Andrew's first Thanksgiving

I know I've gotten really bad about updating my blog. What can I say, it's hard to do when you're busy :) and I like it that way :) but this is my late Thanksgiving entry.

I had today off work and didn't have any appointments, so I spent most of the morning catching up on my fellow CF blogs and forums. So much has happened with them, including a lot of CF deaths. It just hits on a deep level that is hard to describe. There's been a few CFers that have received their lung transplants, which always makes me smile. Then there's one cystic who's blog I've been following, she's #1 on her list right now. Maybe she'll get lungs by Christmas! Reading everyone's transplant journeys makes me remember my whole experience and I can't help but smile. While it was one of the hardest things I've ever done, the rewards I've received after have been wonderful!

It all reminds me of all that I have to be thankful for this year. I'm alive... above and beyond anything else, I AM ALIVE! Truth be told, I wasn't sure I was going to be here this year for Thanksgiving. So I leave this entry with just a simple thanks... Thank you to all of the organ donors (especially mine :) ), to all of the members of CF.com which have given me such support, and most of all, my family. Without them I wouldn't have had the strength to get through this last year.

Yay!!

So it's been a month since they biopsied and collapsed my right lung. That's all healed and I'm returning to dance tonight. I didn't quite feel up to dancing since I was dealing with the pain in my lung. It wasn't constant, just when I took a deep breath. Ya know, the thing you do when you're dancing and exercising :)

I started working last week. Most of Sunday I spent with my head in the toilet because of an antibiotic I was taking for infiltrates they saw on my xray when I saw Dr. Trapnell. They stopped the antibiotic and I felt much better. Thought I should give work a try since I was scheduled and knew I wasn't contagious. So Monday I went in and tried to work 11-2. I spent most of my shift sitting in the back office because I kept getting light headed and whiting out... not black out, white. I think it was because I was dehydrated from being sick Sunday. I worked again on Tuesday and only had to take one 5 minute break because I felt a little weak. I worked again on Friday and that went much better.

Thursday I was back up in Cleveland for the repeat/9 month bronch. Cleveland does bronchs with biopsies at 3 weeks, 6 weeks, 3 months, 6 months, 9 months, and one year. Then I'm done unless a problem comes up. It was the never ending day... 7:30 started it all with bloodwork, like always, and my bronch was at 3:30. We finally got in the car around 5:30 and didn't get home until 10pm. Dr. Budev did my bronch this time and said that everything looked wonderful but wouldn't be surprised if I had a slight amount of rejection because of my anti-rejection med levels being pretty low. Well, here's the best part. I talked to Cleveland today and everything about the bronch came back negative. So I have to reduce my prednisone and I'm off all of my antibiotics as of tomorrow! yay!

So off to work I go tomorrow for 3 days and then tap on friday :) Life's good again :)

Well, Hell.

So I've just about had it with my luck. Or maybe I should look at this situation as I should start playing the lottery.

So after my last entry, I continued dance classes. My muscles aren't liking me too much, but oh well. I missed classes on Thursday and Friday because I had to go back up to Cleveland. This time was to have a repeat bronch to check to make sure my rejection had cleared. I still don't have the results of this, but I was rewarded with a hospital stay.

On our way home Friday, after the bronch, I felt a little sore. I figured it was just from the biopsy and got in the car and fell asleep. When Mom and I got home, she woke me up and the pain had gotten worse. Wonderful. So I called the clinic to see what they thought I should do. "Go to your nearest ER and get 2 chest x-rays, you probably have a pneumothorax" Great! So Mom and I get back into the car and go to the Children's Liberty campus. They know me well there now...

Sure enough, the doctor came back in and I have a slight pneumothrorax - collapsed lung in fancy terms. After talking with Cleveland, they decided that best course of action was for me to be admitted for observation and to recheck my xray in the morning. I breathed a sigh of relief because they weren't talking about placing a chest tube... which is what I was expecting. So Saturday afternoon comes, it's time for the xray and I can't sit up in my own bed let alone move to a wheelchair. They had to transport me to xray in my hospital bed. I always feel so embarrassed being transported in my bed, I don't know why, just do. But we got the films and surprise, not only has the pneumothorax worsened, I now have fluid building up on the right lung. Fan-freakin'-tastic!

At that point they decided that they were going to observe me one more night and that they would give me real pain meds, not just a couple of tylenol. So once the morphine kicked in I was able to finally lay on my back. Up until that point the only comfortable position was on my left side. Sunday they made the decision that Cleveland wanted me up there, so transport was being arranged. I had an ambulance take me to Lunken airport, the plane flew me up the 40 minute flight, and then an ambulance from the airport in Cleveland to the hospital.

