Part 2: The Great Adventure

Part 2 (9/94) of A Human Heart Story, a five-part book about one man's heart transplant, from initial diagnosis through recovery, by Jim Gleason, reborn on Oct. 19th, 1994. Note: taken from the Gleason Gazette family newsletter with editing for general readership.

September 14, 1994

"It's been a long week..." Jay (my wife) and I said out loud - and it was only Wednesday morning - what a week! Monday we saw our local cardiologist for swelling of the ankles - a sign the heart is not getting rid of fluid the way it should - and she confirmed the root of the problem. It seemed so long ago that the cardiomyopathy had (July '92) had led to pneumonia (12/93) and Congestive Heart Failure (1/94) - but these were overcome in stride. This weakened heart of mine was now deteriorating further. The MUGA scan (an x-ray video taping of the pumping heart) done Friday indicated it was now down from the 22% to only 15% effective pumping (vs. a norm of 60 to 80%). The viral cardiomyopathy that resulted from a simple virus attacking the pumping muscle of the heart back in 1992, now showed signs that the aggressive drug program I was on just wasn't doing the trick any more. It was time to see the specialists down at the Univ of PA for a possible heart transplant. Wow, do those words sound strange when you first hear them - and they were talking about me of all people. It was recommended that I cease employment immediately - an action that was surprisingly easy to just do (just in case you were wondering). It was serious enough that the transplant team agreed to meet with us the very next day, Tuesday, just enough time for the family support team to rush into action. Of course Jay, Mary, Mike and Sue were the local support - and I can't say enough for how they handled the surprising news. Betsy sent her personal best team, g'mom and uncle Bill, and we were ready to go down into the big city of Philadelphia and see what they would say there.

To say things moved fast would be an understatement. Meeting with the team resulted in the following set of facts:

• my condition was critical
• testing would begin immediately to see if I was a good transplant candidate (early indications are that I would be)
• heart transplant technology has come a long way since the steroid control of rejection was perfected (?) in 1983 putting us into the "new age" of transplants
• results indicate survival rates of 85% through the 1st year, with 70% making it to year 5 and 70% through year 10 (the longest they have data for in this new age
• if I did nothing, my activity levels would quickly move to little (if any), and I certainly would not survive 5 years! Wow!! a sobering thought like that makes the whole decision much easier to make in the face of a team that exudes competence and confidence!
• testing would begin right away, with a final 3-day set of in hospital tests scheduled for the following week
• assuming all went well, I would move into the hospital right after that to wait for a donor heart while they built up my body for the ordeal it was to undergo (shades of little Bill, huh?)

(Trivia: over 20,000 patients under the age of 65 await heart transplants today, with only 2000 donors becoming available annually - many more over the age of 65 also wait. If you aren't already a registered organ donor, how about considering it. You wouldn't be using that organ for anything anyway.)

Asking how long a wait to expect (we anticipated a long wait - maybe a year of more...) gave the surprising answer that it could take as little as 24 hours (Wow, Gov. Casey move over...) - the longest was for a rare blood type match of 4 months, with typical being 4 weeks. My type A+ was expected to be an easy match, so sooner was the expectation.

What happened next was testing while we were still at the hospital followed by a whirlwind of phone calls to family and friends. Networks of researchers responded with articles and facts that were very encouraging. The prayer chains were unbelievable - from many different faiths and congregations. Wills were written, priests seen for anointing of the sick, finances put in order, work materials turned over to a super supporting Unisys team of friends, insurance companies contacted, etc. And like I said up front, it was only going into Wednesday morning!

What comes next we will have to wait and see. Everybody asks: "How do you feel about all this Jim?" Very positive, as it turns out. It does seem like quite an exciting adventure in front of us all. As the patient, I feel I have it the best with those around me going through the really tough worrying part. This story will be continued over coming weeks, but prognosis is very encouraging with a return to "my old self" life style a promise once the new heart is in place (assuming all goes well, of course). Recent weeks of being very tired and weak make one appreciate the "old self" much more. The promise of a new Jim really does seem too good to be true. When my dad died of Congestive Heart Failure (CHF) at the same age back in 1970 (he was born with a congenital heart problem), these options didn't exist. We really do live in an age of miracles - just ask Jake who continues his valiant fight with lukemia at the age of 26!

Keep those prayers and letters coming and I'll continue this story in future issues of the Gleason Gazette - hopefully for many years to come.

Once in the Hospital of the University of Pennsylvania (IHUP), uncle Jim found himself in the company of two other patients awaiting the arrival of new hearts. It was suggested that the trio should have a name and thus the call went out to our family puzzle solvers to come up with a suitable name. Uncle Bill and Jake responded immediately with the following which was developed into certificates and presented to the "Bodies Eagerly Awaiting Transplant Surgery" (i.e., BEATS - get it?). Below is a picture of the three Heart Beats, Ron, John & Jim, along with their escort nurses, Sally and Gloria (what a pair of "can-do" nuts!), during an outing to the heliport on top of the hospital where the Penn Star helicopter awaits orders to fly out and retrieve us new hearts. The Philadelphia skyline and the blade/door of the helicopter outline the picture . . .

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