I had my follow up appointment last Thursday, and though the results were completely unsurprising, they were still pretty disheartening. Based on at-home readings on my hand-held peak flow meter, I was pretty sure my FEV1 (the primary lung function number we look at, which measures airway obstruction) hadn’t budged. And I was right. However, that is possibly/probably due to the fact that my lungs are still recovering from the respiratory virus. We decided to do at least another week of IV antibiotics and fluids while the viral symptoms continue easing, and added in some Prednisone to help open up my airways. If I still feel like I’m improving after that, I’ll keep going with yet another week of treatment to try to get me up to my best possible lung functioning. We don’t expect to see a HUGE difference, because in the last couple years I just haven’t been having a strong response to IV antibiotics. But I do typically have SOME response, and we’re pretty sure I can do better than I am right now.
The fact that I haven’t been responding to IV antibiotics, however, is an ongoing concern. My lung function has been declining pretty steadily and somewhat rapidly over the last few years, and we haven’t really been able to do much to stop it. It’s also been difficult to keep me feeling halfway decent between rounds of IV antibiotics. Honestly, I can probably count the number of weeks that I felt mostly functional in 2017, and 2018 isn’t shaping up to be much better.
I finally initiated a conversation about prognosis with my doctor. I already knew almost everything he had to say, but we hadn’t actually directly discussed it before now. Yes, my lung function is declining somewhat rapidly. No, there isn’t really much more they can do to slow it down. Yes, they are concerned. No, they don’t really know what else to do to help me feel better, aside from long-term steroid use, which may or may not help and could have some significant side effects. Yes, we may do that anyway, if that’s what I want.
We also discussed lung transplant planning. Many people seem to think that a lung transplant is the obvious solution, but lung transplants come with a host of potential complications and risk factors, and have varying degrees of success – if you’re even lucky enough to get lungs in the first place. Lung transplants are a last ditch effort when you’re out of options and running out of time – and I’m not there yet. Right now my FEV1 hangs out in the 50-60% range, and you don’t get listed for transplant until you’re under 30%. Recently I’ve been losing somewhere around 10% every 2-3 years, so I have some time until then. My doctor did say, however, that due to how rapidly I’ve been declining, they will likely start working on pre-listing procedures just before I hit 30% so that I’ll be ready to go as soon as I drop low enough.
Yes, this is scary. Honestly, I already figured most of this out (aside from the lung transplant details) around September, and have been mildly depressed since then. I had stopped seeing a therapist in 2016 because I was feeling good and no longer needed the support, but I am in the process of getting back into therapy. I need to process this next stage of illness, grieve what I’ve lost, accept where I’m at, and re-learn how to find the joy and meaning that I know still exists in my life. I went through this process when I first became disabled, and am fully confident that I will get back to happy-go-lucky, I-got-this, laughing-in-the-face-of-danger Eliana relatively quickly. And I’m sure I’ll need to go through this process again, and again, as I hit each new stage of illness and disability. And each time I will rock it and come back as strong as ever, mentally if not physically.
It's been a rough year. Despite the upbeat persona I try to portray, I am only human, and sometimes it gets to me. But it’s gonna be ok. I’m gonna be ok. And even when CF knocks me down, I still come up fighting. I got this.
The fact that I haven’t been responding to IV antibiotics, however, is an ongoing concern. My lung function has been declining pretty steadily and somewhat rapidly over the last few years, and we haven’t really been able to do much to stop it. It’s also been difficult to keep me feeling halfway decent between rounds of IV antibiotics. Honestly, I can probably count the number of weeks that I felt mostly functional in 2017, and 2018 isn’t shaping up to be much better.
I finally initiated a conversation about prognosis with my doctor. I already knew almost everything he had to say, but we hadn’t actually directly discussed it before now. Yes, my lung function is declining somewhat rapidly. No, there isn’t really much more they can do to slow it down. Yes, they are concerned. No, they don’t really know what else to do to help me feel better, aside from long-term steroid use, which may or may not help and could have some significant side effects. Yes, we may do that anyway, if that’s what I want.
We also discussed lung transplant planning. Many people seem to think that a lung transplant is the obvious solution, but lung transplants come with a host of potential complications and risk factors, and have varying degrees of success – if you’re even lucky enough to get lungs in the first place. Lung transplants are a last ditch effort when you’re out of options and running out of time – and I’m not there yet. Right now my FEV1 hangs out in the 50-60% range, and you don’t get listed for transplant until you’re under 30%. Recently I’ve been losing somewhere around 10% every 2-3 years, so I have some time until then. My doctor did say, however, that due to how rapidly I’ve been declining, they will likely start working on pre-listing procedures just before I hit 30% so that I’ll be ready to go as soon as I drop low enough.
Yes, this is scary. Honestly, I already figured most of this out (aside from the lung transplant details) around September, and have been mildly depressed since then. I had stopped seeing a therapist in 2016 because I was feeling good and no longer needed the support, but I am in the process of getting back into therapy. I need to process this next stage of illness, grieve what I’ve lost, accept where I’m at, and re-learn how to find the joy and meaning that I know still exists in my life. I went through this process when I first became disabled, and am fully confident that I will get back to happy-go-lucky, I-got-this, laughing-in-the-face-of-danger Eliana relatively quickly. And I’m sure I’ll need to go through this process again, and again, as I hit each new stage of illness and disability. And each time I will rock it and come back as strong as ever, mentally if not physically.
It's been a rough year. Despite the upbeat persona I try to portray, I am only human, and sometimes it gets to me. But it’s gonna be ok. I’m gonna be ok. And even when CF knocks me down, I still come up fighting. I got this.
No comments:
Post a Comment