Home- Day 26

I am thrilled to be home. Nothing beats your own space, your own stuff and your own quirks! It was a long drive as my Jeep was being a bit of a bugger. My side mirror was falling off, the heater had one speed-high and my driver side door locked itself and me out. It was very weird. It was possessed. I guess thats what I get with a 13 year old vehicle. Into the shop she goes. Mom packed the entire jeep this morning while I was trying to get ready. The exhaustion of everything just hit me like a wrecking ball. I came in like a wrecking ball so I guess its only fitting that I get it by it on the way out. After graduating the February 2018 Pre-Lung Transplant boot camp, I was hoping for like a parade, a medal, a certificate, some flowers, a card, just something to mark this momentous occasion, why? Because it.was.hard. I pushed myself to my limits and beyond. I had to prove myself to everyone there that I am not a joke and that yes I happen to know almost everything about lung trx. I’m sorry but I have had so many friends go through it and I follow so many others online going through it that nothing was a surprise to me. That really did piss them off. As “Sally” said to me when I asked if I could just call into my nutrition consult as it may be a waste of time for me, “you don’t know what you don’t know”. Yes that is very true but there isn’t anything I don’t know about nutrition in regards to me. I am at my ideal BMI, I have a feeding tube and yes I know which supplements are no-no’s after trx. The consult was supposed to take 2 hours and we were done in 12 minutes, much to the surprise of the dietitian and Neil who had dropped me off and had planned on going to a hobby shop. Bah!

My most favourite one on ones were with the specialists. The guys/girls with decades of education. I soaked up everything they had to say and I prepped before meeting them. I know the names of the pain meds, the different ways to deliver pain meds. I know that my right lung does 87% of the work to keep me alive. That’s called a profusion rate. I know that I am negative for CMV and positive for EBV. I also know what these stand for. I know my blood type is 6% of the population and that I would be the only one on the current wait list of 40 with that blood type. I know my PaO2 is 57 down from 63. I know my O2 sats sit at around 92% on room air. I know that during exercise my heart rate is ideal for optimum performance. I know my FeV1 varies between 25%-29%. I know my left lung is smaller than my right and that may be an issue-maybe. Because of that I know that I may need access to the heart lung machine or the use of the nova lung when they start taking out my right lung. This is because my left lung is dead. I know my A1C is 7.1 up from 6.9. This means my diabetes is starting to take a hold. I’m still ideal but its also a sign of diseases progression. I know all these things because I ask the important questions to get the important answers.

I realized early on that they have never met someone like me. In regards to a lung trx recipient and CF patient I am over educated and under appreciated. I am unique. I don’t check their boxes and honestly they did not know how to deal with me.That’s ok. I proved it all to them. I showed them through knowledge and action that I truly have a handle on all of this financially,physically, emotionally and mentally. I am now in the hurry up and wait phase of the process. I’ve learned everything I could to be ready. I’m as ready as I will ever be. I didn’t need 4 weeks but thats ok. I had to be patient and bide my time. I did do what no other patient has ever been able to do before- leave early! For everything I did there I was rewarded with 2 days off.

I know I sound like a know it all. That’s not my intention. My intention is to start teaching doctors and the teams of specialists that I am not like the majority of CF patients so maybe you could treat me as an outlier, a person who does not follow the norms of this disease. I need them to see that I deserve their respect and I should be regarded almost as an equal. I have worked my ass off physically to be where I am and I have researched every facet of this disease, every stage I will go through and then added on as much knowledge as I could about pre and post trx. I listened to hours of surgical podcasts meant for med students. I read papers written by expert researchers in the field of lung disease and when I come across a word that is beyond me, I look it up. If I find a description of a muscle or tendon etc. That I don’t understand, I look it up in my anatomy book. I didn’t just become smart. I study. I learn and that makes me the absolute best advocate/expert for myself when decisions are being made about my health and my life. I will never apologize for that. Please note: If my 10 yr.old nephew asked me to help him with is math I would fail miserably. I do not propose to know everything. I am far from that kind of knowledge.

So where do I go from here? Well I continue on in my life, fighting for each day, learning new things and finding the joy in the dark. Tomorrow I promise not to talk about CF at all. I need a break.


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