First Hopkins CF Clinic Visit

28 Feb

Today Jody had his first visit at the John’s Hopkins CF Clinic.  During this visit we met with one of the doctors, one of the nurses, the social worker, and the dietician.  I took my point and shoot camera along to snap a few pictures (isn’t a blog post always better with pictures?), unfortunately though, the battery was dead (note to self, check the battery before leaving the house next time).

Overall, Jody had a good visit today.  His lung function is currently 32%, which is where he has been hanging since his infections last year.  Imagine, if you or I lost 70% of our lung function we would think we were dying.  For Jody, this decline has been so slow and gradual through the years that his body has adjusted, and for the most part, this decrease has gone unnoticed… until last year that is.   This past fall was the first time we began to see symptoms of his declining lungs, but we are now beginning to see small improvements.

One thing the doctor today recommended is “pulmonary rehabilitation.”  In plain English, supervised exercise, three times a week for 12 weeks.  During the exercise session Jody’s heart and oxygen level can be closely monitored.  The goal of this therapy is to start slowly, and gradually increase his exercise tolerance as his lung function (hopefully) increases.  We’re not expecting to see a huge jump in function, but small increases in lung function can mean big increases in tolerance of day-to-day activities.  Since we won’t be driving to Baltimore three days a week for this therapy we are hoping to get it set up here in Lancaster.  Please pray that this can be done without too much hassle.

We go back to Hopkins in three months, and during that visit Jody will have a full body Dexa scan done.  This is a test that measures bone density, and is recommended for CF patients because of an increased risk for osteoporosis.  In the meantime he will have a slew of labs drawn and we will work on setting up his pulmonary rehab.  It was nice to meet some of the members of our new CF team today.  We hope our relationship with them will be just as personal as it was with our previous team.

2 Responses to “First Hopkins CF Clinic Visit”

  1. Sheryl March 1, 2013 at 4:15 am #

    Sounds like you are going to have an awesome team . Remember they are the best and this is where you need to be!!

  2. Marilyn Titter March 1, 2013 at 9:31 am #

    LANCASTER GENERAL HEALTH runs pulm. rehab at the sub. health campus and my husband used them for 2 1/2 years and we were well pleased with the results. It’s clean and small groups, less chance of catching bugs and the resp. therapists are top notch. JJH can send a script to them. You insurance should cover this for a while, we then paid the fee for maintance care afterwards. So glad that it was a positive experience. I will give you the name of some good places to eat close to JJH and the inner harbor.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: