Rob Has A New Heart

[Linda]

Rob - Welcome home! Linda

[Debbie]

Rob,

Welcome home! I'm so happy for you! Keep chugging along...

I was on vacation when you got home, so I missed the terrific news.

Sending my best to you, Haley, and yours.

Debbie

[Lisa Salberg]

Rob - WELCOME HOME. We have all missed you and hope to end this thread...in fact I am making an executive decision - this thread will end and be locked down WHEN and only when YOU personally respond. I can not think of a more fitting way to end the longest thread in HCMA history.

We are all here for you during your recovery - we look forward to cheering you on every step of the way!!!

Best wishes and big hugs,
Lisa

[NoCrash]

Wow! What a thread--I did get through it all, but it took awhile. I'll accept the honor of closing out the longest thread, so far, on the HCMA board.

I almost don’t know where to begin, except to repeat my thanks for everyone who has been so supportive to my family and me; thanks for everyone’s good thoughts and prayers, and of course thanks to my heart’s donor. Haley is preparing a special thank-you to all the staff at UCLA who were so wonderful.

I also want to express my special thanks to Haley for so many things I can’t even begin to list. I can honestly say that without her I would not still be around this world today. Her blog entries are truly amazing to read (I agree with everyone’s comments in that regard). One of my transplant docs recently told me that she was the most poised family-member he had ever met. He admitted as to how there were things they didn’t really want to come right out and say but that she “caught the drift” anyway. I can only begin to imagine how hard this must have been on her—she’s my “rock”.

I’m tempted to say this “trip” has been a real roller coaster ride, but that’s not truly accurate—the ups and downs haven’t evened out so far. I expected to walk out of the hospital after a week with my new heart; instead I rolled out in a wheel chair after 18 weeks with a new heart and end-stage renal disease (ESRD).

I’m frustrated by my relative lack of strength due to muscle atrophy, the need for a wheelchair and/or walker and the need for on-going hemodialysis (4 days/wk, 4 hours per session). But the good news is that the heart biopsy last Monday was clear and that my new heart is doing GREAT! At least my HCM problem is behind me and I can see past these other problems, even if a kidney transplant is somewhere in my future. (There’s some small chance my kidney(s) will come back on their own but the odds are really against that happening.)

I’ll recap what happened from my perspective (Haley provides much more detail in her blog entries).

After saying “I love you” to my spouse I was wheeled into an OR where I even assisted in my transfer from my gurney to the operating table by sliding myself across. Then I was asleep, really asleep. During this time my basketball-sized old heart had its revenge—it left me bleeding from where it had to be “scraped away” from everything it was stuck-to. I was then ravaged by a couple of nasty infections which caused the docs to throw everything they had into me. (The serious anti-rejection meds and antibiotics probably have something to do with the kidney failure.) Then they closed my chest. I’m told there were a couple of times where “it was close.”

I have a recollection of at some point saying“cut my mustache off” which is something I’d planned to do any way, thinking “new heart, new life, new lip.” I think the pain of the nurses removing the ventilator tape adhesive from my mustache woke me up long enough for me to consent to “the taking of the mustache”. (Since then I’ve had the chance to study my face in the mirror and concluded that I was better off with the fur on my lip hiding part of my face—the naked upper lip is almost gone now.)

The transition from induced coma to wakefulness included hallucinations and paranoia (what were those people filming me for anyway?)
When I “woke up” I was really a mess. I recall hacking my way through pseudomonas AND aspergillus infections in my lungs. I hacked until I thought my lungs would come out, then I hacked some more. I couldn’t move because of muscle atrophy from being immobile in bed for so long and I couldn’t communicate for the longest time because of the tracheotomy. Eventually the hacking subsided and the trache was reduced and then taken out—these things will now be put back into very small memories so I can forget about them again.

Then came “Rehab”. 3 hours a day with therapists. Six weeks of leg strength, arm strength, torso/mid-section strength, transfers in-and-out of a wheelchair, sit-to-stand, stretching, and eventually putting one foot in front of another. After six weeks I could walk down the hallway with a walker and someone following behind with a wheelchair. At that point they were ready to wheel me out the door and I was more than willing to go, too.

There’s so much to do now that I’m home I don’t know when I’ll catch up, if ever. I’ll continue with therapy and walking, etc. until I can get out on a shiny new bicycle I’ve been promised. Also, I can’t wait until I can step aboard our boat,”Intuition”, and go sailing again. The motorcycle will come later if I completely lose my senses. There’s also so much to do with the Shea and Connor—our 8-year old daughter has never seen me when I was at 100%--I want to do some serious catching-up on actvities foregone!

Cheers,
Rob