The Process of Getting Cipro

Thursday: I texted my doctor to let her know I was feeling off. I wasn't quite sure if it was allergies or an infection coming on. The plan was to have her call in a script for Cipro so I could have it on hand for the weekend in case I started feeling worse.

Friday: While at work, I felt like crap! My cough was changing and my sinuses were clogged. I decided I should run by Walgreens and grab the Cipro and begin taking it that evening. Unfortunately, when I got there, they said my doctor never called it in....ugh! So I got in touch with my doctor and she resubmitted the order. I called Walgreens later that evening to pick it up (even if I could just get a partial), but they said my insurance was putting it through mail order - seriously?! Who gets antibiotics through the mail?! How is that convenient at all???
So I asked the pharmacist if there was any way I could just get some pills to last me over the weekend, hoping my Cipro would come via snail-mail Monday. She was able to sell me SIX pills for $24! I had to take them because I knew letting this infection brew over the weekend without the extra antibiotics wasn't going to help.

Saturday: I took my second and third dose on Saturday. My cough was in the cough-constantly-with-no-mucus-production stage and it sucked!

Sunday: Took two more doses today.

Monday: Took my last dose Monday morning before work hoping there would be a package on my door when I arrived home with the rest of my Cipro.....of course there wasn't. This meant that I missed Monday evening and Tuesday morning's dose.

Tuesday: Lots of rattling in my chest, but it's tight and very hard to have a productive cough unless I practically choke/gag. Thankfully when I got home, the full dose of my Cipro was in my mailbox. I'll be starting back on it this evening.


**Moral of the story, MAIL ORDER PHARMACY SUCKS! It's NOT convenient to get a dose of antibiotics in the mail!!!! "Normal people" don't go to the doctor for an ear infection, strep, etc and get their prescriptions four days later in the mail. I just don't understand why this decision was made and who made it - was it insurance? Was it the mail order pharmacy? I suppose I could call both and figure it out, but I'm not in the best mood about it right now and do not feeling like trying to figure it out. All I know is, at least I now have six extra pills (since I had to buy some) from this mailed dose, that next time I feel an infection coming on, I'll be sure to put it in my mail order VERY early!

Thankful November, Week 4

Each day in November, I'm taking the time to post something that I'm thankful for - no matter how big or small - then I'm posting them at the end of the week. Click these links to see week 1, week 2, and week 3.

17) Today I'm extra thankful for the roof over our head! There were a lot of severe storms that tore through the Midwest today, and thankfully they stayed clear of our town and house.

18) Pandora radio - sounds silly and insignificant, but I love it. I don't want to have to pay iTunes a dollar per song to download (legally). I love that I can change the station depending on my mood (ie: Michael Buble Christmas - I'll have to bust that one out soon...after Thanksgiving!) and that it introduces me to new songs. If you haven't caught on - I love listening to music! :-)

19) I'm very happy to be done taking my Cipro! Although I'm still not feeling 100% (I need to get better about doing extra treatments), I'm just glad that I'm not taking Cipro anymore. I am also happy to report that this was the first time, that I can remember, that it didn't give me huge tummy troubles! I'm wondering if that's because I'm now taking daily probiotics....which leads me into tomorrow's post.

20) I'm super thankful that someone created probiotics!!! They've completely changed my life! I am no longer extremely gassy and/or bloated daily....or ever! I feel like a "normal" person as far as that's all concerned! I now go to the bathroom once...did you read that CFers, ONCE a day and feel SO much better! If you are not taking them, I strongly  recommend talking to your doctor about what benefits they could have for you!

21) Modern Medicine/Research - I'd probably be dead if it weren't for all of the advances in medicine and research today. I know that sounds terrible, but it's true. If I were born with CF 50 years ago, pretty much all of the medication I take wouldn't be around. I'm very, very lucky and thankful to have access to the medications, and team of wonderful doctors and nurses, that I need.

22) I'm thankful for a night out. I'm not usually one to go out much, I tend to be a home-body, but I'm glad I went out tonight with some teacher friends. We had a lot of laughs and a great time. :-)

23) Today I'm especially thankful to have heat! With it being about 30 degrees today, I'm very glad that we have that luxury. And congrats to my cyster, Megan, who ran her first 5K today in this terrible weather!! So proud of you! :)

CF Awareness Month Blog #13 - Medical Terminology

Bronchiectasis

Another list of medical terms that probably means nothing to non-CFers, but things that I'm so used to that I don't think twice about some of them. My adult CF doctor is so wonderful about explaining to me the ins and outs of how my treatments work, why I'm on specific medications, and what exactly is going on with my body.

Bronchiectasis: A fancy way of saying scarred/inflamed airways - at least that's how my doctor explained it to me. This occurs from chronic lung infections, typical in CF patients.

Burkholderia Cepacia (B. Cepacia): A bacteria that can get into your lungs which is typically resistant to most antibiotics. I do know that any CF patient who carries this bacteria is asked not to attend any CF related events, such as Great Strides. Definitely something I don't ever want to get!

Tobramycin: Antibiotic used in patients with pseudomonas. I'm currently on TOBI which is a nebulized form every other month so that I don't become resistant to it. I remember when I first started it how much I hated the taste of it. Now it makes such a positive difference in my lungs when I'm on it, I don't even think about what it tastes like.

Hemoptysis: Coughing up blood or bloody mucus. This has happened to me and the first few times it was very scary. Thankfully I've learned to back off my treatments if it does happen, and that unfortunately, it's just something that happens every once in a while.

Hyperglycemia: High blood sugar levels. CF patients are at a higher risk for developing CF Related Diabetes due to scarring in the pancreas and its inability to produce insulin or regulate insulin. This is something that I'm currently considered 'borderline' for. I've been monitoring my blood sugars, keep exercising, and I've made some major adjustments to my diet to help control my sugars. Anything I can do to avoid insulin injections!

CF Awareness Month Blog #3 - $$$

Medication plays a huge role in my day to day life and keeps me healthy. I would not be as healthy/successful today if I was not able to afford my medication...I definitely have a love-hate relationship with insurance. Need it, gotta have it, but they're so annoying and have to make things complicated and difficult all the time! There is absolutely no way that I'd ever be able to afford any of my medications or medical care without insurance. 

Doctor visits, for example, without insurance: 1/2 hour (maybe!) with seeing an Endocrinologist this winter = $815.00 without insurance.
CF Clinic visit: $4, 229.00 without insurance -- I have clinic visits 4 times a year ($16,916/year). We do not pay this much, I do have insurance!

I have to take 2-5 digestive enzymes with every meal - I wouldn't be able to eat if I couldn't afford my enzymes. I take a several vitamins daily (that I pay for over the counter...take a walk down the vitamin aisle one day and see how much a bottle of Calcuim+D vitamins are...), oral antibiotics when needed (as long as insurance approves them), plus 4-6 nebulized medications daily along with my Vest. The Vest alone would have been tens-of-thousands of dollars. Not to mention my Pulmozyme which is several thousand dollars a month - without insurance!

With all of this said, I am very, very lucky be this healthy so that I can work full-time and have great benefits. I am able to afford every medication that I need, and all of my insurance deductibles/out of pocket fees. Do I want to have so much in medical expenses per year that I'm able to deduct them from my taxes...no...but if that's what I have to do to keep living the quality of life that I am now...then so be it. Things could be so much worse, and unfortunately there are CF patients who do...

What do I have to complain about? I can afford my medications. I'm happy. I'm healthy. I'm living a wonderful life. :-)