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
There are some days that I wish CF didn’t exist. Today would be one of those days. Don’t get me wrong I wish it didn’t exist at all but when I’m having a particularly not so good day, it is fresh in my mind that I wish it didn’t exist. Continue reading
A few months ago I shared about the new CF drug Symdeko (Symdeko post). After much tossing around of the idea of taking the new drug I finally decided to give it a try. I started the drug 3 days ago. It is twice a day and I have to take it with a meal/snack containing a good amount of fat to help it absorb. Continue reading
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
I remember when I could do a lot of things that I am unable to do now. Unfortunately, that is only going to get worse as time goes on and my lungs get worse. It is a major mind trip when you want to do things but your body won’t let you or your mind won’t let you because it knows your body can’t. If that makes sense. Continue reading
I guess I should update you all since my stay in “lock up” (aka the hospital). My creatinine (kidney level) is finally back down in normal range. It was .91 when I last had my blood drawn at CF clinic last Thursday. Yay for that. Even more yay, I can start to take ibuprofen, in moderation, for my aches and pains since Tylenol does nothing for me. Continue reading
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.
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
I had CF clinic today for a regular check up. Nothing seems to be regular about me anymore when it comes to CF and my depression….but anyway. My weight is just fine and on the high-end of fine. I’m not a fan but that doctors like it. Dang medicines making me gain weight. I might end up being one of those “fat” CFers. Well I already feel that way but on to the next subject. Continue reading
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!!!!