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)|
|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|
|1.9||4||214||Vascular Disease (atherosclerosis; aortic abcess)|
|1.4||3||215||Pain in the scar area|
|.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.