Good news: the catheter is OUT!
Yep, afer 2 1/2 months of weird fevers, blood cultures every few days, over 6 CT scans of various parts of my body, countless x-rays, 4 hospital stays, and continuous use of one IV or another (aside from a brief 2 week break in there), the probable culprit is out of my body for good! I cannot even tell you how excited I am.
Of course, in true Piper style, I didn't make it easy on anyone. They were scared to put me under general, so the whole thing was under conscious sedation (apparently I told the nurses all about my sister's awesome fashion line -- how great of a little sister am I?). They cut open my arm in multiple places, clamped off a vein, removed the scar tissue, and then ended up having to literally "lasso" the catheter as it started slipping away into my heart. Wow. They thought the surgery would take about 20 mins to an hour -- it took over 2! But I have an awesome team, they got the job done, they did it safely, and I'm scheduled to finally go home tomorrow. Hopefully minus one very pesky blood infection.
I'll still be on lung IVs for a while, but hopefully not too long. This is week 3 and I normally do 3-4, so here's hoping I get to call it all quits after that. We're going to leave in my PICC for now, in part because it seems silly to get a new port when they'll have to remove it during transplant anyway. The other reason is that it took them 3 hours to place this PICC in interventional radiology (no joke) because my veins simply "do not do PICCs" anymore, as the radiologist said to me afterward. So it might be wise to leave this one in just in case I end up back on IVs in the next month or so. The other option is a new port, and while I'm not opposed, I am a little gun-shy right now. I think it's justified.
By the way, this is totally not to say CFers should avoid ports. Totally not. I LOVED mine. And it was great, for 9 whole years. It saved me countless PICCs (off the top of my head I can say that I've had at least 25 rounds of IVs in that 9 years, which is ridiculous -- most of them in the last 3), and a lot of pain. What happened to me with the stuck catheter was totally weird and very rare, so please don't take it as anti-port propaganda.
Okay, so other news.
1) I am now "officially" on O2 24/7. I say "officially" because I am actually still stating a little above 90 most of the time, but I desat with minimal activity (like walking around the apt), so my doctor placed me on 2 liters with instructions to use my judgment and be careful. It's a new development to have the script for the 24/7 O2, but it doesn't change much, since I was being pretty careful to use it with any real exertion anyway.
2) I have a Frequencer! This is a new airway clearance device that I asked my doc to look into and she, being amazing, got me a demo and then a free trial. I love it! It works like chest CPT only using sound waves that go through your body. You don't feel squeezing or beating, but then when you speak your voice vibrates just like the vest! You hold the little speaker over each part of the lung for 2 mins, just like CPT (front only -- it travels through muscle and gets both sides of the lobe), and it works wonders. I cough up tons every time I use it. Highly recommended to try out, especially for people who want a basically silent, tiny, and super effective alternative to the vest. I promise pics and a more in-depth post later.
3) Just an interesting tidbit: I just found out that my center is one of just a couple in the country currently experimenting with transplanting CFers directly off a type of artificial lung called ECMO -- basically a machine that takes blood out of your body, oxygenates it, and returns it. The idea is that the vent is problematic for CFers because you can't cough. So my center is experimenting with taking CFers who go into respiratory distress and weaning them off the vent and onto ECMO, and then actually taking them out from under sedation so that even while hooked up to ECMO they can cough and do some airway clearance. The idea is that the CFer will then be in better shape going into transplant and hopefully have better outcomes than off the vent transplant (though many of those turn out fine, it has to be said). I don't entirely get it, but it was offered to me as an option should things get that far (knock on wood). ECMO is sometimes used after transplant to help lungs that for some reason aren't functioning well in the first couple of days, but this is apparently a much more novel and experimental use. There has already been at least one success story here using the method. I haven't decided yet if I would go for this option or not, but I'm discussing it with my family now just in case. I just think it's crazy incredible what new things are developing in the world of CF lung transplants!
That's it. Thanks everyone for your thoughts and prayers -- they definitely came in handy to make this try a success!
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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