Almost there

My cough is easing, my endurance and energy are improving, and overall I feel much better than I did a couple weeks ago. My pulmonary function numbers, however, barely moved. We didn’t really expect them to though, since the same thing happened in December: I got significant symptom relief, but limited pulmonary function improvement. We’re going to do one more week of antibiotics to solidify things, and then start working on long-term plans. The first step is seeing whether I maintain my health once the antibiotics are stopped, or if I fall apart as quickly as I did last time. I’m hopeful that I’ll do better this time as long as I don’t catch another cold like I did in January. So if you have any respiratory infections, please stay away from me!

I need to stay on the anticoagulant for another month once the PICC line is pulled to make sure I don’t get another clot, and then we’re going to work on treating the aspergillus and seeing whether that makes any difference in my pulmonary function. Here’s hoping I can keep it together until then, and that aspergillus is actually the culprit so that I’ll see improvement once it’s treated!

Home sweet home

My meds are stabilized and they're sending me home on IV antibiotics this afternoon. Looking forward to a quiet, uninterrupted night's sleep in my own bed!

Back to the hospital

The good news is, I’m doing better than when I was dealing with a cold in January. The bad news is, I never quite managed to fully recover. We tried oral antibiotics, we tried Prednisone, but they didn’t seem to have a significant impact. I’m basically back where I was before going on IVs in December: daily coughing fits, low endurance, fatigued, and just kinda slogging through day by day.

For the last few months my doctors have been discussing starting treatment for aspergillus, a fungal infection that has been in my lungs for decades. The thing with aspergillus is that it doesn’t necessarily have any symptoms or impact, and there’s no way to know whether or not I’ll get any relief from treating it. It’s also not a quick fix, and will take months of treatment. However, aspergillus can slow response to treatment during CF exacerbations and impede full recovery, so it COULD be a factor in my recent health issues. All plans were put on hold when I got the blood clot, however, as the medications to treat aspergillus interact with the blood thinners that I’m still on due to the clot.

By the end of this month I should finish up the blood thinners, and we can get to work on the aspergillus. In the meantime, however, I’m feeling pretty crummy – so we’re gonna go for another round of IV antibiotics and try to get things back on track before then. I’m heading to the hospital whenever they have a bed for me, hopefully later today. We’re also going to work on an ENT consult to see if my sinuses are contributing to my health issues, as well as a glucose test, because apparently untreated CF-related diabetes (CFRD) can cause respiratory problems. Fun fun!

Here’s hoping we get some answers and effective treatment options soon. And that I manage NOT to catch a cold as soon as I finish IVs this time around!!

Another infection

I wish I could say that everything has been great since I stopped IV antibiotics a month ago, but that would be a lie. I made it about a week and a half before coming down with a cold. For a normal person this would be a minor inconvenience, but with my compromised lungs any respiratory infection has the possibility of setting off a CF exacerbation. I was hopeful, however, that I might be able to weather it without major complications, since I had just completed a round of IVs and in theory I was at my strongest.

Unfortunately, I was wrong.

The infection moved into my chest and triggered the CF exacerbation I was hoping to avoid. I started oral antibiotics almost 3 weeks ago, but through last week I was still having coughing fits every day. I was also running a low-grade fever most of the time and my doctor wasn’t sure why. To add insult to injury, I’ve also been struggling with gastrointestinal issues, so eating has been difficult. And coughing doesn’t exactly help with nausea.

Overall it’s been a really exhausting month, but I FINALLY seem to be making some progress. Though I’m still congested, my cough seems to be easing, and so far today I have not had a fever for the first time in ages. My stomach is still sensitive, but it’s gradually settling down and I’ve been able to eat a little more easily. Hopefully things have finally turned the corner and will only continue improving.

Follow up

I had a doctor’s appointment on Wednesday, and my pulmonary function numbers were slightly up from the previous week. It looks like I did benefit slightly from additional time on IV antibiotics, but it wasn’t significant enough to go through the hassle of getting me another PICC line and starting them up again, so I am officially IV free! In terms of the DVT (Deep Vein Thrombosis, aka clot), I need to be on anticoagulant medication for the next 6 weeks and then have an ultrasound to see if/how the clot is improving. Fortunately I’m on a newer drug that can be taken orally instead of via injection, and doesn’t need weekly blood tests, so I just pop a pill twice a day and I’m set. The main risk, of course, is injury: Since anticoagulants reduce your body’s ability to clot, any injuries have the potential to be more serious or bleed uncontrollably. Fortunately I have a pretty chill lifestyle, and I’m only minimally klutzy, so I should be ok. Just don’t invite me to join you in any extreme sports for the next few months, ok?

Unfortunately, there will likely be some permanent damage to the clotted veins. The pain and swelling are expected to improve (and already have!), but those veins may always be a little sluggish and that arm/hand may be prone to swelling. More concerning is that those veins won’t be able to be used for PICC lines in the future, which could be an issue over the years as I continue getting PICC lines and other veins start wearing out. Also, since I will be getting more PICC lines, we need to try and keep this from happening again – once you’ve had one DVT, you’re at greater risk for having another one. So I’ll be having a consult with hematology to determine whether some medication changes could have contributed to the clot, what other meds we could try instead, and whether I should be put on anticoagulants preventively whenever I get PICC lines in the future. Fun fun!

Overall, I am very grateful that this wasn’t worse, and that I’ve passed the main risk period for serious complications. And I’m even more grateful that I’m breathing and walking SO MUCH BETTER than I was when this month started. Onwards to better things!

Success!

I'm going home!

So close...

WE FOUND A PHARMACY! Buuuut... Insurance is requiring prior authorization... The hospital staff are gonna try to negotiate and see if they'll give me a 4 day supply so I can go home while the authorization is processed. We've got almost 2 hours to figure this out before the pharmacy closes. Fingers crossed!