cant keep it short and sweet

Going to try and keep this blog short and sweet. Another trip to Tyler down, hopefully only a couple more to go. I’ve been on antibiotics for 3 months straight now to treat the mycobacterium abscessus I cultured out January 2012. Went to the specialist 4 hours away to find out that I am doing well on my treatment. Still no return of the mycobacterium and also staph is gone. Of course I suspect when I get off the antibiotics the staph to come back, but hopefully keep the mycobacterium out. Not to mention Amanda is on IVs right now for an exacerbation. So neither of us are feeling great, but not too bad either.

Even though my appointment went well I was still having an issue. Sunday is my day to de-access my port and go a day without a needle. Well Monday night it was time to re-access my port so I could start my IV. While I was doing my IV I started itching. Since I have been on IV antibiotics I have developed a rash, which the dermatologist diagnosed as pityosporum folliculitis. This is a type of yeast that naturally grows on your skin and when you are on antibiotics it kills off the natural bacteria that keeps the yeast at bay, now that I have been on antibiotics for 3 months its caused this rash. Well I thought that the rash had gotten under the tegaderm and was causing me to itch by my port. So since I was going to Tyler I decided to de-access Monday night so I could show the dr. Tuesday. He told me I could try a yeast medicine to get rid of it, but I should still keep the dermatologist informed. When I got home Tuesday night, same thing happened but worse. Amanda accessed me and the itching was worse and I couldn’t stand it, I was tired, frustrated, and upset. I had to take the dressing off again and de-access. This morning when 8 o’clock came around I called the dermatologist. The dermatologist said I needed to keep the tegaderm dressing off until this rash healed around my port, but luckily it isn’t the same as the rest of my chest, it is dermatitis. Hopefully by the end of the week I will be healed and not itch anymore.

Now off to bed, haven’t been sleeping well. Hopefully Amanda and I start feeling better soon.

Not bad, but not what I expected

So today I had a CF Clinic appointment…at 8am in the morning. CF clinic that early almost never is as good as it could be. I didn’t sleep well last night, woke up multiple times, and woke up before my alarm this morning. Even though I woke up early, I still ran out of time. I left with 20 minutes to get to CF clinic. The weather was wet, cold, and just bad altogether. Traffic was horrible, so it’s good I drive a fit. I got to CF clinic about 5 minutes after the hour, so was a little late, but not compared to anyone else cause of the weather.  My vitals were good, weight is up, and pft’s are normal. I spoke with the doctor and no changes were made to my care. Spoke with the social worker and decided to research more techniques to help with my anxiety.

All in all was a pretty good appointment, just not what I expected. What I mean by not what I expected is referring to my pft’s. I don’t understand how I can feel good lung wise, but pft’s aren’t up higher. I have been on antibiotics for 3 months now and feel really good lung wise. I guess I had my hopes up that since I feel better that my lung functions would also be improved. I realize today what people are talking about when they say “don’t go by the numbers, go by how you feel.” I feel good and that’s what matters.

On a side note, with seeing the doctor, nurse, social worker, respiratory therapist, getting blood work and x-rays I more than met my deductible at this appointment. Helps relieve my anxiety a bit knowing that once these claims go through and I meet my pharmacy out-of-pocket my insurance should pay 100% the rest of the year. 

A new year, a new beginning…. of my deductible

Every January starts out with anxiety, and not the “what’s my new years resolution going to be and can I hold to it” kind. The “my $3000 deductible starts over and I need to figure out how to pay for it” kind.

The past few years I have been extremely lucky. A few years ago, probably when I was 19 or 20 I signed up for this grant program at my cf clinic that pays for any out of pocket costs when I attend cf clinic. So every year I scheduled my appointment as early as I could in January so that whatever out of pocket costs aka my deductible I incurred was paid for by the grant program. Even if it was 10-15 days into January it didn’t really matter because it was worth waiting for. The reason my appointment costs so much in January is because the way my cf clinic operates is that during your birth month, they do annual blood draws, x-rays, sputum cultures, and pft’s. So by the time this is said and done, my deductible is paid for and my insurance pays 100% the rest of the year. This is awesome cause that means the only out-of-pocket I have during the year is the $1000 pharmacy deductible which is paid for by copays so its not all due at once. Not only that, the plan I have through work gives me $600 a year at $50 a month to help pay out-of-pocket costs using a health savings account. So in total my out-of-pocket for the year comes to $400. This is an estimate because if my insurance decides not to pay for something then it could be billed to me, but for the most part it usually works out that way.

Well this January was different. Since I am on treatment for my mycobacterium abscessus(MAB) I have ongoing antibiotics and home health and was freaking out how I was going to come up with $3000 first thing in January so I could continue home health and get my antibiotics from the pharmacy. My anxiety level rose, which is probably another reason I got so sick from the stress. I didn’t feel good on top of having to figure out what to do. I talked to my home health and they are going to work with me, with billing so I don’t have to worry about paying them my deductible. Hopefully between Amanda and I we will have enough meds to cover me until my appointment with cf clinic on the 15^th in which my deductible will be met, grant program will pay it, and I can get all my meds again.

Even though I had this all figured out, I forgot one thing. Zyvox. One of the antibiotics I have been on for MAB is only covered for 11 days at a time through insurance. This means I was going to have to miss days because my cf appointment wasn’t until the 15^th. So I started getting frantic, I didn’t want to compromise my MAB treatment by missing days, so I started trying to figure out what to do. Zyvox is $160 a pill, so even if I miss a few days I'm still out almost $500. That’s a lot of money, not just for cfers, for anyone. So I asked Amanda if she could get more, she couldn’t, luckily her previous cf nurse pointed her to Pfizer health. They have a program that helps pay out-of-pocket costs for zyvox and many other antibiotics. So I got on the phone with them immediately, Friday afternoon I sent in the paperwork and had to write an appeal because I make too much money, or so they say.

I hate that programs get to say that you make too much money when you really don’t. I could understand if I made hundreds of thousands of dollars a year, but how can they tell me, a cfer, that I make too much money? Its not fair because I am trying to be a “normal” citizen by working and paying bills just like everyone else on top of having a life threatening disease. I know plenty of people a year that get more help a year and are perfectly able to work and be normal citizens but don’t cause they are lazy or like getting a free ride.

Life isn’t fair. Your parents don’t tell you that as a kid just to shut you up, it really isn’t.

Anyways, Pfizer health approved my appeal and is going to help. All the hell and stress I've gone through taking on IV antibiotics for a year has made me realize that social workers don’t point out all the programs to help you get assistance. I think if I get the time and energy I will start researching all the assistance programs and pharmaceutical companies that help patients out and set up an informational website. We need something that all doctors and cf clinics can point their patients too for information just incase they forget to mention something. The cystic fibrosis foundation is great, but it doesn’t have everything.

Anyways, I'm getting tired and need to go to bed. Hoping these allergies don’t turn into an infection.