Twitter, kidney transplants and misinformation--Updated

Last week Indiana University (@IU_Health) live-tweeted a kidney transplant. They claimed it was the first unrelated-living-donor transplant Live tweeted.

It was dramatic and there was a lot of buzz among the kidney folk on Twitter about this. You can read some of the coverage here. It was exciting but it tasted too much like a publicity stunt for my taste. The counter argument, of course, is that raising the profile of living unrelated donors increases the likelihood that people will come forth and donate and I should just swallow my distaste and be supportive of the outreach effort.

We need more living donors.

We need more deceased donors.

We need more kidney donors.

As part of the Twitter publicity campaign, IU_health tweeted various facts about transplant. This one seemed wrong to me:

One every twenty minutes

Three an hour

Seventy-two a day

26,280 deaths a year 

That's a lot

That's too many

When I first read the tweet I read it as "1 American dies every 20 minutes waiting for a kidney transplant." Twenty-six thousand deaths out of the ninety-thousand people on the wait list seemed like a very high mortality rate, higher than the dialysis morality rate. A quick check in the USRDS Atlas revealed the mortality rate to be only 7% on the wait list.

When I went back and read the tweet again I saw that they were talking about people waiting for all transplants. This seemed more than a bit disingenuous because when we encourage people to become living donors we are only talking about kidney transplants (in 2008 there were only 250 living partial liver transplants). I assume that IU is not encouraging living donors for hearts and lungs. 

In 2008 there was only 4,638 deaths among people waiting for a kidney transplant. For all organs it was only 7,182 deaths. These numbers are from Health Resources and Services Administration. Similar data can be found in USRDS Atlas Volume 2 Chapter 7 (PDF).

We need more kidney donors and social media is a great tool to unlock the thousands of spare kidneys Americans carry around with them but the great need does not justify spreading lies and misinformation.

Literally minutes after I posted this I received the following tweet:

Kudos for IU Health in coming clean. Also Hat tip to Sunny Gill, one of our first year fellows for finding the HRSA website.

This is a very cool website

Endobible arranges a database of endocrine diseases in widely searchable manner. They lead physicians through the diagnosis, work-up and treatment of most endocrine diseases. They skip diabetes, but outside of that is looks awesome. Nice reminder that endocrine is more than diabetes.

I perused the Conn's Syndrome section (primary hyperaldosteronism). The history and physical were great. The work-up was less impressive. They don't advise saline loading and they still recommend stopping ACEi and beta-blockers before performing a Aldo Renin Ratio. Good luck keeping a resistant hypertension patient from stroking while you wash all those drugs out for 4 weeks.

Overall a clever design and great resource.

Lupus nephritis, MMF and maintenance therapy

I love it when I have a clinical question and I'm able to find a well executed study that's exactly fits my question. It's like fitting the last piece of a puzzle.

A year ago I was referred a patient with heavy proteinuria. Initial assessment showed 7 grams of proteinuria, a cholesterol over 300, edema and an albumin of 0.7. Classic nephrotic syndrome.

Before he returned for his first follow-up appointment disaster struck. He developed chest pain and shortness of breath from a pulmonary embolism. This was a patient my age, two kids, professional. Looking at him was like looking in the mirror, but for the grace of G-d that could be me sitting in that exam chair.

black arrow points to tubuloreticular inclusions
seen in SLE and HIV.

After a month of anti-coagulation I was able to convince pulmonology and hematology to reverse the Coumadin for a few hours to get a kidney biopsy. It was membranous nephropathy with endothelial tubuloreticular inclusions. Along with consistent ANA and DS DNA we made a diagnosis of SLE WHO V and began mycophenolate mofetil. We titrated the MMF up to 3g a day and after 6 months he was in remission.

After a few months of sub nephrotic proteinuria, a normal albumin and a year of anti-coagulation he stopped his Coumadin. He has weaned his prednisone to 10 mg every other day and stopped the alendronate and rosuvastatin. Now he wants to get off the mycophenolate. Given how frightening the PE was, my preference would be to treat him forever. I casually surveyed my peers and got answers as varied as:

• I never lower the MMF, every time I do the patient relapses
• I taper it off after 6 months of remission

When I consulted the literature to look into this I found this paper:

Bingo. They maintained patients on MMF for 3 years at 2 grams a day with excellent results. 

Importantly there were no deaths, only 10% had serious infections and no cases of cancer occurred with the mycophenolate. 

Looks like an acceptably benign therapy with good outcomes.

Aside: While looking up how to spell endothelial tubuloreticular inclusions, I came across this paper (how I love you so Google) showing a significant number of patients with endothelial tubuloreticular inclusions that did not have lupus or HIV. I was taught that these EM findings were essentially pathognomonic for lupus. Interesting.

UPDATE: a second trial, the MAINTAIN trial (PDF), showed almost identical results. Included for completeness. 

Bet he has Gitelman's syndrome

This post on BuzzFeed makes me so glad I never suffered the indignity of on-line dating. My favorite is this guy:

What are the odds he has Bartter's or Gitelman's. Every patient I have encountered with Bartter's or Gitelman's has admitted to drinking pickle juice, so it's sensitive but I don't know how common this is among norms so its specificity has yet to be determined.