This last appointment was a God sent.
It is almost like the Universe has been listening . . .
The doctors have been listening as well.
The clinic received a grant for a pharmacist to assist CF patients. The pharmacist comes to you; sits down with you.
The pharmacist came in and had my medication list in hand. She had already gone through my medications and asked me what I was actually taking vs. what is prescribed. How much are my copays? She verifies if I have all the copay assistant programs for my medications.
She asks, “How many pharmacies do you have?”
“Wow. I am going to try and get these down to 3 or 4.”
Two of the medications are only created and dispensed at a couple places in the US, so those ones have to stay where they are. Some of the others she said, are available in groups that aren’t always known to the patient. Obviously, this is all insurance-dependent. Even if it stayed at 5 – I know it is all the insurance and not because I am a patient that has honestly not the knowledge or weight in this gigantic industry.
But here – I (we) have someone to help us! That is a pharmacist. Not a tech or a secretary, or liaison.
We talked shop. I told her why some of my scripts were written for the amount in which they are. She said, “Leave them; don’t change them.”
I asked, “Why do medications have two expiration dates?”
She smiled. It is a federal law for all pharmacies to put an automatic one-year expiration date on the medications. They do this because they believe most patients do not store their medications appropriately. So, instead of using the manufacturer exp. date, they use one-year to play it safe. But, she said, if you do store them correctly, go by manufacturer.
She said, “This is may be way too many details . . .”
I am like, “Oh no, I want to know this stuff.”
I asked, “Do they mine Vitamin K at the bottom of the ocean?”
She laughed. She told me that, “No it is naturally occurring.” She told me what is was used for in the past was mostly for heart patients, but new medications have made Vitamin K less needed. Then, they stopped making it or dispensing it, or very little. Then a Giant saw an opportunity to make money and trademarked it.
My copay, depending upon the pharmaceutical contracts can vary from $50-100 a month. Currently it is $50. There is a generic out there, but she was doing the math between the two, and it makes more sense to pay it outright and then when I max out on my insurance, stock up.
You see – this pharmaceutical racket has created this complex system, and where humans naturally have this instinct to survive. To do so, we find loopholes and gateways – and we are determined. Eyes narrowed, hand-up.
It is all such big money, and they know they have us. But she is a pharmacist! She might as well be wearing a cape!
She is going to go through my medications and call my insurance company and my pharmacies, God bless her. Then she is going to email me her findings with the direct CF contact number for each of my pharmacies.
This saves me so much gray hair.
Oh, and I was honest about my extra herbs and vitamins that I take. I wanted to double-check if anything was counteracting inappropriately. I didn’t truly think they were, but you never know. All were fine and she did give me a couple tips that I did not know and she told me which ones have been studied to be safe. That was cool.
My PFTs were great. Stable. It was the first time I did them at the clinic. They have a special CF waiting room and lab and it was immaculately clean. They use an infrared light to check for germs.
I blabbed about my Neti-pot and how fabulous it is.
The respiratory therapist (not Ann as she wasn’t there), but Amy came by and we talked about which air compressor. I am just paying for them outright. They are $80 a piece, not bad. I am getting two, my choice. She had Dr. Billings sign the script. They called today and they are running a 15% discount, so cool. It is small and powerful.
A new medication Phase II study results came out – looking very good. There is actually 2-3 things wrong with CF cells, as my doc said “It is a complicated disease.” This medication is triple combo to address each issue.
I will just wait and see. Phase III is probably happening right now. I don’t like to say too much and until to rolls out and see how it does in the population at large.
I am not going to lie – I have a hard time breathing in Minnesota. One of the big reasons I left. My friend, Lisa, thought maybe the farms, pesticides, etc. They blow and absorb in the ground and then get into the air we breathe. I don’t know, but the bronchial-loops was exhausting. My shoulders were tight and I got a headache before clinic from coughing so hard. I always sound wheezier.
I was concerned about my PFTs. I almost refused or cancelled. But, I took two puffs of my allergy inhaler in the morning and then two hours later two puffs of the bronchodilator.
Whenever I return home, my coughing deescalates like the ski jumper climbing the hill in that “The Price of Right “game. He climbs to the top and falls off the cliff; intense coughing that turns into not much at all. When I have visited the west coast I have done well, and Iceland still beats everywhere else I visited.
So – there you have it. The conundrum.
I ordered the basic Total Gym model. The one with Chuck Norris and Christine Brinkley. I saw an infomercial on the teevee on the plane, although I have eyed it for years. The price point has gone way down.
Working out at home is sometimes, not always, like dog-yoga. Ben jumps on my chest and lays down with his butt in my face. Both Ben and Chester have crawled under me when I do push-ups or downward facing dog. Chester rolls over to pet his tummy and rolls all over my yoga mat. Then he sneezes on it. I have to stop to wash it off. So there – I am excited.
Can I say something – I think the Universe wants me to live.