Hospital Part II

Monday 2/25 3:20 pm Well, "here we go again." I got up at 4 am this morning to drive to Chicago for my pre-screening appointment (I was exhausted as I couldn't get to sleep till after midnight). I realized that I couldn't find one of my inhalers (Jenn ended up finding it down by Fred...evidently he was feeling a little yucky), so I called WalGreens at 4:15 to put in an order for a refill. Of course, I had used up my last refill, so the pharmacist asked me if I had a home number for my physician so that he could call in a refill? Want to make a doctor's night? Call him at 4:15 am because you are stupid and lost your inhaler and that you are leaving for Chicago in 45 minutes. I explained this to the pharmacist and he said he could do one more refill, after he asked me if I'd been to my dr recently. I was like, of course. He told me some people do what I've done and they haven't been to their dr in years. This was not a conversation that I wanted to be having at this time of day.

I ended up packing up, kissing Jenn and Mady goodbye, stopping by Walgreen's and hitting the road by 5 am. Traffic was horrible, and it took me 3:15 to go 160 miles, but I made it. Prescreening went ok. Found out that I absorb 40% of my fat intake (Dan only absorbs 30%. He was the one that told me this, so I figure I'm not breaking a HIPAA violation, since Mindy told Dan my lab levels. Comes around goes around. I'll probably be the one getting in trouble!) So, I felt pretty good about that. Mindy asked if I wanted to stay on the drug for a year again. Said I could go up to 3 enzymes per meal. Nah, not really. I did ask her about TOBI, the antibiotic inhaler. That study sounds really interesting. We're looking into it. I'm finding that these studies although a nuisance, can be a source of really decent side income.

Met Dan and Katie at IHOP. Had a cup of coffee with them. They're heading home for the night. Katie is coming in on Wednesday to stay. Dan is bringing is Wii for the week that we are in the hospital.

Stopped by UIC to meet with my supervisor/co-workers. Things are going well. We're getting inspected this week, so I didn't hang around too long. Got updated on pertinent information, and was only there about an hour. I was able to give my co-worker a bottle of Goji. He's a health nut and I've been talking to him about the MLM product that I've been involved with for about 2 years now. Once he heard about the health benefits and the amazing residual income and potential, he's signing up as a distributor. I haven't had time to work the business for a while now, so it will be nice to start to ramp things up again from the plateau where it's been at for a couple of months.

Hanging out at Caribou coffee now, taking advantage of the free internet (for those of you that have read previous blogs, you'll know what I've gone through to get free internet).

Staying with Joseph and Esther Reisinger tonight in Oak Park. He was my head usher in our wedding. Great guy. I've known him for about 15 years and call him a dear friend. We haven't hung out as much since we've both gotten married, so it will be cool to reconnect.

Jenn sent me a text picture this morning. Madalyn learned how to climb on her wooden rocking horse this morning without assistance. I miss them horribly already. I hate it that I miss these precious moments...Jenn taught Mady how to "greet people" today...things like that.

Tuesday 2/26 12:48 pm Well this morning went infinitely better than the last time that I came to the hospital. I ended up getting to bed at about 9:00 last night, set my alarm for 5, and was able to pop up out of bed. Left Joseph/Esther's by 5:15 and, boy did it snow last night. It was windy and my car was covered. No problems though.

I left an hour and 45 minutes early because I thought the traffic was going to bad, and the weather wouldn't help. I cruised the entire way here. It took me 1/2 as long to get here as before and it was more than 2x the distance. Go figure. Got here at 6:10 am, which was nice because I didn't pull into the parking lot with an ulcer, and I could relax getting unpacked. I walked into the hospital and they already knew which room I was going to be in (before, I had to wait awhile to get a bed). I got in, got all unpacked and settled. Dan pulled in at 6:30, and he had the same experience.

I had to fast this morning because I had to do the 3 hour starch tolerance test again. I eat 4 pieces of bread, and then they take my blood every 15 minutes to see how the sugars are converted in me. Good thing they put in an IV for the blood draws, it's a lot of sticks otherwise.

