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Living Kidney Donors Health & Well-Being 10 Years Later

The Swiss are the only country to have a true living donor registry*. Launched for kidney donors in April 1993, it provides physicals annually then biannually  for the length of kidney donor’s life. And no, the living donor does not pay for the exams.

Recently, a German living kidney donor (and more importantly, advocate and activist), was kind enough to send me a report on the registry’s data through 2010 (Thiel published in 2005.), which included info from kidney donors 10 or more years after their donation. My understanding is that ThIel died and the remaining registry physicians were reluctant to release this longer-term data to the public. The German TV magazine REPORT MAINZ (SWR) was the first to publish these results, which makes them pretty righteous dudes, in my opinion.

 

The 2005 study noted a 10% drop-out rate due to living abroad (outside of Switzerland), and another 5% from lack of a current address.. By 2005, 9 kidney donors had died – 4 from malignancies, 2 traffic accidents, 1 heart attack, 1 stroke, and 1 suicide.  As of 2010, 32 living kidney donor were dead, but the article gave no further details.

 

Below is a chart of the health problems seen in Swiss living kidney donors ten years out. I’ve done my best to translate not only the German into English but German medical terms into American ones. It was quite a task, I assure you. According to official stats, Switzerland had a total of approximately 350 living kidney donors between 1993-1999, the years from which this 10-year data originated.

 

%

# affected Kidney Donors Total LKDs w/ data Complication
49.1 107 218 Cardiovascular diseases (heart+vessel+high BP)
47.2 103 218 Hypertension/high blood pressure
45.2 104 230 Chronic Kidney Disease Stage 3-4: GFR 30-59
16.7 38 227 Micro-albuminia >2mg (aka proteinuria)
6.2 14 227 Micro-albuminia >5mg
4.7 10 214 Heart and Vascular Disease
2.8 6 214 Heart Disease (3-Coronary; 2-Arrythmia; 1-hypertensive)
2.8 6 214 Malignancies (cancer) but survived
2.3 5 214 Urinary Tract Infections aka UTIs
2.3 5 214 Psychological Problems
2.2 4 184 Chronic Fatigue
1.9 4 214 Depression
1.9 4 214 Vascular Disease (atherosclerosis; aortic abcess)
1.4 3 215 Pain in the scar area
1.4 3 215 Hernia
.9 2 214 Abdominal Weakness
.5 1 214 Incisional Discomfort (late occurring)
.4 1 214 GFR 15-29 aka CKD Stage V

 

Just to recap:

49.1% of Switzerland’s living kidney donors have cardiovascular disease.

47.2% have high blood pressure

45.2% have Chronic Kidney Disease Stage 3 or Stage 4.

 

When was the last time you saw these risks mentioned by any American transplant center or transplant industry related site? In fact, not so long ago, didn’t a certain center’s marketing department go out of their way to assure folks that living kidney donors had no such increased cardiovascular risk? Yet here we are with a second European country’s data revealing the exact opposite.

 

When it comes down to who to believe, consider this:

– All countries in Europe have universal health care (The Swiss and the Norwegian are govt run). The US does not.

– Europeans have longer lifespans and less chronic health problems than Americans.

– The Swiss have been following their living kidney donors since 1993. Meanwhile, over a decade later, US transplant centers still refuse to know whether their living kidney donors are alive or dead a mere two years out from donation.

– A cardiologist expressed skepticism about Garg’s no-increased-cardiovascular-risk conclusion. Not surprising, he’s also European.

 

I’m going with the folks across the pond.

 

 

*Not only does the US not have a registry for living donors, a group of people whose purpose is to obtain transplants for recipients have twisted the meaning of the word by calling their organization the ‘national kidney registry’.

 

 

ETA 6-28-2014: If you’d like to read more about this data, Dr. Thiel and the “missing” 2011 report from the Swiss Registry, click here. The group and website are in German; if you use Chrome as your browser, it will ask if you wish to translate. Yes, yes you do.

