Saturday, January 2, 2016

Beginning of the Year Troubles

Normal "beginning of the year" troubles for Andrew and I only really consist of one topic:

Our Deductible

[please no Obama, or government bashing] I've always had high deductibles ALL MY LIFE (no matter who was president). The problem is I hit my deductible within the first week of January. In the past I have always prepared for this and since I was still on my father's insurance (up until last year) he typically paid the bill (at least for medical stuff).

And in the future Andrew & I won't have such an issue with this. We will be able to save and plan ahead for the $3,000 (for my deductible, his is another $3,000). However, this year was more difficult. We saved all 2013-2014 for our wedding & honeymoon, plus had our deductible saved too. But Real Estate was a pricey career to start, I've put almost $5,000 into it (classes, dues, licensing, exam, advertising, etc). So needless to say our deductible disappeared, thanks to my new career. Where I took classes was in a different area and the dues are less ( so we didn't anticipate as much going out). 

So here we are and it's January 2nd. And of course I'm sick. I shouldn't say sick, I'm not really "sick" and I'm not contagious. I'm just doing a little poorly healthy wise right now.I always struggle in the winter and the last time I was on IVs was in January of 2015 (note: almost a year, whoot whoot)

Well, as you may have read on Facebook or twitter: I went to the doctor's on Thursday ( New Years Eve). My breathing test came up with numbers like 36%, yipes (typically I like to see at least 56%)!!!!! Doc walked back in with a therapy (nebulizer) machine and a vest machine... I have never had to do therapies at my Doc's because of my numbers before, so I knew I was in trouble. After my 30 minute treatment I did get them "up somewhat" as he said. I don't know the exact number, but clearly it wasn't what we wanted. However, it was enough he told me he'd give me a week with other methods/ meds, before IVs.

I didn't want to be admitted yet, because 1. last time I did IVs in 2015 they didn't work anyway 2. We haven't met our deductible yet 3. I'm currently working with a client to help them purchase a house.

I'm allergic and resistant to all the anitbiotics you take orally (except Zithromax, which I already take 3x week). I already take Cayston(aztreonam) and Tobi (Tobramyacin) via nebulzers. So IV forms of those two are not the best, since they aren't new to my system. Typically, I take Cayston via nebulzier, Tobi via IV form, and add in Zosyn IVs if I need IVs. We watch Zosyn though to make sure I don't have reactions to it. Because I'm basically allergic to all the other antibiotic and their families.

Now in Jan of 2015 the 3 weeks of IVs didn't bring up my lung function or help enough, so I followed them with a month of Tobi and Collistin nebs and a month of prednisone (a steroid). This got me back to mid/high 50s. BUT, I can't seem to get back to that 64% I had in 2014 post IVs. So its frustrating and really hard to recover lung function anymore for me.

So here is our current plan: I start taking Prednisone and Colliston with my typical meds & nebs, then on next friday, go back for a weekly check up. If I'm not improving enough, then we will discuss hospital, etc.

Here is why the deductible is so tricky. Once we pay it everything is covered 100%, specialty drugs, admissions, etc. We hardly ever hit Andrews over the course of a year, but mine "BAM" Cayston and Tobi alone each are double my deductible. However, my pharmacist found a loop hole to help us.

With pulmozyme there is a co-pay card/ assistance program that if pulmozyme is coming out of pocket, we only have to pay $30 and the total cost of pulmozyme is covered AND put towards our deductible! Pulmozyme typically costs me $1,800. So that would make our deductible only $1,200 which is a lot more manageable considering my over the counter med cost per month. Here is where it gets tricky. In order for pulmozyme to go towards the deductible it has to be billed first. It can't be paid for on a holiday or weekend. So I have to wait until Monday to get my pulmozyme refilled, then get Colliston/ Prednisone. However, that means on Tuesday I will be ordering a meds that will cost us the rest of the deductible (around $1,200 out of pocket). Yes, it meets our deductible and we are set for the year. BUT, you don't make money in real estate for a little while after you start. You need time to get clients. We are paid on commission after the closing. So hypothetically, if you get a client your first week on the job (which it typically take 2-3 months), you wouldn't see your first check until after they sell their house or buy one, then closing takes at least 45 days if not up to 90 days.. So averaging your first check with be 5-6 months post starting. So right now is a little tough for us.
Paying all our bills off Andrew's salary and me not having an income for the last 3 months. I'm excited to keep doing real estate, but at the beginning it's tough.

I'm hoping there is a co-pay program for Colliston too, but since there isn't for Tobi or Cayston... so I doubt it. 

So here's hoping we can get my meds figured out, paid for, and I respond to the treatment. Fingers crossed for no hospital and a miraculous jump in lung function. I will post after my appointment next weekend too! 

And despite my bummer of an appointment, I had good news for my client, AND got to spend New Years with family & friends! 

Hope you all had an amazing New Years! 


  1. Hey Cheriz,
    Just wondering what your mutations are? I'm sure you've mentioned it in blogs past but I couldn't remember. Are you eligible to take Orkambi? Thanks for sharing your very personal journey, I always look foward to your blogs.

    1. Hi Sarah, Thanks! Glad you enjoy my blog! Yep, I am DDF508, so I am eligible for Orkambi. It was tough decision to not take it, I mean it's available and I wonder what if it helps. And If I keep declining in lung % that might change. But since I have a history of liver and eye issues, we didn't want to risk it, since its average lung function gain wasn't more than 4%. Doc and I also talked about the newer drugs in Phase 2 that have promising results and less side effects (since the two orkambi has are both already issues for me...) Anyway, I talked about it in this post here:

      Some people LOVE orkambi, others dislike doing it. I'm all for it, but want to be super cautious based on my history. It's a tough call.

  2. This comment has been removed by a blog administrator.

  3. Hey! Cayston does offer some copay assistance...check out their website: I only pay $10 on each refill :) Get well soon!!

    1. Awesome! I will check that out. Thanks for the info!

  4. Pulmozyme, Cayston, AND Tobi have programs to help with out-of-pocket expenses! I hope it works out for you.

    I usually use the Pulmozyme program, but my Cayston order was first this year and took care of my entire $3000 deductible.

    1. I used the pulmozyme program and I think we have hit our deductible too! Whew. We still have to pay for my husband's half, but I can't believe the amount of money we saved. So thankful for those assistance programs! Thanks for sharing :-)

  5. Have you talked to a social worker at you CF center? In Michigan, I qualified for 2 types of insurance and ended up with a $1.20 copay for my Tobi every other month. When I do IV therapy at home (via a port) those meds are 100% covered. Make sure you've explored all your options - including medical disability (may qualify based on your cf and frequent hospital stays). Don't worry since your income is not reliable it won't reflect in your application. This may open you up to programs that may save you thousands each year.

    1. I used to have 2 insurances (2nd was medicaid). Once I got married, they count my husband's income, so I don't qualify for any assistance. Although, the qualifying amount is set low, which is sad. We make do and are doing okay, but still seems ridiculous. Thanks though! You are right, a lot of patients do qualify!

  6. This comment has been removed by a blog administrator.