Monday, May 5, 2014

Our at home CF pharmacy

Medication therapy varies greatly among CF patients. Some CFer's take a ton of medications, while others takes few. Our household pharmacies contain a wide combination of antibiotics, allergy medications, vitamins, nasal sprays, pancreatic enzymes; among many other things. The medications to keep our family members healthy cost us a small fortune. One of Zach's medications cost $1,100 a month! At one point we figure out the cost of his monthly medications. I must say we floored when we reached over $8,000 a month. And these are only preventative medications. There is no cure, there is nothing out there, yet, that is going to guarantee that he doesn't get sick, that he doesn't culture a life-threatening bacteria (like Pseudomonas) that will hospitalize him for weeks. All these med's do is keep his symptoms at a minimum and hopefully keep him as healthy as possible.

The other thing about medications is that these people have to watch what kind of over-the-counter medications they take. If your kid catches a cold, gets the sniffles, is coughing up a storm you reach for the cough medicine, right?  We can't. Our CF patients can't take medication that has cough suppressants in them. We need our CFer's to cough, they have to cough up that crap that is in their lungs or it leads to massive infections.

In the 10 years since Zach's diagnosis he has been on enormous amount of medications. These have changed over the years, as he has grown, or medications have developed and changed. In general, he takes about 25 pills a day (when he is compliant). Here is a look at what he has been on through the years:

Currently taking:

Creon: this is a pancreatic enzyme. He has to take these to digest his food. He takes 15+ of these pills a day!
Ventolin: rescue inhaler
Singular: cuts down on allergy symptoms
Vitamin E
Vitamin D
Aquadek: CF specific multi-vitamin
Vitamin K
Albuterol Nebulized
Pulmozyme Nebulized (will go into these more in treatments)

Taken in the past:

Doxycycline: to help keep MRSA under control

Hyper-tonic saline solution nebulized
Periactin: to help gain weight
Inhaled Tobramycin: to fight off pseudomonas infection
Various IV antibiotics

(10 day IV antibiotic therapy at home)

There are so many times that I have to laugh when someone complains about there kids being on an antibiotic for an ear infection, or needing Benadryl for seasonal allergies. And I don't do this meanly. It just makes me giggle. And when asked why I just say "you should see our medicine cabinet....or more accurately our home pharmacy".

You'll notice that a lot of Zach's meds are meds you hear about every day. Multiviatmins, allergy meds, asthma meds. Like I said none of these are a cure for CF. All of these help keep Zach's lungs as clear as possible, or help his digestion.

Our hope is that one day, and hopefully soon, Zach will be down to only a couple of medications. And that those medications will be a cure, or as close to one as we can get to keep him alive. There are medications in the works right now that "fix" the gene defect, that show great promise. Yes, this will be a pill they have to take everyday, but it's the best we have to look forward to for now.

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