I am going to start with something I have been asked. Am I getting a lung transplant right now? The answer is NO. I am on hold. Because you trade one disease for another the CF and lung trx teams want to ensure that I get as much mileage out of my lungs as possible. Once you get a trx a new countdown begins on how long the new lungs last. Right now no one has lived over 25 years. That means I will not see my 70th birthday. So you can see the dilemma. Now you also don’t just go up to Edmonton and get new lungs. New lungs need to come from a suitable cadaver. Someone who is brain dead. Now since you can’t predict when someone with your blood type and body size will die, you, as the recipient, will be waiting. Some wait for up to 2 years and others a month.
This is a waiting game. I will return to Calgary on the 21st and for me its a waiting game to get sicker in order to be activated and another waiting game for the new lungs. Not very comforting but it is my reality. I could curl up in a hole and just wait to die or I take each day as a gift and live it. Right now I see really sick people around me and I see people post transplant doing well and some not doing so well. This is NOT a cure. After trx I have to contend with medication side effects, cancer, acute rejection, chronic rejection, kidney and/or liver failure all while still dealing with the CF that is in my body (my new lungs will NOT have CF)
Knowing all this my perspective is very different than many. I have to take care of me. That may mean that I cant visit with friends because I am tired or someone has a cold. I cant do any activities that require lots of exercise, even with my oxygen, life is a struggle. It means I cant just meet someone for coffee without getting meds done etc. Right now in Edmonton the cold weather is very difficult because its harder to breathe in the cold and I have to wear heavy coats and boots which also makes just walking more difficult, not to mention the energy used to stay warm.
I know that some people will never understand that and some people think I am up here on vacation. I can assure you I am not on vacation. Everyday I am frustrated, scared, tired, worried, mad, and wish for some kind of relief. My life is physically hard to live. I am out of my comfort zone here and just getting done what I have to do.
I know that I have lots to be thankful for and I am but right now being constantly reminded that the end of my life is coming closer everyday that I walk into that hospital, I cringe.
I am grateful that I have the finances to make this stay as comfortable as possible for me and also being able to bring Miss California. I cant imagine having to struggle with bills and all this crap to do here.
What gets me through right now is Cali. She always distracts me from the current situation I am in. She’s been amazing. Without her I forget to laugh. (My dear family don’t think you aren’t helping,you are. Its just different). Every morning without fail my Cali lays at my feet while I start meds. That I can always a count on.
I also know that this whole process is hard on family. I get it. But lets be honest,they do not have to deal with this mentally. Their job for me is to stay strong and healthy so as I can count on them when the tides turn. If my family isn’t healthy than they are no good to me. I can’t take care of me and them. They know this.
Now all that being said, how the heck do you get to 45 with your own lungs when most patients get a trx as early as their 20’s if not their teens? well my answer is, you work your ass off. Try to do the least amount of damage through your rebel years, cause lets face it-we all go through a phase in our life when we are pissed off and the best way to tell CF to eff off is to not take care of yourself. Counter productive yes- but it happens to all of us.
Yes CF’ers are living longer and that is due to new medication and treatments. But if you as the patient are not compliant, do not go to check ups, refuse hospital stays and just ignore your disease well than you wont last long. This disease requires a huge amount of work and commitment. Just organizing the days meds, getting dressed and showered, doing some physio and trying to go to work or school is more than full time. At some point you will not be able to work because just breathing will be your full time job. I retired at 25. it was the best thing I ever did. At that point I was74lbs and literally circling the drain. I had a huge fork in my road at that time, I had to get a feeding tube, something I was fighting to not get for 2 years. I put myself in jeopardy out of pure ego and denial. After God took the wheel I have managed to live the last 2 decades with much accomplishment, impact and inspiration. My books not done but the next few chapters may be the worst ones to come followed by a great ending.
Only time and my determination will tell.