Thursday, October 31, 2013

CF Clinic Update - Redemption!

Yesterday, we (Maria and I) made the trip to my CF clinic. It always feels like an actual trip.  Here is why…….When I left work it was 2:30 by the time Maria and I got home from the appointment it was close to 7:00. But this is typical. 

I was really looking forward to this appointment as I called it my redemption appointment.  If any of you remember my last visit to clinic, I was battling a cold and I knew my PFT test was going to suffer.  Well it did last time and I got credit for a FEV1 62 back in August.  But I knew why it was lower but still it doesn’t sit well with me.  Yesterday, I was looking for redemption on that PFT score because I have been feeling FANTASTIC after I kicked my cold WITHOUT a single antibiotic. Woo hoo for me!!

When we arrived at clinic, I was pleasantly surprised to see a couple things have changed from my last visit.  Maybe it was because of all the talk about cross contamination from the CFF.  The first thing that caught my eyes was a stand that had a bunch of medical maks!!! Woo hoo! I have never seen this at my clinic before.  So did I wear one???? NO, because as soon as I got in there and talked to the receptionist my vest lady came out aka respiratory therapist to ask me questions.  She asked me what I do for airway clearance and nebs and all that stuff.  I told her my love for HTS is still there.  I asked her about the Minnesota protocol that I mentioned in my last blog.  She said yes she has heard of it and the individual who made the claim to fame on this protocol was also the founder of the Vest.  I asked what she thought of this and she said yea it works but the key is to make sure you are taking those PAUSES that I mentioned in my CLAMP motto (Cough, Lubrication, Air, Mucus, and Pause).

After I was through talking with her it was time to move on to visit with my doctor. I always love to talk to him.  We talk not just about CF but all the other exciting stuff going on in my life. I started off talking about Alayna turning 1 year old.  I shared with him all the videos of Alayna dancing and taking her first steps. He really could not believe how she dances.  He was just astonished.  Then the conversation transitioned into him watching Miley Cyrus music video.  He even mentioned tweeking! Hahaha. For all of you who do not know my doctor he is in his 70s and is talking about Miley Cyrus and tweerking.  It was hilarious.  My appointments at the CF clinic never feel like doctor appointments.

As for some serious stuff………..My lungs sounded good no crackling or wheezing.  My weight is stable and I was able to cough up a little mucus for the culture.  Does anyone ever feel like when they go to clinic that if they cough up mucus a few minutes before clinic that they will not be able to when asked for a sample for the culture? I fit into that boat. In fact, I have actually held my cough in on occasion to wait to cough it out when I am at the appointment.  Ok sorry for the TMI but I know I am not the only one.   

My doctor told me that he quotes me very often.  I told him after I had been using hypertonic saline for a few months “I LOVE MY SALT!”  We then discussed when and what strength of HTS I use.  I told him I use 7% during my morning treatment and 3% in my evening treatment.  I did mention that my evening treatment has become 10 times as effective now since adding 3% HTS.  He asked me I use 3% instead of 7% in the evening.  I do 3% in the evening so I don’t end up coughing my head off all night and it really improves my mucus clearance.  He said interesting I think I will start recommending this to patients now that do not neb HTS in the evening or for those who cannot handle 7% in the evening to try 3%.  I guess it looks like I’m going to start a revolution for HTS in the evening treatment at my clinic.  If any of you cysters or fibros are not nebbing HTS in the evening ask your clinic if you can experiment with adding it to your evening treatment.  Especially, if you find your evening treatment to not be as effective as your morning treatment! 

After I was through with my doctor, I then met with my research coordinator to fill out a bunch of questionnaires.  We chatted for a little bit and then it was time for my redemption.   

As I walked to the PFT room I felt good about this upcoming test.  I knew I was feeling good and ready to prove that I was back to my baseline.  My baseline over the last 2 years is anywhere between an FEV1 of 68-74.  I sat in the phone booth box and put my nose clips on and blasted out my first test.  The first score came in at FEV1 68.  Woo hoo.  That was 6 percent higher than last visit. I blew three more times and I got credit for a FEV1 of 69!! I wanted to get back into the 70s but I was very happy with that score. Next time I will be back in the 70s that is my goal! As for my FVC it was exactly the same as my last visit, 93.

So all in all it was a great appointment.  I redeemed myself and was able to make it back to my FEV1 baseline.  This appointment also showed me that my dedication to compliance is really paying off as well.  If it wasn’t for being 100% compliant then who knows where my numbers would have been or more importantly how I feel.  I left clinic with a request for blood work as well.  If you know me you will know I hate even the thought of having a blood test! Remember my butter knife episode?  Me and blood equals passing out.

She is already a genius!!


  1. Hey J.T.!! Way to blow--and way to go! Glad things went well :) And yep, it's a journey to get there :)

    Big Breath

  2. Nice PFT! Keep it up! Love the pic too!