Went to the doctor today and my function was down to 28%, but I've been feeling pretty good and able to do more daily things around the house. Aside from the off and on lung pains that can't be explained, I've not been too bad!

Good news! My lung function is up to 31%! I was shocked because I have been feeling crummier the past two days. I get my PICC line out tomorrow, so that means no more IV antibiotics. 

The lung pain is gone and I'm feeling better. My lung function is up to 28%, which is good news, but they want to keep me on IV antibiotics for another week. I'll do anything to stay out of the hospital at this point in the semester!

My lung function is still down (to 25% - yikes!) so I'm going to start home IV antibiotics tomorrow instead of going in the hospital and missing two weeks of classes. They decided I had pneumonia and not a blood clot or punctured lung, so hopefully this pain in my lung will go away once the pneumonia is treated.

I had severe lung pains last night and couldn't sleep. Todd took me to the hospital today for an x-ray because they though I might have a collapsed lung. The x-ray was negative but they don't know why I'm in so much pain. :( Sad day.

 Went back to the doctor today. Capacity up to 44% but function stayed the same at 26%. I felt better, but the numbers were disappointing. 

I've been on the transplant list for THREE months today! I can't believe how that time has flown by. It's scary to think that I could get new lungs in as little as 3 months. The steroids and oral antibiotics I started last night have already begun to help. I felt so much better today after resting and eating well. The chiropractor has also been helping a lot with my back. It hardly hurts at all tonight, which is a major improvement.

Caught a cold and have been feeling very poorly the last few days. Went to the doctor today and my lung function was back down to 26% and capacity was down to 39% - all time lows. :(

I have been a terrible blogger

I know it's been two and a half weeks since my last post, but I've been busy!

I have been feeling pretty well.  The last few days have been a little rougher.  Classes start back up tomorrow, so I hope that I'm feeling alright.  My back has been feeling better, but I still will be going to the chiropractor tomorrow to make sure everything's okay.  I've been pretty active between rehab sessions, helping with yard work at Todd's dad's house.  I even mowed the lawn (riding, of course) twice!  And the biggest news of all: We got a kitten!  

She is a gray tabby and about 4 or 5 months old.  We haven't officially picked a name, but I will post it once we have!  I need to get started on a treatment so I can get to bed early for my first day back to school!  It's going to be a busy day (buzzing around non-stop from 11am until 9pm)!  I'll try to write more frequently, I promise.

a quick update before the weekend:

Boy, do I sympathize with anyone who has back pain! I could hardly walk upright yesterday. Vicodin weren’t even helping. I spent a lot of time laying down with a heat pack on it yesterday and didn’t make it to rehab. I don’t know why my back has been so bad since I’ve been home. Today it was a little better, so I’m hoping it’s getting stronger and that I must have just overdone it this week.

We went to Sam’s club today to stock up on essential items. We also picked up a bottle of Grey Goose… it was $10 cheaper than at the grocery store so we decided to try it! I did pretty good walking around the store. It’s always a little easier when I can lean on the cart while we go. I’ve had a pretty good week, though aside from my back.

We had sushi with Beth and Missy on Wednesday night and even got to sit outside because it was so nice! Afterward we went over to Missy’s place and I got to play with her kitten, Macey! If you know me at all you know I absolutely love kitties! I was in heaven! She lives on the third floor and I could actually go up the stairs without stopping! It’s been a year since I could do that.

Last night we ordered pizza because my back was too tired to stand and cook anything. It was really really good, though. It’d been a while since I had really good pizza. This afternoon we made chili for the weekend and tonight after my treatment gets done we’re going to grill out. I’m so excited that I’m feeling so good lately. It's a new feeling!

