Part of that process, the very first meeting with the Transplant doctor and the pre-transplant education classes, is where you learn what having a Lung Transplant REALLY means; what it's really like. Frankly, they basically scare you to death telling you what to expect before, during and after. I will never forget the very first words the doctor said to me at that first meeting. "While transplant can be a life saving operation, make no mistake, you are trading one disease state for another."
Trading one disease state for another. Those words ring in my ears to this very day. And the doctor did not lie. He was right to warn me what to expect, especially since I hate surprises anyway. I knew what could happen, what to expect. I was prepared for the possible negative issues that could come up post transplant. Or so I thought.
I keep telling myself, it's not like they didn't warn me. I should not be thrown or upset when I get told I'm battling to keep my kidneys functioning and trying to avoid kidney failure. After three rounds of IV Saline infusions to treat elevated kidney function levels, I should be taking it in stride. It's not like they didn't warn me. Easier said than done it turns out.
I should be prepared when I get told that my White Blood Cell count is way too low, even for a transplant patient. We were told ahead of time that the anti-rejection medications might affect our kidneys and our white blood count. So I shouldn't be surprised. It's not like they didn't warn me. Again, easier said than done.
The fatigue, headaches, tremors, getting back in some sort of physical shape, dealing with post surgical pain nearly a year after surgery that you find out may take a year to a year and a half - or never - to go away.
I keep telling myself how much I have for which to be grateful. I am still alive and a year ago that was no sure thing. I have been blessed with the Gift of Life from someone who believed in organ donation and saved my life. I am happy about that.
But then the medications start to do what they do, and all the side effects you are warned about start rearing their ugly head. Emotional swings. And as time goes by, reality sets in about dealing with some of the more serious side effects.
Being a transplant patient means we must endure a lot. Lots of pain, lots of blood tests, lots of being poked and prodded. A Bronchoscopy every 3 months for the first year post transplant.
IV Infusions multiple times. Now injections to help raise my white blood count to an appropriate level and hope in the meantime I don't catch anything from anyone. I am more at risk now than I was post transplant.
I should take it all in stride. Again, easier said than done. I trust my Transplant Team. They know their stuff and are monitoring me and taking action when appropriate. But there are those moments that just scare you as much as you were scared waiting to see if you'd get your transplant. I have faith most of the time. But then sometimes when I realize the challenges I am still facing, it hits me. And I get scared and anxious.
I am positive and grateful most of the time. But then when the next thing comes up that is serious enough it needs treating, anxiety sets in. Then I'll remember how knowledgeable and talented my Transplant Team is and I feel better. I ask lots of questions and the answers make sense. Then late at night, I worry.
It's a roller coaster ride for sure. So many ups and downs, twists and turns. And it's a ride I'm not allowed to get off. I have to learn to live on the roller coaster.
It's not like they didn't warn me. But sometimes knowing what could happen and then being faced with what IS happening is a whole different ballgame. But I'm working on it. Trying to be strong and learn to roll with the punches. I'm not very good at it, but I'm trying.