Here are entries from a journal I kept about each day:

Day 1 - 4/29/08

6am - Woke up. Well, the truth is, I probably got 2-3 hours of sleep... and it wasn't deep sleep, so I was already semi-awake. The mattress we slept on was really uncomfortable. But we sleep on the highest grade memory foam mattress at home - so it's hard to compare. Brian says I'm a princess. : ) My mom and Brian ate breakfast while I got ready in the room (I wasn't allowed to eat because of my testing).
7:40am - Brian drops me & my mom off at Shands with our new wheelchair!! THANK GOD (and Robert & Mayra Campbell) because it would have been a nightmare without it!!! My mom and I came up with a creative list of errands for Brian to run today because he has really bad ADD and doesn't do well in these situations.
7:45am - We show up at Shands at the Lab (15 minutes late because of Brian)... the girl behind the desk totally had no idea what she was doing. Our next test was scheduled for 8am down the hall so she told us to go there and then come back. I saw another guy who was wearing oxygen - hmm??
8am - PPD test. Very quick! They injected something under my skin on my right forearm. I have to go back in 48 hours to have it read to see if I have tuberculosis.
8:15am - Back to the lab. They drew about 20 vials of blood (well, maybe 12 vials).
8:30am - Bone Density Scan. Hey - there's the guy I saw at the lab! We find out he is getting on the lung transplant list, too - for CF (Cystic Fibrosis). He is 30 minutes ahead of me for all the same tests. The Bone Density Scan was the easiest test of the day. I just laid down and this x-ray type machine scanned over me. Quick and easy! Yay! We're back on schedule...
8:45am - Hop on the Shuttle over to the Medical Plaza.
9am - Check in for my abdominal ulatrasound. We show up just as the same guy is going in. The ultrasound wasn't that bad. The technician was really nice. He just put some warm gel on my abdomen and used the ultrasound thing-y to see what was going on in there.
10:45am - After waiting for an hour in a waiting room with some interesting characters, I was called in for my VQ Scan. This test was NOT FUN, but the technician was really nice. First, I had to breathe in RADIATION mixed with oxygen through this thing that looked like a hotel ice bucket with tubes coming out of it. I had to do that for 5 minutes. Sound easy? Well, she put a plug on my nose and I had to breathe only through the mouth-piece. But it wasn't free-flowing... there was some resistance. This is where my yoga meditation techniques I just learned came in. I am extremely claustrophobic, and I can't breathe anyway... so this was really hard for me. I thought I wasn't going to make it the 5 minutes but I did!! YAY!! I was so proud of myself! Then she put this thing that was about 2 feet x 2 feet over my chest and head. It was about an inch from my face. Yoga meditation. I had to fight thoughts of freaking out and pushing the thing away from my face in a mad rage. Meditate... Find your happy place... This was to see the airflow in my lungs. So next, they INJECT RADIATION into my arm!! (I'm going to glow in the dark tonight)... and they put that thing over my face again. This time they were looking at bloodflow in the lungs. Done. GET ME OUT OF HERE!!! By this time my breathing is getting heavier, so we plug my nebulizer into an outlet in their hallway so I can do a breathing treatment. Much better.
11:30am - Brian meets up with us & we meet with the Pharmacist to discuss how much my medications are going to cost me. He tells us that we have really good insurance (GOOD NEWS!!!) and that my co-pays will probably be about $300 a month for about $6,000 worth of medicine. This is just for my transplant meds... my diabetic supplies are already $300 a month and will probably go up because my diabetes won't like prednisone and I will have to use a lot more insulin. I'm guessing prescriptions will be about $700-$800 a month. That's on top of the $900 insurance premium we pay each month. But they are totally losing money on me, so it's okay. And we also found out that we should stay on our private insurance as long as possible because even Medicare doesn't have very good coverage and you have a lot of out-of-pocket expenses. I have a $5 million lifetime max on my insurance policy (most policies have only $1 million). So once I reach that, I'll have to go on Medicare. But overall, this was good news.
12:30pm - Lunch. We get a break. Hop back on the Shuttle and go back to the main hospital.
2pm - We meet with the Financial Consultant to discuss my coverage. $1,000 deductible (which I've already met this year) and 100% after that. So if I get my transplant in 2008 it will be FREE!!! If I get it in 2009 I will just have to pay my $1,000 deductible. But that's just for hospital stuff... we still have to pay for travel and lodging and stuff (relocation expenses for 2 months), but this is MORE GREAT NEWS!!! She also told me that Dr. Baz (my lung transplant doctor) will meet with the radiologists, etc. either this Tuesday or next Tuesday to discuss the results of all the tests and then they will let me know if I qualify for transplant or not. (Obviously I will!) I am still not sure when I will be told when I will be listed but I hope it is after they meet. So I won't know anything for a week or two, but I'll post an update on CarePages when I do. If you still haven't registered for CarePages, please Click here to register

So... overall, not a bad day. A lot of running around and I'm exhausted (going to bed early tonight) but it wasn't completely horrible. Tomorrow will be much easier - Physical Therapy at 10 am (We can sleep in a little) and then an EKG/Echo heart test and then meet with the Social Worker and the Psychologist. I can handle that.