Permanent link to this article: http://livingdonorsarepeopletoo.com/living-kidney-donors-health-well-being-10-years-later/

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  1. Jodie Johns

    I would not have changed a thing…My husband and I both gave our kidneys to our boys.
    However, I would have appreciated guidelines on how to better take care of my heart/BP & mental health.
    I still think my local nephrology dept. should offer newsletters to inform LKD’s of new risks and what individuals can do to improve and maintain good renal health.

    This is an outrage and one more time US healthcare system disappoints.

  2. Leah

    You make a lot of assumptions by just reading one paper about a very small population of the Swiss and you did not take into consideration many things

    1. What is the guidelines by which the Swiss use to determine who is or is not a healthy donor? Can they be overweight – smokers- cage fighters -etc.. and still be eligible to donate or do they have the same guidelines the US has?
    2. In your article you stated that 49.1% of all LKD in Switzerland report having cardiovascular disease after 10 years. How does this compare to the general population? Is this a slight increase or a major increase from the norm?
    3. The only health indicator we have when we look at these numbers is the fact that these people have given away a kidney. What are the other factors to look at? Is everyone who donated over a certain age? Are they of a certain socioeconomically class? Are there any other factors or facts about these people that could up their risks for certain diseases even with a kidney? Causation doesn’t imply correlation.

    Furthermore, the fact that Europeans live longer and have healthier lives cannot be necessarily attributed to just the type of health care they have. All around, Europeans (especially the Swiss) are healthier because they eat less, exercise more, eat better types of foods and work less than we do. They have a healthier societal structure geared more towards family, good food and active lives.

    One more thing I want to add/ask is where the number in the chart came from. The first statement said that the numbers were from 350 participants but the chart only has UP TO 230 and all the numbers in the column are different. The top of the column reads “Total LKD’s w/ Data” – does that mean that there’s only data on 230 out of the 350 donors and out of those 230, 49.1% of them have CKD? What about the other 70?
    I understand that some of the LKD dropped out or died but even if you add up all the number of people who have died or dropped out, it doesn’t add up.

  3. LDPeopleToo

    Actually it’s not one paper – it’s the country’s govt sponsored living donor registry. It really doesn’t get any more comprehensive than that. And of course it’s a ‘small population’, Switzerland only has a population of 8 million people (as opposed to the US’ 300+ million). The Swiss aren’t harvesting kidneys from 6000 of their citizenry every year like the US.

    The points of the living kidney donation evaluation are to determine that A. an individual is healthy enough to donate a kidney, and B. the donated kidney will provide enough function for a recipient. Consequently, every country that performs living kidney donor transplants claims that those individuals who are approved as living kidney donors are ‘healthier’ than the general population. This declaration seems to be universal, no matter the country or its evaluation and selection policies. But since you brought it up, it’s important to remember that until the OPTN meeting earlier this month, the US had no standards for living donor evaluation, selection, treatment or follow-up. We only had voluntary guidelines. So if anyone is to be criticized for taking kidneys from smokers, the obese, etc, it’s the US and not Switzerland. < - See Poggio's 2009 analysis of 30 years of LKDs to see how the demographics have changed. If we accept the statement that living kidney donors are healthier than the general population then it follows that LKDs should have lower risk and incidence of hypertension, cardiac events and other chronic health issues. In order for living kidney donation to be considered ethical and not harming the living donor, this needs to remain true throughout the living kidney donor's life. It doesn't matter how old a person was when they donate or what socioeconomic class they belong to, the evaluation deemed them 'healthy' and 'low risk'. While I'm sure what you meant was correlation does not mean causation (and not the other way around), in this case, the evidence is not specious. We know that people with all stages of CKD (GFR<60) are considered the highest risk group for cardiovascular disease. We also know that a 10% reduction in GFR has been proven to significantly increase cardiovascular mortality and morbidity* - as an independent risk factor (so again, all those other variables you tossed out to muddy the water - they don't matter). LKDs lose 30-40% of their pre-donation GFR. Sure, Garg recently tried to say LKDs weren’t at higher risk for cardiovascular problems (within the first ten years) even if they did have increased blood pressure, but a cardiologist publicly called him out that if that was the case, LKDs would be the ONLY population who did not experience greater morbidity and mortality due to increased hypertension. In other words, highly unlikely.

