Wednesday, September 16, 2009

Third Time's the Charm

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!


  1. Glad you are better! I am looking forward to hearing about the frequencer!

  2. Very glad the procedure went well. I'm also having to look into accepting the whole "24/7 O2" idea, its going to be interesting. Please let us know more about the Frequencer!

  3. I'm so glad the cath is gone and I hope that means the infection is too!!!!!!

    <3 you tons!!!

    I may have to look into this sound thingy and see if my DR can get me a trial one too :)

  4. 3 cheers for the port removal! here's to improved health.

    can't wait to hear more about the frequencer.... i'm interested in trying it too. can't wait to see pics!

    and finally, neat development about tx methodology. thanks for the great info!

  5. Glad you are better and the "entire" port is out!!

    That's interesting about the ECMO expiramentation. I was on ECHMO prior to my transplant because of respiratory distress, ventilator, and basically being "dead" but didn't realize it could be an option INSTEAD of the ventilator AND that you could be "awake" in it as well. Of course I was put in a "coma" per se, but that was because I was so sick. I'm definitely interested in what the outcome of this experimenting is!!! You will have to let us know what you decide.

  6. congrats and so glad to see this blog title post!!! love, cg

  7. I am so glad that's over for you. Hopefully, the fevers will stay away for a while! Thinking of you daily!

  8. Piper, Awesome news all around. Glad to hear the pesky port is gone! I sure hope you get a long well deserved break from IVs now.

    I did a trial for the frequencer too and absolutely loved it as well. The local distributor is trying to figure out how to get insurance to cover it (it's 3x my annual DME and they don't want to do a multiple year thing). So with luck they'll find some creative financial solution and I can get one for keeps too! Hey, if you've got sore muscles the frequencer does wonders for them too. LOL! :)

    The ECMO transplant thing sounds very interesting. If you've got links to any articles on it, I'd love to read up on it.

  9. Glad to hear you have kicked the blood infection out for good and that they have removed your run away port! The frequency thing-a-ma-jig sounds awesome, man technology! O2 24/7 that's a bitter pill, so happy to hear you are taking it in stride. It's only temporary right? After you get those new lungs you'll be unstoppable!!Here's to hoping your wait is a short one!

  10. I hope you dont mind if i add yu to my blog roll, you are such a sweetie, and its so good to meet someone else with CF on here.

    I just got a PICC line in my arm last week, and so far so good...did you find yours got in the way when wearing short sleeve tops or anything? I got quite a few funny looks while shopping for groceries today!

    Much love x