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

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.

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

Yuck...

The title of this entry describes how I feel.  The day after Thanksgiving I got "sick". 

It started in my nose then by Sunday was in my lungs. I've coughed so much and so hard these last few days it really hasn't been fun. Thankfully, I called the afterhours emergency CF number and a doctor was able to call me in an antibiotic (Cirpo 750mg for 14 days) so I will be taking my 3rd pill in a couple hours. I'M SO GLAD I DIDN'T WAIT TO CALL ON MONDAY. 

I think I'll be taking a pain reliever too. I'm not sure how to describe the pain when I cough so much and so hard but I guess one way to describe it is that my whole upper body tenses and cramps up each time I cough so when I'm having a coughing fit, my muscles don't get to relax and they become very sore...Kind of like making my lungs do 100 push ups every hour or so. I've been wheezing a lot and I can hear rattling at times too. 

It's early in the morning now as I'm writing this (around 5AM) and I'm debating if I should go to work or not.  I have a lot to do this week, especially today. They are used to me coughing there and I'll be in a warm building so I'm thinking about going and at least trying to get some things done. Besides, I feel like if I sit around too much, the gunk will just settle more in my lungs. Maybe a half day of work is in my best interest.

Also, I recently found out that my enzymes will no longer be covered in 2015 under my insurance plan. It will cost $159,000+/year to pay for them out-of- pocket. Therefore, I'll be switching to Creon after my next prescription refill arrives soon. My doctors ensure me that there won't be much of a difference, but switching meds is a little intimidating to me.

I'm sure praying I feel better soon. I have a lot going on and I have play practice run through for the next couple weeks until opening. I know some of you just thought, "Oh she has plenty of time to get better", but this could actually last a while. I ask for your prayers that I am able to recover quickly.

God's got this. He will help me walk though this with all of you. Thank you for your continued prayers and support.

Doctor Visit Update

Monday I had a doctor appointment which went well. The doctors made some changes to help protect CF patients during their visit. For example, I was required to wear a mask to keep germs from going or coming out (if I were to be "sick"). The docs also wore thin cover gowns and gloves when they were visiting with me in the exam rooms. I understand the gloves, but the gowns I'm not really sure about... I appreciated the mask a lot.

My PFTs were good and about like they were at the last visit. With harvest season going on, I have extra gunk, if you will, in my lungs so that's why I think the score wasn't a little higher. I've been doing some extra curricular activities the last couple months which involve dancing and singing so that has really helped keep me active.  I've still been doing my VEST treatment and Pulmozyme nebulizer daily too. They also took a few gallons, I mean, tubes of my blood in order to review my vitamin levels and such.  It's been a while since that has been done so here's hoping for a much higher Vit D level than what it has been in the past! Maybe this will be a first in YEARS that my level is actually in normal range! My BP was "calm" and my Oxygen was about 98%. My weight was...wait a minute...not going there.  ha-ha

It's so wonderful to have something fun to do that helps keep you distracted from the other "stuff" in life for a while. The dancing and singing I'm doing makes me very happy even though my body sometimes is a bit sore afterwards.  It's all worth it!

As usual, thank you for taking the time to read my postings. If you receive this message via email, below is the link to the blog site if you wanted to read past posts or contact me via email (right sidebar of page). I'm pretty sure you can leave me comments too at the bottom of the post. Have a blessed Fall!

Full site:Jen's Breath of Life Website

Must Be Harvest Time...

This last month has been a whirlwind! I’ve been super busy with lots of things. And now that the weather is changing and harvesting is happening, I am feeling it.  My left ear clogs up during harvest and planting seasons for some reason.  Fortunately, it doesn’t hurt, I just can hear well! Last night I went to bed at 8:20pm. The weather radio went off sometime in the night regarding possible flooding issues, but I just threw a pillow over my face and went back to sleep.  Coughing is happening a lot too. My throat muscles even feel tight like I have a “lump in my throat”. I’m hoping I’ll feel better over the weekend. 

I have a doctor appointment coming up soon so we will see what they say. If I’m not feeling better by Monday, I guess I’ll call them and see if I can get meds. Yuck! That stuff makes me feel worse sometimes and I can’t eat dairy with it. I like me some dairy…. :)

Please pray for me to get better and to keep a positive attitude. Feeling sick year round and then having it get worse for weeks/months at a time is exhausting. Anyone who suffers from an unending ailment can relate. Sickness is hard for a “healthier” person to deal with, but it’s even harder on me to keep going to work and keeping up with everyday activities/duties. I labor at breathing more and I usually just don’t feel well.  Making time for breathing treatments, medicines, vitamins and exercise is important and sometimes hard to fit it all in with everyday life.

Anyway, thank you for reading and thanks for prayers. Send me a message anytime from my blog page or email me directly if you have my email. I love hearing from you. I will hopefully update again soon.

"Be patient toward all that is unsolved in your heart, and try to love the questions themselves. Do not seek the answers that cannot be given you because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer." - Rainer Maria Rilke

Humid Days - Go Away!

