CF Clinic-Physical Exam

I recently needed a routine physical as part of the adoption application.  After realizing my primary care physician was on extended leave, I asked my CF doctor if this was something she could do for me, even though I don't have clinic again until July.  The last thing I wanted was to go to a general doctor I have never met.  I really needed the physical performed by someone who understands my health status, so it could be well explained on the application form.  My CF doctor was more than happy to help. 

My appointment was on June 17.  The actual exam was performed by a resident, but then my doctor popped in at the end to chat.  We did PFTs, which were down about 5%, but still within my normal range.  However, my small airways went from like 41% to 70%.  I am sure that has been my highest recording since the 90's.  I am positive this is a result from the hypertonic saline.  So that was exciting to see, even though the rest of my numbers where slightly down.  After discussing PFTs and how I have been feeling, the CF doctor decided to consider this a clinic appointment.  Otherwise I would of been back next month. She was pleased with my status and asked me to schedule clinic in 3 months. 

Saying Goodbye

This month, I had to say goodbye to two members of my CF team.  The first was Amy, the Event Coordinator of our local Cystic Fibrosis Foundation Chapter.  Amy lead our Santa Rosa Great Strides Walk.  She was excellent at connecting with the community, providing motivation, and just being so supportive of the mission.  Amy decided to leave the Foundation to continue on with her eduction.  I will miss having Amy at Great Strides, but I wish her luck with her new goals. 

The second team member was my clinic's social worker, known as Mrs. Wonderful.  I really connected with this person last year during my IV treatments.  She really helped me deal with the emotions associated with having a chronic illness.  Since then we have had many conversations about various topics, most not even CF related.  Mrs. Wonderful was always willing to talk with me.  I didn't have to wait for clinic to talk with her.  We talked on the phone a lot.  She even met with me once when I was at the hospital for an appointment with the ENT.  She was such a wonderful component of my team.  She completely went above and beyond her job expectation.  I am thankful to have had her be apart of my team. 

Saying goodbye to these women got me thinking.  Having CF, I will always be connected to this community.  I will always need a team to take care of me.  But those on the team are connected to CF by means of a job.  A noble profession, of course, but never-the-less, they are getting paid to be apart of the CF community.  They have the choice to be apart of this community.  I don't get that same choice.  I guess it is just a realization that my CF team can change, even when don't want it too. 

First IV Antibiotic Treatment- One Year Later

It was one year ago today that I received my first PICC and started my first antibiotic treatment.  The treatment was intended to target my sinuses, but it made me realize my lungs needed a little tune up too. Although the treatment was only mildly successful for my sinuses, the treatment really cleared up my lungs.  I didn't even realize my lungs needed help...or could be helped.  After the IVs, my cough was minimal, I stopped clearing my throat and I just felt clear.  Most of all, this treatment made me a stronger person and an even stronger CFer.  I feel like I know my symptoms better, I can communicate better with my doctors and I feel like I have a better gauge when I need antibiotics.  Its not to say I have not had my share of lung problems in the last year, but my recovery from each exacerbation seems to put me back to that post-IV feeling of being clear.  I'm working hard at trying to keep it that way with Vest, HTS, and pulmozyme.  

This experience also made me feel more connected to the CF community.  So many people offered their support during this time.  It was during this time I connected with two special people in my life Josh and Stacey.  Josh offered support, a prep-talk prior to my PICC placement, advice, and listened to my worries. A stranger helping a stranger.  This sparked a very special friendship, which has grown into so much more than "just" CF.  Love you buddy.  This was also the time I met Stacey, my Soul Cyster.  We learned about each other through Josh.  We had so much in common, it wasn't even funny...including both having PICCs for the first time within a week of each other.  Some how it was a little easier knowing someone else was experiencing the same stuff as me.  Stacey, I am still amazed at all the things we have in common.

Hypertonic Saline-Eight Weeks Later

Eight weeks ago I started an Albuterol/Hypertonic Saline treatment. I have to say, I love HTS. It seems to be the most productive treatment in my line up right now. Every treatment facilitates a productive cough. My lungs have been feeling really clear, I'm hardly coughing. I'm not even really having to clear my throat. It is a harsh treatment and it is uncomfortable to administrate, but the benefits really out weight the side effects of this treatment.


Using this treatment has put aspects of my disease into perspective for me. I realize just because I have normal lung function, doesn't mean that I don't need these treatments. I think my last doctor put so much emphasize on PFT numbers, he stopped listening to my needs. I went for years thinking that being congested was just part of having CF. Which it is...but there are tools out there to help. I just think this was being overlooked because of my overall health. I am thankful my new doctor is more proactive and is helping me find the right combination with maximum benefit.

Crafty Update-Gift Boxes

I have been working on some new craft project over the past couple of months.  I found an easy pattern to make fabric covered boxes.  This project is easy and no sew.  This box is created by fusing fabric to poster board, cutting out the pattern, folding and gluing.  I made this box to use as a gift box for a bridal shower gift.  There is also a pattern for a wine bottle box and a Chinese food carton.