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!

Self advocacy

Today has been a lesson in self advocacy.

The vascular surgeon I saw this morning was the same guy they consulted with last night. And he basically said the same thing: The clot is in a superficial vein, I don’t need blood thinners, come in for a follow up on Tuesday. He acknowledged that the ultrasound had missed part of a deep vein, but said they could check that on Tuesday. Well I wasn’t about to do the dance we did last night or settle for incomplete care, so I pushed for doing the ultrasound today. He wasn’t sure we’d able to since it wasn’t an emergency, but said he’d try. Well guess who got an ultrasound within the next couple hours? I also told him to contact my CF doctor. If he’s so sure this isn’t a big deal, let him convince my CF doctor of that himself!

A little later the ultrasound results came back… And found that the clot had spread from a superficial vein in my arm to 2 deep veins in my shoulder/chest. Which makes this officially a Big Deal. Dr. Vascular is lucky he wasn’t the one to discuss those results with me, because I was furious at his complete misread of the whole situation. Thank G-d my CF doctor stood up for me last night, so that I was able to stand up for myself today and get this addressed. I don’t even want to think about what we’d be dealing with if this was left untreated until Tuesday.

How many people would have just trusted the expert and jumped at the chance to go home? It’s truly frightening how much of medicine is dependent on the patient's knowledge and advocacy. Don’t be afraid to stick up for yourself if something doesn’t feel right. “Experts” aren’t always all they’re cracked up to be.

The big question now is can we find an open pharmacy and get a prescription for blood thinners filled on Christmas, or will I have to stay one more night. So far the quest has not been going well… Please send positive vibes (and, if you have it, open pharmacy info) my way!

Drama

Well that was fun.

I woke up this morning to find my IV arm swollen and discolored, which is not a good sign. A couple phone calls later I was on my way to the ER. Turns out I have a blood clot in my arm, which is a potential complication of PICC lines, so it had to be removed. The ER doctor was concerned that I wouldn’t be able to fill a prescription for blood thinners to treat the clot over the holiday weekend, so she planned to keep me inpatient overnight and get things started. But then, she consulted with a vascular surgeon, who reviewed my scans and said I could go home as long as I came in for an appointment on Tuesday, and monitored for worsening symptoms in the meantime. My mom and I weren't completely comfortable with that plan, but figured the vascular surgeon should know what he’s talking about. BUT THEN, the ER doctor followed up with my CF doctor, who was unwilling to leave a clot untreated and unassessed until Tuesday. In the end, I was admitted for the night and given a blood thinner, and the vascular team at the hospital is going to assess me tomorrow and decide on a course of treatment. Not exactly how I wanted to spend my Shabbos and first night of Chanukah.

Since it was likely that the antibiotics would’ve been stopped on Wednesday anyway, we’re not rushing to put in another PICC. I’ll continue getting antibiotics while in the hospital, but will stop when I’m discharged until we see how I do at my follow up appointment. Fortunately this happened at the end of my treatment instead of at the beginning!

I’m such a drama queen. I’ve had countless PICC lines in my life and never once had a clot. Of course the first time it happens is on Shabbos during a holiday weekend. Thankfully it wasn’t worse, and HOPEFULLY I’ll be able to go home tomorrow!

Not quite there yet

Well, things are heading in the right direction, but they’re not quite where we’d like them to be just yet – so the IV stays in for another week of antibiotics and hydration. I kinda thought that might be the outcome, because though I’m feeling significantly better, I don’t feel like I’m at my best yet. I was disappointed that my numbers weren’t higher, but I may need to put more effort into that by doing more nebulizers and airway clearance. I started slacking a little as I started feeling better, but I need to remember that I AM still in a CF exacerbation, and even though I’m not in the hospital I still need to keep myself on a hospital-style treatment and airway clearance schedule. Just with more sleep, and better food!

I’ll be home alone this Shabbos, and depending on how cold it is I may need to stay put, but company would be lovely if anyone wants to join me!