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!!

Home from the Hospital

I was admitted into the hospital on 10/14. Nothing major, just I knew I was getting sick and figured I could get my testing for Cleveland completed. I needed to have a pH probe, an esophagram, and a right heart cathaterization

• pH Probe: Not too bad. It was a small flexable wire that was guided up my nose and down my throat. Once it was placed it was just annoying. It kind of felt like I had a popcorn kernel stuck on the back of my throat. Those results came back within the normal range for acid reflux, so yay for me!
• Esophagram: This was to replace the esophageal w/ Manometry that I wasn't able to complete last July. It's basically an upper GI. I drank this chalky drink which was flavored a chocolate flavor (I love going to a Children's hospital!) and that made it tolerable. It showed that I had a slow emptying time for my stomach (which we already knew) but that everything flowed in the right direction and had good movement.
  
• Right Heart Cath: This one wasn't that pleasent. It wasn't hard though... I was asleep for it! They instered a cathater into my femoral artory and vein and guided it up to my heart. While in the heart, they take internal blood pressures from the right side of the heart. These numbers can indicate how severe the lung disease is. Mine is slightly elevated indicating I have lung disease (surprise!) and these numbers will give me my placement on the transplant list. The downside to this test was the massive bruise that I had on my right inner thigh and the soreness from having to lie flat for so long.

I had my yearly appointment recently. I've talked to my CF doc and transplant docs about having kids post-transplant. None of them were too happy about that idea, but said that if I wanted there was the option of serrogacy. I brought it up to my GYN and she gave me some info on it. How they harvest the eggs and such. She also said that since they don't want me to get pregnant that I may want to consider getting my tubes tied. Pills are frowned upon because the horomones can play with the medication post-tx. An IUD is a foreign object and could potentially stimulate my immune system which is not good post-tx. It could cause complications and rejection of the lungs. Then there's barrier methods but my doc said that they are really only 85% effective. So have a few options on sterilization, but eek. I never thought I'd be sitting here at 24 years old and considering this. My other option is to wait and have my husband (when that day comes) get a vastectomy.

I don't know. A lot to think about... but I go back to Cleveland on Monday, so I can talk to the doctor then and see what they think. I have a sleep study tomorrow though, so I'll be busy for the next few days!

Back from Cleveland

So Mom, Cameron and I are all back.

After the power was knocked out Sunday night, it was good to get to leave. Just wish it was for better reasons, like a vacation to the Bahamas :) We took a bunch of our food to Teresa's though, so at least everything wasn't lost.

I've waited awhile for me to post about Cleveland because things were up in the air. I think I understand where I stand now... so here it goes...

Cleveland was just like the last time. Get there, blood work, chest x-ray, meet with the social worker again (she's now signed off on me, I'm mentally stable and ready to go through with transplant, haha), and then I met with Infectious Disease. Since CFers grow a lot of stuff, I've been meeting with people from ID for the last several years now. Nothing new was said by then, other than they were surprised that one of my bacteria was sensitive to Doxycycline. I guess it typically isn't, so I guess I can be thankful for that. Then I met with the pulmonologist. After reading my PFT, he stated that at this time I was too healthy for a transplant since I had a slight improvement from my last PFT.

I felt like the rug had been pulled out from under me. I had spent the last 3 months getting myself ready to tell them I was ready to get the transplant now only to have them tell me it's not time. Why can't we be ready at the same time?! The doctor then told me that they would discuss me at the next meeting, but I wouldn't be placed on the list until I was "presented" at one of these meetings. The meetings are held every Monday.

Now they've had the meeting (after much drama) and have decided that it would be best for me to continue with the testing. I have to do a barium swallow (replaces the esophogeal w/ manometry), I have to do the pH study but there's 2 options there (bravo or a small probe that goes up my nose and down my throat - both icky), and I have to have a right heart catheterization which is the test that will give me my placement on the list.

I will return to Cleveland in November and hopefully that'll be the time that they decide to list me. I just want to be listed and have that part of the waiting over with.

I'll keep ya posted

Doctor's Appointment

I had my appointment yesterday and things went well.

I am officially at 106lbs and my PFTs were up just a little. I'm sitting at 24% now. I also got the news that I don't have to go back to University for my admissions... I can go to Children's without jumping through a million hoops :)

Tuesday's still there scaring me a little... just nerves from having to go to Cleveland. I thought it would get better each time I go up there, but it's just as bad (if not worse) as the first time I went.

*sigh*... I'll let you all know how everything goes!