Going to my Heart Failure Doctor Today

I have an appointment with my heart failure specialist today and it is causing me to think back and look forward.  The last appointment was on August 4, 2011, which is the longest I have gone between appointments since I was diagnosed in July of 2004. 

I am very grateful to be alive for these past ten years since I flat-lined on the table getting my first pacemaker due to three degree heart block in February of 2003.  

I have seen my son graduate from high school, college, and get married.  I have also  been able to be there for my daughter through her many hospitalizations for bi-polar and to see her finally get stable these last two years.  I met and married my wife at my advanced age because I still had the gift of existence.

Nonetheless, since the terrible ordeal in 2008 when the surgeon broke my left ventricle pacemaker lead while replacing a recalled pacemaker, coping with life has been even worse.  The result of that mistake was a few weeks later the dyssynchrony  this caused in my heart beat resulted in  my heart going into ventricular tachycardia and causing my ICD to fire.  This actually occurred 4 times before I was schedule to get the lead replaced.

When I went into tachycardia, I fell down where I was, passed out, and then felt the ICD fire like a punch to the chest.  One of the times I was walking down the street and just passed out and fell into some poor shopkeeper’s door, frightening her and her customers.  I apologized profusely once the ICD fired and I came back to consciousness and my wife helped me walk the rest of the way back to the apartment we were staying in at the time.  It was mostly painless, as I just lost all consciousness immediately.

They eventually did replace the lead but it took me a year to recover, and even then, I have never been the same since.  That year caused long term damage manifested by even more muscle loss and a change in my body chemistry.  I could not work out nearly like I had been able to before that year and travelling for business became much more difficult.

So now I am wondering why there have been no real breakthroughs after nine years of this disease.  Stem cell research was occurring in 2004 when I was diagnosed and it still seems to have made very little progress after 9 years.

I guess another part of this is I am facing a pacemaker replacement the second half of this year because my battery is wearing down.  After my last experience in 2008, you might can imagine how I feel about it.

I communicate with many other heart failure patients and most of them are just miserable, so I know I am not alone, but it seems that medicine is letting us down and focusing on other, more high profile chronic diseases.

I am grateful for the gift of existence, but sometimes I just need to vent.  Sorry If I offend.