Thursday, May 7, 2015

CF Awareness Post Questions Day 7

What type of treatments are available for CF?

There are so many out there right now and many in the pipeline.  For a complete list you can visit

I will list what I take and explain why I take them.

DuoNeb – this is a bronchodialator which opens my airways up.  I take it at least 4 times a day when I am feeling good and 5 even 6 if I am feeling particularly crappy.  It is taken via a nebulizer.

Symbicort 160/4.5 – inhaled medication that helps open my airways and keep them open.  I take one puff twice a day.  I have to be sure to rinse my mouth out after using it so I do not develop a yeast infection in my mouth (thrush).

Spiriva – a new medication I just started to also help keep my airways open.  It is taken via a handihaler.  What that means is that there is a small capsule filled with the powdery med that the handihaler pierces and I am then able to inhale.  I take this once a day.

Pulmozyme – helps to thin the mucus in my lungs so that I can cough it up and out and reduce infections in my lungs.  I take this once a day in my nebulizer while wearing my VEST.

Sodium Chloride 3% - an inhaled medication via my nebulizer that I take twice a day while using my VEST.  I use this before I use the Pulmozyme in the evenings.  It also helps thin the mucus.  There is also 5%, 7% and 10% but I cannot tolerate those.

Airway Clearance VEST – a machine that vibrates my lungs and helps expel the mucus in them.  I use it twice a day.  In the morning I use it for 20 minutes with the sodium chloride.  And in the evenings I use it for 28 minutes with the sodium chloride and Pulmozyme.

Accapella – a device that shakes you from the inside.  Helps clear the mucus out.  I use this mainly when I have a plug in my lungs I need to get out and not as a daily therapy.

Prevacid 30mg – Many CF patients have acid reflux from the weakening of their esophagus.  I take these pills once a day.   

Azithromycin 500mg – Oral antibiotic that helps with inflammation.  Also known as a Z-pack in the regular world, though I take it 52 weeks a year.  But I only take it on Mondays, Wednesday and Fridays.

Zyrtec 10mgs – allergy med.  Spring and summer are bad on my allergies which make it much more difficult for me to breath.  When there is visible grass I take these pills.

Singulair 10mg – asthma medication to help with inflammation as well.  This is a pill I take once a day.

Supplemental oxygen at night and with vigorous exercise – my breathing gets very shallow when I sleep, which lowers my O2 levels and increases my heart rate.  Peter will tell you I sound like I am running a marathon when I sleep without O2, which to my heart and lungs I am.  Because my O2 does not get too low, 1L is plenty for me right now.  Same with exercise.  What I do now for exercise I do not need to wear O2, but if I run, I do.  My heart rate skyrockets and my oxygen levels plummet.  Not a good combination.

Creon 24 – These are enzyme pills I take before I eat so I can digest food properly.  I take 3 with meals and 2-3 with most snacks.  My body does not digest fats properly so I must take these pills in order to get the nutrients from them.  It has taken a few years to find the right amounts to take.  I took different enzymes before, but they were not FDA approved and were pulled from the market.  If I don’t take enzymes, well let’s just say no one wants to follow me in the bathroom ;)

Diflucan 150 mgs – With all the antibiotics I am on I get yeast infections pretty regularly.  My Gynecologist has me on a pill a month with the option to get one every week if needed. 

Vitamins – CFers are deficient in the fat soluble vitamins A, D, E, and K.  We also have to take extra calcium.  I take D, E and calcium along with a daily multi-vitamin which has A and K in in too.  In the winter I have to up my D intake to 50,000 units a week.  Normally I take 2,000 units a day (14,000 a week). 

Miralax and a daily Stool softener – Despite the digestive issues when you don’t take your pills, I have lots of issues with constipation as well.  I must take these daily in order to have daily bowel movements.  If I miss more than one or two Miralax doses, I need to do a clean out of my system to get it back on track.  When I say cleanout, think of a colonoscopy prep! 

Probiotic 30 billion – Because I am killing off so many good bacteria, I supplement some each day to help regulate all my inner workings.  Most of the time it works, but not always.

IV Antibiotics – a few times a year I need to combat the pesky infections that are always present in my lungs but which rise up to irritate me on occasion.  I spend 2 weeks in the hospital receiving these meds along with getting lots of rest (and crocheting done).  Many people chose to do these at home and I used to, until my insurance switched and now it is too expensive to do them at home.  But I do not mind.  While in I also get daily exercise, and manual chest PT if I want on top of my vest treatments.  These antibiotics kills off the bacteria wreaking havoc on my lungs and help bring my lung functions back up. 

Oral antibiotics – many patients use oral antibiotics to combat their lung infections.  Unfortunately, my bugs no longer response to oral antibiotics.  This means I have to use the big guns when fighting an infection.

Inhaled antibiotics – there are a few inhaled antibiotics on the market.  These are prime in the CF world because they deliver the drugs directly to the infection via a nebulizer.  TOBI, Cayston, Colistin and TOBI podhaler are the ones currently on the market.  My bugs do respond to these meds, but so do my lungs, and not in a good way.  About 6 years ago I had to stop using inhaled antibiotics because of the severe reactions I get when I use them.  Basically my lungs get really inflamed and I cannot breath and my oxygen levels drop.  So now we don’t even attempt them.  Some CFers inhale IV antibiotics as well.  It is what it sounds like – inhaling the meds that would be given via the vein.  Many swear by it too.  Whatever works to keep those infections at bay!

Transplant – I have been evaluated for a double lung transplant but am not there yet.  Many of my friends are listed, transplanted or passed away before they could be listed or after they received the gift of life.  This is the final step in saving your life.  End stage CF is not pretty and many do not make it to this point.  But those that do and get this chance tell me it is fabulous.  You still have CF everywhere else but your lungs are OK.  However, you are not cured by any means.  You trade one disease for another and a post-transplant patient must take daily pills in order to not reject their lungs.   Lungs are not the only organs transplanted in CFers.  Some need livers and hearts and many need kidneys because of all the pre and post-transplant medications.  

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