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!

Emergency Room Trip

For those of you that haven't heard, little Sarah Murnaghan is now eligible to receive a lung transplant using an adult lung. This is terrific news! However, the doctors say that she may only have even as little as a few weeks to live if a transplant doesn't happen soon. She has already been waiting 18 months.  So, you know what to do...

As for me, I had a little scare last Thursday night. At around 9PM I started coughing a little (nothing unusual) and all of a sudden coughed up a little blood. Gross I know, but it happens at times. Since I cough all the time anyway, vessels in my lungs are often weakened and sometime burst causing that to happen. Long story short, I went to the ER in town who took blood and did xrays. Then the doctor came back and said that he saw something "not right" on the xray and that I needed to be ambulanced to Barnes. That's when the really long night started. After being up since 5:30 that morning, my day (and hubby's) ended up going until about 6PM the next day! We both only got about an hour of sleep or so in that period of time. Plus, me being me, as soon as I got home at 2PM Friday I took a shower and headed to work for 2 hours!  : ) That was my choice...

After arriving around very early morning on Friday in St. Louis at Barnes-Jewish Hospital, they then started THEIR blood work and xrays. I also did a Pulmonary Function Test (PFT) and scored only a few percentage points lower than 3 months ago. So with the data the doctors collected, they ruled out that it was Pneumonia and just called it a slight lung infection. That doesn't really surprise me since I've been coughing since March. I am very grateful for the "easy" fix and pray it continues to work well.

The doctors prescribed 750mg of Ciproflaxin twice a day for 21 days. This stuff is pretty strong, looks like a horse pill, and tastes like poison. I literally want to puke thinking about how bad it tastes when it touches my tongue. It's awful and starts disintegrating immediately when it touches  anything wet. I can't have dairy too close to taking it, must drink a lot of water, blah blah...yuck. I am feeling better though with the exception of the side effects of the Cipro.

It's amazing how fast fear can creep into a situation. When the doctor said I needed to be hospitalized you would have thought my head heard "get ready to kick the bucket". I had to remind myself that everything would be ok and that "God has this". When I was laying in the hospital bed it was the weirdest thing, but I kept hearing a full instrumental version of "Amazing Grace" playing. I mean signers and all! I'm very grateful that I was not required to stay the normal 3 day to 3 week hospitalization that many CFers are forced to do in order to continue living. Ten year old Sarah has been in the hospital for over 100 days.

So the lesson today? Don't let fear over take you because it acts like a mudslide or quicksand. Fear can take over very quickly and consume you! Also, realize how important your life is. Mend those broken friendships, pursue your life goals and ask God to change that bad attitude or habit that you struggle with while there is still "time". Appreciate everyday and every breath because you don't know when the last one will be here and gone.

1 Corinthians 16:13

Be on your guard; stand firm in the faith; be men of courage; be strong.

Pray for little Sarah

Please pray for Sarah Murnaghan, a 10 year old Pennsylvania girl, who is in the end-stage of Cystic Fibrosis. She is ineligible for a lung transplant because of her age and the low availability of pediatric lungs. The required age is 12 for an adult lung transplant. Please say a prayer for this child and her family. To read more about Sarah's story, please click here (Huffington Post).

A lung disease is a very unique sickness to have to deal with for your whole life. It's exhausting, frustrating, expensive, and deadly (no cure). Every breath a CF patient takes reminds them that CF is in the body. On top of that, many CFers experience digestive system issues and has to take medicine every time food is ingested. THAT is another reminder (especially when you forget the meds). Although this diagnosis is depressing, I must do all I can to be proactive and positive. CF is a card I was dealt in life and every person has their own deck to deal with. Bad things happen to "good" people - yes. Good things happen to "bad" people - yes. No matter what happens, we all still have choices to make.

If you can think of something sad or tragic that has happened in your life that has affected you (positive/negative), think about what things you have learned from it. For example, a loved one dies. Perhaps you learn to find more value in life or you learn to love others more. You loose your job that you've had for 25+ years and your life falls apart, but then you realize that "LIFE" was waiting for you and finally now you can have some long over due fun in life and get happy again. Maybe a stranger blows you off making it seem like YOU are the weirdo! Then they become a great friend. Who's the weirdo now? ; ) Or you have the break-up of your life and down the road you realize it was the best unanswered prayer.

Look at life as a whole. There are sad things going on each day in every crevice of the world! I believe that we all suffer at times so that the good of people can shine through the darkness. It's hard to be selfless and to make time, but just remember, if it was you needing help, wouldn't you want others to stop and lend a hand (or ear)? Please make the time today to say a prayer, make a phone call, give an extra hug, donate money to storm victims or starving people.  Do something.  Make a difference and remember...Hey, we are all in this together.

