Tuesday, June 3, 2014

I admit defeat!

If you know me at all, you know that I can be very stubborn when it comes to just about anything. If you have been following my story lately, you are aware that I have been working on being 100% compliant with my breathing treatments in 2014. (I am now on day 154!) I have been doing all of my treatments, but it has come to my attention that I have not been doing everything in my power to better my health.

At first, I was completely satisfied with maintaining my lung function through the school year without getting the flu. In fact, I was pretty ecstatic. I was spending the first few months of 2014 feeling pretty good, but as the school year wound down, I started to feel a little under the weather. It continued to escalate through the month of my coming to a climax for my clinic appointment last Wednesday. I was feeling terrible with my nose completely congested and my cough remaining pretty constant and wet. I knew going into the appointment that my lung function would be down. Sure enough, it had gone down from 46% to 43%. My doctor wasn't extremely worried. In fact, she told me that she believed it would have been a lot worse if I hadn't been compliant with my treatments this year. That was good to hear, but I was still not feeling great. She wrote me a prescription for antibiotics (Vyvox which is used to treat the MRSA that I have in my lungs). I went home with a lot of mixed feelings. I was proud that I kept my lungs as healthy as I had, but I felt defeated because even with all of my hard work, my lung function dropped.

It was the next day that I saw a Facebook post from one of my friends and fellow CFers about his FEV1 numbers. He talked about being frustrated when he felt that his numbers weren't going up and what he did to change that. He had been doubling up on his hypertonic saline (treatment of an inhaled saline solution that causes the lungs to be irritated in order to help move mucus up and out of the lungs). Now, you have to realize that I have always been told to add in extra treatments when you are feeling bad, but it was something that I did not do very much of. Adding treatments meant taking more time out of my day to do something I really hated. This was the first time I had heard someone say they do extra treatments even when they aren't feeling bad.

As I read about the difference it was making in his life and in his lung function, I realized that I hadn't been doing everything in my power to make myself healthy. I decided that day to step it up. I'm still only doing two treatments a day, but I have amped them up quite a bit. Instead of just doing one hypertonic saline vial in the morning and one at night, I'm doubling it up! I do two in the morning and two at night. I have also increased the time I spend doing my vest (used for airway clearance). I went from doing that for twenty minutes to thirty minutes twice a day. Every morning and every night, I am now spending thirty minutes wearing my vest and breathing in my hypertonic saline.

I'm now on the sixth day of this new routine, and as much as I hate to say it, I can see a huge difference. Ha! I have never been one that wants to put in extra time to fight my CF, but it really does work. It's been miserable, and I really pretty much hate every minute of the intense coughing, but there is no doubt in my mind that if I did a PFT right now, my numbers would be closer to where they were three months ago. So, now when I say I'm being 100% compliant, I am really doing more than 100%! I am putting every effort into feeling my best!

Now that I am finally feeling better, I am going to be kicking the exercise back into high gear as well! Summer break is going to be good for me, and I'm hoping that I will see the benefits when I have my next clinic appointment at the end of August!

So, there you have it. One of the most stubborn people in the world has completely admitted defeat and given in to doing something she didn't want to. :) It's all for the greater good! I just have to remind myself each time I sit down to do my treatment that it really is making a difference, and I am just going to feel better after each one. I have to give myself a little pep talk every time, but I know I can do this! Here's to double hypertonic saline!! Here's to feeling better and doing everything it takes to reach your goals!


  1. I am so happy that you not only gave the double HTS a shot but you are seeing results already in how you feel. That to me is what motivates me every day is that I "feel" like a million bucks. Thank you for allowing me to give advice to our CF community. Keep up the great work at being NOW over 100% compliant. I am beyond proud of you cyster!

    Also think of this quote "Treatments are like money in the bank. Put the time in now and it will pay you in the future!!"

    Here are some links about adding more saline to our CF treatment.


  2. How do you do 2 vials in 30 minutes? I do my Vest for 30min, but one vial of HTS takes about 25 minutes (I used to have a Pari Vios, but recently got a Invacare and it still takes ~25 min). So between Albuterol, HTS, pulmozyme and colistin I am currently taking a minimum of an hour and 20 minutes each treatment session.

    1. One vial for me only takes about 15 minutes. My actual machine isn't a pari.... Maybe that makes a difference?

    2. What percent hypertonic saline do you use?

    3. Inhailing Hope....I would assume there maybe an issue with your compressor. I noticed that with my old machine it was taking almost 30 mins to get 1 HTS vial.

      I then got my 50 psi compressor. It's amazing and a must!!!

      I know I have read that your PFTs are lower and adding more saline at lower PFTs may cause a bleed. I have had a friend who followed my approach of adding another vial of HTS in am and started bleeding.

      You should contact your clinic before experimenting with the double HTS approach I have been using.

  3. Have you considered bumping up the concentration of salt as well? If you are using 3%, move toward 7%, if at 7%, try 10% - you can get the 10% vials from CF Pharmacy services. If you can tolerate it, it makes a BIG difference.

    1. Right now, the double 7% is kicking my butt still, but I will definitely consider going up to 10% in the future if I stop seeing progress with the double dose. :)