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. 

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!

I'm feeling much better today! I got up around 6:30 and kept busy and accomplished a lot all day without a nap! No shortness of breath and less congestion than yesterday. I'm so glad that I wasn't headed towards another round of IV antibiotics. I can't wait for rehab tomorrow!

I went back to the ENT today to have another professional essentially pick my nose. Having quite a bit of pain now but the pain meds should be kicking in shortly, I hope. Pulmonary rehab went pretty good today. I'm feeling better than I did this weekend, but not back to how I felt Thursday. I completed all of my exercise rotations, though and only had to take a couple breaks during the last one. I had to increase my oxygen from 3 liters to 4, but I held at 93% after that. I know I should be wearing my oxygen more often, but I still haven't gotten over the self-consciousness of wearing it in public. I have the feeling that I'm going to have to put on my big girl panties and just deal with it!

This weekend was rough for me. I was constantly short of breath and very congested. I'm so disappointed because I thought I was making such great progress on Thursday. Maybe I over did it.

I had my very BEST pulmonary rehab session ever today! I felt so clear and hardly short of breath. It was fantastic! My oxygen saturation even came up to 98% at one point, when normally it comes up to 94% at most.

I went back to the ENT doctor today and had the sponges/splints removed from my sinuses. I feel SO much clearer and I'm allowed to blow my nose again. Although today having them cleaned out post-op was more painful than the surgery itself. He suctioned out my sinuses today. It was literally like a tiny vacuum on soft (and tender!) tissue. He even was very near the root of one of my teeth and I definitely felt that! I could feel my pulse in my cheeks afterward. A couple pain pills and a nice home cooked dinner took care of that and I'm feeling much better tonight. I go back in a week for another check-up. I tried to go back to pulmonary rehab today but riding the bike gave me such a headache and made my sinuses hurt, so I had to stop. Also, I go back to Minneapolis for an update evaluation June 5th. I'll be excited to see how I'm doing according to their machines. Hopefully I'll be back on track at rehab and feeling even better than I did last week!

So far, so good today. I slept very soundly and Zoe stayed close to my hip all night. I think she knew something was different/wrong with me. No bleeding and no coughing in the night. I've done a vest treatment with coughing and haven't had any troubles yet with more bleeding.

Today I had sinus surgery. This week the doctor's office had called me 3 different times to reschedule the time, so I wasn't shocked when I was there and prepped for surgery at 1030 and the doctor didn't show up for an hour. Way to keep the patient stress-free! The procedure went well and I was home 3 hours later. Mom and Dad came up yesterday and they're taking care of me today. We had an amazing home cooked meal by Mom! I just wish I could have tasted it a little bit more. All I had before dinner today was 2 pieces of toast around 2 after my surgery. They warned me to try not to cough or sneeze (as if I can control it) and NOT to blow my nose. I managed not to cough all day much until after dinner when I had to finally.

***NOT for WIMPS to read***

All of a sudden I felt the gauze under my nose get warm and I made it to the sink just in time to rip it off and have two steady streams of blood gushing (yes, that's the most fitting word) out of my nose. After I got that under control I decided against doing a vest treatment tonight because I just wasn't quite healed enough for coughing. I'm in a little pain tonight, but they gave me some meds for that. I'm hoping tonight I don't have to wake up and cough or have a nose bleed while I'm asleep.

Went to the doctor today for a one-month check-up after I ended IV antibiotics in February and my lung function was at 29% and capacity was 40%. I had been gradually feeling worse over the last few days so I'll be going back on IV antibiotics on Friday.

Last night I experienced something strange. I was sound asleep when my cat, Zoe woke me up. She was laying on the back of my knees, something she normally doesn't do. Once I realized she was there I was overcome by the tell-tale signs of a very low blood sugar. I stumbled to the kitchen to test it and it was 36 - one of my all time lows! I don't know if I would have woken up as soon without Zoe - I'm convinced she sensed that something was wrong. No wonder she was so tuckered out today - she spent the night and morning keeping an eye on me. My little hero! :)
Zoe wanted to nap today

2 weeks of IV antibiotics will end tomorrow! I went back to the doctor today and my lung function is back up to 30% (although I'd like it to be higher, I do feel a lot better) and my capacity is up to 45%. Not the best improvement, but good enough for now.
Company while infusing

 Minnesota went well. I'm not surprised to find that my lungs are a little worse than they were in May, but I'm feeling better than I was then. My Lung Allocation Score (the number that determines my spot on the waiting list) increased, so I'm that much closer to new lungs! I went back to the doctor yesterday and my lung function was at 27%, so I opted to go on home IV antibiotics for a few weeks beginning on Thursday. I figure that since graduating, I've got nothing better to do with my time than to take better care of myself! Now all I have to do is get motivated enough to exercise!

I'm headed off to Minneapolis for my 6 (but really 8) month check up to keep my status current on "the list" It's going to be a long two days, especially becase we check out tomorrow morning and don't fly out until 9pm so treatments will be few and hard to come by tomorrow. Plus now that they've made flying really really difficult for people with oxygen, liquid medications, disabilities, that it will surely feel like two days from hell. I just can't wait to get back already!


I had company during a morning treatment

Zoe, sitting on the bak of my chair