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
Wednesday, September 2, 2015
Friday, July 3, 2015
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 (OrkambiTM) 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.
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.
Saturday, June 6, 2015
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
"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
Saturday, April 18, 2015
More CF Treatments Being Developed
Spring is in the air! Yeah for warmer weather, but yuck for allergy season!
My doctor appointment went ok in March. My PFTs were around 89, I believe, which was lower than the last time, but I was not feeling well during the visit. Everything else was good though. Praise God!
The Docs switched my pancreas enzyme medicine from Pancreaze to Creon due to insurance demands. I was nervous about the change since I had been taking it probably over 10 years, but fortunately, I haven't really noticed a difference since I started a few days ago. So that's great.
Recently in CF news - Robert J. Beall, Ph.D., President and CEO of the Cystic Fibrosis Foundation sent an email out stating: "The Foundation has announced a $14 million expansion of its research agreement with Genzyme, a Sanofi company, to support development of new treatments for people with the most common CF mutation, F508del. (I have two copies.)
The agreement will support research programs aimed at identifying compounds, known as correctors, that could potentially fix the underlying cause of the disease. During the expansion phase, Genzyme will focus on further developing select compounds to advance them into CF clinical trials."
This is more big news for CF patients! Keep the studies going and get those meds out to us!! Thank you to all those who do put time into studying and developing medicines that will help us live better lives. Also, thank you to those who financially support their efforts.
I wanted to encourage you to also help people like me and others with untreatable diseases to voice your support of clinical drug trials. The Improving Access to Clinical Trials Act (IACT) will expire in just 6 months! This important law allows those with rare diseases, like cystic fibrosis, to participate in clinical trials without fear of losing vital health benefits.
Members of the House and Senate have introduced the Ensuring Access to Clinical Trials Act of 2015, which would remove the expiration date from IACT and allow it to become a permanent law. Please tell Congress to Pass the EACT ACT! (click that phrase).
Have a wonderful weekend my friends!
Link to Full Blog: Jen's Breath of Life Blog
Send private messages to Jen in the "Contact Jen" section on the right.
My doctor appointment went ok in March. My PFTs were around 89, I believe, which was lower than the last time, but I was not feeling well during the visit. Everything else was good though. Praise God!
The Docs switched my pancreas enzyme medicine from Pancreaze to Creon due to insurance demands. I was nervous about the change since I had been taking it probably over 10 years, but fortunately, I haven't really noticed a difference since I started a few days ago. So that's great.
Recently in CF news - Robert J. Beall, Ph.D., President and CEO of the Cystic Fibrosis Foundation sent an email out stating: "The Foundation has announced a $14 million expansion of its research agreement with Genzyme, a Sanofi company, to support development of new treatments for people with the most common CF mutation, F508del. (I have two copies.)
The agreement will support research programs aimed at identifying compounds, known as correctors, that could potentially fix the underlying cause of the disease. During the expansion phase, Genzyme will focus on further developing select compounds to advance them into CF clinical trials."
This is more big news for CF patients! Keep the studies going and get those meds out to us!! Thank you to all those who do put time into studying and developing medicines that will help us live better lives. Also, thank you to those who financially support their efforts.
I wanted to encourage you to also help people like me and others with untreatable diseases to voice your support of clinical drug trials. The Improving Access to Clinical Trials Act (IACT) will expire in just 6 months! This important law allows those with rare diseases, like cystic fibrosis, to participate in clinical trials without fear of losing vital health benefits.
Members of the House and Senate have introduced the Ensuring Access to Clinical Trials Act of 2015, which would remove the expiration date from IACT and allow it to become a permanent law. Please tell Congress to Pass the EACT ACT! (click that phrase).
Have a wonderful weekend my friends!
Link to Full Blog: Jen's Breath of Life Blog
Send private messages to Jen in the "Contact Jen" section on the right.
Wednesday, February 25, 2015
Oh Summer, Where Art Thou?
First of all….
I’m behind on posting!
Back in
December 2014, the CF Foundation announced a $15 million research initiative
with biopharmaceutical company Shire which will support the development of a
new cystic fibrosis treatment targeting the underlying cause of the disease.
This is a BIG deal and oh so important! Praise the Lord!
Members of the House and Senate have introduced the
Ensuring Access to Clinical Trials Act of 2015, which would make
permanent a law that allows those with rare diseases, like cystic fibrosis, to
participate in clinical trials without fear of losing vital benefits. However,
the act is set to expire this October! As a result, the CF Foundation urges
people to make their voices heard in order to help make the Act a permanent
law. Please click the link below to let the people who run this country know
how important this is for many people!
Link: Help Support the Act!
As innovative new treatments are
developed, it is vital that all people with CF and
other rare diseases, have the ability to participate in clinical trials without
fear of losing their benefits.
Now, as for me and my
health lately... well, winter stinks and I can’t go outside. So as soon as the weather breaks and the sun
is shining again, I’ll be out there soaking up the sun! (Maybe that will
help my Vitamin D deficiency…).
I’ve been coughing
pretty rough in the morning for a few hours then it seems to calm down
some. I’ve been keeping up with my
Pulmozyme Nebulizer treatments and Vest treatments daily (go me!). Staying away from sick people and places
seems to be helping some too. Kids this
year seem to be sick all the time! Sorry
I haven’t seen some of my family or friends lately because of it… L.
My last appointment
was supposed to be in February, but due to the weather’s behavior, I had to reschedule
for March. Hope I don’t catch a cold
from being there when I go!
As usual, thank you
for taking the time to read. I appreciate the thoughts, prayers and messages.
Patiently waiting for
summer,
Jen
Subscribe to:
Comments (Atom)