Finally!

Progress at last!

At my appointment on Wednesday my FEV1 FINALLY inched up a couple percentage points. More significantly, my symptoms continued improving. My congestion level seems to be back to baseline, I’m a little less short of breath, and my appetite and energy levels are starting to pick up. We think the IV antibiotics have done about all they can for this round, and the rest will be waiting for my lungs to finish healing from post-viral symptoms and working to rebuild my strength in pulmonary rehab. And of course, trying to avoid catching any more respiratory viruses! I’m finishing out my antibiotic doses through tonight, and then I’ll de-access the port myself and enjoy my long-awaited freedom.

Speaking of pulmonary rehab, though I still have a long way to go, I already showed progress from Monday to Wednesday. I was able to manage a couple more exercises, and my heartrate didn’t go as high. Hopefully things will continue progressing faster than I expected!

It’s been a long haul, but I am very grateful to finally move on and hopefully return to some semblance of normalcy!

Slowly making progress

They tried to make me go to rehab, but I said – oh wait, I did that one already, didn’t I? 

First day back at pulmonary rehab! And boy, am I weak. I wasn’t even able to manage the level of activity that I did during my first week there, much less what I was doing immediately prior to being hospitalized. It makes sense, seeing as I haven’t been terribly active during the last month, but I still have a lot of ground to make up.

By the end of last week I FINALLY saw some progress on my hand-held peak flow meter, and was also coughing up less mucus. Since I finally started making progress, we decided to do one more week of IV antibiotics and fluids. I have another follow up on Wednesday, and I expect to be done with IVs either then or Thurs. This has been a long haul, the longest I’ve been on IVs in quite some time, and I am very much looking forward to freedom and being able to sleep in as long as my body wants instead of waking up to run infusions!

My throat is still scratchy and sore from lingering viral symptoms, and this cold dry air definitely isn’t helping. Lately I’ve been hunkering down in my room with the humidifier running full blast, trying not to talk, as well as having lots of hot drinks (preferably hot chocolate!) with honey in hopes that things will finally heal and I’ll get my voice back. Things do seem to be slowly improving, so here’s hoping I may actually be able to manage conversations without pain soon.

One unhappy complication is that a week and a half ago we had to stop one of my antibiotics, Tobramycin, because I started noticing a mild ringing in my ears. I also feel pressure inside my ears, as if my head is stuffed up. Tobramycin can cause hearing loss, and those are some of the symptoms, so we stopped it immediately. Unfortunately, a week and a half later symptoms haven’t improved, and it’s unclear whether they will. It’s also hard to tell how much is Tobra and how much is my terrible sinuses being their usual terrible selves, so this may have been creeping up on me unnoticed for a while. Thankfully the symptoms are pretty mild and I can mostly ignore them.

My latest party trick is that I learned how to de-access the port by myself. They change the needle weekly, so this morning before the nurse came out I de-accessed the port and took a wonderful IV free shower. I’ll be able to do that from now on whenever I’m on IVs, which is a nice benefit that the port has over the PICC lines I was getting before. It never ceases to amaze me how therapeutic a hot shower can be!

I’m very grateful that things are FINALLY heading in the right direction. Onwards and upwards!

Pole dancer

Katherine: *watching me maneuver around my IV pole trying to get stuff done without getting tangled in tubing* You give a whole new meaning to "pole dancing!" 

Prognosis and long-term planning

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.