Wednesday, September 30, 2009

Live Strong

Okay, so I know I've been terrible about updating the blog lately. I really have no excuses for my bad blogiquette, except for the fact that I'm finally feeling good (actually, the right word might be "wonderful") and have been seriously enjoying the process of coming "back to life" after so many revolving door trips to the hospital and so much health drama. I guess actually living leaves less time for my blog than sitting in a hospital room does -- go figure -- but I think it's a sacrifice I can live with.

In other words, it's nice to finally be normal again (even if the definition of "normal" in this case includes jumping about 5 feet every time my phone rings b/c I think it might be "THE Call"). I'm still on IVs, but just Merrem, which I guess is the one antibiotic that seems to hit both my lungs bugs and the silly little critters that decided to infect my now absent port. My doctor and I had talked about stopping the drug on the 1st, which would be tomorrow, but seeing as my homecare company just delivered WAY more than one day's worth of new eclipse balls, I'm thinking I'm in this for the long haul. It's not particularly surprising -- there was some debate about whether I would need IVs for 4 weeks or 6 weeks to totally clear up this blood infection, and my guess is everyone's thinking better safe than sorry at this point. Hard to argue with that logic, believe me. Although considering I started the original lung IVs a week before we even discovered and starting treating the port snafu, I'm definitely feeling ready to be off of IVs sometime soon!

In the meantime, I think I have a little bit of port envy. I'm sure Freud would have a field day with that statement, but it's true -- I have rediscovered that I really, really, REALLY don't like PICC lines. Mostly this is just because I feel like I have to be more careful about my arm when a PICC is in than I ever did with my port (and for good reason: they clot easier and are more prone to infection). The big thing for me is my secret fear that this thing is going to actually rip out of my arm at some point, although that seems unlikely since it's actually stitched on there. (By the way, is that normal? I don't remember having stitches with my old ports -- 9 years ago, remember -- but this one definitely has two stitches connecting it to my arm right where the catheter leaves my body. It's annoying because they hurt under the dressing by pressing into my skin.) So yeah, in the upcoming weeks/months I have to decide if I want to 1) leave this PICC in for several months regardless of whether I'm on IVs the whole time and hope it lasts me to transplant (downside: annoying, plus have to deal with above-mentioned secret fear even while not on IVs, which seems unfair), 2) get this PICC pulled and get a new one if/when I need new IVs (downside: my veins are pretty much shot -- it took IR 3 hours to place this one), or 3) get a port until transplant (downside: I'm still a little gun shy on the port thing, just because of recent experience, plus it might have to come out with the tx surgery anyway, making it pointless?). Any suggestions out there from people who have been through this choice -- or something vaguely similar? All advice is welcome.

My other main focus right now (besides, you know, getting back together with friends and enjoying this great fall weather we've been having) has been on regaining some of my strength that I lost during this whole ordeal. It's fair to say lying around in a hospital bed, while sometimes good for your overall well being, is NOT good for your muscles. Seriously, for the first week I was out of there I would get tired after a 10 minute walk to the store -- and when I say "tired" I mean like 2-hour-nap-style exhaustion. Obviously part of that was just my body's need for continued rest since I wasn't totally healed yet, but a lot of it was just plain weakness, which I happen to think is both understandable and excusable after 4 hospital stays in as many weeks. Understandable, yes. Fun, no. So lately I've been trying to face the problem head-on and have gotten back in touch with my old friend the treadmill, as well as much outside walking as I can handle and my new favorite resistance training/core building exercise: gyrotonics. Love this. There is a great place close to my house where I can get private instruction a couple of times a week, and I'm totally addicted. Right now I'm going easy on the arms (see previous ramblings re: PICC issues, not to mention the surgery I had on the other arm a couple of weeks ago), but my legs and core feel amazing! You do work out with weights as part of this technique, but it's also very much about flexibility and working your muscles together as a complete system. I think of it as yoga meets pilates meets Sven the bodybuilder. Fun stuff.

