Routine Doctor Visit

Had a regular appointment with Dr. Trapnell today. Nothing big to really report on.

I'm up 4 1/2 pounds since August and my lung function is about the same, which is good. My goal is to gain more weight and try to avoid as much of the crap that's going around as possible. I also will be starting full time oxygen, but that's to help me be able to function better. Last, they changed my BiPAP levels so hopefully I won't burp as much during the night.

That's all that happened. Have a Merry Christmas everyone!!

The List

So I think this was the most nerve wrecking day of my life. I got the call from KJ saying that they needed my emergency contact numbers so that she could place me today. As of 2:30pm on 12/12, I am active on the transplant list in Cleveland. I have taken my anti-anxiety med and I think it's working... but I still have my heart skip a beat every now-and-then. Now the really hard part begins.... the waiting!

Cleveland News and Then Some

Wow, I've been so busy lately that I didn't realize that I hadn't posted a blog in a few weeks!


I went to see the Wizard of Oz on stage. It was AMAZING... but I'm a sucker for the Wizard It's always been one of my favorite stories. They had a real ToTo and everything! Just my Mom, sister and I went to see it and had a great time. It's not often that I get Kelly away from her friends - haha!

That Friday I was officially sick. I couldn't get off of my O2 without my sats dropping into the low 80s. So I got to break in the new port with 3 IV antibiotics. By Monday I was feeling a little better and was able to step off of the O2 for a while.

Tuesday I left for Cleveland for my last appointment before they presented me. 4 hours driving up for a 20 minute ENT appointment to drive 4 hours back... all in one day. WHEW! But the ENT said everything looked good and didn't see any major risk of my sinuses infecting my new lungs. A definite relief

Thanksgiving was great. We only celebrated with my Aunt, uncle and one cousin, but it was relaxing and nice. I didn't do shopping the day after Thanksgiving like I normally do... just not enough spunk this year to get up at 5am to be in a crowd of germy people. I think the idea of transplant has made me into a slight germaphobe

I had a sleep study last night which was to titrate my BiPAP... I wasn't allowed to use my nasal pillows and had to use the nasal mask. The bridge of my nose is so sore right now... But I should be getting my BiPAP machine soon. I liked it when I was in the hospital (maybe I should say tolerated... not so much liked) and I feel like it will benefit me.

FINALLY... I was presented at the Lung Transplant Selection Committee and Cleveland has approved for me to get a double lung transplant. Ohio is a little goofy and requires cases be sent to a consortium but Cleveland said it's a formality for them. So basically, I will be on the list in 3-10 days, depending on how quick the state moves. I think I'm still in shock a little.

It feels like all of this is just happening so quickly, but I think I'm ready to take that next step in getting on with my life. Everything has been put on hold for too long now and it will be nice to just be able to do for myself!!

New Port

So I had my old port replaced last Thursday and recovery has been going well. It's still tender to touch, but nothing too bad. If I know I'm going to be moving my arm a lot, I just take a tylenol before hand and I'm good to go!

I got to see the Wizard of Oz last night at the Aronoff... it was wonderful! Mom, Kelly and I all went and we had a great time.

My next thing on my list is I have my post-op exam on Monday and then I go back to Cleveland to see their ENT folks on Tuesday - eek!! Wish me luck!!

Home Again Home Again....

So yesterday was the eternal day at Cleveland... AH!

Mom and I drove up there Sunday night and stayed at this beautiful hotel. It was a little on the pricey side, but that's what we get for waiting until last minute to book the reservations, right? haha.

So Monday started at 8:05 with bloodwork as usual. Followed by a chest CT and x-ray. I then had the opportunity to meet with one of the surgeons who was very nice. He explained the surgery and the risks, which I mostly knew about at this point. He did explain that who does my surgery depends on who's available (obviously) and that will determine which incision I have. 2 of the surgeons do the clamshell (basically follows the underwire line of a bra in a "w" shape) and the other does the one straight down the middle of the chest. If I had my choice, I would rather have the clamshell for aesthetic purposes

We then had a needed break for lunch which I picked at my food. I never eat well when I'm there, too many nerves! Then we were off to get my echo done. I had one done a while ago here in Cincy and it revealed a small hole in my heart. They said this was normal and most people have one and that it shouldn't cause any trouble. Cleveland wanted it to be repeated. They thought the hole was a little larger than what they like so they wanted another look. Everything looked good and the hole looked smaller this time, so that's one more thing checked off the list

I then did my pft and met with the pulmonologist. Dr. Budev was AMAZING! I asked a bunch of questions and she had answers. She decided that I am in the window of transplant, but I'm on the very healthy side which is where they want me to be. I will go back to Cleveland on the 25th to see the ENT folks and then be presented before the tx board on Dec. 1st!!! She sees no problem with listing me. Ohio has a state board that transplants have to be approved before, but for Cleveland it's more of a formality. Cleveland does the 2nd largest amount of transplants per year in the US, so experience kind of says it all to Ohio So I will most likely be on the list by mid-December!

We also talked about the fertility issue. She strongly advised against me having my eggs harvested because of the hormones that you need to take prior. It an cause really bad pulmonary side effects, so besides the fact that I don't think I can financially afford it. However, she said that if I chose to adopt, she would be my advocate and support me every step of the way. Not the exact answer I wanted, but glad to know that I have someone who would support my other options.

And that's Cleveland for ya! I gotta go get ready for my trainer! I'll be sure to post more when I know anything!!