Just need a tv now, heh...

Sleebus

Is it could be play tiem now?

Bilge pump Equal parts of Soco, malibu, blue coracoa Equal parts of pineapple juice and sweet & sour -Matt

I had to skip breakfast at the beginning of day 2, as I wasn't allowed to eat or drink anything 4 hours before my CT scan.



First up was an EKG. I was given an injection containing a small amount of tin. After waiting 15 minutes I was given a second injection of a tracking agent. I was connected to several heart monitors and layed flat on my back as they took 3 videos of my heart doing its thing. Each video was recorded for 7-10 minutes, one looking straight down, one from the side, and one looking at my side with my arm over my head. After the injections this was extremely easy, as I just had to lie still (I'm a professional nap-taker).



Next was a CT scan. I layed on a bed and was told to hold my breath as I was robotically slid into a circular chamber. 10 seconds later a voice from a speaker inside the chamber told me to exhale. They did this twice and I was literally done it under 5 minutes.



Next I met the pulmonologist who explained that it does look to him that I'm at the point where, in his opinion, it'd be better to do a transplant sooner rather than later. He noticed my blood gas test showed high numbers. The lungs also filter carbon dioxide out of your blood, and because my lungs have been conpromised, they are not able to do this as well as they should. This results in extra tiredness and headaches after waking up. When sleeping, the lungs slip into amore relaxed mode, and the carbon dioxide builds up in the blood even more, and when you wake up you usually notice this due to a headache. I have been getting them recently, but they typically go away within 2-3 minutes of waking up. I assumed it was from sleeping with my air conditioning up high or sleeping with my neck turned weird, but it's nice to know there is a reason it has been happening more recently.

Basically I'm not showing anything different then what they would expect from someone with CF with my level of lung damage. I was prescribed to begin a pulmonary rehabilitation program asap. This would consist of weight bearing excercise (mostly tredmills) to help get my heart and organs ready for the increased activity post transplant. They want everything as strong as possible going into the transplant.



Next I met with a transplant social worker. First alone, then with my parents. She was basically outlining what needs to be done before I am placed on the list, and what kind of requirements I will have pre and post transplant. Where I can get funding if I need it. How my insurance changes and whatnot. A big concern for most is the $1000 / month drugs needed after the transplant to avoid rejection. Many insurance companies only cover the first year. It's nice to know these things ahead of time and being able to have a plan in place now will make things much smoother in the future.

Once everything is planned and a go, it looks like when on the transplant list I'll be living in St Louis. This could be for 2 days.....2 weeks....or 2 months, it depends on the length of the list for people my height and blood type. Once a match is found, I have 2 and a half hours to get to the hospital. Surgery lasts 6-10 hours on average. On average 1-2 days in the ICU followed by 10-14 days in the hospital. After leaving the hospital, I have to have someone with my 24 hours a day for the next 12 weeks (3 months). I begin daily pulmonary sessions and daily clinic appointments. I can begin to start driving after 6 weeks, and after 12 weeks I can pack up and go back home.

(and play with my kitty, who will have probably been wonder where the heck I've been!) After that I go back for a recheck in 6 months, then once a year after that.



I met with a dietician next and again got a pep talk about trying to gain as much weight as possible to help my body handle the transplant the best it can. I'll probably gain weight after the transplant, but not everyone does.



Tommorow is the most invasive procedure so far: a heart catherization. I can't eat or drink anything after midnight and have to be there at 8:30 sharp. Luckily that's the only thing scheduled tommorow and I should have a nice report when it's done

Day 2 stats:
2 injections
3 bottles of vitamin water
2 times lost in building
3 times the GPS told us to take roads that no longer exist



--Chris Falco

--dunkerz

It's Eskimo Joe's Anniversary week, and today's theme is "Scream Your Team" where you are invited to dress in your favorites team's colors, not for a discount or anything special other than just dressing up. Dunno about this, but the Miller Lite Chill is damn cold. -Matt

My hotel room has a 2 line phone next to the toilet. It also has a hold button. Lol.

There is a yellow cab that is painted orange. At the store there was the Firewall dvd with the same picture of Harrison Ford used on every movie poster since patriot games. And at the checkout corner "rap snacks" wtf?



--Chris Falco

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.

---------------------

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.

--------------------------

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

And the list goes on and on for eons! Semi avg. Day in gotham a megametropolis -- Future interstellar existential surrealists®