My journey started in the year of 2003 when I was pregnant. I was having problems with breathing and the allergist and OBGYN thought it was my asthma. On March 24, 2003, I had to have an emergency C-section due to having heart failure. I was diagnosed with “peripartum cardiomyopathy” and knew I would be on heart meds for the rest of my life.
That brings me to Thanksgiving 2020. I’ve always been a fan of Thanksgiving because of turkey, mashed potatoes and gravy, etc. Unfortunately for this Thanksgiving, I didn’t have an appetite. That proceeded for several weeks where my family had to eat in a different room because I couldn’t stand the sight or smell of food. In December, I felt something odd in my stomach and told my husband I was going to have it checked.
I made an appointment with the GI doctor and he started the process to have tests. I also went to the OBGYN to see if she could find anything, no luck. One day, I went to see the GI doctor for a follow-up and he told me to see my allergist. Well, luckily that same day, I saw a cardiologist PA, who said it was my heart. He knew of a doctor that was on the heart transplant team and said he would get me in to see her. I didn’t have energy, was very tired and was in pain a lot. I didn’t eat and had gained a lot of weight. I actually had to buy the next size up for pants. I knew it was “a shell of me” but didn’t know why. The transplant doctor checked me out shortly after and then admitted me to the hospital. It turned out that I was on such good heart meds for my peripartum cardiomyopathy that they were actually masking my symptoms.
While in the hospital, I lost 40 pounds of water and was told I needed a heart transplant. During the journey, I was the one that kept it together for my family and friends by telling jokes, being a smart Alec, staying positive, and smiling. I wasn’t going to let myself think I wasn’t going to make it.
I’m almost 11 months out now and doing well. It’s been challenging being a new transplant during a pandemic since I’m a very social person. And not hugging family or friends because of me being autoimmune suppressed or not knowing their COVID vaccine status is hard for me. I’d like to think that if my transplant happened a couple years before COVID, I wouldn’t be as cautious as I am now, but that was not the hand I was dealt.
Some of the post-transplant challenges I find are that my short term memory is very short and my forgetfulness is even more so than before. I don’t let this deter me from conversations. I let my family and friends know and mentioned this on my blog. And my cravings go in waves. If I didn’t know any better, I’d think I was pregnant.
What I feel very helpful is having a “transplant family,” and what I mean by that is people that have gone through the process and can relate. I met one of my transplant brothers online in a support group, my transplant sister through a friend, and another transplant brother through the same friend. I can ask them questions/share crazy ideas with them and they don’t judge. They remember what it’s like. I also told my doctor at my 10 month follow-up that my mind was playing tricks on me. I was thinking “did the donor die in peace? Was he/she able to say ‘I love you’ and forgive people before dying?” My doctor said “you are the sunlight that came from a tragedy.” I also feel that having books written by fellow transplants is very helpful.
In the future, once the COVID numbers are down or there’s no pandemic anymore, I hope to take a road trip and meet my transplant family. I also hope people use me as a resource and teaching tool, whether it be asking me questions, reading my blog, etc.
I’m very fortunate to have a second chance at living. I’m glad my loved ones are very involved and supportive. I wouldn’t have gotten through this without them or my faith.