    At no point did I say that universal health care is the ONLY reason why Europeans live longer and have healthier lives. The point is that they do – period – and if nearly half of their living kidney donors are experiencing major health issues ten years out, then US living kidney donors are in for a world of hurt.

    ***

    350 is the total number of living kidney donors in Switzerland during that time period. If we look at the first row of the chart, we know 107 LKDs are affected cardiovascular disease out of 218 LKDs on whom information on cardiovascular disease was gathered. So, the third column refers to each row specifically.

    *See Risks page on Living Donor 101 for references.

  4. Leah

    Um. Ok.
    The US transplant community is “harvesting” organs? If I didn’t know any better I would think that you were completely biased against the US living donor process and the information you present might be one sided.

    So this is a report generated by information gathered by the Swiss Government based off of information gathered from donors. Just because it’s government doesn’t mean it’s scientifically sound. We don’t know what methods the government used to collect this data and we don’t know what kind of measures the government there takes to ensure this information is accurate. You make misinformed claims about the data provided solely to suit your rhetoric.

    You claim “every country that performs living kidney donor transplants claims that those individuals who are approved as living kidney donors are ‘healthier’ than the general population”. I can’t even begin to wrap my mind around that statement. You can’t even know that to be true. And even if every county did claim that, it’s a moot point because different countries have different standards for health. If I drank as much as whats considered normal in, say, France, I would not be eligible to donate a kidney in Michigan

    You’re third paragraph is just plain false. For example, at Henry Ford Hospital in Detroit, there is a special donor program for people over the age of 70 or overweight at the time of their donor evaluation.
    You seem to be under the impression that people are being told that if they’re eligible to donate a kidney than they are healthier than the rest of the population AND will remain so after they donate. You’ve donated a kidney, so that might be your experience, and maybe the experience of others, but when I research donating a kidney I find 0 information to support that assertion. If anything I find pages and pages of risks associated with donation.

    As for that graph. I still don’t understand how you can come up with the numbers you have. There are 350 people asked, 218 were asked if they had cardiovascular disease, and 107 of them said yes. What about the other 182? Why weren’t they asked? Was it because there was no reason to ask the rest. If we’re making assumptions here, we could assume that the reason those specific 218 LKD’s were asked about their heart health was because in the 10 years since their surgery, they had some sort of cardiac episode and out of the 218 who had cardiac episodes, half of them were diagnosed with cardiovascular disease. If that’s the case than we come up with a rate of 30.6% of LKD’s who, after 10 years are diagnosed with the disease. Is that the average? (and of course you can retort with “Kidney donors are supposed to be healthier”, but again, I can’t argue that because that’s not what I’ve found to be true with the research I’ve done).

    I’m sorry I can’t go through and reply to every point you’ve made, you are obviously more invested demonizing the living donor process than I am in defending it.

  5. LDPeopleToo

    Actually, ‘harvest’ is a term used by the medical community. In fact, in “Organ Donation: Opportunties for Action” published in 2007, there’s a chart at the bottom of page 4 of Recommended Terms where they suggest not using phrases such as ‘cadaver donor’, ‘life support’, ‘brain death’ and yes HARVEST, because “Terms that have seem descriptive or useful in the past are now being reconsidered in favor of terms that are more sensitive to the donor family…”. So if the term is upsetting, your gripe is with the medical industry who coined it, not me.

