Goal = 40%

I just had clinic this past Monday and my lung function stayed steady at 34%, what it has been since April. I know that lung function is just a number and that a person with CF shouldn't get too wrapped up in it. That it's more about how you feel, rather than what number you're at BUT my goal for the last few years now have been to get my FEV1(forced expiratory volume per second) to at least 40%. Ever since I got the flu back in 2013 I've been hanging around in the mid 30% range. The reason that I personally want to get to 40% is because I would become eligible for so many more clinical trials(and it is always nice to see that number go up rather than down).

The Cystic Fibrosis Foundation has recently put clinical trials at the forefront. Last month they added a Clinical Trial Finder to their website. You can search by location, by mutation, even by lung function! Research into the disease has come leaps and bounds because of those willing to participate in clinical trials. I can't wait to do it again! Last September I was lucky enough to participate in a clinical trial for Orkambi for those with lung functions lower than 40%. From what I remember, it was a 24 week trial and took place at the hospital where I go for clinic. Unfortunately, I didn't experience any benefits of the drug, however; there were no negative impacts to my health either and I was able to complete the full 24 weeks. Even though Orkambi was not able to help me, I know that there are other drugs in the pipeline that have the potential to help and possibly increase my lung function.

This may be an unobtainable goal, since it's often said that once enough damage to the lungs have been done, it's often hard to reverse it. I'm going to stay optimistic, with enough hard work and motivation(and possibly some antibiotics thrown into the mix), one day I might get there. Here's to hoping!

For those with CF or any other kind of condition, have you ever participated in a clinical trial?

Paying For A Chronic Condition

Trying to afford medication for a chronic condition like Cystic Fibrosis can take a toll on one's wallet. Luckily, the past few years I have been told about some money saving programs that can help ease that burden.

So, the inspiration for this post came from a conversation that I had with a cashier at my local grocery store. She has a daughter with CF, and the only reason I know this is because we saw each other in the waiting room before a doctors appointment. Later that week, I was in her checkout lane and we got to talking and she said her daughter just got on her own insurance and is having difficulties as far as being able to pay co-pays, she is even becoming more lax with taking her daily medicines because she is finding a hard time paying for them every month. I shared with her the different financial assistance programs and co-pay cards that I am apart of and she replied that she had no idea that many of her daughters medications offered such assistance. I feel like this is more common than I thought, since I just learned about a lot of these programs within the last few years and I saw a post on Facebook a few days ago in a CF group asking for advice with help paying for co-pays and hospital visits.

Since I am pancreatic insufficient, I have taken different brands of enzymes throughout my lifetime. Well, the brand Creon, which I am currently on, is part of a program called CF Care Forward. If your copay is under $50, your prescription will be free. If it is over $55, your co-pay can be as little as $5. With the program, they send out nutritional supplements and multi-vitamins made especially for CF patients. I was so surprised when my first order of supplements came in and they sent me a WHOLE CASE of Ensure!

I learned about this program from my CF clinics Nutrtionist, who offered me a welcome packet that came with a card that I had to activate. If you are unable to get a welcome packet, I believe that you can still register and request a card from CF Care Forward.

I know that a lot of fellow CF'ers also take the inhaled drug Pulmozyme. I have taken this medication for as long as I can remember but just learned that they offered co-pay assistance 2 years ago when I was calling in my prescription and the pharmacist asked me if I knew that Pulmozyme offered a co-pay card. Thank God for that random pharmacist because she has saved me a lot of money over the past 2 years. To learn more and enroll in the program please visit Genentech Access Solutions.

Anti-biotics were a different story for me. For the longest time I was on a generic of TOBI, tobramycin, since my insurance required me to take the generic of a medication if one were available. Since I was on the generic, there was no co-pay assistance program I could take part in. However; I recently switched to Cayston because I was growing resistant to tobramycin. I could not tell a difference in how I felt on my 'off' months compared to my 'on' months. We decided to give Cayston a try and so far I am loving it. I would assume that anyone taking Cayston already knows about the assistance program since you have to work with them to obtain the nebulizer and nebulizer cups that can only be used with the medication. For those interested here is the link: Cayston Access Program. For those on the medication, be sure to order yourself a Cayston Carrying Case for the nebulizer, it's free and keeps the nebulizer safe, since it costs a lot of $$$ to replace. It also makes treatments on the go so much easier!

