This is going to be a long week.

I have traveled to St Louis with my parents. The plans for this trip were put into motion back in April. I had gotten sick, and ended up in the hospital for a few days. I have Cystic Fibrosis, my doctors discovered I had it when I was 6 months old, and was failing to gain weight. Cystic Fibrosis (CF) is caused by damaged DNA, it's genetic and it effects the lungs, along with other organs. I've had it my whole life and as I got older it slowly has taken various tolls on my body. Only since college has it really started to drastically effect my life. I've always been tall and skinny. No matter what I eat I don't seem to put any weight on. I always have a cough which leads people to believe I'm a 4 pack a day smoker. I had to give up soccer, and hockey, this past year even riding my bicycle has become difficult.

This April was the 6th time I got sick to the point where I ended up in the hospital for treatment. I see my doctors every 3 months and take various drugs to help my lungs fight off infection. Even with all the drugs and treatment, my lung function still declines and in April, a test revealed my lungs are working at around 20% what is normal for someone my weight and height. I spent 5 days in the hospital, and did another 16 days of IV treatments from hone.

When I went home from the hospital I was given a machine to have oxygen in my home, and portible tanks to take with me if I venture outside.

I went back to my doctor at the end of April, I felt better but my lung function test numbers were about the same, meaning the drugs are not as effective as they were in the past.

During my follow up visit my doctor then asked if I was interested in learning and potentially being placed on the list for a lung transplant.

I learned about the process and how it mostly goes, and I decided to blog the process along the way so that in the future, if someone else if going through the process they can have a first hand account of what happens.

To be placed on a transplant list, you must first want to have a transplant, and go through a transplant evaluation. My doctor recommended Barnes Jewish Hospital in St Louis, and my insurance covers it so after doing research, I decided to go there. My doctor refered me and sent my medical history to their transplant team.

After a month I got a call asking to setup an evaluation, we locked in the week of July 16.

The evaluation at Barnes Jewish is 4 days long. You arrive at 7:30 am Monday morning and you get a schedule of tests for the week. You do 4 days of pretty much every test you can think of to evaluate if the doctors and surgeons feel you can tolerate a transplant and that they believe you can have a successful outcome.

I drove in with my parents Sunday afternoon. From my house west of Chicago it was about a 5 hour drive. The home care place arranged for me to have portible oxygen tanks to take with me. We also arranged for a oxygen machine be delivered to my hotel for the week while I was there.

We are staying at a hotel in Union Station which is very cool. Aparently the Union (Train) Station was built in the 1890's and in late 1900's was converted to a shopping center/hotel/entertainment complex.

We had arranged for my oxygen to delivered on Saturday, so it would be waiting for me when I got there. However, there was a mixup and it didn't arrive till late Sunday night, but I did get it finally.

We ate breakfast at a cafe at the station and drove to the Lung Transplant office at the Hospital.

I got my schedule from Lori in the lung transplant office and went off for my first tests. ------------- First up: to get a blood draw and urine sample taken. Fairly painless. The lab tech took 8-9 vials of blood which seemed like a lot but probably wasn't with all the testing they will be doing. She also wrapped up my arm after taking all that blood, making me look like I had been shot in the arm, not just stuck with a measly needle. -------------------------- Next, I had a bone scan. Another simple test, you lay on a table and a machine scans your bones, it took about 5 minutes total and required me laying on a table and staying still for 45 seconds. ------------------------- After that I had a VQ scan. This was interesting and I had never heard of it before. I was given an airtight oxygen mask and then sat in front of an xray machine. I was asked to breathe normally and the tech injected some gas into the tube I was breathing from, this gas is picked up by the xray equipment and is recorded as it gets picked up and moves through the lungs and heart. This test lasted around 8 minutes. The first three were the hardest. The lab tech warned me that it would feel quite stuffy and that after the first couple minutes oxygen would start pumping into the tube much quicker. It was indeed hot and stuffy, much like breathing into a paper bag. It was a little difficult but nothing too bad. I could see how someone could begin to panic and have a reaction but the lab tech let me know what to expect and everything went smooth.

For the second test the test material was injected in my arm and again I spent 8 minutes being xrayed in various positions. The lab tech did have a problem finding a vein in my left arm, so she had to stick me twice :/ however, it really wasn't a big deal.

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Next up was Pulmonary Rehabilitation. They put a finger clip on my finger which is a small light that can read how much oxygen is in your blood by shining light on it. I then went on a walk with the pulmonary therapist, he would adjust my oxygen tank to see how my oxygen saturation changed. We walked for a little over 6 minutes. I took a survey about how out of breath I feel when I walk or do various activities. He refilled my oxygen tank and I was done.

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Last up was pulmonary function tests. First I sat with my oxygen on and they took an satuaration level, then again after a few minutes after being without oxygen. She took a blood sample from a vein on my inner wrist for a blood gas test.

Then I did several breathing tests. First did a short spirometry. I breathe in long and deep then blow out as fast and long as I can. I had to repeat this 3 times. But I was allowed to rest and recover between them. I then took 3 puffs of an inhaler (a bronchodilator) then did 3 more of the same test. I then did one where I did a quick panting, then a deep breath in and out. And after several of those I was done for the first day!

I left the hospital around 1:30ish and went to get some lunch and relax back at the hotel.

Not a bad first day. Tomorrow I don't have a test until 8:30 so I get to sleep in a little, but I'm not allowed to eat breakfast so that kinda sucks.

Tommorow I'll be having a RVG scan, a chest CT scan and then meet with a Pulmonologist, social worker, and dietician.

I will update tommorow when I do these tests.

Day 1 statistics:

5 miles between hotel and hospital 4 needle sticks 3 bottles of vitamin water drank 2 cable tv movies watched (Vegas Vacation, a Few Good Men) 1 times getting lost in the hospital

--Chris Falco