It has been a little over ten months since my transplant and I am doing amazing! All of my biopsies have had great results and each month I am weaned off more medicine. I am down to only taking 6 pills in the morning, 1 in the afternoon and 5 at night. Believe me that is a huge improvement! It has definitely become second nature to weigh myself in the morning, take my pills on time, stay clear of germs, drink lots of water, check my blood pressure on regular basis, etc. Rejection is a huge part of having a transplant and I will be taking rejection medicines for the life of my heart. My body sees my new heart as a foreign object so I take immunosuppressant drugs so my immune system will not fight off my new heart. These meds make my immune system weaker and therefore I can catch a cold or the flu much easier. Getting sick with a transplanted heart can lead to many complications.
I am still on monthly check ups with the doctor, but I don’t have to have a biopsy every month which is incredible! Every other month I have a biopsy and the months I don’t I have an allomap. An allomap is a blood test which tests to see if my heart is experiencing any rejection. The allomap is still an exploratory procedure, but it is much easier and extremely less invasive than a biopsy. I am going to continue having these procedures until 15 months post transplant. Then (if all are still good results), I will have a biopsy only every 3 months. It will eventually go to every 6 months, and then finally I will have a biopsy only once a year for life.
Some people have asked if I feel completely different than I did before. I can honestly tell you I feel amazing in comparison to what I did last year at this time. However, I cannot really tell a difference in my new heart than my heart from let’s say 3 years ago. My doctor said it takes most recipients a year or more to feel completely normal. Not that I feel ill, but I feel tired a lot and just don’t have as much stamina as I would wish. I have also learned from doctors and feeling it myself that transplanted hearts do not react the same as regular hearts. During a transplant surgery all of the nerves are cut around the heart when it is taken out of the body. Some of these nerves may heal, but most of them do not. Therefore, a transplanted heart is much slower to react than a normal heart. For instance, when I jump up to get something, or go up the stairs too quickly I become winded and dizzy because my heart did not react fast enough to get my blood pumping. Or, during the summer when it is really hot a normal heart will speed up letting your body cool itself down. Since my transplanted heart is slower to react I can become extremely hot which makes me short of breath. This goes for working out too. I need a 10-15 minute warm up so my heart adjusts. These are all little things, but it adds up and it keeps me reminded to be careful and respect my most precious gift given to me.
I carry around hand sanitizer with me and keep some in my car. I wash my hands often, especially when I am around dirty or dusty things. I haven’t had the luxury of a pedicure or manicure, for the small chance of an infection. I stay away from food buffets. I wear a mask at the zoo. I stay away from cats and dogs as much as possible. I don’t eat cold veggies from restaurants and stay far away from red meats, grapefruit and raw fish. I stay away from people with a cold or with the flu and if I walk past someone sneezing or coughing you will usually see me cover my mouth and nose, just in case some germs fly my way!
I am finally released to go back to work. I am supposed to take it easy and go slow. My doctors said I may feel like I can jump right into the swing of things, but my body will most likely say something different. With time I can go back full time, but I am excited to get back into the work field again.
I am definitely okay with all the rules I have been given. One thing I will never forget is something my transplant coordinator said to me regarding a transplant. “You are trading one set of problems for another”. I now see how true that statement is. However, I would much rather be dealing with these issues then a life of living ill. I am so very thankful.