Skip to main content

CF Appointment

Greetings!

Better late then never, but I wanted to share about my most recent CF appointment (it was Friday, March 21st).  My brother-in-law and his girlfriend, Julie, were in town, so Julie got to tag along with me on my visit.  It was her first time joining me and she was pretty excited to see everything and learn more about CF!  I enjoyed introducing her to everyone as "hopefully my soon-to-be-sister-in-law"!! :) LOL

I was anxious for my PFTs as this was the first visit since starting to use my vest again.  I was wanting to see some improvement in my small airways to help prove to me that its worth it.  Drum roll....

                    Last Visit        This Visit
FVC                 110%               105%
FEV1                97%                 94%
FEF25-75%      68%                 68%

So, I'm a bit bummed that I didn't have any improvement.  Still great FVC and FEV1, but I wanted to see a higher FEF25-75%.  I am still determined to get it up...so I'm sticking with the vest.  Maybe June will show some increase since I will have more time on the vest.

It was a very easy appointment.  Got to be gagged with the giant q-tip since I couldn't cough anything up for my sputum culture.  (I think Julie was glad about that - haha!)  I told my doctor about running and somehow talked myself into running a half marathon next February!  There is a big CF team and I'm gonna be a part of it...and Will too!  We talked about getting a new vest since mine is ancient!  So, my respiratory therapist sent me some info on the SmartVest which is much smaller, lighter, and quieter - woohoo!! It will cost about $12,000 (without insurance), so let's hope Blue Cross Blue Shield wants to help me get it!  *fingers crossed*

I asked Julie if she would like to write anything about getting to see my appointment firsthand, and she wrote the following for me to share with you all (and some pictures!):

While visiting Will and Dana in Aiken last weekend, I had the opportunity to join Dana for one of her quarterly check-ups at the Georgia Regents University Cystic Fibrosis (CF) Center in Augusta.

Before meeting Dana, I really did not know or understand much about Cystic Fibrosis. For those of you who know Dana, she does not let the disease prevent her from living life to the fullest or doing anything she aspires to do. Nor does she ever complain about any of her treatments, symptoms or talk a lot about her CF in general.

But another thing many of you know about Dana is that once you meet her, you love her. So learning more about CF and understanding Dana’s condition is very important to Brent (her brother-in law) and I.

So I was super excited to have the opportunity to join Dana for one of her appointments and learn more about CF. From the moment Dana arrived at her appointment, she was greeted with all smiles from several members of her care team. It was comforting to see she had such a dedicated team of medical professionals that each took time to see her and knew all about her particular case.

From the nurses, social worker, respiratory therapist to pulmonologist, I could see that each member played an important role in Dana’s treatment regimen and her continued progress. I also saw the concern and compassion each one had as they each listened to updates or changes Dana discussed with them. They each seemed genuinely concerned with how she was doing.

I was not surprised to see that Dana had an organized folder with all of her charts, progress and reports to keep tabs on how she is doing from visit to visit. Several of her team members referred to her as a “Star Patient” as she is so dedicated to her treatment regimen.

Dana is her own health care advocate and very determined to do whatever she can to help manage her disease.   She has set many goals to help with the prognosis of her CF- including individual fitness goals (running a  5k every month),  improving her Pulmonary Function Test  scores by using a vest and doing regular treatments  and even a fundraising goal of $10K to help advance treatments and research for CF.

Now to add to that list, Dr Forseen even managed to get Dana to commit she and her husband to running in the Augusta Half Marathon and 10K next year. And I know they will do it!
Dana is an inspiration to me and I am sure to many CF patients.  Her indomitable spirit and  positive outlook on life are contagious.

During her visit, Dana’s respiratory therapist stated that she’s doing so well that he expects she  will be around for a long, long time.;-)  Brent and I are counting on that as we look forward to making many, many more memories with Dana and Will through our life together. We love you Dana and hope you know what a bright spot you are in all of our lives.

Dr. Forseen listening to my lungs :)
Chatting with the Doc 
Me and Jules :)

Comments

Popular posts from this blog

SmartVest Review & CF Appointment

Well, here is the long awaited official review of my new SmartVest SQL.  I don't have any current or updated vests to compare this too, so my feed back is based upon what I like/dislike versus the old and out-dated vest.

Pros:
Weight - it is MUCH lighter than my ancient Hilrom Vest.  By all means, it isn't light but definitely a great improvement from my older model.  I can at least carry it myself!Comfort of vest - the fabric is much softer and less scratchy when wearing it.Technology - it has a digital screen, so I can set the time and know for sure how long I'm using it (the old one had a knob to turn).  Also, I can set different programs based on how long I want to use it, etc.  It's quieter!!  Will still doesn't enjoy watching TV with me while I vest, but I don't have to turn the TV to its max volume!  And, the dogs aren't scared of this one as much!There is only 1 hose...so I'm not tangled up :)And it comes with a rolling case (that looks like a re…

CF Updates

Greetings friends!

I had the pleasure of going to my quarterly CF appointment on Tuesday.  It was originally scheduled for 11/15 but being that my sinus funk is still lingering around, I wanted to move it up a bit.  (the original funk started here)

I finished my round of Cipro on 10/29.  And still had a head full of congestion, sore throat and ears. Bummer.  I thought I was starting to feel better for a split second, but it didn't last.  Thankfully, my lungs were still feeling good :)  We were at our cabin in WV that weekend and I skipped my vest and HTS, but thankfully didn't suffer.

So, I headed in to the doc on Tuesday.  My PFTs are holding stable so that makes me happy!  More on that in a minute.  During my exam, she could see there was still fluid in my ears along with my red throat.  Plus my face was super puffy and my eyes felt as if they were going to pop out of my head.

So, the plan of attack is this:

1) Take Levaquin 750mg for 14 days
2) Get back on my Claritin dail…

Feeling Good Guilt

Having Cystic Fibrosis is not something that consciously crosses my mind on a daily basis.  I take pills and do breathing treatments throughout my day, but I just do them out of habit.  I don't sit down to eat a meal and say, "oh, I have CF, I better take my enzymes".  Instead, I just subconsciously walk to the cabinet and pull out the bottle, or if I'm out to eat, I reach in my purse and grab them.  It's just like brushing my teeth before bed every night.

While I know I have a disease that is incurable.  I find myself just living life and doing the many things that I want to do.  While this seems well and good, it's also unfair.  There are other CFers fighting for their last breath, waiting for a second chance at life with a lung transplant, or being hooked up to an oxygen tank and dragging it with them wherever they go.

I often tell people that I am a bad example of CF.  When explaining CF to someone, I talk about the deterioration of the lungs, challenge…