Update and depression talk

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

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

I’m a winner….

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

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!!!!

 

 

Day(s) of Recovery

I now understand why my mom slept all the time near the end of her life.  No I’m not saying I’m at the end, don’t worry.  She would have a good day and be able to hang and do a bunch of things then the next day she would sleep pretty much all day.  She may have even needed 2 days of recovery depending on what she had going on.  I’m sure I have written about this before but the reason I am writing about it now is because we had a double date last night for dinner and the Dan + Shay concert.  Before that I was able to go to a very good friends promotion ceremony which was about 2 hours long with the ceremony and the party after.  My busy day started at about 12pm with getting ready and we got home around 11pm.  I was so very tired when we got home that I wanted to just go to bed but that’s not possible, I have to do a breathing treatment first. Continue reading

21 days down…

IV antibiotic update:  Last Thursday (the 1st) I had my regular labs drawn.  I received a call Friday morning to stop the Colistin and “drink enough to float a boat” because my creatinine had gone up to 1.2.  That meant that my kidneys were starting to “get hurt” by the colistin since it is filtered through the kidneys.  We don’t need any more kidney injuries like we had a year and a half-ish ago when my creatinine went way up to 6.9!  It is better to stop it before it gets to bad.  I had my labs rechecked on Monday (the 5th) and my creatinine was back into normal range.  I continued the cefapime every 8 hours for the last 7 days of the 21 day regimen. Continue reading