Day 2 - 4/30/08

I'm having to hold my eyes open with paper clips practically, I'm so exhausted. Last night was a rough night. For some reason I was having more difficulty breathing than normal. And I kept having nightmares of being poked and prodded for tests (flashbacks from that day). So I only got maybe another 3 hours of sleep again. My breathing was really tight, shallow and labored. It could have been from anxiety from all the testing, I'm not sure. But I'm feeling a little better today. I think I'm so exhausted that I'll just sleep through it, no matter what.
There's power in prayer - so please pray that my breathing gets okay enough that I can sleep tonight, because I've had about 6 hours in the last 2 days.

I met some incredible people today and learned more than I could have ever imagined. I'm glad we had three sets of ears today, because we needed it.

8:30am - We got to sleep in today. My breathing was tight in the morning, but I was really nervous about my endurance testing at physical therapy. I was allowed to eat today, but couldn't. I had butterflies in my stomach too bad.

10am - Physical Therapy. I was really nervous about this because I'm so weak now... and you kinda have to 'pass' this test because they want you to be strong enough for surgery. The guy in charge of physical therapy was really nice. He let me take my time and really gave us some useful tips that I can use when I get short of breath. He put me on 15 liters of continuous oxygen and a breathing mask. He said that's how much he wants me to use that much when I'm exercising. My leg strength was okay. 'C+... passing, but nothing to write home about' were his exact words. He put me on a strict regimen of wall squats and treadmill every day. I HAVE to get my legs strong before surgery. He said the yoga was good, too. Then I did a six-minute walk test on the treadmill. After 4.5 minutes, my shortness of breath got the best of me and I had to stop. My oxygen saturation was fine, but my shortness of breath was making me feel lightheaded. He told us that the problem with LAM is that it is both restrictive and obstructive, meaning it's hard to breathe in and hard to breathe out. It's the worst of both worlds. He tried to explain it to my mom & Brian... he said to take a full breath in. Then let it half way out. Now take another breath in... do that a couple of times and you'll see what it feels like. He said that was okay that I couldn't complete the six-minute walk test... because it wasn't because of my legs, it was because my lungs wouldn't let me. We also did leg presses, which I did 'okay' on. Then we did a 'sit-stand' test where I sit down and stand up without using my hands to push up. I was able to do the required 5 in 13 seconds, which he said was good. So the good news is I PASSED!! I just have some serious homework to do.

11am - Echo/EKG/Bubble Study - Well, this is the only test so far that I kinda-sorta had bad news. But it's not a big deal. First they did an Echo which is kinda like an ultrasound of your heart. Because of LAM, my lungs are hyper-inflated (due to air getting trapped in my lungs). So it was difficult for the tech to get a good view of my heart at first. So, then they did the bubble study (they put an IV in my arm and put salene with tiny bubbles in it - and then watched it on the monitor). The bubbles were supposed to stay in the right chamber of my heart. But they went over to the left chamber. (This was the bad news)... it means I have a PFO (not really a big deal - it's really common and can be fixed with a non-invasive surgery. Rather than explaining it, here's a good webpage you can look at: http://www.clevelandclinic.org/heartcenter/pub/guide/disease/congenital/pfo.htm
But they might choose not to fix it right now because it could be from the pressure in my lungs and it might correct itself when I get new lungs. But this could be one of the factors in why I'm so out of breath.

