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Tuesday, December 27, 2011

Cleveland Update

Hello World!

Well I went to Cleveland!

SUPER impressed with their hospital, staff and program. We (Me, Ma, and Gram) took 2 days to drive out there. The place we stayed at was part of the Hospital, it was awesome!! Hhaha, I mean they had a phone in the bathroom. It was a really nice place.

The first day was all bloodwork and PFTs. 1st blood test of the day... they took.... drum roll..... 35 TUBES!!I wasn't sure if I would have any blood left in me! Those vampires! Then I had a full Pulmonary Function Test (PFT) work up. The worst part of that was the ABG. Oh my gosh I HATE ABGs!!!! Those are Artial Blood Gas tests for those who don't know. They have to take blood directly from an artery. Usually in the wrist, where your pulse is. But I also found out in Cleveland that they can get it from the pulse in the crease of your arm. Well neither is a pleasant spot. Oh and Cleveland doesn't use lidocaine (numbing medication). I already have anxiety with needles, always have and probably always will. So to say I was upset while they did the ABG in an understatement. I was hysterically crying, almost hyperventilating. It was AWFUL. So the first try, the blood in the needle clotted before they got a big enough sample..... so they had to poke me twice! It was awful, awful, awful. My blood pressure is usually 80/whatever and after the ABG it was 129/whatever..... talk about stressed!

The 2nd day was all radiology type stuff. That day was fairly easy. I had to fast for most of the day so I was hungry all day. I also had to drink this yucky water solution for my CT Scan. It was water with a contrast solution so I glowed during the CT scan, haha. That tasted gross and I had to drink 900ml in 30 minutes. Thats a lot when you don't like the taste. They also had to push some contrast through an IV. That burned, very uncomfortable, it also gave me this sensation like I was peeing! I totally wasn't expecting that and totally though I was peeing myself on the table, haha. I was just thinking crap, another Kmart incident! hahaha. But nope, no pee, just a sensation!

Day three was the Social Worker, Transplant Team, and Surgeon. That day was LONG! The appointments were so spread apart we we there 7am-4:30pm. Those all went well. Really liked everyone I met.

We planned on heading back home the 3rd day, but the last appointment of the day got pushed back by 2 hours so we stayed 1 more night in Cleveland. We left the next morning at 7am and got back to our house around 8-830pm. It was a long day of driving, but we had to be home in time for Christmas! We weren't missing that. Not an option.

Overall it was a great, long 3 days. I'll know, officially, by the 2nd week in January about being on their list. I can't wait.

My gut says my perfect pair is coming Feb/March. 2012 - The year of the Lung!!!

Breathe Easy

Saturday, December 3, 2011


Hello World!

So Its official I WILL be going to Cleveland Clinic in Ohio (I live in New Hampshire) the week before Christmas (12/17-12/23) to meet with their Transplant team and hopefully get on their Transplant list. After that I will be listed at 2 places, so hopefully my chances increase!

I really had a hard time deciding this is REALLY what I wanted. For a few reasons. One being I have to be deactivated from Boston's list while I travel out to Ohio and back. This is because I will be going out of Boston's region. When I get back to NH I will be placed back at the top of the list but for a week I will be considered "inactive." So lungs, DON'T come that week, I don't want to miss you!!

Another reason I struggled a little with this choice is because of my Dad. He has stage 4 colo-rectal cancer and goes to chemo every week for treatment. Well his latest CT scan showed he had a dangerous blood clot in the artery between his heart and lungs. So he is at a HUGE risk of heart attack or the clot moving to his brain. SCARRRYYY!!! He has to start taking Heparin shots in his stomach twice a day to hopefully break up the clot and prevent more. This also means he can't travel to Ohio with us. Well he could be it is not recommended at all! So I and my Mother who will travel with me have to leave him for a week. I know, a week doesn't seem that long but still. I'm very worried something will happen while we are away and there won't be anything we can do about it.

Originally the whole family, parents and brothers were going to come with me to Ohio but now its just going to be my Mom. My brothers and Dad will stay in NH. The thought is that IF I end up getting transplanted in Ohio, so I'll have to stay there for a few months, my brothers and dad will come out then. But for just this week they will stay home and hold down the fort.

Fingers crossed everything goes without a hiccup, but that has not been our family luck lately. So needless to say our house has been filled with some stress these past few weeks. The best thing to happen would just be Boston calls BEFORE I have to leave for Cleveland and I get my Transplant in the next few weeks. That's what I'm really hoping for, but we will see what happens.

I've waited this long for my perfect pair, whats another couple weeks?

Breathe Easy