Tuesday, February 28, 2012

Evaluation Day 2...

Today started out a half hour later than yesterday, thank goodness.  I was scheduled for an evaluation at Center For Living, the pulmonary rehab location. The physical therapist, Jennifer, took down all my information then tested me for muscle strength.  I'm sure I amazed her with these bulging muscles of mine...yeah not so much.  Then she talked a lot about the Duke transplant philosophy of exercise.  To put it in a nutshell, just do it whether you feel like it or not.  You must do 23 days of pulmonary rehab before being listed.  That means 4 hours a day whenever you are not in clinic.  Because of illness and other appointments, it usually takes at least 2 months to get your 23 days in.  If you do a partial rehab visit, it does not count towards your total.  Yikes!  They want you as buff as possible before transplant because their studies/statistics show that being able to keep your muscles as strong as possible beforehand results in better outcomes.

Following the exercise pep talk, I did my 6 minute walk test.  They want to see how far you can walk in 6 minutes and how your heart rate and blood pressure react to the exercise.  I was able to make 3 laps around their track before my time was up.  The goal is to be able to walk at least 1,000 ft.  I made it 1,200 ft. in 6 minutes--watch my dust!  The walk figures into their eval equation.

Then we had an hour to kill before my next scheduled appointment.  So we came back to the hotel and relaxed for a bit before returning to the hospital to do two of my most dreaded tests:  an Esophageal Manometry, and a 24 hour pH probe.  These are the tests that have deprived me of my Prilosec for the past 5 days.  Despite trying to stay away from spicy foods to minimize the stomach acid, I have enjoyed several days of burning discomfort.  I am counting the minutes till I get to take my little purple pill again!

With much trepidation, we headed back to the clinic to start this torture test.  To my frustration, they were backed up and so I waited for an hour and fifteen minutes before I was finally called back.  Making a nervous person wait so long for procedure is just plain mean and fasting for 11 hours as a diabetic is even more cruel, I say.  Anyhew, I got a chance to talk to the other cystic who is part of our 6 person evaluation group.  He is 30 and going for a second transplant.  The other four patients are older COPD men.  

The first test was not pleasant at all.  The tech sprays your throat several times with Lidocain until it feels difficult to swallow (a major anxiety trigger for me usually).  Then she put a Lidocained swab way up my nose to deaden that.  It would be nice for it to be dead before they tried to deaden it, if you know what I mean.  The technician then inserted a small tube (very liberal with their idea of small if you ask me and others who have had this procedure done) up my nose and into my stomach.  Can you say gag??!!  Then over the course of the next 25 minutes the tech squirts a bit of saline into your mouth and asks you to swallow, once.  If you double swallow before you get another squirt, it doesn't count towards the 10 swallows you need.  It is hard not to double swallow.  Then when you actually do swallow, your throat becomes more sore with each one.  Let's just say it is miserable.  I got through it with only a couple double swallows, thank goodness.

Once they pull that catheter out, you get a minute or so to regroup and then the whole process starts all over again.  More Lidocain.  This time the catheter inserted in your nose and threaded down into your stomach is much smaller--like the ones you may have seen inserted in noses before.  Because the first tube was mean to your throat, this one doesn't feel so good either despite its size.  Then they hook this probe into a monitor that I am wearing around my neck.  I have to record on paper every time I start to eat or drink anything and when I stop.  Then they can see a correlation between when you eat and when excess stomach acid begins.  Kind of clever in a sadistic kind of way.  I now have the probe in and was able to eat with minimal discomfort.  Not sure how my already insomnia-prone body is gonna handle this added attraction tonight but we'll see how it goes.

At this point I would be remiss in adding how much I was helped during these procedures.  I felt much more calm than I had any reason to.  I felt a peace that I know beyond a shadow of a doubt was not from my coping skills alone.  I very much needed help from my Savior to get through that, and the help came.  I feel so blessed to have had so many people fasting and praying for me.  I could surely feel that power today.

After a quick lunch because we were already behind schedule, we hustled over to meet with the transplant surgeons. Dr. Lin, the head surgeon, was very nice and answered some of our questions.  A lot of the answers were the same as we have been getting the last two days, "well, that's kind of hard to know at this stage of the evaluation."  I get the impression they are really trying to prepare us for the reality that it is all a guessing game as to timing.

Well, hopefully tonight goes well and tomorrow I will be free of this probe.  :)


  1. Sherri,
    I read your posts to Mary tonight and we both laughed hard and also felt your pain a bit. We both think that you are amazing!! We love you and are praying that everything goes as well as it can!!
    Love you,

  2. Can't wait to hear how today turned out...
    Your positive additude is still off the charts - given all the fun you are having.

    Our prayers are with you.