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Friday, June 20, 2014

Another form of rejection emerged this week

For me as a relatively new human heart transplant recipient I find the adage "there's always one more s.o.b. than you counted on" is painfully true.

I'm back in the U of MN hospital for a stab at overcoming a suspected organ rejection episode. 

The newly (for me) type of rejection is biopsy negative rejection or BNR for short. In overview, BNR has to do with antibodies in the blood that have developed and may be silently attacking my new heart. It is thought to be rare, but has been picking up investigative attention.

As the name suggests, BNR falls in between the lines.  Although my biopsy procedure at the U of MN is designed to weed out the two more common rejection forms and reveals those forms, cellular rejection and a limited number of antibody rejection factors.

BNR is one of those grey areas that only a few institutions are actively investigating. The Johns Hopkins University Medical School is one of them.  I've learned there are hundreds and hundreds of antibodies that could show up in the blood.  

The well known ones are identified by a staining method, which produces a colored microscope slide that is interpreted by a pathologist.  But not that many antibodies that impact rejection are well known and those that are are caught by the current process at U of MN's lab.

So I'm generalizing when I say that the learning curve for heart transplant patients has some hidden elements that apparently surface on a need to know basis. 

Well this week, it became my need to know. My ejection fraction seemed to mysteriously drop from 60-65 per cent efficiency to 40-45 per cent efficiency. What happened? I feel good. What's causing the problem.

Turns out that my transplant cardiologist is doing research on BNR with her mentor at Cedars Sinai Hospital in L.A.  Cedars performs more heart transplants than any other U.S. transplant center. Eighty have been done this calendar year to date with six in the last week.

That was news to me, but pleasing news. When my doc asked to see a copy of the article in the January 2013 issue of the Journal of Transplantation, she recognized the author as one she's known a long time and is her mentor.  Here's the link. http://www.hindawi.com/journals/jtrans/2013/236720/ 

I'm hopeful that my cardio team will get this sorted out. The Johns Hopkins lab results are not expected for several weeks.  Meanwhile I underwent another right heart (site of the 'new' heart) catheterization for biopsy samples and pressure checks.  It is unusual to order two such procedures in two days but the situation demanded it.

Meanwhile, I'm composing my unaddressed letter to my donor family to thank them for my gift of life from their selfless family member.  I wanted to wait a year.  

Federal law bars hospitals from identifying participants in a transplant procedure without their permission.  I write first.  Maybe I'll get a response.

At any rate I'm here, alive and waterproof. This amazing saga continues. Now if I could only catch a fish.


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