Please Request for CF Funding

Please consider taking a few minutes to request support for CF in your state.
 
From the Cystic Fibrosis Foundation -
As you know, many people with cystic fibrosis have to make hard choices about how to afford their care every day. Medicaid and other health programs in your state help ensure that people with CF and their families can afford the treatments they need to live longer, healthier lives. As state legislatures consider their upcoming budgets, let’s make sure the voices of our community are heard and funding for crucial CF programs is protected.
  

Click the link: Advocate for Your State's Budget

or copy and paste link - http://act.cff.org/FQ6xV2E

ALSO...

 

From the Cystic Fibrosis Foundation -

Right now, your lawmakers are determining funding levels for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), agencies critical to the development and delivery of treatments for cystic fibrosis. The CF community knows that robust funding for research and drug review are vital for the development of quality treatments for CF.

Click the link: NIH & FDA Funding

or copy and paste link - http://act.cff.org/Tuw1ye9

 

Thanks to your efforts these agencies received crucial funding increases last year, and we need to keep the momentum going!

To Read Jen's full blog or send a message, visit: www.jensbreath.blogspot.com

 

Please note, these links take you to an external website which is not part of this blog and is not monitored by the blogger.

I'm 32 and Doing Well

Hello friends, blog followers and supporters of Cystic Fibrosis! I'm sure some of you thought I fell off the face of the Earth... well obviously I didn't. :)

It's been 7 months since my last post...(shame on me), but I guess I didn't really have much to post about, which that's ok. Sometimes no news is good news, right?

This winter I stayed away from people and children as much as I could to maintain tolerable heath levels. I literally went to work and home most nights. On those days when the pantry was getting bare, I'd finally give in and go grocery shopping. Lately the weather has been much more pleasant and I've been soaking up the sun when I can. The dogs are loving it when I take them on walks too. :)

Back in October I was at the highest weight I had been so far in my life time. I somehow gained a fast 7 Lbs. My pants reminded me of that daily. I finally had to get new ones - meaning Goodwill Store or second hand...my favorite options for my wallet. In November, around Thanksgiving, my Grandpa passed away and the day after we laid him to rest I got really sick. It lasted weeks and I lost that "extra" weight. As a result, I have a "fat pants" pile now. Several months later I'm trying to gain back at least 3-4 Lbs for the next time I get sick.  

I know some of you just rolled your eyes when you read that. "Wow...4 pounds. You poor thing <cue the eye roll>." Actually, I think it is a big deal. First of all, how many of you are less than 5 foot short? I don't see many hands. I'm only 4' 10.5" on a good day so extra pounds are more noticeable. As for needing to gain weight, my CF pancreas insufficiency makes it difficult to absorb the fats that are needed to help maintain weight and that's why I have to take enzymes with each meal/snack. So, a few pounds really does make a difference. See...I wasn't making that up. : /

Anyway...I felt "sick", also meaning sicker than normal, until about the end of January. I remember at Christmas time, just after my 32nd birthday, I started 21 days of Cipro 750 2X day. I am truly grateful for what that medicine has done for me when I'm sick. TRUELY.

Since my last post, I have also started using Fluticasone for my nose.  As some of you know, the nose can also mess with your ears. For the last couple years, my ears would fill so the sound was muffled. It would last weeks sometimes. I'm also using ProAir inhaler when needed. Daily I am using my VEST and Pulmozyme nebulizer meds. I've been trying to drink Ensure Complete - the chocolate kind of course - more often. I take Creon 24,000 for each meal and I am trying to be better at taking my CF multivitamins more regularly. I know that my quality of life, if I even still had one, would be drastically different if these medicines didn't exist! I'm so grateful.

Recently I was reading through the 2014 CF Registry and discovered that Illinois was 1 of 8 states with 1,000+ CF patients. Hawaii only had like 17, but I'd still move there, don't get me wrong....
I also learned that CF people 18 years and older: 41% married, 35% work full time and 48% meet BMI goals. Adults 30+ have an average of 63 FEV (lung function measurement, which raised from 43, 20 years ago). The average life span is 39.3 years.

I appreciate all the efforts that go towards finding a cure and supporting me through this journey. THANK YOU.

Until next time, I'm going to keep singing LOUDLY with the lungs God gave me.  