    Since there seems to be a communication lapse, let me reiterate: *I* didn’t come up with any numbers; the Swiss govt did. They reported having cardiac (or whatever) information on however-many kidney donors. How or why they didn’t have every teensy bit of data on every single, solitary one of their LKDs is something you’ll need to ask them. I made no ‘assumptions’ on how they collected their data, or even analysis; I simply reported it. I could’ve excluded the raw numbers entirely, leading folks to believe the percentages were based on 100% of the country’s living kidney donors, but I didn’t because I believe in being as transparent as possible. (and PS. If you read this post, you’ll discover that the Swiss researchers are quite angry the data has been released to the public. Not because it isn’t true, but because it makes them look bad. After all, their paychecks depend on people continuing to donate too. Bad outcomes = less people willing to donate a kidney)

    I have to wonder if you’re as critical of data originating from US transplant centers or OPTN as you are the Swiss data simply because it says something you don’t like. In 2006, Ommen et al analyzed all existing studies on living donors and concluded:

    Virtually all studies of long-term outcomes in donors are retrospective, many with large losses to follow-up, and therefore are subject to selection bias. Most studies have small sample sizes and are underpowered to detect clinically meaningful differences between donors and comparison groups. Many studies compare donors with the general population, but donors are screened to be healthier than the general population and this may not be a valid comparison group.

    That means anything prior to 2006 can’t be used to bolster your pro-LD point.

    As for the studies since…Well in 2009, OPTN’s Living Donor Data Task Force found OPTN’s own short-term (1-2 yrs) living donor database to be ‘woefully inadequate’ and ‘useless’ for analysis or research**. This means the Segev study from 2010, which used the OPTN database, is meaningless*. And the 2010 Ibrahim study, which is single-center (see Ommen above), isn’t the proclamation of living kidney donor safety the press release and subsequent media headlines claimed it was.

    Just to reiterate a point made by Ommen: donors are screened to be healthier than the general population. Seconded by Srinivas and Poggio in a July 2012 publication:

    Unlike any other situation in the practice of medicine, living kidney donors undergo extensive evaluation, with the express and central goal of confirming suspected health instead of suspected disease.

    And since you mentioned the French. From July 2011 (emphasis mine):

    The living donors were, long after their donation, in an excellent physical health state according to the SF36 summarized physical score and this especially when they were old as compared to the same age and sex general population. This phenomenon highlights the stringent selection of the potential donors.

    Obviously, you can choose to believe whatever you’d like (and clearly you do), but the folks considered to be experts and professionals don’t agree with you. People determined to be acceptable living kidney donors are not the general population; they are the top percentile. A 70 year might be at a disadvantage compared to a 40 year old, but again, it’s poor research protocol to compare the two (unless age is the point of the study). In fact, a 70 year old LKD has the advantage of not worrying about the long-term consequences of living with one kidney, unlike the 40 year old. When the average onset of end-stage renal disease in the US is 65 years old, the 70 year may be a more ethical choice if the evaluation is done is an appropriate manner. Of course, as you’ve repeatedly pointed out, we have no way of knowing that, do we?

    The only reason any transplant center has a ‘special’ donor program for obese prospective LKDs is to help them lose weight so they can donate the kidney. It’s well-established that 80% of folks who lose significant weight gain it back within 2 years, and 2/3 gain back more than they lost within 4-5 years (I wrote about that here). The only person with more health risks than an obese prospective living kidney donor is an obese person with reduced kidney function and no renal reserve. Think the surgeons or transplant center will be around to deal with that eventuality? 50 years of living donation says it’s highly unlikely.

    ***

    **An ACOT presentation in August 2012 revealed that approximately 35% of LKDs who donated from 7-1-2010 through 6-30-2011 are lost by one year; we have no idea if these people are alive or dead. So the database has not improved.

    *And not just for that reason. It also wasn’t long-term as it claimed, and it used the wrong comparison cohort.

  6. alibaba

    you can look up 2013 Norwgian paper on increased risk (transplant International I think) and also 2014 JAMA paper on same topic in USA.. Both find v.small increased cardiovascular death increase

  7. LDPeopleToo

    I ask that you provide a more specific reference. I’m far too busy to dig through my ever-growing collection of studies or the websites of various journals so you can try to make a point.

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