So now I'm back here at Cleveland Clinic. My blood culture results showed that I have some bacterial infection going on, so I'm back on IV antibiotics. Hopefully I'll be able to get home and away from the germy hospital Thursday, but we'll see. Next week I'll resume dance, I've been tutoring my neighbor after school for homework help, and I'll be starting back at Wendy's. Yes, I said it, I'm going back to Wendy's to work. What can I say, I'm poor and I'm bored and I know the manager will take care of me there! I just have to make under $980 a month and it won't touch my benefits at all.

There's more details, but I'm tired and this is getting long. I think it covers the general idea of what I've gone through this last week. Just gotta keep my head above water for right now! right?!

A little sunshine will do you good

So this increase in prednisone is killing me! I can't seem to stop eating and it's making my blood sugars so hard to control. Oh well, if a few extra shots means I gain a few extra pounds, so be it. It can only mean that I get this button out quicker, right?

The 9th was Cameron's birthday and we celebrated by going to P.F. Chang's for dinner. We ate so much food but I was still hungry when we left. Go figure. But that was the extent of what we did. We're trying to save our money so we can go to New Mexico to visit his family. I don't know if that's going to happen though with all of the flu things going on, my center is a little timid about me traveling. Especially with my white blood count doing funny things.

My WBC was low when I had all of my blood levels checked Tuesday, so they wanted it re-checked when I went for my yearly labs on Friday. I also had my full yearly PFT that day and my lung function has increased again! I'm now at 67%, which makes me almost tear up since it's been so long since I've seen those numbers and felt this good. To have a test show that makes all of the struggles I've gone through completely worth it. But anyway, the WBC came back a little higher, but they weren't able to do a differential (tell what kind of white blood cells there are) because the sample was too degraded. Lab error. I understand that this can happen, but dammit!! So Cleveland wanted me to repeat my labs Tuesday. I talked to them today and they said that my prograf levels were high and they had wanted me to have all of the blood tests redrawn, not just the CBC, so back to the lab I go on Monday to be poked again. Just what everyone wants to hear :)

Last Thursday Cameron and I were able to get out of the house and go to a play. We saw Sleuth at Playhouse in the Park. It was good, but I don't think I could see it again. The part that made it good was not knowing what was going to happen next so I think it's a see it once kinda of play.

Sunday I went the to renaissance festival with Adrianne and Sherri. I had never been to it before, so it was nice to finally be able to go and do all of that walking. I was tired after, but I like being this kind of tired. It's so much more rewarding than being tired from simply breathing!

And here's the best news : I took my first full dance class in 5 years!! That was Monday night and I was by far the worst in the class... all of my technique has disappeared! The important thing though is that I was there and I wasn't that short of breath and I finished it!! I'm still so sore though!! Back for more classes tomorrow night and then again Friday afternoon. Kelly and I are in the middle of picking out a song to do a duet to, which I'm pumped about!

Oh, and my neighbor's sister's results have all come back negative! It's been a very good week :) Beautiful sunshine and wonderful news all around!

OI!

So much has happened in the last month. It started out great with being able to go to a Red's game with Cameron and Jesse - a friend from WKU. They lost pretty bad, but I had a blast,even though I ripped my jeans falling on a curb! Cam and I went to his wedding a few months ago and it was great to be able to see him since he lives farther away.

A couple weeks after that I made my first road trip without a ton of medical supplies. It kind of made me giddy to just have a tiny duffle bag :) I went up tp Columbus to visit my friend Michelle. Other than the meds making me feel super sick when I was heading back home, it was a wonderful trip!

Once I got home I repacked for Cleveland for my 6 month visit/bronch/biopsy. I had such nerves going in to that visit but everything went fine during the exam. When I got home my Mom told me that one of my CF friends was sick and on a vent. His name is Danny and had his transplant almost 2 years ago. The following day Cleveland called and told me I was in the early stages of rejection again. Nothing big, just increased my prednisone and I have to go back October 2 for a repeat bronch to make sure it clears.

That Friday my boys came in from WKU and we all went out to dinner at a fancy restaurant. It was so much fun to see all of them (4 guys and me for dinner - kind of interesting) and it reminded me of how much I miss seeing them all the time like I did at school. The bad side to the night was I was home just a few hours after dinner sick in the bathroom. It was either food poisoning or a "gallbladder" attack. I say that in quotes because I no longer have one, but that's what it felt like. I spent the rest of the next day puking and in bed. Oh, did I fail to mention that it was my 25th birthday that day? Happy freaking Birthday! I felt better on Sunday and we celebrated everything then. I was even able to blow out all 25 candles on my cake in one breath - because I GOT NEW LUNGS!! It was awesome :)

Found out recently that my neighbor's sister has breast cancer so please keep her and her family in your prayers. Also, keep Danny's family in your prayers - his funeral was today. That's all I can really talk about those things, it's all still too new, too close, and too painful right now.

That's all of things for now. I should have more next week after a few more doctor appointments, Cameron's birthday and a play. Gotta stay busy and keep my mind off things. I may have to find a job to keep this much off my mind :)