To Read Jen's full blog or send a message, visit: www.jensbreath.blogspot.com

Late Summer Cold

Well, about a week ago a summer cold hit me....hard. I started sneezing on Monday and by Tuesday I was running a fever, had a lot of sinus pressure and had to plant myself on the couch. It made it's way to my chest so I'm still coughing... Because of the excessive coughing I've lost my voice for several days already. It's so frustrating and hard to work when you can't communicate like you are used to! 
Last Sunday I was scheduled to sing at my church and I couldn't because of the lack of voice. I was bumming... I'm praying and believing I will recover soon to a more normal health status for me. 
Have a safe Labor Day weekend friends!

Contact me by going to the full website and send a private message on the right side of the screen.  Full Site: Jen's Full Blog

FDA Approval of Orkambi

News straight from www.cff.org: The Cystic Fibrosis Foundation celebrates the FDA’s approval today (July 2nd) of the lumacaftor/ivacaftor combination drug (Orkambi^TM) as an important advance for the cystic fibrosis community. Orkambi targets the underlying cause of the disease in people with two copies of the most common CF gene mutation. Click here to read more: CFF.ORG - Orkambi

This is amazing news that will help many CF people live more normal lives and have a longer life expectancy! As I'm writing this and doing my breathing treatments (the VEST and Pulmozyme), I am very much looking forward to the improvements of my lung function and less coughing!!!! It may be a while before it's prescribed to me, but now I know it is an option (if my insurance covers it).

Thank you to everyone who has participated in the development of this new drug and who has generously donated to their research efforts. Thank you to the people who keep tabs on me and let me know about CF in the news too. That is so nice of you!  And most importantly, thanks be to God who has given me every breath so far.

Have a wonderful 4th of July everyone! 

Link to Full Blog: Jen's Breath of Life Blog
Send private messages to Jen in the "Contact Jen" section on the right.

Go Researchers, Go!

I recently received another great email from president Robert J. Beall, Ph.D., President and CEO of the Cystic Fibrosis Foundation. Below is part of his message:

"We have encouraging news to share about a potential new CF drug. Today, an FDA advisory committee, made up of independent medical experts and community representatives, voted  12 to 1 to recommend that the FDA approve the ivacaftor/lumacaftor combination therapy (Orkambi). 

While the committee’s recommendation is an important part of the FDA’s review process, the decision is not binding. The FDA has said it will make its final decision by July 5, 2015.

Orkambi targets the underlying cause of the disease in people with two copies of the F508del mutation.  Currently, the FDA is considering whether to approve the drug for people with CF ages 12 and older who have two copies of the F508del, representing nearly a third of all people with CF in the United States.

In clinical trials, Orkambi was shown to improve lung function in people with CF and significantly reduce the rate of pulmonary exacerbations, which can lead to frequent hospitalizations and worsening lung function. The drug was developed by Vertex Pharmaceuticals Inc. with significant financial and clinical support from the Foundation."

That's so great!  Thank you everyone who cares about finding a cure for CF. 

If you haven't already, budget times are getting closer and if you haven't already, please click the link below to send a prefilled email notice to your State Legislators about the importance of medical funding for people with diseases.
Notify State Legislators
Thank you!!!

Overall, I've felt pretty good. The humidity often plays a part in my daily coughing routine. Recently I started using essential oils in addition to my daily Pulmozyme and VEST treatments. For me, it some seem to help with some things, however, you should always talk to your doctor about it before using! I sometimes use/diffuse lemon, frankincense, peppermint and others.

I recently completed a bucket list item and passed a motorcycle riding class. I was one of two girls that passed the class and definitely the shortest in stature (all 4' 101/2" of me). It was challenging because of my shortness, plus it rained for hours!!! For breathing, it was sometimes hard to go from the classroom with A/C to outside and put a helmet on. (Side note: It's kinda gross when you have to cough and you have a full face helmet on...lol). At first they make you walk the bike around using your own strength. Doing that being short and on a hill was really hard for me! I was literally so physically exhausted when I got home you would have thought I just got done climbing a mountain!

Passing the class was a big deal to me even though it's a simple thing for others to do. It was a lot different than riding a dirt bike (which I have). The motorcycles are heavier and more CC's than my bike. Even the small size of my hands made it more challenging! I felt like I had arthritis in my fingers and hands for days after pulling in the clutch and break for so many hours. Thankfully, the instructors were fantastic (Thanks David and Tom).

I was reminded this past month how quickly life can change and how precious it is. I lost a friend, 42 years old, who died after complications from surgery (not CF related). Makes me want to get out a pen and paper, make a longer bucket list and actually continue to cross things off. Maybe that's what we should all try doing. Remember, each day is a gift and so is every breath...

Send a private email to Jen via the blog website (right column area): Jen's Breath of Life Blog