Saturday, April 2, 2016

The Colistin Woes

My Struggles and Triumphs:

I have some not so great news to share, but I dread just posting negative blog posts. So for every "Struggle" I will share a "Triumph"-  Struggles in RED, Triumphs in BLUE

I was going to make a quick update video for my YouTube about all of this but I have lost my voice. So blog it will be...   However, I'm fortunate to have this blog and be an actual "voice" for the CF Community  --- Thanks to  my readers :-)

As you read (or may need to click here to catch up) in my last post, I had my Cystic Fibrosis Clinic last week. Monday, I found out at the Doc's I dropped in lung function again (2x in 2016 already). I'm down to 42%. Yipes! Since Colistin helped me bring it back to at least the low 50s last time, it should do the trick again!

Please take a minute to read about my struggle in January to get Colistin and why oral antibiotics no longer are an option for me and WHY get sick is getting harder to rebound from each time. Just click here

Since my insurance fixed their mistake last time (after 21 days) I had hoped it would be just a quick refill. My Doctor was even smart enough to write a 1 year supply prescription (as needed), so to avoid the hassle. However, when I called to "refill" to script and have it shipped. The pharmacy called me back saying "It's on file, but when I go to run it, it says you owe the full amount (over $3,000)"... But she continued " She would call my insurance to look into" and maybe I could do the same. By tag teaming it, perhaps we will get somewhere faster. Smart Lady! 

So we both called. And after well 3 days of doing this back and forth and not getting a straight answer other than "Last time it was a mistake, we don't contract with that pharmacy, so you have to pay it upfront and then the insurance DECIDES whether to reimburse you".  Decides being the KEY word there. My Doctor decided to call too and try to figure it out on Thursday.  He had a little more luck, the insurance told him "We don't contract with FoundationCare Pharmacy, but it she receives it through CVS it will bill the insurance and not her"  So there is hope! Not sure why they didn't just tell me in the 1st place.

Side Note: Also, it shouldn't matter if they contract with them or not. I have 2 preferred pharmacies I have to use (for my husband's insurance), neither of which carry Colistin. Our benefit's package states we can seek an ouside specialty pharmacy and as long as our out-of-pocket & deductible are met, it is covered. Which we always hit my out of pocket & deductible with my first prescription of the year.  So it should of been fine.

But, whatever. Doc found a way, so whew. Doc said they set it all up with the pharmacy and they should be contacting me to set up a delivery date within 24 hours. Friday afternoon rolls by and I decide to call the pharmacy myself.

The Pharmacy person said "We can't send the medication until the insurance has been verified" I then called the insurance to see what the hold up is and I was told they weren't sure and they would get back to me.

So basically on Monday it will have been a full week since Doc said I needed Collistin. I'm going to be hopeful and say "Perhaps when I call Monday it will be taken care of and I will have the medicine by Wednesday (which is also my 31st Birthday). --- At least I have a birthday to enjoy! 

However, regardless if I get the med on Wednesday, I'm almost 100% I will have to re-schedule my eye surgery (that's supposed to be Thursday). Don't want to risk being put under Anesthesia with 40% when I am normally 52-56%.

I may be super bummed about cancelling my surgery, but I am looking forward to my birthday.

I'm not sure what happens if Colistin doesn't get sorted out. In Jan 2016, it took over 2 weeks. I don't think I can wait that long this time. I get so out of breath, my coughing is keeping me up at night, I'm losing weight. I may have to concede to do IVs, but Doctor is still trying and hopeful and so I will be too!

I am willing to do IVs, it just I'm running out of options for meds and last time I did IVs I didn't really increase that much in lung function. It's frustrating to be putting work into doing IVs at home. Being a patient and a nurse and then not increasing lung function after the 3 weeks of IV meds. However, I jumped in numbers in 2014 when I was actually admitted. So I'm (grudgingly) thinking perhaps I should do more of my IVs in the hospital. Where I don't have to prep them around the clock, make my own meals, clean, cook, grocery shop, go to work, etc.  It's weird, being low in lung function, but not really sick. I'm not contagious, just struggling to breathe. Odd how our bodies work.

Whatever we do, I have faith in my doctor that we can get the numbers back. I will be posting an update (if and when) I get Colistin! Wouldn't that be a GREAT birthday gift (fingers crossed)!!!!!


  1. Hi Cheriz,
    I follow you on Twitter (@Lorann46). My niece has cystic fibrosis and in 2013, she had two double lung transplants (she is doing very well).

    It is very frustrating that medications that are necessary to patients with CF can be so hard to get. Time is precious, and these insurance companies shouldn't be allowed to play these games. Most people cannot imagine how important these medications are for people with CF and that there are no "substitutes."

    I admire your attitude and approach of looking for positives while recognizing the negatives. I hope they get the med filled very quickly. And I hope you have a very happy birthday.

    1. Hi Lorann,
      Yep, I recognize you. Thanks for following. I'm so glad your niece is doing well. When was her second Tx? It is very frustrating about the meds, Compass (which the CF Foundation) is helpful for a lot of problems, but since this one "nobody knows why I can't have it" makes it weird. Even though since this post I was admitted to hospital, I'm just happy that I will be able to get better. And yes, despite my hospitalization on my Birthday, it was still nice. Andrew had the entire day off to be with me, we had a nice lunch out, my parents came for the evening. What more can I ask for, but to be the people I love. Thanks again!