Humbling and Frustrating by Charlie Meason

26July2007:  I was filling up my car when my phone rang.  The voice on the other end informed me that he was from Stanford Medical Center, and that they had a heart that the thought was a match; could I come in to have it installed?  It had only been 6 days since I was placed on the transplant list.  We were not ready financially or emotionally, but this was the offer I couldn't refuse.  I had been deteriorating for several years-muscle mass and strength were low, hair falling out, ascites from the accumulated fluids, and skin the color of old putty. The surgery went well.  When I was lucid, my wife informed me that I had had a stroke during surgery.  Indeed, my left side was completely flaccid.  After 3 weeks or so I was discharged.  The use of my left side was slowly coming back, I could walk with the use of a cane.  After about 2 weeks, I began weakening again, and required maximum assistance just to stand.  I had developed a systemic infection and was readmitted for IV therapy.  I was hospitalized another 3 weeks until able to leave, but would require IV antibiotics for about 6 months.  About 3 weeks later, extreme edema set in because the liver was having difficulty recovering from the load my old heart had placed on it. I had gained over 30 lbs during this period and was so weak I could barely walk. I was readmitted a second time for another 3 weeks to get the fluid off.  Ambulation became less and less frequent due to weakness and feeling awful.  Because of the stroke,and my extreme weakness, my back essentially became unable to support my weight--the stroke began to cause mild contractures; I lost 3 inches in height and began to suffer extreme back pain.  Adding to this the steroid component of my med regimen caused mild psychosis, and the very common steroid induced diabetes and tremors.  With this combination and the chest protocol that limits use of the upper body, I was pretty much immobile.  I am also very particular about how things are done (very independent).  My wife assures me that the nurses were drawing straws to see who was stuck with me.  The complete loss of control is both humbling and frustrating.  I discharged after another 3 weeks sans fluid, and weighing a hefty 117 lbs, down from 160+.  I could not stand up straight because of weakness and pain.  My poor wife was killing herself attempting to care for me-it was another 2 or 3 weeks before I could get up without assistance.  Even after discharging home from the hospital-provided housing and completing the minimal amount of therapy the insurance would pay for.  During this time simple things like showering were an exhausting adventure- I had to sit to shower and dress, and used much of my day sleeping.  The diabetes resolved as I healed. I have been to a personal trainer 3 times weekly to regain some of my strength, the stroke has minor residual presence, with continued mild contractures and weakness, as well as differences in size.  The heart works GREAT, no rejection or CAD thus far. I can actually exercise without breathlessness, and am applying to start an RN to BSN program with designs on returning to work.  I don't know if I would do it again.  The toll the last 17months have taken on my wife has been hard for her to recover from.  I thank God, my wife, and the stellar people at Stanford for being able to write this.