For those who do take TOBI, or the TOBI podhaler, here is the assistance program offered by the manufacturer: TOBI PodCare+.

Lastly, Orkambi. Even though I was only on the prescribed drug for less than a month before it was determined that it was not helping me at all, I felt like the people over at Vertex really want to help their patients pay for the medication, since a years worth can be upwards of $200,000 without insurance. Vertex is also the manufacturer of the drug Kalydeco. I know that there is a bit more paperwork involved in getting into Vertex's financial assistance program and your doctor will have to fill out a few forms as well and send them off. For more information visit Vertex Guidance and Patient Support.

These are just my experiences and I understand that these programs work on a case by case basis and an individual's insurance is also considered when being considered for program eligibility. I hope that these links can help someone and save them some money as well.

If you are part of a financial assistance/co-pay card program that I did not include, please share in the comments.

Maintaining Life with Cystic Fibrosis

Continuing on from my Introduction post, I thought that I would share a little about my life living with a chronic illness. Although I don't let Cystic Fibrosis define me, it is still a big part of my everyday life. I can sometimes spend 2 hours a day just on maintenance; as in breathing treatments and airway clearance.

A standard treatment session for me includes:
30 minutes of The Vest(airway clearance method) inhaling Albuterol, which is a brochodilator(opens up the airways)
inhaling Pulmozyme, a mucolyte(mucus thinner)
and if I am on my 'ON' month of Cayston(antibiotic) I inhale this medication once my Vest session has finished

On top of the maintenance that I do for my lungs, I also take up to three Pancreatic Enzymes with every meal. For those with CF, mucus clogs the pancreas, making it hard to digest and absorb the nutrients from the food that we eat. Enzymes help the body absorb carbohydrates, proteins and fats. If I don't take my enzymes like I am supposed to, you can see me running to the restroom within 30 minutes of eating a meal. It's also very important that I take vitamins as well. People with CF have a hard time absorbing fat soluble vitamins(A,D,E and K). I currently take a multivitamin that has high doses of ADEK and I take an additional 500 units of vitamin D, since my vitamin D tends to run low. When I am sick with an infection I'm prescribed antibiotics. I am not going to get into those right now though, since they tend to change each time.

At the beginning of the year I was prescribed supplemental oxygen. I am currently on 2 liters with activity and while sleeping. The o2 was prescribed to me due to my low oxygen saturation levels during my 6 minute walk test(6MWT). During this test oxygen saturation levels are monitored while walking at a leisurely pace for a total of 6 minutes. If at any time, sats drop below 88% supplemental oxygen may be considered. Normal levels are anywhere between 95-100. If I'm sitting in place, my sats tend to run around 91-94 depending on the day and how 'junky' I'm feeling. However; walking, even if on my treadmill, my sats can go down into the low 80's. If I go out I always make sure to bring small oxygen tank and my pulse ox meter with me. It is very important to keep oxygen saturation at safe levels (over 88%) because low levels can have negative effects on the lungs, heart and even the brain.

Well, these are all of the CF medications and therapies that I do in an average day to keep me going. If you have Cf and take any medications or any therapies that I don't have listed, I would love to hear about it. I love learning about new things to keep me healthy.

Hello. I'm Michelle!

Hello and Welcome to my new blog: Breathing in Hope. My name is Michelle and that handsome man next to me is my husband, Peter. We met back in 2007 and married in 2012. We have two dogs; Copper and Kaiah, and one cat; Muffin.

The idea behind this blog is to chronicle day to day life experiences as well as share Pinterest 'wins and 'fails', and share the progress that we have made on our house(which is a constant work in progress). However, the main reason for starting this blog is to share the ups and downs of living with a chronic illness. I have a lung disease called cystic fibrosis. Although cystic fibrosis(CF) is mainly a lung disease it can effect other organs of the body. I struggle with respiratory and digestive issues daily.

I want this blog to, hopefully, chronicle my journey to a new, healthier life. A life full of breathing deeply.