Active again... just waiting and preparing now!

update

It's been a week since I've been off my IV antibiotics and as of then my lung function was still returning after having been on the ventilator during my gall bladder removal. My abdominal muscles are finally feeling better, I can sit up and cough without pain. I'm not even taking anything (for pain, that is!) anymore. The incisions have healed nicely; I was very impressed with the laporoscopic procedure and glad they were able to do it that way. Next up on my list is getting reactivated on the transplant list. I will do it, knowing that I may be called any day.. I'm excited and also nervous. 

Holiday Surprise!

The surgery went well and I'm back in Wichita recovering. My lungs took a dip, which was expected, so I'll be on IV antibiotics for another week.  When we pulled into our drive way I saw my aunts' cars there and assumed they wanted to see how I was doing (and check out my neat incisions).  What we found when we walked in the door were poinsettias, a decorated Christmas tree and holiday music playing!  Some of the family had gotten together while we were gone and decorated our house for us! It was such a wonderful surprise, and really cheered me up, along with Mom and Dad!! I'm so glad to be home for Christmas! 

DVT

My arm today, the day after surgery (in the mirror). My left arm is almost double the size of my right arm because I have a blood clot (Deep Vein Thrombosis) near my PICC line.  They're going to start me on Lovenox injections (for 3 months) which REALLY hurt, and remove the PICC and place one in the other arm, since I'm not done with my IV antibiotics.

surgery day

I'm getting my gall bladder removed today at 3:30. I had my lungs tested this morning and was shocked - my function was 32% and my capacity was 62%!! I haven't had this good of a result in over a year. All of your prayers might just be working!!

just a hiccup

Transplant is on hold again - I'll be going up to Omaha next week to have my gall bladder removed at UNMC where my pulmonologist is, so that they may monitor my lungs and would be prepared to deal with any complications, should they arise. I will be re-activated on the transplant list once I am back in Wichita and fully recovered from the surgery.

More Ink

I got 3 more tattoos today.  Gotta get 'em while I can!

The two words mean Truth and Justice in Latin and were stolen (yeah so sue me... but, really, don't) from the cult classic movie, The Boondock Saints, one of my all-time favorites.

 

The circle with the triangle inside stands for unity, service and recovery. 

The one on my back is the most meaningful and I got as a reminder and to bring awareness to others about Cystic Fibrosis.  I am just one of 30,000 Faces of CF in this country.  My struggles aren't unique and are not the worst.  There are so many who have not been as lucky as I have to be as healthy as I am.   I don't want to forget that.

loaded update

 I've had a busy past 10 weeks! I did NOT have H1N1! Since my last update I've been on IV antibiotics, traveled to Omaha to see my doctor, traveled to Minnesota for another biannual pre-transplant evaluation and been re-listed on the transplant list! I've also learned that I have gall stones and am waiting (not so patiently) to hear back from my doctors about whether they will remove my gall bladder before transplant or wait to do it during my transplant. I have been told that I'm "very callable" and that "there aren't many people ahead of me" on the list. This is exciting news! I am preparing to receive a call any day. Please pray for my donor's family, as they will be experiencing a great loss just as I am given a new chance at life. Hopefully the next update will be news about a call!!

My first tattoo

I finally got a tattoo today! I have been wanting one for years and decided that I'd better do it before I get my call for new lungs.  They discourage people who are post-transplant from getting tattoos because of the time it takes to heal.  They don't want someone who is immuno-suppressed to have any more wounds than necessary!

It's backwards, but it says Veritas, which means Truth in Latin.

slacker

 I know it's been months since I've updated this, but I thought today would be a good opportunity to fill you all in. I've been feeling feverish and lethargic for almost a week now (a friend's kid was diagnosed with H1N1 shortly after we were snuggly on the couch) so I was worried I had contracted the virus. I went today for PFTs and they were the same as they had been a month ago, but I wanted to start some IV antibiotics anyway, and Tamiflu, because I need all the help I can get. If anything, I'm hoping I'll feel better in a couple weeks and that's all that matters for now. Will update this again when I get the results of my H1N1 swab.