Finally had breakfast at noon today. I think I had too many carbs, as I'm about ready to take a nap. Already finished one book I brought, would like to finish the other 3 I've started at home recently and get a good jump reading through the Old Testament. Jenn just called. Mady has her 15 month doctor's check up today. She's going to get some shots. I wish I was there to support her.

Wednesday 2/27 9:57 am Had a good night's sleep last night. I think I was pretty tired and I'm just getting over a cold of sorts (I did 3 breathing treatments yesterday). Woke up at 5:30 this morning. I read a good portion of Deuteronomy. I'm about 2/3 of the way through. I would like to be done with Joshua and started on Judges by the time I leave here. Working on finishing Boundaries by Henry Cloud and my 2 investing books I've started.

Watched "A Year to Remember" chronicling the 04-05 Illini basketball team last night. It brought a tear to my eye they were so good. Oh, the glory days.

Started my restricted diet this morning at 9 am. I was really hungry (the theme for the next 3 days). Took the blue dye caps to start the study. Yah for me.

The internet computer in the children's lounge is still being fussy. Hence the reason that emails are delayed right now, as I have to go down to the business center.

I had an awesome idea a couple of days ago. We have decided to go to Columbia, South Carolina to visit some friends, probably in May. We will also go to Myrtle Beach, maybe head up to Charleston. I dunno, just take some time away as a family. I looked into the cost of flying vs driving, and it will a better deal if we drive (we want to leave before Memorial Day, before the gas costs skyrocket, considering they hit an ALL-TIME high in the last 48 hours.) I also have Marriott reward points, so we can stay a few nights free there. For 2 plane tickets, even now, it was over $1400 for us to get to Columbia. We would still need to rent a car too. So, my great idea is to do a research study through the Columbia Hospital, so that they will pay our travel/hotel expenses. I did this when I was in college and wanted to go to Baltimore (I did a study at Johns Hopkins). It's brilliant. Simply brilliant. They currently have a study open for CF patients, I just need to wait a month after this study is over before entering a new one. As long as they will accept me into the study. We'll see.

Thursday 2/28 10:27 Dr Boas came in this morning for my daily check up. He asked me how things were going. I told him that I was getting stopped up and experiencing the same signs and symptoms as last time. We both think that I am on the placebo. He told me if I start to get distended or constipated, he will pull me off the study, as it's not worth the risks, since my lab results will be identical to the last time I was in.

Got a few phone calls from old friends in the last day or so. An old buddy I've known for 15 years called this morning. He and his family live here in Chicago. He obviously didn't know the details of the study, as he asked if I was portable and could come over for dinner. "Yes, yes I can." I would LOVE to go over for dinner. I can't of course, since I'm on a scientific diet. Last night I had one small chicken breast, some dry egg noodles with broccoli added. To really spice it up, they give me a tiny little bowl of Parmesan cheese. A container of peaches, and I called it a night. Yummy.

Dan brought his Wii with him this week. We finally broke it out last night. It was a blast. He killed me in Tennis but redemption was sweet when we played Baseball.

Other than that, doing a bit of work here and there and trying to get as much rest as I can. We are working out the details of my new contract with my new job transfer into sales/consulting. They are putting the cart in front of the horse a little, so I had to slow them down a little bit until I have the contract in writing and can evaluate it, without going on hear say.

For what it's worth, I'm feeling better now than when I came in. Have had a great amount of time to think about life and the value of family. Boy, I sure do miss them something fierce. I'll probably not do something like this study again. It's not worth being away from them for so long in the name of science.

Friday 2/29 10:11 Whew, only another 2 days to go. Things are moving right along and I'm getting into a pretty good rhythm now. Jenn had a good day at the spa with my mom last night and she was treated to Chili's by some friends of ours. I'm jealous. I asked her to tell me everything that she had, leaving out no details. Dan and I watched a movie yesterday (3:10 to Yuma - something I wouldn't normally watch, and don't recommend) afternoon and then I took a long hot shower. Before dinner, I was getting so sleepy that I took about a 45 minute nap. That was a mistake as I couldn't get to sleep until 11:30 last night.

