhaps more than marginal" Any information with respect to that statement would be much appreciated.
I'm not sure what the "norm" is in Canada or if it is related to a National Health Care System or not but I would expect as a patient to be told of everything that went on during my surgery and for professionals to be transparent. How will your brother or his physicians be able to care for him properly, keeping a closer eye on his kidney function, if he is not aware of the acute kidney failure that occurred during this elective procedure. It is imperative for him to get copies of his medical records so that he can be followed up with appropriately. He may need to have blood work done more often especially in the beginning to monitor his kidney function.
In terms of acute kidney failure vs. chronic kidney failure, one of the differences is that patients usually regain their kidney function over time in an acute situation. However, this is usually in the case of two functioning kidneys. As living donors we are already compromised having our lone kidney compensate for the load. Your brother may benefit from a consult with a nephrologist who is able to look over his pre donation labs, the surgical reports, his post donation labs and together figure out a reasonable care plan. Not sure how it works in a socialized system but he may be better off going outside the hospital since the according to the surgeon, the nephrology department may not be willing to discuss. I guess fragmented care is a problem outside the US also. There is a nurse who posts on here sometimes, her name is Donna Luebke (you can see her posts on the forum section). She is a good resource and very knowledgeable on renal disease. She may be able to shed some light.
Hope things start to improve. Seems like you are both going in the right direction. Would love to hear from your brother if he would like to share his experience. There may be psychosocial issues surrounding the surgery in addition to the medical issues. This must be difficult for you, as a recipient and a brother. I'm sure the doctors assured you that this was routine surgery and neither one of you anticipated this complication. Many donors, even those who have suffered a complication, say they would have done it again. I'm sorry that this surgery did not go as smoothly as anticipated and I hope you get the support you need to heal both physically and emotionally.
Thoughts and prayers for a full and speedy recovery to both you and your families.
Sherri
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I have no answers but wanted to give you some {{{hugs}}} and will be keeping good thoughts that you both recover well.
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Hi...
Just make sure that you get your records now and your brother,also.
Ask them if there is anything pre-procedure that might have indicated the chance of this happening.
They can be telling you this has never happened before but that might be just what they're telling you.It's not really in their interest for you to find out what happened,right now they're trying to make sure they don't get into trouble...and a documented,sure-fire,recommended,even way for them to do that is to apologize profusely & say the kind of things you're hearing now.
May I ask where this happened?
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Just wanting to send you both my best wishes really. I hope you can make changes that will help others in future (speaking as someone for whom the transplant experience ended in tragedy).
And I so much hope that your health isn't compromised long term, that your numbers continue to get better and that you both do really well.
Rebecca
http://health.groups.yahoo.com/group/bereavedbylivingdonation
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Hi all, my brother and I are healing well, his creatinine has come down to 179 and mine has come down to 191...both still moving in he right direction...deep sigh of relief.
My brother lives on Vancouver Island and I live in Vancouver...he is now home with his family being doted on hand and foot, he sleeps allot right now, probably a little catch up from the many post surgery sleepless nights.
He is going to track down a Nephrologist in Victoria (has some trust issues with the Vancouver team...he is still staying on as the surgeon's patient).
A few questions and answers to some of your responses.
Clark...you sent the information from my initial message to your old Nephrologist, did he/she respond or have any information regarding our experience?
Sherri, just to clarify...with respect to what the surgeon said to us. We were both fully aware and had been told that he had suffered from acute renal failure...the point that I wanted to bring forward was that he said that "the Nephrology team probably won't tell you this, but due to the acute renal failure, both of you have kidney's that have been compromised, and the life span of each of your kidney's has been shortened". We did then meet with the head Nephrologist and asked her if the life span of our kidneys had been affected by the acute failure. She responded that it had not...which...is pretty well what the surgeon said that we would be told by Nephrology...so, the surgeon might be right, the nephrologist might be right or perhaps...perhaps there is a third option.
Dave, thank you for the information from your wife...that gave both my brother and I a great sense of relief...he has 2 boys, a lovely wife and a business to run...he had allot to lose...makes his donation that much more noble...I take my hat off to all of you donors...the transplant process is in itself incredibly demanding on both body and soul of donor and recipient. The difference is that the donor is a healthy person who has decided to give a gift which gives someone a new lease on life...they give this incredible gift while putting themselves in an incredibly precarious position. After having gone through the process, I can say without reservation that Donor's are the new present day super hero.
My biggest concern...while I am a big proponent of transplant, I worry that the system is not paying enough attention to the donor. It seems there are very few studies being performed on the future health and longevity of the donor...it's almost like what you don't know won't hurt you. I can't find any documented proof of acute renal failure affecting the donor post surgery...is that because it hasn't happened before or is it because the hospitals aren't making the information public. I know that must sound like a conspiracy theory type comment...but, based on our experience...it really does feel like there is not enough attention being paid to the donor's health.
Thank you all for taking the time to respond...much appreciated at a very stressful time.
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Dear bradwitt
I'm glad to hear you are both improving.
I 100% agree that donor health is ignored. My transplant center only "checked up" with me once, at 6 months. When I asked when I should come in, they wouldn't schedule an appointment. When I called to report a health issue a year later (they did not call me) I was pretty mcuh dismissed again. Then at two years, nothing. Of course they don't know of any adverse effects on donors - they don't know anything about the donors as there's no follow-up!
