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. 

back in business

It's been a busy week! My dad and I drove back to Omaha on Sunday to see my doctors. Visited the chiropractor, of course, too. Only news is that my lungs are the same as they were a month ago, which is GOOD! We came home on Tuesday. Zoe missed me - she and Skitter (the beast, my 15 year old cat) have yet to be friends. When Skitter sees Zoe, she growls, hisses and sometimes throws up if she's really pissed. Of course she also attacks any human who approaches her in this state, so we all just stand clear until she hobbles upstairs to sulk. Poor thing! I just hope she lives long enough to become friends, which Zoe so desperately wants to make.

On Wednesday I got a pedicure and bought a ton of books at Barnes & Noble. On Thursday I got my nails done and a hot stone massage. It was a fantastic two days. I have already devoured one book and am in the midst of reading five others! My room is now painted and we're trying to figure out what to do with my closet space, which needs to be remodeled badly! But of course the first thing my dad and I had to accomplish after painting was building Zoe a perch at my window, so she wouldn't have to stand on the bed to look outside. This cat is spoiled rotten! But she's worth it! :) This weekend we're going to focus on finding me new bedding and getting my built in drawers and cabinets cleared, painted and lined so I can start unpacking and moving some of my clothes and junk into my room. It's currently sitting in boxes and piles in the living room and etching away at my mom's sanity by the day. Kidding! But it is getting old having to rummage through everything to find something to wear. The good thing is a lot of it won't be coming upstairs, as I'm finally parting with clothes that I don't or can't wear. And maybe a couple pairs of shoes. Maybe.

All in all, I'm just chipping away at the whole process of unpacking and getting settled. I'm not really in a rush. Tomorrow I have a hair appointment (it's been almost 7 months *gasp*) with an old high school friend. I'm very excited to catch up with her! Our cats are practically engaged! Yeah - call me the crazy cat lady - but if you read my blog, you're going to hear about Zoe sometimes!

home is where ever I am :)

I have officially moved back to Wichita with the folks. I am really glad to be back! Zoe and I moved home Saturday with a big truck load of stuff that I'll be unpacking for (maybe) weeks! I will go back to Omaha next week for a slew of appointments but for now I am busy getting rid of clothes I don't need and painting my room yellow! I will get relisted in Minnesota once I am in touch with the medical flight company here in Wichita. Hopefully ASAP! The good thing is that I'm feeling well at the moment!

I got my PICC line out today, so I'm done with IVs for now! Since there was no change, the team felt another week wouldn't do much good. I was losing so much sleep doing them at home that it was becoming a problem. I was free tonight for the first time in two weeks and hit the College World Series. Unfortunately, it rained for two hours and we ended up taking off before the game (which was delayed) even started. And to think, there was only a 30% chance of rain and the heat index was 110 degrees at 11:30 this morning... all that sunscreen was a huge waste! The funny thing was that it didn't even rain on our side of town. Welcome to the Midwest!

I went back to the ENT today, got my bi-monthly nose-picking by a professional and it is still healing well! :P I also had PFTs today and they are completely unchanged from before I went on IV antibiotics, which is disappointing. I do feel better, though, which is always a good thing. I've also decided to move back to Wichita, KS with the folks! It'll be an adjustment, but I need the rest and the free time I'll gain will help me take better care of myself... and no one cooks like Mama!

Today marks the anniversary of when I was first listed on the double lung transplant list. I'm happy to say that I still have my own lungs and that they are still working enough to let me enjoy the times when I'm feeling well. I've been able to golf this spring and work out on a more regular basis, two things I couldn't do a year ago. I'm very optimistic about what the summer may bring!

Got my PICC line in today for home IVs and it went really well. Some pain, but it's less than usual. Have IVs Q12 and Q6, so at least I'll be able to get some sleep. I'll go back for PFTs in a couple weeks.

Went to the ENT today and my sinuses are continuing to heal well. Also saw the CF team and my PFTs were 28% function, 45% capacity. Despite this steadiness, I still don't feel as well as I did before the virus, so I'm going on IV antibiotics to try to get a little more back.

Got home safely from Minneapolis and found my lungs to be unchanged from January. I think that the pulmonary rehab kept me healthy enough to battle the little virus I had over Memorial Day weekend. Lucky for me, right?

Went back to Wichita over Memorial Day weekend and must have caught a virus or something. The past week has been a little rough: low grade fevers, shortness of breath, extra congestion. Good news about my sinuses, though. The ENT says they're healing beautifully after the surgery, so that's one thing that's looking up! I go back to Minnesota at the end of the week for another 6 month transplant check up. They like to see me every 6 months while I'm waiting for new lungs to track my health and adjust my placement on the list if necessary. I've had a week of small setbacks, not being able to attend rehab last week, and so I'm hoping that my lungs haven't dipped since January, because it's been such a productive spring, I'd hate to lose ground now!