I don't enjoy humid days. It's not just because my hair gets really puffy, it's because it seems to make breathing much more difficult. Mornings hours are the worst. I usually wake up with the urge to cough so I try "fixing it quietly" with a couple coughs that resemble the sound of choking on food (you know what I'm talking about...). After about 20 of those, I give up trying to control my breathing and sit up to start the full blown morning cough. It usually happens routinely around 5:30 each morning so sleeping in hardly ever happens!  

Sometimes mornings are so bad I feel like I'm either going to choke or just stop breathing all together. At times it's kind of scary. I tell the gals at work to come check on me if I don't show up in time!

Going to bed or taking a nap in the middle of a day, which I can now see when I was a kid why my dad enjoyed his afternoon nap so much, is sometimes hard for me to do too.  I have to switch from a vertical to horizontal position and my lungs have shared with me that they don't like to do that - quietly anyway. 

I've been working harder on watching what I eat and how much (that's the real problem). Food and I like each other very much. Especially baked chips and rice. Anyway, I've been doing ok during the week but then I tend to have the "see food" diet on the weekends.

Life has been busy with work, extracurricular activities and the laundry that seems to not wash itself. The key is staying active once it starts turning cold outside.  Can't let my lungs get too bored. 

Well, that's all I have for now.  As usual, thank you for reading my blog and for keeping me in your thoughts and prayers.  I'd love to hear from you. If you'd like to contact me, please send me a message via the side bar on this page. Have a great September everyone!

Good Check Up

About a week ago I had a check up and my PFTs went up a few points from last time so that is good. Though, I think they forgot to take my blood to check vitamin levels, I didn't mind a rain check. :) My doctor spoke some about the medical advancements in the recent news and he anticipated that the new drugs might be available to patients in the next year or so. He wasn't planning on putting me on the 1st generation of the drug if he can keep from it though. 

Other than that, not much else to report (which isn't necessarily a bad thing...).  Enjoy your summer everyone!

Big Day for CF Research!

I received a great email today from the CF team. Vertex Pharmaceuticals announced the results from the Phase 3 clinical trials of Kalydeco and VX-809, a combination of drugs, in people with two copies of the F508del mutation (which is what I have). Simply put, the results are very promising and would improve the lives of people living with CF! Vertex will be submitting a New Drug Application (NDA) to the FDA hopefully by the end of 2014.  

This fantastic news also means that they are one step closer to finding new treatments that would target the root cause of the disease. That is HUGE.  

Please continue to pray for the people developing these medicines, for the FDA's approval and for people like me who desperately want a cure to be found which would allow us to have dreams of living healthier and longer lives past the average life expectancy which is in the mid-30's. Of course, many of you know that statistics are just that: Statistics. Some CF-ers are living well into their 40's too. However, I will admit, turning 30 messed with me some. As a result, seeing far into the future is hard for me at times. I have to remind myself each day to live life to the fullest no matter what may lie ahead and ALWAYS be grateful. 

I have a doctor appointment Monday. I'll let you know how that goes. The Vertex press release is below too if you are interested in viewing. Thank you for reading this blog everyone! It means a lot.   : )

Vertex press release: Big News!

Buying Plane Tickets in March?

Vacation time is just around the corner for some. If you are thinking of traveling with American Airlines and need to purchase a few more points, please consider ordering them via the link below:

Through the end of March, when you make a donation of $25 or more to the (CF) Foundation using the American Airlines donation page, you will receive 10 AAdvantage miles for each dollar you donate.

Click the link above to purchase more points for yourself and help others like me! Happy travels!

Winter Slump

Winter weather go away!  Who is ready for some warm weather and green grass again? I AM!!

Earlier in the week I went to a doctor appointment and my FEV1 (PFT) went down to 86% from 93% at my last appointment. Thank you cold weather for welcoming my laziness... Fortunately, my other results were good. BP was low (almost too low though) and my Oxygen was 99%. Apparently I have gained some winter weight as well.  : )  

I'm continuing to do pulmonary treatments using The Vest System and Pulmozyme. I also have been drinking Probiotics to help with my immune system this winter. I think it has been helpful. Along with those things, I've been taking a general multivitamin, 10,000 Vitamin D3, 500 Vitamin C, allergy pill, and of course my enzymes with every meal. I started doing a bit of exercise since the appointment as well. 

As a person who is reminded every cough and meal that I have Cystic Fibrosis, please remember to check in with your friends and family who are suffering from a daily fight with something. Encourage them. Many of you reading this also experience something in your everyday life that you feel you would like support in or to at least know others care. Illness management is exhausting and sometimes very discouraging, especially when you throw life into the mix. Let's work together and check up on one another! Be an encouragement. I'm so thankful that God is active in my life and keeping me going strong all while working out His plan.

Check out the latest on CF Research! 

Merry Christmas and Happy New Year!

What a year it has been... Thank you to all who participated in the Clean Water project. The goal was to raise at least $1,200 to go towards a water well and because of people like you, the funds exceeded $1,340. If you would like to still give a tax deductible donation click below!

