It's been a while since I wrote anything, and I actually have a lot to catch you up on. For the past two weeks, I've done a lot of tests, seen a lot of doctors and nurses, and gotten a lot of good news. So we'll start at the very beginning, a very good place to start...
Three weeks ago, we went for my evaluation for lung transplant. I didn't tell many people, didn't tell my workplace the reason I had to have so many tests done, and realized after-the-fact that there were some people who I thought knew about it, but didn't.
It was four days of tests and meetings. I was planning to write about the whole thing, but I'll spare you the details unless you really want to know (I'm perfectly fine sharing, it's just a long story.) In short, I had 10 different tests, was stuck with a needle 7 different times, and met with 4 different people. My poor veins, they are still recovering and I still have bruises; it sucks having shit for veins. I was also radioactive for a couple days, which is something cool I'd like to slip in. I had to go to nuclear medicine both days for tests that involved inhaling or injection of a radioactive isotope. So they give you the isotope, then a machine takes pictures of you and the gamma rays you emit. Pretty cool. What this and some of the other tests showed is that my heart is in tip top shape for transplant!
Tuesday was the big day we met with the doctor where we got some wonderful news. He said I don't need a transplant now—which is awesome, though I already knew that one. I am way too healthy and can do way too much to need this right now. You might be thinking: Wait, I thought you're pretty sick, why would they make you wait, how are you "too healthy"? Well my friends, the decision to have a transplant can be a tricky one and there is no set formula. You don't want to do it too soon because you are literally trading one set of problems for another, and post-transplant your biggest enemy becomes organ rejection. So they don't want to give you that risk any sooner than needed. I may write more some other time about all that goes into it, but for now we can leave it at that.
He said to keep up the good work and truly felt the exercise and extra vest treatments are really helping. I know that working from home is helping too: I'm not around sick people very often, and getting out of that old building has done wonders for me. We don't have to repeat all these shenanigans again until it is much closer to the time of needing transplant. He said many people hold steady where I am, and it may be years until we need to do this again. But at this time (drum roll please...!) he sees no major reason why I would not be able to receive new lungs when the time comes. When he told me that, I fought back tears of joy.
I realize a lot can change between now and whenever this might happen, but it is a relief to hear I have a shot at a second chance. Now I know what I wanted to know: that if I need it, and provided all my other organs hold up well, I will be a great candidate for transplant.
Then two Tuesdays ago, I went for a regular checkup with my doctor in Columbia. I got lunch at Shakespeare's Pizza, which is a huge perk of having your doctor in Columbia haha. They had nothing but congratulations and praise and good news to give me as well! My weight is up, plus my lung numbers are even BETTER than they were 3 months ago (and remember, that's 3 more months out of the hospital... what is happening to me?!), plus she cleared me to join a gym, plus plus plus! It was spectacular.
I also finished up Pulmonary Rehab that Monday, and could continue on with that at the hospital or move on to a gym. I advocated for the gym because I know I have a lot more potential in me than the nurses at rehab acknowledged. I felt like they were holding me back, and kept telling me that I couldn't do things. I think I will be able to build up a lot more strength in a gym than with an arm bike. So last week, I officially joined the gym Jarrod has been going to, and I think it's going to be good for me.
As one of my best friends told me "Could you imagine a year ago, when you were at Barnes, that you'd be doing this well?" I'd never thought of it that way, but that is so true. I never imagined I could be 5-months post-hospital stay and feel BETTER than I was when I came out of the hospital. Usually, the day you leave the hospital is the best day ever; not just because you're going home, but because the meds have taken care of things and you feel at your best point. Then it's all downhill from there, honestly.
But apparently it's not! It's more like a plain right now, a nice boring Kansas-like plain!
Showing posts with label transplant. Show all posts
Showing posts with label transplant. Show all posts
Monday, May 19, 2014
Monday, November 25, 2013
I'm Finally Ready to Talk About It...
This past week has been a bit rocky. My hospital stay has been going relatively well. My PFT on Monday was decent enough, showing we were heading in the right direction at least. I will do another PFT tomorrow to see if we're back where we need to be, or if we need to continue meds. I'm really, really hoping for the first of those two options.
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. :)
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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