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!