Sunday, July 27, 2008

over the weekend:

They're starting to wean me off the oxygen. I've been at 4.5 L/min 27/7 since I came in on Tuesday and now I'm at 3.5. My O2 saturation stays above 90 (the minimum they want me at) most of the time unless I've been coughing or exerting myself. Without oxygen I drop to below 87 sometimes, so I'm clearly not ready to be off it. I went downstairs today (IV pole in tow), excuse me, down the elevator. Took a small walk around the floor. It seemed like nothing but I needed to sit and get my sats up afterward. They also decreased my steriods by a little, and I'll continue to slowly taper off that for a month or so. They upped my benadryl, which has completely eliminiated the reaction from the antibiotic but I think a combination of that and high steroid doses has given me the shakes. I couldn't hold my hands still if my life depended on it! Breathing between treatments has gotten a little easier. I'm hardly coughing at all most of the time. I'm hoping for a improvement tomorrow when they do PFTs. I still haven't used the bike or gone to the gym like I'd wanted to, but hopefully that can change this week.

I ate every morsel of the spaghetti Todd made me. (big surprise there!) It was spicy and delicious... two things you don't get with hospital food. I was going to order Quizno's delivery tonight but the one near the hospital closed down. :( Had a few friends stop by to visit. Another CFer came by and we gossiped about nurses and respiratory therapists and bitched about CF in general. It's nice to have someone who understands exactly what you mean!

I think I'm going to go for a little walk around the floor now. I need to keep building up my strength a little more every day so I'm able to function when I leave.


Thursday, July 24, 2008

Just a quick update for today:

I woke up today feeling really crummy and tight in my chest but over the course of the day I felt better and better. Todd coming up really motivated me to feel better so we could go down and get lunch in the cafeteria. I'm already tired of the whole room service menu. My CPT (chest physical therapy) treatments were all on time today, which is extremely unusual. I didn't get a nap in until about 5 and then I slept until my next treatment at 7:30 - I was tired from all of the coughing I've done today. I strained one of my long side muscles so the coughing hurt more than usual. Weight is up to almost 118 (BMI 20.9) which is good news, but I think a lot of it is water weight since I've been on 24 hour IV fluids. Not much else to say, really. It was a pretty typical day in the hospital. I'm a little spaced out, too, from the benadryl, so I'm done writing for now. :P

Wednesday, July 23, 2008

Day 2

Well, it certainly was a busy day, and night. They started me on high levels of steroids to decrease inflammation in my lungs, which has caused my blood sugars to be uncontrollably high. That means they had to wake me up at 3, 4, & 5AM to check my blood sugar. All day it's been high and it's starting to get on my nerves because I keep having to do more and more insulin.

My body aches are almost gone, but I think it's because I got some better pain pills than the ibuprofen I had been taking. More good news is that my PFTs (pulmonary function test) were up 1% from last Monday, they're at 29% now. More good news is that I've gained weight, I'm now at 115.8 when I had been running about 112. That prednisone is a great appetite stimulant, let me tell ya!

I'm going to try to start working out some tomorrow. I have a bike in my room so I can do it here if I don't feel like going down to the gym. I'm on a lot of oxygen so I'm hoping that I don't get so short of breath. My goal is to be able to go back to pulmonary rehab when I get out and be able to pick up where I left off, or even increase what I was doing.

All this hospital time has given me time to read, even if is only 10 or 15 uninterrupted minutes. I'm almost done with How to be Good by Nick Hornby. I really enjoy the author, he wrote the books that the movies About a Boy, High Fidelity and Fever Pitch (the original) adapted from. I brought two more books by him but I have a feeling Todd will be bringing me more.

They also are doing 5 CPTs (chest physical therapy) a day, every 4 hours, so I don't get many big chunks of time to myself. Got a couple short naps in today, which is necessary when you only get 2 hours of uninterrupted sleep at night. The prednisone also makes me jittery and it's tough to sleep away from home anyway, so I will definitely need my ambien this week. That stuff really works! I remember last time I was in the hospital and took one and was going to read in a text book until it kicked in. I don't exactly remember how long it took but it ended with me sitting cross legged on my bed with my forehead resting on the book. When my nurse came in I think that image gave her a scare and she rushed in and asked if I was alright. Kind of embarrassing. :P

Todd will be up to see me tomorrow. I miss him a lot. Maybe it'll be nice enough that we can go for a walk outside. It's nice to be able to get away from all of the people who bug you all day and make them wait for once!

