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!

Progress and Pokemon

Things seem to be moving in the right direction, thankfully. I’ve been having fewer coughing fits, and I’ve noticed more endurance and energy over the last couple days, so the antibiotics seem to be doing the trick. I’ll find out at my follow-up appointment on Monday, where we’ll see how my numbers are after 2 weeks of IV antibiotics and hydration, and decide whether to continue treatment or pull the IV.

I’ve been trying to lay low, what with the whole being hooked to an IV pole multiple times a day thing... BUT laying low isn’t exactly my strong point, so I’ve had an adventure or two. The most notable is that I schlepped out with my afternoon antibiotics, which come in a syringe and a self-infusing medi-ball and therefore don’t need an IV pole, so that I could go… Pokemoning! I went to Camden on Sunday afternoon, and drove around the City Hall/Rutgers/Aquarium area collecting Pokestops and Pokemon. Which of course meant there were various points when I was parked on street corners in Camden, the crime capital of the country, infusing drugs into my arm and looking SUPER SKETCHY. Good times! The important thing though is that I caught LOADS of Pokemon, so it was TOTALLY worth possibly getting mistaken for a drug addict and/or arrested!

I’ve also been working on a durable, marketable version of Pole People. Stay tuned for further developments!

Oh, and I suppose I may as well mention… I finally designed business cards and updated and formalized my Etsy shop, which currently has a few pieces of handmade jewelry for sale. I plan to create and add new jewelry pieces, as well as Pole People if I ever pull together a workable design, and possibly other pieces of art. Feel free to check out and share www.DreamspiredDesigns.etsy.com!

Going home!

The junk in my chest is loosening up, my med dosages are stabilized, and I’m getting out of here! We’re working towards discharging me this afternoon so that everything can get set up and settled with the home care company without crashing into Shabbos. I’ll still be on IV fluids and antibiotics for at least another week, but I’ll be doing it from the comfort of my own home. Very much looking forward to decent food and a quiet, comfortable, full night of sleep!

Pole People!

A new hospital means... A new audience for the Pole People! They're kinda feisty this time around, and simply refused to limit themselves solely to the confines of an IV pole. Such hopeless show offs!

Bureaucracy and big decisions

Hi-ho, hi-ho, to the hospital I go!

Honestly, the last few months have been difficult on multiple levels. Let’s start with the bureaucratic mess. Over the summer, Cigna sent me a lovely letter saying Oops! They started my disability payments 3 months early, and overpaid me a couple more times in the following months, please send back almost $4,000, thanks! After some haggling, they started withholding $200 from my monthly check until the balance is paid off. At around the same time, I found out that my Medicaid coverage was ending as my monthly disability income is too high. I thought I could get on a different Medicaid program with higher income limits for people with disabilities, but they require 10 working hours per week, which I can’t reliably or consistently commit to. So I sorted through Healthcare Marketplace plans, none of which actually provide adequate coverage for my extensive, expensive medical needs. Eventually I settled on one that covered my CF clinic in Philly, had a mostly affordable premium, and had an out-of-pocket max that wouldn’t completely break the bank. And then 2 months later I got to do it all over again, because the plan I selected won’t be available in 2017. Isn’t being an adult fun??

Aside from that, my health has been kind of hovering on the edge ever since the summer. Though the IV hydration helped briefly, my pulmonary function numbers started dropping again as soon as the hydration ended. Aside from the frustration of trying to push through low endurance and low energy month after month, it was also frightening knowing that I was basically a sitting duck, and one tiny respiratory infection would likely be enough to trash my lungs and land me in the hospital. By the end of October, my numbers had dropped below where they were when I went on IV hydration in July.

And that’s when the next headache started.

I love my doctor. He’s been treating CF forever. I first started seeing him when I was a teenager (and he wasn’t young then!). He’s quirky and funny and knows his stuff. He also, frequently, drives me completely insane. We’ve had many arguments about my treatment over the years, usually ending with both of us frustrated, sometimes with me in tears. He uses antibiotics sparingly, and prefers to focus on long-term lifestyle changes, mostly involving reducing and controlling my cough to prevent ongoing damage to my body. The wait-and-see method and only pulling out antibiotics as a last resort has mostly worked for me over the years, but less so since my health has deteriorated. I finally reached my breaking point in October, when my numbers were so low, yet he didn’t discuss them or suggest any treatment, and instead spent the whole appointment lecturing me about my cough. After sitting on it for a few more weeks, I finally decided it was time to try something different, and scheduled an appointment with one of the other doctors in the clinic.

It was a tough decision, but I think it’s the right one. I’m ready for a fresh perspective and more aggressive treatment. I know I’ll never get back to where I was prior to 2014, but I do think I can feel better than I have these last few months. So I’m going inpatient for a few days to get started on IV antibiotics, and then will be finishing out a 10-14 day course of treatment at home. And hopefully soon I’ll feel better than I have in a long time!