Part One--The Background
When Jay was 19 years old, he got viral cardiomyapathy and needed a heart transplant. In May of 1996 Jay made a trip to the Boundary Waters with some High School friends. Upon his return he started feeling ill. He had what seemed to be an upper respiratory infection or even possibly asthma. He was treated at the local clinic and sent on his way. He didn't get better. He returned to the doctor and was given an asthma inhaler. Things got so bad that he started coughing up blood. He was finally taken to the ER and it was discovered in a chest x-ray that his heart was enlarged to four sizes of a normal male heart. He was taken by ambulance to United Hospital in St. Paul. It was there that they said he was gravely ill and that a heart transplant was likely in his future. They couldn't say if that would be imminently or in the future. They stabilized him and ultimately released him as they couldn't do much for him. They said he should seek a second opinion. Jay's parents decided to seek that second opinion at Mayo Clinic in Rochester.
Part Two--Mayo Clinic
Jay was seen at Mayo Clinic and quickly worked up for a future heart transplant. He was put back into the hospital immediately as his doctor said that his ejection fraction rate was the lowest he'd ever seen and that if he went home that weekend, "he'd die." Jay was not happy about being put back into the hospital and he refused all visitors. He was in the hospital for a week or so and stabilized again. He was released on July 5, 1996. He went home for a few days but quickly declined again. On July 12th he was taken back to the Nfld ER because things had gotten so bad. They took him by ambulance back to Rochester. (July 12th is his last memory until he woke up after his transplant.) Jay was put in intensive care and only immediate family was allowed to see him. On July 14th things had taken such a turn for the worse that they needed to put a heart pump in his chest to sustain his heart until he'd get a new one. That was the day he was placed on the heart transplant list. He was in such a grave condition that he was registered as a 1A recipient. That meant he was top priority.
Part Three--The Wait
As Jay was being wheeled into the OR to have the LVAD pump put in, he arrested just outside the OR. It was the scariest news we'd ever received. Because he'd arrested, it was likely that he had had a stroke. Depending on how bad that stroke was, it could derail the possibility for a transplant. Jay laid in an induced coma for 20 days waiting for a transplant. On the evening of August 1st, a heart became available. They needed to determine if Jay was "with it" enough to be worthy of the heart (meaning had the stroke destroyed anything too major). They brought him out of the sedation and asked him some questions. He passed the test! Jay has memory of his (favorite) nurse, Paul, calling his parents at the transplant house to tell them a heart was available and to come back to the hospital!
Part Four--The Transplant--August 2, 1996
They prepped Jay for surgery. It took longer than expected because they needed to clean out his chest cavity which was filled with blood clots. All in all, he did well and made it through the transplant without any problems! He was heavily sedated and medicated with immunosuppressents so his body wouldn't reject his heart. He didn't really "wake up" out of the sedation/surgery funk until Sunday August 4th. That's when his memory picks up. He woke up able to breathe! However, he was extremely weak and had lost a lot of weight. I believe he was down to 147 at his lowest!
Part Five--Recovery
As Jay started to recover from his transplant, it was discovered that he had had a stroke that affected the left side of his body. He had weakness especially in his arm/hand. That meant that he'd have to do rehab after he was released from ICU. Jay was unlike most transplant recipients. Usually they're much older; they are awake to receive "the call," and they've usually been sick and weak for a long time. Jay was not a "typical" patient. His decline was rapid, so when he awoke, he was like: "What? I had a heart transplant?" Yes, he could breathe better, but he had a long road ahead of him to feel like he had in early May of 1996 when he was playing baseball for SCSU.
I believe Jay was in the hospital about 3-4 weeks post transplant. The final week was in a rehab unit where he rehabbed his arm after his stroke. (Today he is barely affected by the stroke. He has numbness in his fingers, but most people don't even notice. It was a small price to pay for his life.) After he got out of the hospital, he had to stay in the Rochester area for 3 months. Post transplant appointments are numerous. He had many heart biopsies to check for rejection and many blood appts and doctor's appts. Jay did so well that he was released home to Nfld earlier than that three month mark. It was maybe closer to two months? (As time passes, the memories fade!)
Jay recovered more at home, working out with a good friend who still lived in town. He was able to return to St. Cloud to college in the spring (January) just six months after his transplant! That came with challenges as he still had doctor's appts and he was much more susceptible to illness, but it was the start to his new life!
Part Six--Years Post Transplant
Fifteen years have passed and Jay is one lucky guy. He was blessed with an amazing match as he's been VERY healthy and takes a very minimal amount of medication. He's had a few bumps in the road (PTLD, skin cancer, bilateral iritis, infertility) but all minor incidents in the scheme of things! Now Jay goes for a blood draw every three months. He goes for an echo cardiogram 2x per year and an annual work up in August to make sure everything is good. (And they check everything!) Every year the doctors stare at him in amazement! We are so blessed!
