The story of my Heart Transplant and heart failure journey

I am a blessed Heart Transplant Recipient!

In early 2011 I experienced a major heart attack, learning that the right side of my heart had completely failed when the electrical pathway was severed. I had spent the previous 10+ years dealing with chronic pulmonary issues which resulted in COPD. Most of the medical professionals discounted heart failure in part due to my age. (The question as to which came first, pulmonary failure or heart failure, is yet to be determined.) But after living another seven years in heart failure I was given a second chance at life as a Heart Transplant recipient.

First, let me start with some medical background on my family and I. Heart disease is all to common, especially in my father’s side where it can almost be called a family tradition. My mother’s side too has heart disease, although not as common. Diabetes, high blood pressure and thyroid issues are common. Yes genetics can be brutal! We only can deal with the cards we are dealt!

In mid 2018 after yet another emergency room visit at Cape Canaveral Hospital (Dr. Goodfellow and Dr. Perez, both fantastic cardiologists who kept me going through the years), I was sent to the Florida Hospital Transplant Institute (now AdventHealth Transplant Institute) where the medical team over the course of weeks stabilized my heart, lung, and kidney failure. It was at that point I underwent my first major surgery; open heart surgery to received a Left Ventricle Assist Device. (LVAD for short.) I was not a candidate for a heart transplant because of the lung and kidney failure, so the LVAD was the solution to give me a fighting chance at survival and to maybe qualify for a heart transplant at a later time and possibly a lung transplant.

So what is an LVAD? It is purely a mechanical heart pump, and in my case was placed to give my left ventricle a break after working so hard for so many years to pull the weight for the failed right ventricle. My left ventricle was simply tired and was ready to call it quits! The LVAD is battery powered, through external batteries. The HeartMate III was experimental at the time but was chosen because it was designed to pump in a manner that does not damage blood cells, where the previous model had complications.

After a brutal recovery and way too long spent inside four walls (4 before the LVAD, six after), I was discharged and went home to continue my recovery. (My recovery is covered below where I talk about the next surgery!) Everywhere I went I had to be plugged in! I carried spare battery packs (lithium battery packs to be exact) everywhere I would go. I had to take extreme care to make sure I did not loose battery power because simply, I would die! And the risk of infection! The drive-line from the pump in my chest cavity to the external motor I carried around with me at all times had to be kept clean at all costs. And the physical recovery; not for the faint at heart! Every muscle in my body had atrophy, so it was constant pain as I did everything I could to build up strength again. Walking/standing had become the most painful experience ever! All my life I have issues with my feet and ankles which compounded on top of pain of the surgery.

At this point I believed that I would live the remainder of my life with the heart pump strapped to my body. Since didn’t qualified for a heart transplant mostly due to lung failure, I was just happy to still be alive! But I was blessed yet again! Things changed 4 months after the pump surgery: during one of my visits to the transplant institute, I was qualified for a heart transplant! My lungs had rebound and I was deemed healthy enough to survive the transplant procedure!

After the LVAD surgery I was given an experimental drug designed to help lung failure. A very expensive drug that my insurance would not cover but through the help of the PAN Foundation I was able to received a grant which covered much of the cost. This drum turned out to be highly effective! My lungs begin to function well enough to bring my oxygen level up to an acceptable level.

So at this point, the waiting begins. I make regular clinic visits and undergo several heart catheterization procedures to monitor pressures in my heart and lungs. During on of the visit I was told that I was now a candidate for a heart transplant! And after completing blood work to get the exact blood match (it is more that just blood type!) I again thought I would just continue to live with the pump I had already named strapped to my side. (I can’t even recall the name I had given it!) You hear stories of people waiting for years to receive a donor organ. Who would have thought that while sitting down at lunch a day after my blood test visit I would receive that fateful call: “Are you ready for this?” the voice said! At that moment I was told to get myself to Florida Hospital as a heart match had been made! I call my friends to drive me to Orlando and packed my things. A few hours later I am in the prep room with the surgeon, Dr. Silvestry, who is explaining all of the equipment in the operating room. Life support, dialysis, mechanical lungs… this room is filled with everything the surgical team may need. And the team! Wow, around a dozen people all in their roles ready to go. (Oh and by the way, Dr. Silvestry also performed the LVAD operation.) And then walks in the Anesthesiologist, a profession I admired being it was my grandfather Thompson’s profession! I only vaguely remember this very nice guy because after that point there was not anything to remember! Goodnight Brian! Hope to see you on the other side! 🙂

