Part 3: The Ward

When I was moved to a normal ward, all I wanted to do was sleep.  Which was what I did for a couple of hours before my next treatment.

On the ward, I faced a new set of problems.  Getting a good nurse was a shot in the dark.  Some nurses were great and very responsive.  Others, treated me like I was wasting their time.  Call light response time was much longer.  And sometimes my nurse wasn't even told that I needed her.

Finally got the nose bleeding to calm down.  It hadn't stopped, but it wasn't tissues full of blood several times a day.  They hooked a humidifier to my oxygen so it wouldn't irritate my nose so much.

I was no longer connected to a bunch of monitors.  And I could use the bathroom on my own.

Once I reached the point where I could sit up and talk normally, I decided to try trendelenburg.  I ended up coughing so hard that I started gasping.  The RT had to up my oxygen.  The coughing itself isn't the problem.  When I cough up such a large amount, some of it blocks my throat.  No air can pass through, so my brain starts to panic.  Once all the mucous is out, I can breathe again.  By then, I usually have a headache and have seen the flashing lights.  It took a few days before I could do trendelenburg without having a problem.

Once I was okay with trendelenburg, my doctor decided to add something new to my therapy.  He put in orders for me to ride a stationary bike while inhaling my hypertonic saline.  Now if this had been the first time he had brought up the idea, I probably would have looked at him like he was nuts.  My doctor had brought the idea up to me a couple of years ago.  He had wanted to do an experiment to see if doing a breathing treatment while exercising would increase how deep into the lungs the medication would go.  After some discussion, I come to the conclusion that it was a good idea to test.  Nothing seemed to come of it though

This wasn't an experiment though.  My doctor was just trying to get my crud out of my lungs and get them to strengthen up a bit.  My first round on the bike was like my trying trendelenburg.  I didn't last five minutes.  I was coughing stuff up, gasping for air.  The RT had to turn up my oxygen for me.  I was so shaky, it took me awhile to be able to continue with my treatment.  Like with trendelenburg, it took me a few days to go up to the ten minutes my doctor requested.  I actually began to like that part of my treatment.

This was the longest hospital stay I've had in a while.  I stayed for two weeks.  By the time I got out, I had missed the first week and a half of school.  Had one week to prepare for midterms.  The best part was my mom brought Mick with her to take me home.  He was so happy to see me.  He kept licking my face and wouldn't budge from my lap.

Now that I've been home for a while, gotten caught up with schoolwork, in the middle of moving, and have had a follow up appointment with my doctor, I've decided that I like the bike idea and am now searching for a stationary bike for use during my treatments at home.  Who knows, maybe enough CFers will give it a try, the CF Foundation will fund a research project to see if it really works.  And it's something I don't have to wait for FDA approval to start.