Organs & Tissues

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2 Heart Transplants by 21 years old

Gratefully my life has been saved multiple times with blood transfusion and 2 heart transplants. I was born January 14 1998, 30 hours after birth I turned blue and couldn't breath very well. The doctors sent me to CHEO from Smith Falls Hospital. At 2 days old I had my first surgery. This was done at CHEO, through an incision under my right arm, a shunt was put in to allow blood flow from my heart get to my lungs. It was then we found out that I was born with what is called Pulmonary Artesia with intact Septum, Coronary Stenosis, Hypo-plastic right Ventricle and when the ductus closed after birth it pinched off the flow to the left pulmonary artery.

At 11 days old, I had my 2nd surgery at CHEO, to surgically remove the ductus and put a patch on my left Pulmonary Artery. Then at 3 weeks old I had my 3rd heart surgery. I was sent to HSC (Sick Kids in Toronto, Hospital for Sick Children). In critical condition, by plane with ICU staff from CHEO. This surgery was because the shunt they put in at 2 days old was to big. HSC surgeons sutured down the side of the shunt by 1mm so it wouldn't put to much pressure on my ailing heart. When I was in Toronto, I also got a blood clot in my leg because of a procedure, and had to then have heparin injection, through an insuflon patch twice a day for 3 months. I was the youngest at the time to use the insuflon patches. I was in a study for the drug called Cliveran, a type of heparin.

At 3 months old, I got to come home for the 1st time. At 8 months old I had my 4th heart surgery in Toronto at Sick kids. Called the Bi-directional Glen. This surgery was done to try and correct some of my heart defects. This surgery didn't go so well…. My heart wouldn't start up off the heart lung machine, and I had a heart attack. Finally after another try my heart started pumping again but it wasn't great. I was then listed for a Heart Transplant, and life support ran beside my bed for a few days in the ICU. I had to be rehabilitated after this surgery I lost a lot of muscle tone, and I couldn't sit up without support and my feet drooped down as well. It was then the doctors took me off the transplant list, because I was slowly improving but I had a very weak heart. I was able to come home from this surgery after 5 weeks.

At 10 months old, on Halloween of 1998, the Heart Transplant team at Toronto Sick Kids listed me for transplant, because I wasn't improving. I got my 1st call for a heart 2 weeks later my mom, dad and me headed to Toronto via privet jet out of Smith falls airport. We got part way there and then the transplant team called to say the new heart was losing function, so we had to come home. We got our 2nd call for a heart in February just 4 months later. We were to head to Toronto by car because it was to foggy to fly and it was freezing rain as well. We left for Toronto at 11pm, and the roads weren't good. We got as far as Oshawa and the Transplant team called to say that the new heart was loosing function again. We got back home at 7am the next morning. There was lots of mixed emotions for my family, because they knew that someone who we didn't know, lost their child who was around the same age as me. I stayed on the transplant list and my heart was slowly failing (heart failure). I waited another year and a half before we got the real call for my heart.

On August 15th, 2000 we were able to fly from Perth Hospital by helicopter. I had my transplant that day. The surgery was an all day surgery, and when it was finished my new heart was having a hard time keeping up with the demands from my weak body. My old heart took up 60% of my chest cavity and crowded my left lung which caused some problems, because I was in heart failure for 2 and a half years. The meds I was on dilated the blood vessels around my heart to make it easier for my old heart to pump. When I got this new heart it couldn't keep up, and I had to go back on life support and I was listed for another heart, a bridge heart. I lost most of my muscle tone again, and I had to have dialysis. My hair was falling out and my skin was breaking down in places like behind my ear. After a few days the doctors tried again to remove life support and slowly, slowly my heart rested long enough to start up, with support to keep up with the demands that my body required. The heart function wasn't great but good enough so the doctors took me off of the transplant list. Slowly and surely with lots of TLC, and therapy I recovered! I came home after 2 months from my transplant. Over the course of 4 years I had several trips to Toronto for check ups, Biopsies, and Angiograms to make sure I wouldn't reject my heart. I take anti-rejection drugs everyday.