Had a long chat with Mindy, the research nurse yesterday afternoon. I found out that when I did the 3-hour starch challenge test, that all the results came back normal. This is good, as it's a determinant for diabetes (much like the 3-hour glucose tolerance test that pregnant women undergo to test for gestational diabetes). In the starch test, I spiked after the 4 pieces of bread and then my glucose came back down to normal within the expected time, so my pancreas and corresponding insulin reacted normally, so for now, no diabetes in the future. Diabetes has a 10% prevalence rate in patients with CF due to scarring in the pancreas. This was really good news to me, as more than 50% of the fellow CFers I know have CFRD. Also found out I only absorb/digest 49% of my total fat intake. (Sorry girls!) Hence the reason I have a hard time gaining weight. If I stay on the study drug for a year, I will only need to take 2 enzymes with each meal as opposed to 6 of my old ones, but I'll have to come back up here 6 more times in the upcoming year. I don't know. We'll see.

I finished up Deuteronomy and I started on Joshua this morning. I really have been enjoying the book of Joshua. It's a much easier read than the Pentateuch. God's Sovereignty is so divine and awesome. We serve an incredible God.

Other than that, there wasn't a whole lot to report in the last day or so. I'll keep this one short and to the point.

Saturday 3/1 10:30 Ah, only one more day to go. We watched Hoosiers yesterday. It was the only full movie that I brought with me, and I've seen it many times, but it's great each time. Had a good day of work yesterday. Found out that I officially landed my first account. (I'm not even fully in sales yet!) I have one that I'm still trying to close and 4 more that gave me a verbal commitment, which I should finalize in the next week. It's pretty exciting. It made my day.

I started to read one of the legal thrillers that I brought with me, and I was only 3 pages into it and he started dropping the f bomb, so that was the end of that story. Of all the books that I could have (or should have) brought, I chose that one. Oh well, I still have one book that I'm working on right now, so at least I have that. Besides, Dr Boaz said that he would try to be in by 9 am to release me tomorrow. We shall see.

I took the blue dye cap with my breakfast this morning. Yah, which means that I am officially off of the restricted diet, so I can eat whatever I want to. I think Dan and I are going to go out tonight and see the town. I'm looking forward to it, this hospital is about to make me go mad. I'm absolutely looking forward to holding Mady and Jenn tomorrow. Jenn put Mady on the phone today and she said "Mom-eeee" and DAD!" Mommy is more whiney and Dad is Very emphatic. It was hilarious. Made me smile...I'm smiling as I write this.

Jenn got her card that I sent yesterday. I hope that I don't ruin the surprise, but if she looks real hard, there will probably be another one in the mail today (I just called her, it didn't come, so it will come on Monday...argh!) I always try to do little things when I have to be gone to let her know that I'm thinking of her. The card I sent for today's delivery is cool. I'll let Jenn tell you about it if she wants. I had fun picking them out at the gift shop. It was kinda funny though, at the counter, these 2 blue haired ladies had little signs up all over the place: "No $100 bills accepted. No 50$ bills accepted. No 20$ bills accepted. No checks allowed." Then, I went to buy a stamp, and they said I couldn't buy a single stamp, I had to buy a whole book. I think I got them mad when I said that all I wanted was one stamp, and I only had a $20...they were not amused. I bought a book of stamps with it...hey, you win some, you lose some.

I had a good talk with Dr Boaz this morning. I'm really happy to be done with the study. Unfortunately, I lost 6 pounds in the last week (sorry ladies). Just got a call from Jenn. The CF Institute sent us a nice gift card to Best Buy for our participation at the conference. That was very, very nice of them. I really appreciated it.

Sunday 3/2 Dr Boaz came in around 9:00. We talked about the possibility of me coming up to the CF Institute once a year just to do a thorough exam of my treatment protocol. He left around 9;30, I packed up, left at 9:45, was home by 12:15, and enjoyed the afternoon with my two favorite girls. I only have to go up to Chicago 2 more Saturdays, and the study will be over! Thank you Jesus!