I woke up at 8:30am this morning, which as many of you know, is a feat in and of itself. I also looked outside, looked at Cali snoozing and went back to sleep til 10. It’s -35 here with a ton of snow on the ground and very little condo maintenance to be seen around here. The sidewalk to my car is like trudging through a 4 foot pile of glue. Ugh.
Today was a down day and I find myself disappointed in myself for not getting more things done, namely going to the Y to get my 5K row in. It took me 15 minutes just to brush off my jeep so I quit. I did manage to take Cali for a very frigid 10 minutes walk around the complex. She was fine with her boots and coat but I was a frozen popsicle. I plan to redeem myself tomorrow. I also wanted to do the CrossFit Judges course today and when I started it, it kept logging me out after 2 questions. Will try that again tomorrow.
I did do 2 loads of laundry as I wash all the clothes I wear to the hospital so it adds up. Ordered a rice bowl from Skip the Dishes and chatted with my good friend Carol for an hour. Now I am watching the Flames and doing meds.
I feel so out of touch from my real life. I miss my friends, my gym, my friends dogs, the family and even my CF clinic team.
I find the transplant team to be a bit stuck in what they only have known since the inception of the program. Did you know that the first ever double lung transplant was only in 1988? True story. Transplanting lungs is still quite a young practice. The team seems to be running a program designed for then. The handouts, the lack of technology, lack of Skyping into clinic visits etc. Just isn’t on their radar. Its weird. It could be such a better program, in fact, it could be world leading but its stuck. Don’t get me wrong- where it counts is where they are rockstars and that’s in performing over 70 lung transplants per year! That means the 4 surgeons on staff are perfecting their craft to the point of improving patient outcomes almost solely on their ability to find very suitable matches and performing the surgery with excellence. I know that when the time comes I am in some of the best hands in the world. I know this because the CF population has a 10 year longer median life expectancy because our transplant population is living longer and with less disability than our neighbours to the south.
In the states a lung transplant is all about money. When someone has a gold insurance plan they become a great cash cow for any hospital and since in the states hospitals are for profit they have many different lung transplant centres. That doesn’t bode well for patients because they will never have a team of doctors that have done more than 10 transplants in a year. Dr.Thacker told me that Chicago alone has 3 transplant clinics!! Canada has 4 in total. We have the best of the best doing their absolute best. It is not unusual for a CF patient in the states to have 2 if not 3 lung transplants- which is INSANE!!! In Canada it is very rare for someone to have a second one. It happens, don’t get me wrong, but it is not the norm.
With each additional transplant survival rates are decreased and more complications are common. No thanks. I am a one and done girl. I will wait for the perfect set to be planted into my body by the most talented doctors and then live out the rest of my life with that set. Fingers crossed.
I had a friend who said, even if she could handle a second transplant she wouldn’t take it as she felt it was selfish. I agree to some level. I found out this week that Juan has seen many of the younger kids who need transplants go into rejection within a year because they stop taking their meds- That I have a huge problem with. You don’t get this gift if you don’t take care of it!! Wish there was a way to take them back and give them to someone who deserves them. I also found out that they only transplant people up to the age of 70. I find that a pretty hard pill to swallow. Who deemed 70 to be the age where you don’t get a second chance? What if you are in great shape and caught idiopathic pulmonary fibrosis. A disease they still have few answers about and no idea how people of any age contract it. It wasn’t like you were a smoker or crack user. You lived a good life and then got dealt a shite hand.
I do know that CF’ers do markedly better than any other lung transplant recipient and this is mainly due to the fact that prior to transplant we were used to a rigid health routine so adapting to the new one post transplant is a piece of cake and dealing with any complications afterwards is much less traumatizing. Remember CFers just change from one disease to another. Transplant is far from a cure and may extend your life at the outset to maybe 10-15 years if you are lucky. The longer you go post transplant the more crappy shit happens to you as well. Many of those patients need a kidney, liver or pancreas transplant to deal with the immunosuppressants that have wreaked havoc on their bodies. So as you can see its not a cure.
For this very reason my docs want me to stay on this side of the transplant debate for as long as possible, in order to give me as long a life as possible. Will I live into my 70’s? doubtful, but living into my 50’s was a stretch and here I am 4.5 years away. I’ll take it.
Well there’s some good food for thought for you all. Take care of those lungs! They are all you got…for now.