Monday, October 5, 2009

Light(s) at the End of the Tunnel

Some of you may remember my rant about going to the dentist and learning that the dentist needed medical approval from the tx team in order to examine me/clean my teeth. The transplant team then turned around and demanded medical approval from the CF team b/c they're not my "primary doctors." So then my CF team finally gave clearance, which allowed the dentist to finally, finally, finally give clearance to the transplant team. Keeping in mind that in between getting all the medical clearance and actually returning to the dentist for the examination I ended up in the hospital three times in just over two weeks and you can probably begin to understand why I'm so excited right now. Because . . . (cue drumroll) . . .

As of today, I have officially completed every one of my dentist's pre-transplant "recommendations." Seriously, this is a HUGE milestone.

See, my dentist thought that my teeth were in fairly good shape overall. He saw two fillings that he thought were loose and wanted to fix them preferably pre-tx b/c loose fillings can 1) fall out, and 2) become a good place for new bacteria to grow in the space between the filling and the tooth. And since they don't recommend having any dental work done until 6 months after tx, we decided now was the time to take care of those things (although he said if got THE Call I could still accept, as he thought the fillings would likely survive 6 months anyway). He also wanted to do a root canal on one other tooth, which I was kind of nervous about having never done one of those suckers before. So I managed to get the fillings re-filled (capped, actually -- we went with the "better safe than sorry" option since they were two small fillings in the same tooth), and then I was left with the root canal. Definitely not something to look forward to.

Well, for anyone considering a root canal in the near future, I have a slight suggestion: have risky and complicated vascular surgery to remove an infected port without general anesthesia three days before your scheduled dental appointment. This fool-proof method of making a root canal seem easy has a number of perks, including: 1) your left arm will be sore because it will have three large incisions healing on it (no pain meds were offered, and I didn't request any, but it honestly wasn't too bad) -- the pain will distract you from the root canal unpleasantness, 2) your right arm will be slightly sore because of the PICC line and residual phlebitis from the blown peripheral IVs -- again, more distraction, 3) you will, I promise, have sudden flashbacks to your time in the OR prep area every time you start to get nervous over the root canal, at which point your brain will basically sigh with relief because the comparative risks of a root canal are so totally not worth stressing out about. Believe me, it works, and thanks to the miracles of novacaine and advancements in dentistry, I can honestly say the root canal was no big deal at all. I think I was in the chair all of maybe 45 minutes, although that may have been because my dentist has a periodontist on staff who does nothing but root canals, so he's super good and efficient. Lucky me.

So yeah, I got the root canal a little over a week ago, and today they finished it by capping the tooth to once again guard against any future infection. And now I'm totally and completely done with the dentist (aside from, of course, regular cleanings and check-ups). In other words, check another thing off the pre-tx to-do list, please!

Anyway, now that that's all over, I also have a CF appt tomorrow, and then on Thursday I have a surgical consult to check out my wounds from port-fest 2009 and, um, to check out my other arm for the placement of -- you guessed it -- Piper's Arm Port II. I got word from my tx team that they are willing to leave arm ports in for CFers because you often end up needing IVs within the first year after tx anyway, plus everyone is on IV drugs for at least a little while immediately post surgery. It is clear that I'll need to get it taken out once it seems like my need for IVs is less (probably within or right after the first year), but since there's no guarantee of how soon I'll be transplanted and I don't want a PICC in my arm all year, not to mention the fact that I don't want to have to have a PICC placed every time I need IVs after tx as well, I've decided to go ahead and let my favorite vascular surgeon put another port in place. And yeah, because of my history it has to be done through surgery (again, no general anesthesia obviously) instead of IR. But the same amazing vascular surgeon who got me through the amazing port debacle has told me he'll be glad to handle my next placement. So I know I'm in great hands, and I'm actually pretty stoked to get another arm port, truth be told.

I also got my LTD from work approved, so I am officially no longer part of my Firm. Bittersweet, to be sure, but the right decision for now and I know I'm lucky in this economy to have this sort of option. I'll be applying for SSDI as well in the upcoming weeks in order to ensure I can get Medicare by the time my COBRA benefits run out. Definitely NOT the time to be caught without healthcare.