-teeny

another post because I just feel so good:

Oh, today was a busy one after I last wrote! Rehab went well, I didn’t walk on the treadmill at all because my back was hurting me too much, but I did everything else I was doing before I went in the hospital with EASE and on 3 liters of oxygen instead of 4 (my O2 sats even stayed around 94, and they were below 90 before)! I was very happy. After that I swung by the apartment to eat a quick bowl of cereal and then went out to Todd’s dad’s house for dinner. I even walked around the hilly yard for a while in the heat without my oxygen and did fine! It’s amazing that I didn’t even have to take a nap today! I feel GREAT! I know the tests don’t show it, but I really benefited from those two weeks in the hospital (I hate admitting that). I’m just finishing up a treatment now and then going to eat another time tonight. I’m really going to have to work hard at maintaining my weight if I plan to be more active, which I do plan to do!

I'm HOME!

I got to come home yesterday. I was so glad to leave. My lung tests plateaued, so it was time to get out of there. It was about 100 degrees out and muggy, though! My sunglasses fogged up as soon as I got outside. On the way home we stopped at one of our favorite Mexican restaurants and ate! It was only 3:30 but I had a beer anyway - and after two weeks it tasted soooo good to have that Corona.

I was a little short of breath after being on oxygen for two weeks, so I had to take it slow unpacking. We did a monster grocery trip, too, but I did much better than I had done before I went in the hospital. I was so excited to eat all the food that we’d bought, but I decided to get into a good habit and do a vest treatment and my breathing meds when we got home so that I could eat and then get to bed early. And boy, did I sleep well! My back has been really sore from the hospital mattress and I hadn’t gotten more than 3 hours of sleep at one time for two weeks, so it was a much welcomed sleep. I even got to sleep in until 9:30 today! I remember two weeks ago I hadn’t gotten up before 9:30 more than a half a dozen times all summer. Hopefully I can keep a good schedule of treatments and eating and EXERCISING so that I can feel good for a while and stay out of the hospital!

This morning after I got done with all my treatments Todd and I made a nice big breakfast of ham, scrambled eggs and toast. I hadn’t had any caffeine in the hospital and had a cup and a half of coffee this morning. Today I’m headed back to pulmonary rehab and I’m curious to see how it will go. I know I’ll need some oxygen, but I feel like I have so much energy (probably from the caffeine, but also because I feel so much better)!

That’s all I’ve got for now. Maybe I’ll have more to write tonight.

-teeny

this week in the hospital...

My pulmonary function tests yesterday showed that my capacity was up by 2% to 49% and my function was up 1% to 32%. It’s frustrating not seeing the kind of improvements that I’m feeling. I feel a lot clearer and breathing is better since Monday. I even got on the bike for 10 minutes yesterday and the day before and have been walking around the halls more. I like to do it at night when there’s no one around because I usually have to drag my iv pole along with me and dodging doctors and visitors during the day is a big hassle. So during the day I sleep when they leave me alone long enough. I’m almost nocturnal!

The steroids have finally sparked my famous appetite. I’ve been a bottomless pit for a few days now, to my own suffering, unfortunately! I haven’t really been hungry, but I just can’t stop eating. I end up feeling full all the time, which makes it hard to breathe. They’re also giving me cravings for odd foods that I normally don’t eat, like corn dogs and fig newtons. I’ve eaten 2 sleeves of those things in 3 days! You’d think with all that I’m eating I’d be gaining weight like crazy, but I was only at 118.7 pounds yesterday. I guess it’s going to take more work on my end.

Yesterday was an interesting morning, and right now, when I say, “interesting” I mean it was awful. I was not only woken up by a fire drill, but my blood sugar was low and I was trying to get someone’s attention to check it and bring me some soda and food. It seems like every time they check it it’s low or on it’s way down. I wish it weren’t such a trial-and-error process, because I’m tired of the peaks and valleys.

My CF doctor is now the one rounding in the mornings, so it’s nice to have a familiar person coming in and waking you up instead of some stranger. It’s hard to entrust your health to another doctor who hasn’t been following you… or to any nurse or tech or pharmacist, for that matter. It’s they who are more likely to make a mistake that could cost you. Since being here I’ve caught numerous mistakes (wrong pills, wrong solution in the IV, tardiness, ignoring policies etc.). I feel like I can’t let my guard down sometimes. I just hope they’re paying attention when I’m asleep, because I sure can’t!

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.

teeny

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

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!

teeny

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.

teeny

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. :-\

teeny