The main difference in my exercise mentality over the past couple of weeks has been that the focus right now is on getting ME as strong as I can possibly be. I know that sounds really simple, but to be honest, for a while there after I heard the word "transplant" I wasn't really very focused on my personal well-being when I hit the gym. Weird, huh? Let me explain what I mean: I had heard so many stories (inspiring, to be sure) about people raising their lung function and getting off the list through exercise that THAT became my only goal. I was constantly waiting for some sort of "treadmill miracle" to take place that would somehow shoot my numbers up out of transplant range, banish all infection, and let me get back to a place where CF didn't always have to be such a huge obstacle for me each morning. But the fact of the matter is, the only thing I gained out of that whole thing was a sense of failure and a lot of panic attacks. (As an aside here, I'm sure it doesn't help that I'm a total "type A" personality and tend to be VERY hard on myself, and I'm also sometimes a rather unrelenting optimist, which is normally a great thing but here maybe led me to set my sights on something that wasn't entirely realistic for me.) The point is: I wasn't working out for me so much as I was working out for my NUMBERS -- and as anyone who's gone crazy trying to work out just to lose weight will tell you, it's a lot harder to really focus on getting healthy when you're too focused on a print out from some silly machine.

So now here's the deal: I would love to get off the transplant list, but I really feel that my best bet for doing so is to actually get transplanted. Don't get me wrong, I'd love to make these lungs last a few more years, and I do believe in miracles, but I also have faith that transplant will be a blessing and an opportunity sent from God, my donor, and a great team of doctors -- it will not be a failure on my part. Having realized this much is true (and, sheesh, it took me long enough), I'm going into this new stretch of exercise and life with the goal of becoming as strong as I can, whether that strength ultimately helps me to avoid transplant or to come through it that much easier when THE Call actually comes. And if the numbers on the machine never change for me again (or even if they go down), well, I'd rather be a strong and active 30% than a defeated and panicky one who wonders why she can't be a 35%. And right now I'm feeling strangely proud of all my cysters and fibros who push themselves to do what they can, because I'm more sure than ever that this game is about so much more than just the numbers.

As a personal sidebar, I completely LOVE using the word "fibros." Cystic slang at its absolute finest (and most ridiculous).

Stay well everyone.


  1. Im so excited your feeling better again!!!

  2. SO glad your absence is due to feeling fabulous, and not horrible! No advice on the PICC/Pull/Port dillema, I'm still contemplating a port - but thanks as always for your insights on working for YOU instead of NUMBERS. Needed the reminder, will be keeping it in mind. Cheers to feeling good, and Cheers to fall!


  3. FIGHT ON PIPER! So happy to hear that you're feeling better :)

  4. Well, ive officially been blown over by your strength, courage and zest for life that shines through in this post (and all your other posts too). To put it simply - your amazing.

    Im new to the blogging world, and started out blogging with my love of photography, but all that changed when i realised how many people there werew on here like me, with CF. I love to met new people with the same disease, and will now oficially be a daily reader of your blog.

    (Oh, and i think its pretty normal for your PICC to be stitched in, mine is...although some doctors tend not to do it)

    Much love, and keep being amazing x

  5. I had stitches for all of my PICCs except this last one because well, I HATED when it came out! The stitches hurt when they came out more than the PICC did. I opted for the sticky tape stuff (brain fart at 6am sorry) and I liked it better since it didn't hurt but my anxiety level hit an all time high. I am just like you and worry endlessly that the darn thing is going to get pulled out! *Shudders at the thought* I would opt to keep it in until transplant. Sucks yes, but given your history, if you need IVs again 2 weeks after stopping, you will have to deal with getting it placed again. THAT would suck especially if those veins are shot.

    I'm glad you are feeling great!!!! I will have to take a trip up to NYC for the day sometime and we can do the tourist thang!!!! After this cold is gone of course :)

    Miss you girl and I think about you every day!!!!!!!!!!!!!!!!!

  6. stitches in your picc?? i've had about seven piccs (the last one was suppose to take 20 minutes ended up taking 2 hours...ugh so i feel your pain! i now insist they give me the highest dose of adavant drug possible since it is so traumatic getting it in!)
    i use a stat lock, which is a plastic clip thing, with extreme sticky tape to keep my picc in place, i work out and do everything with it. It's so secure. it's so sticky though, peels off a layer of skin each week when they change the dressing! ouch

  7. Hi Piper,
    I'm Jerry's wife. Good to see you today at the seminar! We should have bailed when you did. In other words you got the jist of it all and you didn't miss a thing! Your blog is great and I'm glad you're back on the blog scene and I'm even happier you are feeling better! Stay well!

  8. Hi Piper,
    I have never had stiches with any PICCs and I have had a lot. I just got my port about 3 months ago. I love it!I would be gun shy about a port too. I decided on the port after IR started taking more than an hour to get my PICC in. So I guess it is a toss up for you to deal with daily flushing of the PIC when not in use, hoping it doesn't get a clot or infection or getting a port, not having to deal with the daily flushing but still worrying about another infection. I know how I would go but the choice is yours.