I'm actually feeling pretty good at the moment. My lungs seem to have really responded to the prednisone. I just hope that they don't close up too quickly once they start tapering my doses. You never know if you're getting better or if it's just the drugs.

Anyway, that's all I can think of for now & my shoulders are getting tired from typing in a bad position. Food tray = bad computer table!


Tuesday, July 22, 2008

first day in the hospital

Well I'm all settled in my room at the med center. It took until 2:00 to get it and it is the tiniest room on the floor, and I'm less than excited about it. It's also got a straight shot view of the elevators so everyone who walks this way can see right into my room if my door's open.

It was another two hours before I got my PICC line in. They sedated me, so I was loopy enough not to mind. I'm doing better now, got a pain med in me for my aches and I'm waiting for my dinner (I am starving!). My PICC doesn't hurt yet, which is good, because they're usually painful for me. It's in my right arm, too, so I was worried I would have limited mobility, but none so far!

One of the IV antibiotics they're going to use makes me itchy (I guess it's a slight allergy) which I'm not looking forward to, but they'll try to combat the reaction with benadryl before hand. It's the only drug that can treat one of the infections in my lungs, so I guess that's what has to be done. Anyway, that's just a quick update for now.


Monday, July 21, 2008

weekend with the family in town

Alright, I'm finally starting this thing. I will need something to do for the next two weeks anyway.

So this weekend started off with my family coming in to town (Mom, Dad and aunts Patti and Karen). I was already feeling short of breath and my oxygen saturation had been below ninety much of the last week, so I was not as perky and fun as I wanted to be. Friday night we went to eat at Roja and wouldn't you know it my dish was cooked wrong and I actually had to send something back, which I've never done. Saturday we spent the afternoon at Horsemen's Park drinking beer, eating bar food and betting on the live races. I had one success in picking the first and second places in the one race I went outside to watch, but it was a $47 win so I was happy. I actually saw my 2nd place horse pull ahead just in time to see him cross the finish. It was so nice to go there and have it be smoke-free inside. Last time I went there two years ago I ended up coughing up blood because there was so much smoke. Saturday night we had a really late dinner (9pm!) but the food was well worth the wait. We finally had a real homecooked meal in our apartment with my whole family here. Sunday we went to a party at my cousin's house for her daughter's baptism and we got to see a lot of family who were in town for that. It was probably Sunday morning when I started feeling odd. I felt dizzy and hot most of the time and had no appetite, even though I hadn't eaten yet. We ended up taking off earlier than everyone else and I wore my oxygen all the way home. When we got home I shoved some food in me, didn't even take time to get a drink or take my shoes off. Immediately after I crashed and napped for 2 hours solid. When I woke up I felt like I'd slept on my neck wrong. At dinner I couldn't stop shivering and was less than hungry, even nauseated by my SUSHI (which if you know me, I love sushi more than anything). After I got home I threw up what little I had eaten and was running a 103 degree fever, which broke before bed. Today I was even more achey all over in the morning, no fever, but now, the aches are almost unbearable. No real appetite today, which isn't good because I should not be losing weight, but gaining. Since getting listed for double lung transplant I need to maintain and gain weight. All I had today was 1/4 of a bagel, some coffee, half a bowl of soup and a piece of pizza. Kind of an ecclectic mix, and none of it was very good. I took a shower a litle bit ago but I'm still stiff and sore all over. The Dr's office didn't get back to me about my symptoms specifically, but I'm getting admitted in the morning for my usual 2 week stay at the med center, so they'll be able to see how I'm doing then. That's all for tonight, I think. I have to pack and get a vest treatment done before I can go to bed, which I plan on doing early. I'm not hungry and will probably wait until after my treatment to try to eat anything. I can't eat after midnight anyway because I'll be sedated tomorrow to get my PICC line in my arm. It is going to be a long day, I have a feeling. :-\