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.

First "Heart-aversary"

A year ago June 8, I received a heart transplant. Not exactly breaking news, right?

Despite some formidable setbacks both expected and unexpected, I survived the first year.  Thrived might be a better word. In my age group, the first year survival rate can range up to 80 per cent.  

Sounds great, except for the 20 out of 100 who don't see their first "heart-aversary."

From the edge of a crypt in early 2010, through 38 months with a left ventricular assist device to a walking, talking, fly fishing 70 year old. 

I am most fortunate.  

Not all of those in need of a new heart get one.  First, there are about 2,000 heart transplants a year nationwide. Second, the donor ranks are thin. Marking "donor" on your driver's license doesn't mean your heart, liver, or kidneys--for example--will be taken if you die in a car accident.

Anecdotally, as I renewed my driver's license last week, I overheard six people in line with me say they did not want to be listed as donors. 

My wife and I chose "donor." 

So in my anecdote, 75 per cent of my admittedly skewed sample said no to being a donor. It was not a particularly busy time at the licensing facility, but if the situation I encountered is in any way  representative, and we'll never know if it is from a one sample  experience, organ donation is not at the top of the "to do" list of things we can control. 

That's a shame.  Donating an organ is a gift of life for recipients.

I am reliably informed that only about one in one hundred deaths occur under hospital conditions that are a necessary precursor to organ donation and eventual transplant.  

The donor organs simply are not collected at the scene of a vehicle crash, shooting, stabbing, drowning, or a victim of smoke inhalation. Hospital life support is required. 

The point is that without designated donors there would be no transplants, no lives saved, no hope. None. Period. Game over.

Meanwhile, my friend with the fractured LVAD driveline, has been moved from Abbott-Northwestern Hospital in Minneapolis to Cedars Sinai Hospital in Los Angeles. Without a new heart, it is likely he won't make it. 

There is hope at Cedars Sinai, the largest and most technically advanced heart transplant center in the country, doing 120 heart transplants per year and being able to deal with issues with anti-bodies and rare blood types. His doctors believe the move is necessary to save his life. 

Godspeed, friend.