1pm - Social Worker Consult. My social worker, Abby, is awesome!! She was totally helpful. She met with all three of us and talked about the whole process and what to expect and everything.
Here are the most important things I learned:
1. Hurley (our dog) can come visit me in the hospital!! (This is the best news I've heard all day)... They allow dogs to visit as long as they've been bathed that morning before they come. So he can come see me and help with my recovery. He can also live with us after I'm discharged.
2. There's no transplant housing. Bummer. I guess it was damaged back in the hurricanes and they didn't have the funds to fix it up good enough for transplant patients. So that means we are going to have to find an apartment to rent for a couple (to a few) months... Yeah, that's another thing, I COULD be up here for even three months. So not only do we have to pay rent and utilities up in Gainesville, we have to pay our mortgage and other bills at home, too (this is where our fundraising efforts come in). Luckily, some apartment complexes will give a discount to transplant patients. (It will be like I'm back in college again!)
3. We are close enough to drive!! They said at first we had to be there in 2 hours, but she told us it's more like three. We made it there in 2 1/2 hours on Monday (in rush-hour on the turnpike). Which is much better, because if it's a dry-run then Angel Flight just drops you off and you have to get home on your own. This way, we'll have our car and we can just drive back. From what I've seen, most people have three dry-runs.
I was being interviewed to find any 'barriers' for transplant, and the only thing that really came up was the fact that I have diabetes, but it's manageable. Other than that I passed!!

3pm - Psychological Consult. Typical psychological interview. They interviewed Brian and I separately. They said we passed that one, too. (At this point, my brain was really mush).

5pm - My Social Worker invited us to the lung transplant support group meeting. It was actually up next to the ICU where I will be after surgery, so we got to see where it was. We got to meet several transplant patients at different stages post-transplant and there was another gentleman who had been on the list for one month already. I learned SO much from talking with these amazing people. Insider tips that you just can't get from a book. We all exchanged names/numbers and I know these people will be an essential support system and will make me feel welcome in the 'lung transplant' family.

Tomorrow I will be getting a heart-cath (which I'm pretty nervous about) - so please pray for peace & calming and that my breathing will be easier to get through it. Hopefully they will let us go home tomorrow evening and they won't keep me overnight in the hospital. Here's an article on heart cath: http://www.healthsquare.com/mc/fgmc0151.htm

Day 3 - 5/1/08 (Written the next day - on 5/2/08)

First of all, I want to thank everyone for their messages of support and prayers the past few days. I could feel the power of prayer surrounding us. I also wanted to say, my e-mail inbox has 2-3 new e-mails every time I reply to one, so if I haven't written you back yet, I will get to it. But I LOVE the messages of support - it really keeps me going, so don't stop! : ) I think hearing back from you guys about how my story has touched you - is just as touching to me. It gives me the strength to continue on through this difficult process.

6:30am - Woke up. I slept a little bit better that night. I was able to calm myself enough to get to sleep. My anxiety and nerves really had me breathing harder. But this was the day I was most dreading, and it was also the night I got the most sleep - about 5 or 6 hours. I could have slept longer if we didn't have to get up early to be at Shands.

8am - PPD read. Negative. I don't have tuberculosis. (good news!)

9am - Arrive at the Cath check-in. This is where my stomach started to knot up on me again. I was getting all short of breath all over again - which freaked me out even more. The waiting room was packed with people waiting for the same procedure. You could tell who was the patient and who was the family by the look on their face. : )

Finally after about an hour and a half wait, I got called in for prep. Brian and my mom got to stay with me the whole time except for the actual procedure. They got me to a bed, had me get into a hospital gown, and hooked me up to all kinds of monitors and put an IV in. I couldn't lay down because I breathe easier sitting up and hunched over a little - to lift my ribs off my lungs. I was so short of breath from being anxious that I wasn't even comfortable sitting up. I closed my eyes and did my yoga meditation and breathing technique. It was amazing to see what happened to the monitors - my pulse dropped from 120 to 90 and my oxygen saturation went from 94% to 100% at one point. I just couldn't hold the meditation once I opened my eyes. I need more practice. I think I was really freaking out because you have to lay on your back for the procedure, and that's the hardest position for me. Luckily, Bradley, one of the assistants there - was really awesome about distracting me and helping to calm my nerves. He was really cool and up-beat. When he found out that I was here for lung transplant eval - he told me that he had a liver transplant when he was 14. Amazing the people God puts in your path when you really need it. I think that gave us an instant bond - a bond I'm finding that transplant patients share... you can't explain it.

So then the doctor came in to talk to me. He explained the procedure and we decided they would go in through the groin. He told me they could give me some IV meds in there if I got too anxious. The pulse monitor machine was beeping like crazy while he was talking to me. When he left, I did my meditation and made it stop beeping. Then I would open my eyes and it would start beeping again. It was kind-of a game I was playing to pass the time.

Then they came to get me. They wheeled the bed into the procedure room. They put me on the table (the nurses slid me across - since I would get too winded getting up and then laying down again). Then a bunch of people in masks came in and did various prep. Every new person asked where I was from. The nurse started to laugh, because I had told about 10 people in a few minutes.

