Step on up to the roller coaster. There are so many ups and downs that I'd swear I've boarded the biggest roller coaster out there. The good news is my lung has been doing fantastic so far. Every test and Bronchoscopy and culture we do, to check it, comes out great. I am told my lung function is fantastic and that's hugely important! Wheeee! The roller coaster just went down a steep drop with the good news.
But then there are the side effects from all the medications I must take for the rest of my life. All transplant patients must take immunosuppressants to prevent organ rejection. As the doctors explained, our bodies will NEVER, that's NEVER, accept the transplanted organ. Without the anti-rejection medications, our bodies would attack the organ because it thinks it's an invasive thing there to do us harm not save our lives. So immunosuppressants are going to be part of my life forever. I knew that too; they explained all this. But as that roller coaster heads up the steep climb to the top, problems with side effects from those immunosuppressants start to pop up. For me, it has been liver and kidney issues. We managed to get my liver function stabilized, but my kidneys are not cooperating.
I am told the lab reports show that I am dehydrated. I am shocked because I've been drinking about 64 oz. of water a day! They tell me to drink another bottle! Seriously?! I don't think there are enough hours in the day to drink that much water! Plus with my Interstitial Cystitis disease, my bladder is not enjoying this one little bit.
It's hard not to worry about kidney failure as it's a common problem for transplant patients, many of whom end up on dialysis and then needing a kidney transplant. I'd seriously like to avoid that. I am told by my team that I am nowhere near that yet and they will tell me when I need to worry if it even gets to that. I have blood tests coming up in about a week and we'll see how my kidneys are doing since the last test. I'm hoping they are at least stable and not any worse. They will check them again when I see the Transplant Team in July. So they are monitoring me. But it's hard not to be anxious, but I am working on it. I trust my team and they know what they are doing. So I close my eyes and hold on tight as the roller coaster makes its way up and down and around.
Then there's my physical rehab. I am working so hard on my physical rehabilitation. I was in a wheelchair and on oxygen for over a year, so I was completely deconditioned. By the time I finally got my transplant, I could not stand without assistance or even walk without a walker. Forget about stairs completely. So to get back in shape was going to take a huge commitment on my part and a lot of hard work. It also wasn't going to happen overnight.
I am working so hard at it. It began with in-home physical therapy until I was strong enough to begin going to out patient rehab. Out patient rehab was twice a week for 12 weeks. When you begin rehab you are required to do a 6 Minute Walk Test (I've also done these for the Transplant Team; before my transplant I could barely walk 100 ft.). They test your oxygen saturation during the test and your blood pressure. When I started back to Rehab after my transplant I was able to walk 684 ft. which at the time was a big deal! When I completed my 12 weeks of Rehab, I had to repeat the 6 Minute Walk and on my final 6 minute walk I was able to walk 1,337 ft.!!!! I was so excited by the improvement! So another big downhill on the roller coaster as I can see the progress that I am making.
Now I am on my own for my rehab and must be dedicated to keeping up with my exercise. If you follow me on Facebook, you will often see posts about my workouts and how I am doing. It is HARD work, let me tell you. There are many days I wish I could skip it and just sit in my chair and be lazy. But I cannot. I promised the Transplant Team that if I got a lung, I would do everything I was supposed to do to take care of this great Gift of Life! So that's what keeps me going. Knowing I must do all I can to take care of this precious gift.
I am making good progress when I walk or use the treadmill or bike at our Fitness Center. However, the stairs in our house up to my room are still like climbing Mt. Everest to ME. When I reach the top I am totally out of breath and need to sit down. Stairs, really no matter where, still do me in. This is the roller coaster making its way up the steepest climb on the ride. I feel I have made no progress at all when it comes to climbing stairs! It's frustrating. I have an app on my iPhone that tracks things like climbing stairs, how far I walk etc. So I carry it with me all over the house so I know how many times I've climbed the stairs in one day. Often it's as many as 10 times up and down. And yet I still struggle every single time I must climb them. Will it EVER get easier?!?!
My wound (the part of the incision from my surgery that did not close) is still not completely closed. My Mother still has to scrub it every day and put on a clean bandage. That hurts like the devil. It hurts, really, all the time. The whole incision still hurts, although part of it is just numb. When oh when will this heal and the pain at least begin to dissipate?!?!
These are the ups and downs of the roller coaster ride that is being a Transplant patient. Nothing comes easy and I must remind myself every day that I am here; I am alive thanks to the ultimate Gift of Life given to me by an anonymous stranger. So I keep going, and keep fighting. One must learn to take the not so good with the good.
So, I got on the roller coaster and I'm hanging on for dear life. I always hated roller coasters; never could ride them as they make me sick. So this feels a lot like that. I don't want to be on it; the ups and downs are not fun. But they ARE part of the deal when you become a Transplant Patient.
Oh, and I can never get off the roller coaster. It's like Groundhog Day; it just keeps repeating itself over and over and I must keep up my efforts to stay on it. This is hard, but it's worth the effort. And that's what I keep reminding myself as I climb those stairs!