First I’d like to applaud Ava for her efforts to help others in need, I was fortunate enough to meet her just a few weeks ago, approx 2 weeks before I got the “wonderful news”.
June of 2009 I had a complete health work up including heart scans, artery checks ect I was turning 49 years old and my wife convinced me to be checked over for any possible issues. I was declared healthy as a horse, no heart or circulatory issues, slightly elevated cholesterol but no medication was prescribed just a few adjustments to my diet.
October of 09 I was working hard at opening a new business that was slated to open on October 23rd. I was working 16 hours a day getting ready. I was feeling a bit tired but thought it was from the work, I stated having some issues with breathing and after a few days went to my family Doc, he listened to my lungs and initially thought I had pneumonia. He wrote a script for anti-biotic and then just to be safe had me get some x-rays and blood tests run before I left for work, 45 minutes later my life as I knew it changed drastically. My doctor called and told me that I needed to get my wife and meet him at the ER…… I said why? He said get there now, they are expecting you and I’ll meet you there. When we got to the ER he told us that the x-rays and blood work showed indications of possible serious heart trouble, further testing began, my heart was seriously enlarged and my BNP (measurement of fluid build up in the body) was off the chart. Official diagnosis, congestive heart failure brought on by “idiopathic cardiomyopathy” (we still don’t know the cause, best guess is that a virus attacked my heart) They found me to be in A-Fib for long runs at a time. I was fitted for an external portable defibrillator to wear 24/7 in case the A-Fib turned into V-Tach and I might have a fatal arrhythmia I would be shocked. Testing continued over the next 4-6 weeks and I got the business open, I was actually feeling “fine” but the Dr’s were saying that the condition was rapidly declining, the A-Fib runs were lasting longer and longer and medications didn’t seem to help, I received several electro cardio versions, (electrical shocks to try to shock the heart back to normal rhythm) they wouldn’t hold.
Dec 15 2009 my cardiologist advised that what needed to be done immediately was to have an ICD, (pace maker/defibrillator) installed along with an AV node oblation and that I would need to then start the process of being evaluated for a transplant. Needless to say I was shocked, I really didn’t feel “bad” and was working full time at the newly opened bakery, and I just had to say wait a minute ! how can this be ? I asked for a second opinion which my Docs understood, they were able to get me into the MAYO at Rochester on Dec 26 2009. MAYO did a bunch of testing over a couple days and confirmed what the Docs at home had found. I had the ICD surgery on Jan 13 2010. When I woke up from this surgery my life had changed, with my heart rate now at a normal pace and with an ejection fraction of only 12 – 15% , I could barely function, just a few steps would wear me out. WOW ! I thought this can’t be happening. I began the transplant evaluation process, it was determined that I would be a good candidate but during the process they discovered that I had sarcoidosis in my lungs. This brought about serious concern that my lungs would not survive a transplant operation. Mean while my overall condition continued to decline, talk of needing an LVAD to help my heart started, but again the sarcoidosis would not allow for surgery. The goal became to get the sarcoid under control enough to allow for the LVAD implantation. Luckily by Nov 2010 my lungs were improved enough that they were willing to try the LVAD operation, by this time I was committed to the process knowing that if I could survive the LVAD implantation it would help my heart enough that my kidneys and liver could stay healthy enough to undergo a heart transplant when possible. The LVAD was installed Nov 8, I was in the hospital for 29 days but did recover from the surgery and the “wait” began. Life was certainly different, I had to sell the business and my job became remaining healthy enough to get a heart if I was lucky enough to. Life on LVAD is not a picnic, but this amazing technology saved my life, you learn to “cope” with the inconveniences.
In August 2011 I began to have some intermittent problems with the LVAD and had to hospitalized for weeks at a time, and just as I’d show improvement things would go bad again. Dec 30 2011 it was determined that a clot had developed in the LVAD, talk began of possibly replacing the pump but the decision was to permanently place me in the hospital on a constant IV Heprin drip to try to get me to transplant ASAP. I was admitted to St. Mary’s at Mayo Dec 30 2011 and the long agonizing wait started, my wonderful wife and children kept my spirits up as best they could.
THE MIRACLE ! – at 7:00 pm May 10th 2012 the charge nurse came into my room and sat on the bed and said she had something to ask me, I said sure…why? She told me they just got word that there was a heart available for me…….I can not describe the various emotions that hit, relief was a big one. I called my wife to give her the news, she was a 3 ½ drive away so she and my daughter immediately headed to Rochester. The process unfolded over the next several hours, prepping. My wife arrived and at at 1:00 am May 11 2012 I entered the OR, and at approx 3:00 am the transplant surgeon received word from the procurement team that the heart was viable and a go. They started the 2 hour process of removing the LVAD and at approx 5:00 am the heart arrived and they began to install it. I was wheeled into the ICU at about 11:00 am May 11 2012, new heart installed, that was three weeks ago today, my start at a second chance that had been praying for. When I was awoken from surgery I immediately knew I was on the road to recovery !
My eternal gratitude goes to the family who gave me this gift of life, I hope to some day be able to thank them in person. At times I feel sad thinking of their loss, yet then rejoice knowing that their gift means so much to me and my family, I pray each day for their comfort and blessings from God for the choice they were brave enough to make.
I had already begun advocating for people to become organ donors and plan to continue those efforts by helping people such as Ava. If we all band together and raise awareness of the need many more lives could be saved.
To end I can’t say enough about the compassionate wonderful care I received from all the doctors and nurses involved, and to friends who really stepped up to help my family during this process, I hope God blesses them all, I know I will thank him every day for the wonderful gift I have received.