Transplant evaluation

Yesterday was a really long day. I tried to go to sleep early to be ready, but since I usually go to bed around 3, I couldn't just fall asleep at 9, or 10, or 11. I finally went to bed at 1, but took what seemed like a long time to fall asleep. I got up at 4. My little eyeballs didn't like it, not one bit!

So first thing in the morning was flippen cold!!! 34* according to PFF on Euclid and Foothill. I was shivering! When we got to USC at 6:45, the appointed time, it was still freezing. The parking lot was in the shade, duh a parking building, and so was the walk to the hospital. I couldn't breathe it was so cold. I was longing to get inside, just to find out when we did that they had the huge entrance doors not working well, and it was 40 something inside the building also.

We finally got thru admitting and went upstairs for the first test and we were so happy that it was warm! First thing they did was a blood gas test. For any of you that haven't had this, it can be extremely painful if you get someone not good at it. They need to take blood from the artery in your wrist, not from a surface vein like usual. But my guy did a great job and I only felt the first stick. Then I did a full set of pulmonary functions tests. Took two hours. I was beat. After that a 6 minute walk study. The point is to see how far you can get in 6 minutes. Without my 02 I might add. Well I took off like a bunny, but slowed down after I was sucking air. I was surprised that a place as advanced as USC had me walk up and down a hall way instead of using a treadmill. I ran over a few people, oops. But I went 1580 feet. A mile is 5280 feet. So I went about 3.4 miles per hour. I actually think I went way faster for a while, and then way, way slower! The guy kept saying don't push yourself so hard. Well isn't the point to see what I can and can't do? By the time 6 minutes were up my legs were burning so bad I wanted to sit and never get up! I was surprised the difference between walking 30 minutes or more at a much slower pace and walking 6 minutes really fast. Well, fast for me. I guess my walking around the mall isn't the work out I thought it was!

Next, blood work, then xrays and CT scan. After that met with the transplant coordinator, then the doctor. The doctor is the pulmonologist, not the surgeon. I've met the pulmo guy before and really like him. We bantered back and forth and argued about my weight again. He wants me to get to at least 110. I said, mmmhmm. That was my total response, with a smile of course! He asked what had changed from when he saw me two years ago when I was checking out USC for their CF clinic. Told him about how hard everything is getting, about being short of breath all the time with any effort extended. Told him about the bleeds and about the "event" in July.

After that was...oh, financial coordinator. I hate insurance. They gave her the wrong information. I wish what they told her was true, but I've been paying long enough that I know it's not. Too long of a story. They were very impressed that I know each of the three parts of the insurance, how they work and have a name of who I talk to at each. Also fax numbers that they needed to send info over. Well after all, isn't that my second job?

Lastly was the social worker. I don't know if I impressed him or if I made him think I'm so not right for this procedure! But he remembered us after we talked about the last support group we went to and Kelly raised a little stink because there were no masks for patients to wear. He said he was really mad, not at Kelly, but at the people who put him in the position to not know about this. They now have masks at the support group meetings. He kept looking at his watch though and I didn't know if he was bored, running late or what. We were there only for our scheduled hour so I'm not sure what was wrong.

So that was it. When I was listed in 2000, it took about 4 months to get the results. This time it should take a much shorter time. They, a team of about 20 people...actually not sure how many, but everyone I met, plus the surgeon and some others...meet next Wednesday to talk about me. I wish I could be a fly on the wall. They will reach a decision and then and let me know if I'm accepted or not. If I am, they will not tell me my score (the people on the list are scored from 0-100. The higher the score the closer to the top you are. Meaning the higher the score, the more in need you are of a transplant. But often people in the 30's and 40's get their tx) but they will tell me " your score is too low to be called soon" or "with your score you can expect a very short wait"...or something like that.

So now it's a waiting game. Oh, if anyone is interested in being part of my support group, they want names. It would be people who come to visit me in the hospital, people who can bring food or help when I get home, people who can drive me to doctors appts once I'm out as I have to go twice a week for quite a while. And as a long shot, they are also asking for names of anyone who wants to be a potential lobe donor. This is for the back up plan. You need to be type O and in fairly good shape. The 50 year old rule no longer applies, so you can be over 50. Also you need to be 5 or 6 inches taller than me, I'm 5'3". You can contact me personally for more information.
I told them I have lots of cousins and friends who will help me, because you can actually be denied a transplant if you don't have a support group. I know of one girl this has happened too. How very sad that someone is so alone.

It is a darn good thing Kelly was with me. I had him running back and forth all day, carrying my stuff...the air in that place was so dry, I thought my blood sugar must be skyhigh I was so thirsty and my mouth was so dry, so I had him go to the car and get my testing kit. Blood sugar was normal, so I had him go get me a soda. It didn't last too long. Then I needed another, then we went to the car to get lunch (I had packed us good food, remember the diet!) and took it to the cafeteria to eat. Kelly brought it back to the car because my walking legs were done. He waited, he comforted, he talked to me and for me, and kept me fed and watered! What a guy. It must have been so boring but not a complaint came from him. Maybe it took his mind off the stress of the first day of his new job, MONDAY!

So, I guess that's all. I've been so tired since then. Thursday night I slept for 12 hours. Friday night for 13. I didn't get up until 3 pm today. I couldn't believe how late it was. The kitties loved it. They were both curled up and asleep beside me. One leaning on my legs and one on my head. They're so cute!!! I am going shoe shopping tomorrow with my sister so I have to get up at a reasonable hour, wish me luck!