Hope For a Heart: Getting Stronger Everyday!

Just an update for all of you - I am still home and feeling great! I have so much energy throughout the days. My last clinic appointment was Monday, where they checked all my labs and everything looked good, except my Prograf level (which is one of the immunosuppressant medications) was high, but they weren't going to lower the dose because it wasn't as high as on Friday at my biopsy so that means it is coming down. I will have labs drawn again tomorrow, where they will decide if they need to lower the dose. Prograf and Prednisone both make me so shaky. That's really one of the only issues right now is how shaky I am and how hard it is to do anything - especially anything detailed - with my hands shaking how much they do!

I am continuing cardiac rehab and making progress each time! They are shooting for three times per week, but this is only my second week of going. They start me very slow, but either increase time or intensity each session. Their goal is to slowly work up to 30 minutes of high-intensity cardio each time; and it is so crazy to think I will be running by the time cardiac rehab is over! I've never really been able to run my entire life. I couldn't do sports as a kid because of my heart problems, I never took PE in school because of my heart problems, and even just trying to be a normal kid and run and play outside often times ended with a trip in an ambulance. Then, being at a children's hospital for my first transplant, they don't do cardiac rehab because I think they just figure that you're a kid, you're going to be out and active and running around getting in the exercise that you need. But, I was never really taught the correct way to work out after a transplant and what I could and couldn't do. An interesting thing about a heart transplant is the nerves are all cut to take out the heart, and never reconnected. So, a normal person can just start running and stop - I can't. The warm up and cool down is vital in order to not pass out; because I don't have those nerves that the normal person's brain uses to tell the heart it needs to speed up. It is like a delayed response. Sometimes even in the mornings, I have to sit up in bed for a few minutes before I can get out of bed so that I don't get dizzy and risk falling - again, because of the nerves.

I'm sure 30 minutes sounds like nothing to some of you, but when you go from laying in a hospital bed and maybe being able to do a couple laps around the floor you're on for several weeks to trying to work out, you really have to start very slowly. I lost almost all of my muscle mass (not like I had a lot, because I never was able to work out) in my legs from being in the hospital. And, I'm still not cleared to use my arms at all yet...but once I am, I'm determined to get these arms strong!

Today I did 15 minutes on the NuStep machine, which is basically a step/stair machine that you can increase the resistance on. Right now, I'm on a level 3 which I definitely feel in my legs and it gets to be hard work! Then I did 17 minutes on the treadmill, starting at a 1% grade and a speed of 2, and increasing to a 1.5% grade at a speed of 2.5. On the treadmill, I feel like I can do so much more and go faster, but they don't want me to overdo it this early so we just increase each time. I always feel great with increasing the speed, but anytime they increase the grade and make it walking uphill, even the tiniest bit, makes it so much harder for me. They are very happy with my progress and impressed with how much I'm doing this early into rehab. They told me I must have gotten an athlete's heart with how great I am doing this soon after starting! I loved hearing that. Who knows - maybe I'm a runner after all? Maybe I'll get to that point and enjoy it and start running every day! So crazy to think about after living my whole life not being able to do this sort of thing. I am determined to get and keep this heart as strong and healthy as possible!