So that's the news. Next tx appt is on the 14th and I have to repeat PFTs and the 6 min walk. I'm almost positive my distance on the walk test will be lower than it was in May (I went 2200 feet at that time, which is apparently pretty good for someone on the tx list). The good news is that a slower walk would bump up my score, but I'll be bummed if it's too low anyway. And I know I'll have to wear O2 for it this time as well, so that's kind of a nasty milestone. This whole "24/7 O2 because my sats drop below 90 basically anytime I move more than 5 feet" has been kind of a rough pill to swallow. Since I'll be doing PFTs tomorrow at CF clinic I should have a pretty good sense ahead of time of what my score will be on that front. Hopefully I won't have dropped from my 33% a couple of weeks ago -- here's hoping I can even pull it up a notch or two! Again, it's kind of a double-edged sword with the LAS (lung allocation score, for the non-tx people), but I'd still rather be up than down.

The best part about all of this is that I've been feeling amazing lately. My aunt and uncle were in town this weekend from Texas and we took them all over, plus I've been enjoying dinners and lunches with friends, walks outside, and generally trying to make the most of the mild fall weather. I seriously love this time of year, so I'm so so grateful to be able to enjoy it. Just thinking back to where I was at this time last month -- honestly wondering if I would get out of the hospital at all pre-tx -- is enough to remind me to be grateful. Well, most of the time anyway.

Here is the picture of the week: gorgeous colored glass lights hanging from one of the stalls of the Grand Bazaar in Istanbul. I was honestly transfixed by all the color and light there and the picture doesn't do it justice -- it was like staring through the stained glass windows at the Saint Chapelle in Paris. I brought home a small one for my bedroom, but it's just not the same!


  1. Wow Piper you do have a lot going on! Glad you are getting out and enjoying life a me I know how hard it is getting used to the 24/7 O2, I just recently have gotten more comfortable with it. Its nice though once I did because I felt better so I was able to do a lot more than I had in a long time! The one thing I hate about being pre-tx is the no traveling!! I have a bunch of family on Long Island and my Aunt just got married on Sept 25th and I had to miss the wedding. I was so bummed...I love NY and I love visiting my family the last time I was there was 2 years ago and I am used to visiting once a year so I was miserable that whole weekend! :(

  2. Hi -

    Thx for the comment the other day - I've been a useless lump since I came back in the hospital this time so I am just now checking up on things.

    I had to have a filling done last week and I swear it took me a month to work up the nerve to get it done. I. HATE. the dentist.

    I was at 36% when I came in, so fingers crossed that after a week of three abx it will have gone up a little. I know your LAS is higher the lower you go, but - fingers crossed - I still hope your #'s are better this time.

    Time for another 4 AM round of benadryl, phenegran, and abx.


  3. Good luck with your arm port #2 :) I assume you are going for the right arm this time?

    Glad all your dentist work is done! I need to get cracking on that. Its been 2 years since I've been and I need a good cleaning.

    Lots of love!!!!

  4. I wonder if you've been feeling so great lately is b/c you're not working. Could that be? Less of your usual day-to-day grind? Well I'm happy to hear that anyways. It's amazing how we can adapt so well, huh?

    I'm so sorry to hear about ALL this crazy business. That's a lot of crap in a short 2 week period of time!

    I hope you can get on the SSDI soon before your COBRA runs out too.

  5. Piper, Congrats on Port #2 decision. It sounds like the right option for you. Afterall we all know that ports just LOVE Piper... so much that they just won't leave. :) Ha Ha.

    Glad to hear the dentist ordeal went well... even if you needed some rather warped logic (if I might say) to get through it all! LOL. Funny how you tell the story though. :)

    Best of luck with the 24/7 O2. What kind of gizmo did you end up getting? And is it airplane rated? Inquiring minds want to know. :)

    Take care & I hope those new lungs come soon! ~Juliet

  6. Hi,
    My name is Jamie. I found your blog through transplant buddies. . .I really hope everything works out! I have CF and was Cepacia positive. I received a lung transplant in Pittsburgh in 2007 If you have any questions about post transplant feel free to check out my blog and ask any questions at

    I am really open about my experience.

    I like how you say you have been feeling wonderful~ it is amazing how our bodies adjust and how our 'healthiest' days would make a 'normal' person wish they would die!
    Stay strong and good luck!

  7. I have enjoyed reading your blog. I am waiting for a double lung transplant in Toronto. I loved your dentist post, since that was just like me. I had all my teethed checked out and a filling replaced about a month ago.
    Wow, I can't believe you can walk over 2000 feet in 6 minutes. My last was just over 900 feet. though we measure in meters =)
    I will continue to hope the best for you!