CF is not my friend today

We took a short road trip to Panama City, FL to see some good friends this past weekend. We were able to go to the beach on Saturday.  I realized my happy place, the beach, is hard for me to get to with all the walking.  I had to take breaks walking the boardwalk and then on the beach.  Once I got to our spot to sit I was ok just sitting and enjoying the sand and surf.  I went in the water and that wore me out as well.  Holding myself steady in the waves was hard and took my breath away.   With all that said the beach is still my happy place even though it is hard on me now.  I want to be able to travel and not have to worry about getting out of breath, coughing, breathing treatments, etc. Continue reading

Clinic Update

It was a good clinic visit today.  It’s always good when they say that you look the best they have seen you look in awhile.  I don’t know if I can attribute that to the Symdeko or just feeling decent.  I’m not trying to sound like a doubting Debbie but I just haven’t had any major “ah ha moments” to convince me it is symdeko but I should stop that way of thinking.  It is obviously working for the better, especially since I haven’t had any of the side effects. Continue reading

Quick clinic update

I had CF clinic today to follow up from when I was on IVs.  My lung functions were up a little to 30% / .87L FEV1.  We talked about this range being my new normal (baseline) for lung functions.  Thanks virus, thanks a lot.  I shared with him what was done at Barnes for my transplant appointment, some of which he already knew.  I also received some clarification about my care with them post transplant and pre transplant while I am in Missouri.  They will be able to help me when in MO if needed and post transplant I will still see them a few times a year for other CF care on top of lung functions when Barnes wants them so I don’t have to drive the 8 hours for some parts of the regular check ups. Continue reading

CF Facts

Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Continue reading

Things I hate/miss

As I was walking the dogs around the block today with my oxygen on my back I got to thinking about all the things I miss being able to do.  With progression of CF, your independence slowly gets taken away.  It is a major mind battle and the depression takes a hit when you think about all the things that are “taken away” from you. Continue reading

Student Scholarship time!!

Thanks to 25-years of medical advancement, the goal of pursuing higher education for many students with cystic fibrosis, an inherited chronic disease that affects the lungs and digestive system, is more achievable than ever before. Today, AbbVie announced the opening of the application period for the AbbVie CF Scholarship program, marking 25 years of honoring students with cystic fibrosis (CF) as they pursue their educational dreams. In honor of the scholarship’s 25th anniversary, AbbVie is also introducing a new award category – the Blogger’s Choice Award. Since its inception in 1993, the program has awarded more than $2.8 million in scholarships to deserving students across the country.

AbbVie will select 40 exceptional students to receive $3,000 for use during the 2017-2018 academic year based on their creativity, academic excellence, community involvement and the ability to serve as a positive role model for the CF community. These 40 recipients will also have the opportunity to compete for public votes to qualify for the title of Thriving Undergraduate or Thriving Graduate Student, and will receive a total scholarship of $25,000 (the original $3,000 scholarship plus an additional $22,000).

New this year, cystic fibrosis bloggers selected by AbbVie will evaluate the creative submissions of the 40 AbbVie CF Scholars to determine which scholar (who is not already receiving a Thriving Student scholarship) will receive the Blogger’s Choice Award. One student will be selected to receive a total of $25,000 in scholarship funding (the original $3,000 scholarship plus an additional $22,000) for use toward education-related expenses.

Applications will be accepted from now until May 24, 2016 and are available online at: www.AbbVieCFScholarship.com. For more information about the application criteria, contest rules and upcoming deadlines surrounding the application process, and to view creative submissions of past winners, visit www.AbbVieCFScholarship.com.

Good luck students!!!!

 

 

Happy 37th birthday to me!!!

Today is a happy day because we get to celebrate me, of course!  Yes, I LOVE getting older because it means I kicked CFs butt for another year.  On the flip side it is hard day without my mom here.  I thought after last year this year would be easier.  Considering I was in the hospital last year and it was the first one without mom here.  I have been doing nothing but crying most of the day thinking about mom.  She would call me at 3:05pm, the time I was born, on my birthday every year.  There were some years that she couldn’t wait that long and would call in the morning and then call back at 3:05pm.  I miss that phone call of her singing happy birthday to me.  We were VERY close.  I had plans to surprise her on her birthday last year in April but obviously that didn’t happen. Continue reading