Thank you for your support and I hope you take a moment to pray for peace in the Murnaghan family while they are going through this difficult time. God's got this no matter the outcome. Thank you for taking the time to read this blog too.  I'm amazed at how many people mention it to me. I didn't think anyone was really reading!  : )  I'll update again soon.  Doctor appointment on the 10th.

Please don't take away Disability Benefits...

There is still much work to be done to prevent changes that could make it more difficult for people with Cystic Fibrosis to receive disability benefits. Now it's time to talk to those senators! 
Send a message to your senator by clicking here.

The CF Foundation recently worked with several House Representatives to send letters to the Social Security Administration that explains the concerns about the proposed disability benefit eligibility changes. The last post asking for your help resulted in over 9,000 messages (collectively) from advocates throughout the US. Let's work together and do the same with the Senate!

Well, summer is here! So is coughing. : / Going from hot and humid to A/C isn't always the best for me. So needless to say, our house isn't usually that cool inside. We don't mind though. As long as we have a fan on at night we can usually make it through ok...lol. We haven't had TV channels for over 5 years either! It's amazing what you really can live without. I don't have FaceBook at this time either. Gosh, what do I do with my time? A lot of other things!

My next doctor appointment is coming up June 10th so I'll give another update later. Thank you for all that you do! Together, we will keep adding tomorrows to lives of all people with CF - Including ME!

Please Don't Cut Funding!

Cystic Fibrosis research does not receive as much attention and funding as, say, Cancer or Leukemia.  Currently, States are in the middle of making important program funding decisions that will greatly affect the availability of high-quality, specialized care for CF patients. In addition, several States are proposing changes that will make it even HARDER for CF patients to receive disability when they really need it. On top of those looming possibilities, the government recently approved drastic funding cuts for medical research and drug review. Please let state representatives know that this funding is needed and is very important to someone you know!  Also please take the time to let the Social Security Administration (SSA) know that when CF patients get to a point where the sickness will not allow them to work on a regular basis, disability is important and necessary for CF patients!

As a CF patient, I’m sure that many “sick” people can relate, having the money and INSURANCE to cover necessary medical drugs is extremely important and often a frequent stress factor in life.  Recently while on the CF Pharmacy website, I discovered that the newest drug, Kalydeco, which I am not yet prescribed to take, is almost $31,000 for 60 pills if I didn't have insurance!  My nebulizer medicine is $2,657 for 30 days. Another example is my Pancreaze enzymes which I must take multiple of each time I eat.  That’s $218 per month (give or take). Sometimes, the future seems so unknown when it comes to being able to pay for medicines so I can survive. At least I am fortunate enough to have the opportunity to get medicine if I need it.  Third world countries have a much larger need and it’s hard for them to obtain the necessary medicines.  Worldvision.org multiplies monetary gifts by 10 to help those people in need. (Just thought I’d mention that!).

Well, April is almost over and May is within reach. I’m ready for the sunshine (and exercise!). I’ve been a little sick lately but this weekend it seems to have gotten a little better. Thanks for all the prayers and support.  You are appreciated and loved back!

Spring? Is that really you?

What a wonderful weekend of weather and good times!  All except the part where my car stopped running....apparently it really does mean that you need gas when the dial says so on an old car. : ) I thought you could run those below the red line?  Anyway....

In March, I had an appointment which yielded good results. My breathing test's FEV1 results went up 3% which I can give credit to daily breathing treatments with the Vest System, Pulmozyme nebulizer, and exercising on my elliptical. Hopefully, now I can get outside more with the nice weather. Despite the good test results, the last few weeks I haven't felt the best, but my friend Mucinex has been helping me out.

Thank God for this weather...how refreshing! Have a wonderful week.

It's cold...ready for the heat again!

I made it to New Year’s Eve without getting too sick. Usually I get sick before Thanksgiving! So I did very well this season so far. I’m still dealing with nose stuff and lung stuff, but I’ll take it over anything worse.  I have another doctor appointment in March. Luckily I was able to sing yesterday at church. I had to miss my last scheduled time because I was coughing insanely.  

CF research has been discovering and creating wonderful new treatments for people like me, however, with the medical funding cuts that the government has/is making, improvements for my life and others with CF will be delayed.  The researchers will then have to rely more so on private donations. Please pray cuts stop happening and do your political part and TELL them to stop! This will effect anyone with a medical condition that requires treatments, medicines, etc. 

On another note, just a few days ago we sold our house! Thank God. I much more prefer to have only one house at a time. : )  Thank you for all the prayers and encouragement for that situation.  Also, thank you to all the people who go out of their way to check on me and send me cards of encouragement, etc. That means so much.  It truly does. That unexpected support really helps lift a spirit. I encourage you to make it a goal this week to contact a friend or two who is living with a disease of some kind and encourage them. Just because you can’t SEE their ailments, doesn't mean they don't exist....  ; )   

Have a great week everyone and try to stay warm.  I'm ready for the warm sunshine again!