So as I sit here on the eve of the start af my 4 week lung transplant(trx) boot camp I am quite conflicted. I am ready to go and get it done, checked off the list and off my shoulders but on the other hand I have to face my mortality once again. There is nothing good about this next chapter. In fact its the start to the end of the book, my book. Nothing in life is guaranteed. Good health can become bad health in a matter of hours. My story is a bit different. I am going up to boot camp with my lungs in the best shape they can be. The physiotherapy part of boot camp is moot for me. In fact, I hope to teach them some of my skills in programming and managing at such a low lung function. There is an education component which will be good along with meeting the team that is going to try to save my life. Other than that I am stuck up in Edmonton away from my routine, that works and away from my life, thats pretty great. I absolutely hate change especially when I have stable health. Most patients are actively listed the very day they start boot camp. Again, I am an outlier. As my trx doc said to me on Monday, is that he would be shocked if I came back listed. He also said he loses sleep over patients like me.
Now why in God’s name would he lose sleep over patients like me? Well I will tell you. He said there is about 1% of you that on paper should be much sicker but in reality do quite well. The problem with that is that 99% of the time that 1% declines rapidly once they catch something. Like so fast that they need new lungs within weeks. WELL WHAT THE FRACK DOES THAT MEAN FOR ME?!
As much as I wanted to tell him to go pound sand, he has a point. How exactly will I be when I finally lose that last 20% lung function. I will be confined to a wheelchair, on high flow oxygen 24/7 and probably in ICU. I am not looking forward to finding out but it also keeps me hyper vigilant in staying away from any situation where I may get sick. But I am going to be in a yucky hospital physio room for 5 days a week with other sickly persons. THAT is the part I worry about. I have my Lysol spray, masks, wipes and just shy of a full on bubble suit I plan to touch nothing and no one when possible. No hand shakes to meet someone, no holding the door for anyone, no using elevator buttons with fingers, no breathing in any type of ick that lives in the hospital. That is going to be my challenge.
Now I move on to the physio part of this month long program and why I believe I will not get anymore out of it than I am already doing for myself. So the other 99% of lung trx patients are quick sick when they start camp. Some are wheelchair bound, some can’t do any type of exertion and most have lived a very sedentary life up until camp. This 4 weeks is for them. They learn how to exercise with limited lung function and most actually improve health wise after the 4 weeks. That is great…for them. Will I improve? Doubtful. My lungs are as strong as they possibly can be. I will be continuing my crossfit in Edmonton on my own along with continuing my rowing challenge. So maybe physio will help me do some good stretching exercises and yoga- that would be helpful, but walking on a treadmill for 30 minutes is just not hard for me…yet.
I have packed my life into my Jeep and will venture up to Edmonton tomorrow with my fur baby in tow. I am going to take these next four weeks to really take stock of the things I need to change to better my health, ie going to bed earlier and eating better and celebrate the stuff I do well, keeping this shite disease from killing me.
I shall bid you all adieu and I will see you on the flip side. Get busy livin’ or get busy dyin’
You got this Nicki! You will show them your strengthen and determination. They will be amazed. Always been my hero and always will be!❤️ Carol
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