They numbed me up with lidocaine in my groin on the right side (it's your bikini line). It hurt at first, but then I could only feel pressure as he numbed a bigger area. That was, until he hit a nerve. My upper thigh started tingling - I'm like 'my leg is a little tingly'... then the tingling moved all the way down to my foot and got more intense 'my leg feels like it's on fire'... he told me they had hit a nerve so he told the nurse to give me some pain meds. A few moments later, they kicked in and I was feeling nice. It's weird, your thoughts are perfectly clear, but when you try to talk - your words get jumbled up a little. I tried to keep my answers to one-word so I wouldn't sound like an idiot. I ended up not needing the anxiety meds. Yay.

I was laying on my back with my arms out-stretched, and I used another breathing technique my yoga teacher taught me, where you raise your rib cage out, and put your shoulders back to open it up. Then you breathe by filling the top, then middle, then bottom of your lungs and then exhale the same way. This actually made it a lot easier to breathe than I thought it would.

I started to feel pressure in my leg... they had started the procedure (the nurse told me)... she said my stats and vitals were doing great. I could feel this strange pressure moving up my leg and finally I could feel something strange in my heart. It's hard to explain. They took some pressure readings and then pulled the cath out and it was over! They patched me up and wheeled the bed back to recovery.

My mom and Brian came back and I was still a little loopy from the meds. I was hungry but couldn't eat laying down. The nurse came and held pressure for 15 minutes where they went in. I had to lay there for another 2 hours before I could leave. The doctor came back and said the pressure in my heart was a little high, but that is probably due to my lung disease. I don't think that will affect me being on the list. In fact, it might help - because I will need new lungs quicker than someone who has good pressure.

The discharge nurse came in and went over all the 'do's' and 'don'ts' and we were able to finally leave!!! I was able to finally get a good nights sleep last night (after the fire died down) for the first time in several days. I had gotten 12 hours of sleep the whole time we were there (3 days). I'm sure the exhaustion didn't help my anxiety or breathing trouble. I'm still a little sore from where the cath went in, but that's to be expected for a while. I have to limit my activity (which I do anyway)... but I can walk around the house right now, and then maybe start doing the treadmill in a few days and then wall squats next week. Hopefully, if I can get stronger, my breathing will be easier. The stronger your muscles are, the less oxygen they need to function.

5pm - We left Shands to come home. From door-to-door it's about a 2 hour 20 minute drive to Shands. This is great, because we can drive when I get the call.

8pm - We've been home for maybe 30 or 40 minutes and we hear sirens going down the street. Our neighbor comes over and lets us know that there is a massive brush-fire just down the street!!! The entire sky was filled with huge orange flames... (GREAT - LIKE I NEED MORE STRESS RIGHT NOW!!) It started at the cul-de-sac at the end of our road in the brush. Then it moved down our street and ended up in our neighbor's back yard (across the street from us). Last night a total of 60 - 70 acres burned. As I'm writing this it is still not contained and they are watching for more flare-ups, but luckily the winds are on our side and blowing it away from the houses.

Click here to see the news story on the fire.

SO - What happens next? The lung transplant team will all meet either this Tuesday or the next and discuss all of my test results. They will identify any 'barriers' that would prevent me from being listed right now. Psychologically and financially (with all the fundraising I'm doing) I think I passed with flying colors. The only hold-up I can forsee would be something health-related. But they will just fix it and then I can go on the list. So please pray that there aren't any hold-ups and I can get listed right away. I will get a phone call with their decision as soon as it's made. And I will post an update on CarePages about it.

Until then, I really need to kick my fundraising efforts into full gear. If anyone has any ideas, please let me know! Annie and Pete Huminski are doing a Princess House fundraiser for us. My aunt is also throwing a 'Lung Transplant Shower' to save gift cards and Breath of Hope Donations. We are also going to be doing a big prayer circle and talking about organ donor awareness at the shower. I think we're going to do it on May 17th or 18th - and I'll be sending out the info soon.

Thanks again to everyone... I think this was the hardest part of the whole process. Now comes the waiting. I just can't wait to get the call and wake up and take my first full breath. It brings tears to my eyes to think about it. Any lung transplant patient you meet says the same thing - it's all worth it for that first breath. At the lung transplant support group on Wednesday I was able to meet two guys who were 5 months post-transplant and it was SO encouraging to see them walking around and healthy and just LOVING LIFE!!! They are an inspiration to me.

UPDATE: After some more testing that had to be done and a delay of a holiday weekend, I was finally listed on 6/3/08