The deadline is December 31st!    Clean Water Project 

So far this season, I have tried hard to stay away from people who are sick or just stay at home away from extra germs. In fact for my 30th birthday, we went so far away from cold weather, we made it to MAUI! It was beautiful and a nice break. Below is a picture from our hotel balcony. It was right on the beach!

I had been coughing a lot and even ordered antibiotics, but the bad coughing ceased the day I picked up the medicine! So I have it on stand-by now. My next doctor appointment is towards the end of January. 

I pray all of you had a wonderful Christmas and will have a safe New Year in 2014. Another year of opportunities and decisions are ahead. Remember that when you let God do the leading, you end up on a much better path and life will be a little easier when you hit pot holes...

Let's Give the Gift of Clean Water - Together!

Hey everyone! Just a quick update. I went to my CF doctors a few weeks ago and overall it was a good report. I got my flu shot too. I am in the midst of lots of coughing and sneezing in the last week or so. That's no fun, but I know I'm not alone this time of year!

Now, moving on... I wanted to do some special things this year for my birthday and one of the things I want to do is give the gift of clean water to those who need it very badly. This project isn't meant for me alone, but for all of you to join in. I found a website that does exactly what I was thinking of and, best of all, 100% of the proceeds go directly to installing the clean water source. When I registered my site, it was indicated that it would be placed in either Ethiopia or Cambodia. What a great way for a group of people to come together and help others, not only now, but for generations! 

If you feel led to give, please visit here: "You Shall Not Thurst" Clean Water Campaign

You may give with Credit Card, Debit Card or by using your Checking Account information. If you prefer not to give online but would like to participate, I am collecting donations and will donate on your behalf. Contact me in the "Contact Jen" section to the right if you need to. If you decide to give $1 or $100, I will be equally ecstatic! I would love for lots of people to participate. What a great opportunity that will make a difference in people's lives for generations! And by donating, you can say you were a part of making this difference.  

After the water source is complete, the Water Team will email you an update with information. Even its GPS coordinates! Please consider donating.  Even if it's just a dollar!  

The holidays are just around the corner. I hope all of you stay safe and have a great time with family and friends. Please remember the real reason for the season: JESUS!

Cystic Fibrosis Caucus

My meeting was scheduled very quickly with Representative Rodney Davis. In fact, it was the day after my last post! He came to town and I met with him and an assistant of his privately. I was very appreciative of his time and that he didn't rush me or make me feel like I was "just another person". He was supportive of CF research and was already a member of the Rare Disease Congressional Caucus. He also said that he will join the Cystic Fibrosis Caucus as well. Thank you Mr. Davis for your time and for promoting Cystic Fibrosis awareness. It is greatly appreciated. 

If you are interested in being an advocate for Cystic Fibrosis, here is a link that will give you basic steps on how to get the word out about the importance of CF research and support that is needed - CF Advocate . Remember, only about 30,000 people in the United States have been diagnosed with Cystic Fibrosis and 70,000 worldwide! CF'ers like me need your help, so please consider it. 

I appreciate everyone who supports me and other CF'ers no matter the way you show your support (prayers, advocacy, monetary donations, cards, emails, etc.). It's all very much appreciated and a promise that I will get to live longer days which will include more healthy breaths.

To view Jen's full blog and/or to contact: Jen's Breath of Life

August Update

Two months later and I'm still getting in medical bills from the "unnecessary" emergency room visit from two months ago. I'm sure some of you can relate to this kind of experience. I'm very thankful that I have insurance that helps cover a portion of it. For what little time and treatments I received, I can't believe the cost it has amounted too.

A good neighbor friend of ours brought over an article from "Discover Magazine" regarding updates on Cystic Fibrosis research and new medicines in the works (Sept 2013 issue). It's a good read if you have time and are interested in the developments taking place. I recently sent a request to meet with my State Representative to discuss my concerns about Cystic Fibrosis and continuing funding and healthcare coverage. I am currently waiting to hear back from him.

I can't believe it's August already! This summer has by far been the fastest one I can remember....yes even from when I was a kid in school. :) I hope that all of you have been able to get some free time with friends and family.

I know most readers of this blog receive it by email, but if you wanted to contact me, please go to my blog page and look on the right side of the screen for a form to email me. I'd love to hear from you. Even if I've never met you! Click: Jen's Blog. As usual thank you for all the thoughts and prayers. Jen :)

Things are getting better

Many of you probably have heard that little Sarah Murnaghan received a successful lung transplant last week. How awesome for her is that? Her mother reports that she is still in the ICU and doing well so far, but it is still a long road for her. Thanks for all the prayers for Sarah and her family.

I, myself, am doing well and am a little over half way done with my Cipro antibiotics. The medicine is so gross tasting as soon as it touches my tongue that I had to come up with an idea to get it down without gagging! Finally I tried some salteen crackers. I rub the salty side of two crackers all over my tongue and it masks the taste. Thank God because I felt like a little kid and wanted to hide when it was medicine time...    

My coughing has lessened a great deal and besides the side effects of the medicine (stomach issues and feeling tired/dizzy at times), I'm feeling pretty darn good.

Thank you to all who have subscribed to my postings and that are passing the word along about this blog. Have a great rest of the week!