But there are some things to note about this hospital stay. First of all, this is the fourth time I've been in this year. Count 'em: 4. That's a new record for me, and not one that I'm very excited about. I also got insulin for the first time last week. I've gotten insulin 3 or 4 times now, while I've been here. They are checking my sugars before every meal and in the evening, which makes for four finger pricks every day. And let me tell you, my fingers are pretty bruised and showing signs of wear. My sugars were fairly erratic; sometimes they were within normal range, and the worst was when they were 348. So they are now having me take a pill that will help regulate my sugars while I'm still in the "pre-diabetes/not-quite-yet-full-blown-diabetes" phase.
But on Tuesday, I was delivered some major news from my doctor. She told me that she wanted me to contact the transplant team at the big hospital so I could be evaluated.
At first I didn't really react much to that news. But by that evening, I was spiraling into a black hole that had been ripped open in my world.
The "T-word" is something that has always been in my vocab. It's something we CFers always know is a possibility. Since the 1980s, double lung transplants have not only been possible, their rate of success continues to increase with people living over 5 years post-transplant or receiving second lung transplants. But suddenly something very abstract became very real. Transplant? Already? No, it's not time for that. I'm still fairly okay. I'm not even on oxygen. I still have so much I want to do!
After a couple solid days of being down and out and quite upset about it all, it finally percolated through and I was able to process the news. No, I don't need a transplant right now. No, my life is not over. I may not need one for a few more years, who knows, but the sad truth is that CF has significantly taken over my lungs and it's time to start planning for that day whenever it comes.
Now that I'm in a better place mentally, I can honestly say that I want to talk with the transplant team. I want to find out now, well in advance, what I need to do to put myself in the best position possible for receiving new lungs. I want to start now, years before it's time, so that my chances of success are as perfect as they can be.
But this is going to involve a lot of change, which is another reason why I think this news was so difficult to digest. With my previous doctors, we were just going along, acting like I'm fine when I'm not, and if I was still with them, this is not something they would have said. My new doctor, who is amazing I must tell you, is much more proactive, much more on top of things, and much more concerned about me, not in a dire way but in a genuine "I really want the best for you and I will make myself sick if I don't help you as best as I can" kind of way. And I think it's good to have someone on your team like that.
So she is genuinely concerned that my lungs are at a turning point, and not the good kind. She is afraid that lung infections and hospital stays 4 times a year (or more) will become my norm and therefore it is time to start talking about the next step: transplant.
I backtracked through a lot of blog posts of a fellow CF girl whose blog I follow. She had over two years between the time when her doctors referred her and when she received new lungs. So it's reassuring to know that this is more of the norm. Just to explain things a little bit: usually you start talking with a transplant team well in advance. You will talk with the transplant team about the requirements, post-transplant expectations, and lots of other stuff. You will be "evaluated" which means you undergo many tests to see the state of your body. Fortunately, I don't have any other diseases or complications outside of my CF, so that's a positive. After that, and depending on many other things I don't know about yet, you decide when it's time to be "listed" which means you officially go on the transplant list for new organs when they are available. So me being evaluated now does not mean I will be listed any time in the near future, and hopefully it stays that way. But in a nutshell, that is the general course of events.
But it is still just hard, and I know that no one is going to hold that against me. I have been praying about it, and trying to talk to God about it, but it's been hard. I have tried to repeat "Not my will , but thy will be done", but it's hard. Truly, fully, undoubtedly putting your life in God's hands is hard. And I have learned that I am not where I need to be in putting my trust in God. But I guess you could say this entire journey I'm starting on might help me with that.
The good part is I have a great support team, God's workers on earth, and that can only be viewed as a blessing. The nurses and therapists here were very helpful too, as I struggled this past week. My nurse sat with me one evening and offered to call my priest at my home parish. And during one of my treatments when I was crying, my therapist (who is a wonderful girl from Cameroon, Africa) started to sing to me. My parents are supportive and involved in my care and will continue to be with me every step of the way. The same can be said for Jarrod's parents. My friends are pretty fantastic too. My dog Josie will be licking my face when I'm sad. And lastly there is Jarrod, the man God knew I needed for times just like this, "...in sickness and in health." He has been so wonderful through all of this and I know he will be at my side as we begin this new journey into the unknown.
My aforementioned nurse told me to look up this song by Mandisa. It's pretty great, and the video is touching (but if you're like me and music makes you cry [theme from the movie Up? Anyone?] then maybe grab one more tissue to get through this song haha!)
PS—To my two best friends M.C. and H.N.J. please know I wanted to talk to you about this, but you could say I am still getting through the news, even though I am doing much better with it. So to my two friends, please forgive me that this is how you will find out about this, but right now it is the easiest for me to write about it. It's not a 'fun' conversation to have, so please know that I was not wanting to withhold this from you. :)
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