Monday, June 21, 2010

Another Tube Bites the Dust!

Hi lovely readers:

Today has been a bit of a roller coaster. The great news is that we were able to get blood from my veins - MAJOR step in the right direction. I don't know whether I mentioned my clot on here, but I ended up with a small DVT from the surgery/neck catheter. This wasn't unexpected since I've had clots before and it makes you forever prone. It also hasn't been much of an obstacle, especially considering that I know how to give myself lovenox shots, but it did make for some difficulty getting a good vein because the other arm was being used for a heparin drip. The end result was some painful sticking and an eventual arterial draw that really kind of sucked, but knock on wood we seem over that hump.

The not so great part of today was that my magnesium levels were off and I ended up having really painful back cramps. I went back to two percocet from one every 6-7 hours just because I really needed to stay ahead of the pain. Luckily they were able to identify the imbalance and correct it by early afternoon, so I got in my physical therapy and was able to avoid muscle relaxers. One thing I will say: transplant is a time to push yourself but also to be kind to your body. I love the high I get from walking a little further each day, but I also enjoy not being doubled over in pain. It reminds me of the Kenny Rogers' song "The Gambler" -- know when to hold 'em, know when to fold 'em. It's also such a great lesson in both pushing to achieve and in not being obsessive about it all. I know progress will continue to come and I feel very at peace with where I am a little over a week out. It sounds funny, but I'm content to do my best and accept my accomplishments, which is a great milestone for anyone anal enough to enter the legal profession!

The highlight of the day, without a doubt, was the removal of my 3rd chest tube. Only one left, and feeling more human everyday, as my friend James so perfectly put it. Much as I loved being half-robot, it's fun to feel little changes as my body returns to its normal state -- albeit a new and wonderful normal. Goodbye, tube, and thanks for the memories. Hope to see you again never!

So there you have it. Loving every minute - well, aside from the painful ones - with these new lungs. It amazes me again and again how precious these lungs feel, how grateful I am for the chance to live. I wake up in awe that God and my donor could bring me such a gift. I go to sleep literally smiling. I feel such gratitude for so many things, it honestly feels as though I might burst. I'm a broken record repeating again and again how happy I am, I know, but I don't even want to try and stop. So instead I'll just thank you all for listening, again.


- Posted using BlogPress from my iPhone


  1. Amen is right! I wanted to tell you about my experience with back pain postsurgically. It was AWFUL! I am not sure if the mag. being off was the reason for you pain, but if you had any back pain before, you come by it honestly. Sara had it too, if I recall. It was one of my biggest "complaints" after surgery. It hurt! I think the actual way they open ya' up is the culprit. If you need the muscle relaxers, take them!

    I hope the back pain was only temporary for you!

    also so glad you lost the third chest tube! By the way, my sister also older) called my chest tube scars "alien scars" because they are so weird looking in the beginning with the dots on either side of the line! LOL!!!!!

    Love ya! Praying for no more back pain, for no more blood clots, and removal of the final chest tube!

  2. Hi Piper! I'm Jennifer Fierro's sister...Jerry's sister in law!!! I have been reading your blog and just wanted to say how happy I am for you! I can't believe how much you are writing while still in the hospital but it just shows your determination! Your previous posts really gave insight into everyday life with CF. Although I know how difficult it is...your posts gave me such a better understanding of exactly what Jerry goes through and what all people with CF have to go through. Thank You. Congratulations again!! I know every day will get better and I wish you a speedy recovery and that you get home soon:O) God Bless.
    Joann Feeney

  3. Hey Piper,
    The shirts arrived! YAY! Thank you Godmother Piper! :)

    As I was reading your first paragraph I was thinking about how your lawyer background probably comes in handy with setting your goals during recovery - and was going to ask you about that. And then you mention it in the next paragraph! Are we on the same wavelength or what? LOL.

    Glad you're doing better and GOOD BYE to that chest tube. Congratulations!! ~Juliet

  4. We got our shirts in the mail today. I washed them right away and will be wearing mine tomorrow when we go to Penn for Jim's respritory and physical therapy, meet with the nurse coordinator and have the ultrasound. I'll try to remember to send you a picture. Glad to hear you are doing well!!

  5. What a great feeling when those tubes come out! Keep up with the posts because I love to read how great you are doing every day.

  6. Niiiiiiiiice! Keep moving right along, Piper!

  7. I had a DVT from my neck cath too and still take the lovenox shots, they make you bruise pretty bad but breathing is worth it!

  8. Just keep smiling! It is the cure to most anything :)

  9. yay on the tubes getting made a world of difference for me when they were out! You'll be home before you know it! Good Job!

  10. Piper...So glad to hear about each step you are taking. We have prayed for this for so long and to see you living the answer to this prayer is amazing. We are so thankful to your donor and the gift that he/she gave to you. I send prayers of gratitude to this person and prayers of healing and grace for the family. Seriously, each time I read about how well you are doing I well up with happiness. Love you so much cousin!!

    Love, Glo
    PS - How does October sound for a visit?

  11. Piper please don't apologize for repeating your excitement and gratitude. I find myself tearing up and smiling a big cheesey smile when I read about your sincere gratitude to God and the donor. I want to hear more any more details about your deep breaths, strange non-coughing silences, etc.

    Also- we recieved our lung shirts yesterday!!! To remind you, I am the meteorlogist/mom/wife/runner etc in Oklahoma with CF. I get to see my sister (also with CF) in two weeks- she lives in Anchorage so this is a big deal- and I am pumped to surprise her with a new set of lungs :) Albeit blue screenprinted lungs- but exciting all the same.

    Keep the updates coming! Every update brightens my day and gives me more specific things to be praying for!

    (gentle) hugs :)

  12. It makes me giddy to read how happy and grateful you are, so please don't stop if it's how you're feeling. I can only imagine how wonderfully grateful I myself will feel when I go through the same thing. You said we were transplant twins, so I'm expecting a lot of the same emotions when my day finally comes. Thank you so much for virtually holding my hand through this process that, for so long, we sort of walked together.

    I'm so proud of you!