After I turned 18 years old, I transferred to the Ottawa Heart Institute, and for my lung specialist, I go the Ottawa General.Growing up I was immunosuppressed, meaning my immune system isn’t strong and I can get sick easier than “ healthy” people. I had caught virus’s that made me very sick but was always able to come out of it. I got to live a life as normal as I could, until March of 2017. For a while I had been feeling tired but I just pushed it off as I’m in college, working and having a social life. After work one weekend I decided to go to the hospital as I was having chest and abdominal pains. I figured I would just need antibiotics and be home in a few hours. I was very wrong. I ended up in the ICU. No one could figure out what was wrong. They were thinking of a gallbladder attack or an appendix attack. I was only getting sicker while waiting for a bed in Ottawa at the Heart Institute. Eventually my mom drove me to the Ottawa Heart Institute because she could see I was declining quickly. With in hours of getting to the heart institute I was rushed into the Operating Room to have an Impella put in which was placed into the left side of my heart to help the heart out and take some of the workload of my ailing heart. My heart function had dropped dramatically and this was our only hope. After 7 days on this heart life support I was able to have this machine removed and was given several medicinal drugs to help support my ailing heart. I then spent 6 1/2 weeks in the ICU at the Heart Institute. Then spent another 3 1/2 weeks upstairs recuperating. Doctors believe what caused all of this was antibodies AMR (antibody mediated rejection) which were attacking my heart. We still have no idea where they came from but they are there and were told that I will always need treatments to keep them at bay. These treatments are like cancer treatments in IV drug form. This left my heart very weak and not feeling good most of the time. I was able to come home on May 12, 2017. I went into right sided heart failure, but the left side had recovered pretty good but not perfect. The transplant team decided that this heart won't last for a long time so on June 15, 2017 I was placed on the transplant list for another heart. Because of my small body size, blood type (O+) and my antibodies it left me with only a 15% of finding a new perfect working heart. The wait was long. It was hard to watch my body decline in countless ways and me not being able to do anything about it. Over the wait I was hospitalized a few times. Some were because of fluid issues. If I had too much salt in my diet I would retain fluid because my heart was too weak to pump it off. The average person has 2000 mg of salt intake a day. My mom had to cut my sodium back to 500 - 800 mg a day. In trying to buy me some more time to last the wait I had tried a heart support drug called milrinone. Because I have already had a previous transplant it left me almost no options. When I had tried this drug earlier in my wait it had worked but the catch was that I would have to live in the hospital until I got my new heart. I wasn’t ready for that yet, I wanted to live at home for as long as I could. Most patients could have a pic line and have home care but with me it was too big of a risk for infection because of how compromised my immune system was. I had tried the milrinone again in September 2018, this time I packed up my life and moved into the hospital, by this time the drug actually made me feel worse with in hours of having it I was walking around my room to not being able to lift my head off the pillow. After 4 days of trying to stick it out I returned home. I was able to remain at home throughout my whole wait. January was my last admission, this was for fluid issues. During my hospitalization, I had found out that my transplant bestie Sam had passed away waiting for her 2nd heart transplant. When returning home, home care was set up and weekly visits began. I was able to get a walker to help keep my mobility up.

On April 7th, we were heading to a Vigil service for my transplant mentor Larissa who had suddenly passed away a few days prior. Before getting to the end of my road We got the call we have had been waiting for. When getting to the hospital we were told again how tough of a transplant this would be, for the last time I heard every risk and possible thing that could go wrong. I went into the operating room for my transplant at midnight and was out the next morning with my new heart. Waking up I noticed an immediate change although I wasn’t feeling 100% anything was better the pain I had been use to. I was in shock for months. I had literally gone from living hour by hour somedays to now being able to recover and have a chance at a future. 3 days after my transplant I walked out of the ICU on my way to the floor. This is unheard of, even for heart surgeries no one walks out of the ICU ever! With in 11 days I was back home. The only hiccup in my recovery was an infection in my incision and chest tube holes. There were tons of appointments, the first 3 months after being very busy. It takes about a full year from transplant to heal and feel good again. Because of all my previous surgeries my healing and pain takes longer.