I don't regret my donation, not for a second, but am unhappy about the lack of follow-up.
You'll need to be your own advocate going forward.
Love, elephant
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Thanks Elephant, may I ask what what your post surgery health issue was?
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Dear bradwitt & brother,
I am sorry that your brother had such a severe adverse event due to his living kidney donation to you.
You and your brother's experience with your physicians distresses me a great deal. (I am a 72 year old Family Physician about 100 K south of you [Bellingham, WA, USA] -- and a non-directed living kidney donor.)
As a member of the medical profession, I apologize for the kind of non-transparent, non-helpful, care your brother received regarding that adverse event. It was bad enough to have a medical or surgical complication of his donation to you; the quality of *caring* they then gave him should have been much better. :-)
To begin to answer some of your (and his) questions, I searched the medical database I subscribe to, "UpToDate"; the information there about the outcomes of people with acute renal failure (ARF) was last updated March 2013. I also searched information from the UNOS (United Network of Organ Sharing, USA) database; UNOS data are pretty complete and reliable for this issue.
1] The UNOS data show that ARF immediately following donor nephrectomy is extremely rare.
2] I cannot tell why it happened, from what you wrote. IF your brother wants to know what happened and why, your brother needs to get a copy of his entire medical and surgical records (including the operative report and all lab tests), and have a nephrologist, or knowledgeable Family Doctor or Nurse Practitioner, read them and "translate" them for him, as Sherri & others posted. Any of the professionals I list should be able to "translate" them. Doing so is important for my next point.
3] ARF is caused by several different causes. Your brother's prognosis depends in part on knowing the specific cause of the ARF. By "prognosis," I mean determining his likely future medical course, that is, his long term outcome or impact on his future health.
4] The best provider to understand your brother's likely prognosis is a nephrologist. As I understand BC's (British Columbia's) medical care system, if he wants "one-stop" medical care, then, it would be best for his primary care provider to refer him to a nephrologist, both to "translate" those medical and surgical records into plain English to describe what happened, and then to discuss his prognosis.
5] Doctors used to believe that ARF did not produce any adverse long-term consequences. Several good research reports about long-term outcomes of ARF, however, now show that some people who had ARF are at higher risk to develop chronic kidney disease. That higher risk is influenced by several factors, including older age (60+ or 65+ especially), duration of the decrease in kidney function (e.g., greater than 3 months), and others. UpToDate did not report any study or information about ARF that occurred in otherwise healthy people (like your brother, who was healthy enough to donate) due to the surgery to remove one kidney. I doubt anyone has reasonable information about that.
6] If I had suffered ARF due to my donation, I would have wanted to learn about my prognosis -- and even more important, learn from my nephrologist what I could do to minimize the chance that I would experience a long-term adverse outcome. It is your brother's choice, of course.
7] I, and LDO Online, do know some general things to maximize one's health and minimize the chance of developing chronic kidney disease, and to slow its speed of development if it does start. Here is part of what I wrote about prevention of CKD in a prior post on LDO a while ago titled "GFR vs. Creatinine Clearance," that Sherri just "bumped" to near the top on the list. I recommended that "all LKDs, including I, should continue to worry, no matter what our eGFR or mGFR is -- but worry productively. Why do I recommend that all us LKDs be worried? God, evolution, or God through evolution [your choice], gave us 2 kidneys for a reason. The second kidney is NOT "superfluous." It is a kidney in reserve, in case something bad happens to one kidney, or chronic kidney disease starts. (If people with chronic kidney disease have 2 kidneys, the disease will progress more slowly.) We LKDs gave away our "reserve kidney" to someone else. We LKDs thus should worry productively, about what we can do to take good care of our one kidney.
"What should productive worry focus on? Making sure our one kidney is happy and healthy, by adopting a lifestyle that follows what Donna and so many others have preached here on LDO:
* measure blood pressure and blood glucose at least yearly;
* follow a healthy lifestyle even more carefully than before donating (= low salt, low fat, diet; moderate exercise 30 min/day 5 days a week);
* treat "pre- high blood pressure" (systolic 130+ or diastolic 80+) with more life-style adjustment (more intense diet, exercise, etc.), and if needed medicines -- to prevent actual high blood pressure;
* if overweight, prevent type 2 diabetes with more life-style adjustment (more intense diet, exercise, etc.);
* prevent heart attacks, strokes, and blockage of the larger arteries to the kidneys by keeping cholesterol levels where they should be by diet, and by medicines if needed;
* if high blood pressure or diabetes does/do develop, treat / manage it/them aggressively with diet, exercise, weight loss, and probably medicines."
I wish and hope for the best for you and especially your brother -- that his ARF resolves completely, and you both live a happy life with complications (although we know you will have to take medicine to prevent rejection).
Since we live so close (at least relatively), separated by only the White Rock - Blaine border crossing, perhaps we could get together, if you like. About once a year I pass by close to your brother, on the way to Maurelle Island (east and north of Campbell River, BC), and perhaps he and I could meet as well.
Bill
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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
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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
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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.
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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?
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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.
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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
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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
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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
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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.
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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
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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.
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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
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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
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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
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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