NEW BLOG INTRODUCTIION

Hello, my name is Josh and I am starting this blog for myself and to help others living with or supporting those with similar health challenges. I am alive at 51 in spite of having AIDS, end stage heart failure (alive with the help of a bi-ventricular re-synchronizing defibrillator pacemaker and a Left Ventricular Assist Device (LVAD)), anxiety/depression, and most recently diagnosed with Deep Vein Thrombosis (DVT) in my left shoulder. I also am now on Long Term Disability (LTD). My life has been rich, alive, exciting, fast, successful, fulfilling, and blessed by my family and my life partner of 17 years (Don). It also has had its failures, struggles (emotional and otherwise), frivolities, insecurities, poor life practices, and loads of experiences.

The very last item is encompassed by all the others and will be the intent of this blog. I am thankful and blessed to have lived this long and hope the sharing of my thoughts, experiences and desires will help others who have battled similar life issues. I have never really been one to sit and let life go by, but I also have not always grasped what it has to offer with open arms and be thankful. I hope by sharing reflections of my past, present, and thoughts about future life will support and inspire others that staying alive is not just about surviving, but living.

I remember when I asked one of my Dr’s about where we proceed from “here”? He responded: “You are there, living a semi-sedentary life is all you can expect.” It felt kind of like the bully at the beach kicking sand in my face and implying “what do you think you are going to do about it!” Well I could sit and stew about it or act like nothing happened which sometimes I do. But, for some reason this was the one time I did not want to take it sitting down. I wanted to do more than just be a couch potato. As I write this I am watching “Gladiator” playing in the background. I hear the line: “death smiles at us all, but all a man can do is smile back”. I hope someday I will be able to say “I did” as I make this journey.

A quick and dirty short medical history:

• Mid 80’s – test positive for HIV – no treatment – asymptomatic
• Early 90’s- T-cells drop below 600-start AZT. Found it intolerable and still work, I was still relatively asymptomatic and needed to work as spouse was in end stage AIDS. Stopped treatment.
• 93 or 94 – T-cells dropped below 400, new treatment options available and my new physician insisted I must start treatment
• 94-2004 – Changed various “drug cocktails” several times in order to maintain 0 viral load and maintain as high a t-cell count as possible (ranging from 100 to 400). My viral load had shot up on several occasions to several hundred thousand. Changing treatments would bring them back to undetectable. In the mean time my T-Cell counts would take a hit (and little did I know so was my heart). I had encountered a couple minor bouts of pneumonia, shingles, chronic bronchitis in the wintertime, and 3 rounds of MRSA (or MERSA, Methicillin Resistant Staphylococcus). I continued to work (and I was a workaholic), but all the time taking its toll. I forget the exact date, but was diagnosed with full blown AIDS. Not wanting to give in yet, I continued working.
• Feb 14, 2005 – diagnosed with pneumocystis pneumonia and cardiomyopathy. Having pneumonia was the blessing as the resulting extras broadly displayed the size of my heart (one could only see the upper lobe of my right lung. After a thallium stress test, it showed my EF @ 10%. My cardiologist was surprised I even made it to 98% of the stress test without keeling over!). He was recommending a pacemaker (and I naively thought I was too young and declined), we pursued with an aggressive drug treatment program. That and a new drug cocktail for AIDS, I improved on all fronts experiencing only a couple of ups and downs for 2 years.
• January 2006 – I developed pneumonia again and was still showing a much enlarged heart. Once I recovered from pneumonia, had only minimal heart related symptoms so continued heart med regimen. At this time with my Dr’s encouraged I filed for disability and am now on long term disability.
• January 2007 – I developed into full heart failure (Class III/IV) and hospitalized. We decided getting a pacemaker was an absolute must. A Medline Biventricular Resynchronizing Defibrillator Pacemaker was implanted in Jan 2007
  Concerto™ CRT-D
  Virtuoso™ ICDs
  Conexus™ Wireless Technology
  I improved considerably for awhile. As Heart Failure is a progressive disease, good health was short lived.
• August 2007, End Stage Heart Failure. I remember little at this point (actually almost nothing). My EF was back down to 10% and the beginnings of secondary organ failure. They were not sure I would survive open heart surgery, but they pursued in spite of this. I actually needed a heart transplant, but was ineligible for a number of factors. During this time the Thorotec Heartmate became FDA approved for destination therapy. I was fitted with Thorotec Heartmate LSE Left Ventricle Assist Device and implanted on August 30, 2007.
• October 17, 2007 after long hospital stay (I had a very difficult post surgery recovery not normally encountered by others), but survive I did and returned home.
• January, 2008 – 1 year anniversary of my Pacemaker and 5 months survival with LVAD. Dr. actually released me for the gym to ease into resistance training). I had been going through physical therapy for the first couple of months and then had started with very light weights at home and light cycling in the neighborhood.
  April 2008 – diagnosed with Deep Vein Thrombosis (DVT) in left shoulder.
  June 2008 – hospitalized with bronchitis, caught it early on and recovered quickly, had everything else checked out while I was there and everything is still functioning as it should be. Released in two days.
  June 14, 2008 – I am healthy, happy, and moving forward with my life. I work out on a regular basis with cardio and resistance training to make the best of my physical health.
  
  This is intended as my intro, I will be writing more soon.
  
  Have a great day!
  
  Josh
  
  P.S. I will reference sites I have found useful along my journey (and there are many). The one which established a turning point in my recovery from heart failure and subsequent LVAD implant was CardiacAthletes.com. This incredible site has given me information, support, and encouragement from its family of members to help move forward with life. There are members from all walks of life from medical professionals to everyday folks. Some, were/are involved competitively to those who just try to start or stay physically healthy through various activities participate. Although I believe I am the only member with both a pacemaker and an LVAD, the members have dealt with all kinds of cardiac issues. This site is setup as not for profit and offered/edited by a physician in England. This site is international with members spanning the globe. Please click on the image below to check it out!