After an eight hour or so operation I was wheeled out to the critical care unit for cardiac patients to undergo yet again another recovery, but this time with a transplanted heart! The medical teams does not wait long to revive you! The removed the ventilator, and help you up out of bed and stand. Crazy isn’t it! Now granted, my muscles again had atrophy and I would undergo physical therapy again to retrain my body how to move again just life the previous surgery. Back to the pain… wow! Chest, legs, groin, head, everything hurt! Thankfully the nurses in this fine medical facility are really good at their job! They lift you, help you walk, help you eat… I think you get the picture. I have to say that Cardiac nurses are the ultimate in nursing field! A patients recovery really comes from the dedicated nursing staff with you 24/7 during the first few weeks.

My recovery was not so smooth though and I was experiencing organ rejection. It is quite common for the body to reject the organ at the beginning and throughout the first year especially. (After a few years and continued use of anti-rejection medication, the chances of rejection are minimal but still exist.) I had wires and tubes everywhere for weeks. I was released to the intensive care unit after three weeks, but a week later returned to CCU due to rejection. I was also experiencing a Urinary Tract Infection (UTI) which I had been carrying since the last operation but showed it’s face stronger than ever at that point because I was now immuno-compromised. (More on that part later.) After MAJOR antibiotics on top of the strong antibiotics I was already on, the UTI was under control. Another week later I was then once again released to ICU to continue my recovery but I was already so far along that I was given a room in the cardiac ward rather than ICU so I can continue my physical therapy.

Before I could be discharged, I had to show the physical strength needed to live a “normal” life. With great pain, I began walking the halls of the ward. First with help, but only a couple of days later I was on my own. My muscles wre gaining strength but my feet were still in extreme pain. Much of the pain was masked by Prednisone (for rejection) and Acetaminophen. But I was no rookie to the recovery routine. This time I knew what to expect and was determined to work hard.

Lots lots of medication and supplements! I know have to spend the rest of my life becoming goods friends with the local Pharmacist. because an organ transplant recipient must take anti-rejection medication for the rest of their lives! And I mean every 12 hours regardless of what else is happening. You don’t forgot to take your medication, because your body does not forget there is a foreign object even if it is working to keep you alive. Already experiencing kidney failure, these medications continue to torture my kidneys. And thanks to being immuno-compromised, that nasty UTI is still there! Any infection makes a normal person feel sick, but an immuno-compromised person is dramatically impacted with sever symptoms. Infections are now easy to catch, and incredibly hard to deal with.

But life goes on, fortunately for me! Still facing COPD issues, kidney issues, and chronic pain in my entire body. But still going! Dad to day activities are a struggle, focus and memory issues are very real. As I am typing this very post I am struggling to piece together my thoughts and memories of the whole ordeal. I would have easily completed this in minutes five years ago, now this is going on three hours. My hands hurt and don’t seem to remember where the keys are on the keyboard! (LOL!)

Now in my 50’s (Was in my late 40’s when I had the transplant) the struggles are very real. I thank God for being here, and thank him for the blessings I have been given. And I thank the people in my life who have helped me through it all. The entire medical team at AdventHealth, the nurses who took such amazing care of me, the surgeons who literally saved my life, the doctors who stayed with me though the toughest of times even before the surgeries, The LVAD and Transplant Coordinators who are your day to day contacts through it all, and my friends who tirelessly transported me to and from the hospital. And all my family and friends for your love and support.

As a can, I intend to write about the entire experience in detail. I hope this helps others understand the transplant process, and also to know what I have experienced.

I am truly blessed!

Peace and Love!
– Brian