Excess Supplies?!?

So last night I was working on organizing our apartment and getting it ready for company to come into town. I decided to separate and organize all of our IV supplies. It took me close to an hour, but I got everything separated and into their own little bags.

In the picture there is the following from left to right and front to back: tubing extensions, end caps, syringes/needles, IV3000, dressing kits, chloraprep, biopatches, anchordry covers, alcohol pads, steri-strips, sharps containers, port needles, gloves, heparin, and saline.

I would hate to know what all those "extra" supllies cost. I'm sure the IV pharmacy got their monies worth by billing my insurance for all of it. I cant be too upset because if I ever go without insurance, I will have a lot of extra supplies that I wont have to pay for out of pocket.

This is not including all the extra meds we have in our kitchen, which also needs organizing. Needless to say, having CF means you should have an extra closet labled CF Pharmacy to store all of this crap!

Still breathing...

So it's been over a year now. Long story short: after 8 1/2 months I developed peripheral neuropathy in my feet,  they took me off Zyvox after a lot of tests trying to figure out what caused the neuropathy and determined it was the culprit. They put me on inhaled Amikacin for the remaining 3 1/2 months.

At 11 months and a few days I was allowed to stop treatment. 3 days before Amanda and mine wedding day I was able to de-access my port and be free from antibiotics for mycobacteria.

Now a year from developing peripheral neuropathy I still have it. Uncomfortable,  tingling, numbness and painful sensations in both feet from the ball to the tip of my toes. I have no way to get relief and no idea if it will ever go away, but it was worth getting rid of the mycobacteria.

All of that and I'm still breathing,  God is good!

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. 

Good news and Merry Christmas

I know I haven’t been the best blogger lately, seems like life complicates things and gets in the way. Nonetheless I am back with some good news.

The past few days have been pretty hectic. Between the holidays, birthdays, being sick, stress over my house, and worrying about the New Year coming up, I have not been able to control my anxiety level very well. Maybe writing the blog will help air out some of my stress.

Monday, Amanda and I were both home sick with a head cold, by this time it had started into Amanda’s lungs so of course I was worried about her, and even though I was sick was doing my best to take care of her. I was and have been on antibiotics going on 2 months now so I wasn’t really worried about the head cold going into my lungs, but that wasn’t stopping it from getting worse for her. We were laying in bed talking wondering about what was going to happen with my IV situation.

Let me back up here; since I haven’t told the full story as to why we were worried. I have been using a home health infusion company that I have used in the past, and need to use due to having to do IVs every day. When I was “admitted” to home health they sent out a nurse who from the very beginning, the first day she walked into the apartment, I was actually very comfortable with her. I didn’t even know her last name, which is odd for me, but that’s how comfortable I was with her. She was a great home health nurse, the best I have EVER had, and if you have had home health before you know good nurses are hard to come by.  Well the infusion company had administrative issues, and instead of telling me what was going on they called and lied to my face about what was going on. When I say she was a great home health nurse, I'm talking about all aspects of her care, including communication. That being said, she always kept in contact with me, making sure things were working out okay and I didn’t need anything, so I knew what she was up to and what not. At this point my home health nurse had become a friend, someone who actually cared about her patients enough to make that relationship, in fact we went to the gun range together and shot guns. Well once the company had administrative issues, they weren’t letting her come see me so they kept trying to send someone else, which I have horrible anxiety now, due to not taking anti-anxiety meds, and I didn’t want someone else coming out. When you have a nurse you are comfortable with, you get that way. Especially when the nurse is compliant with sanitation and sterile technique, and is caring towards the patient.

So anyways, I have to get blood draws every other week to make sure the antibiotics are working and make sure kidney levels etc are ok. Well this past Monday was a blood draw day, which means I can’t just be accessed without the company coming out because they still need blood. So I decided it was time for Amanda and I to be brave and access my port ourselves so we didn’t have to rely on a home health nurse anymore. So after 2 sticks Amanda got it on the 3^rd stick, if you have a port and know what its like to have it accessed, you know this is a pain, but I knew she could do it and I was determined not to worry about pain and let her be successful. Happy Day, Amanda graduated to “Nurse”. 

Well not only were we worried about that, we started to think about the New Year. With the New Year, means new deductible. I have an HSA plan with a high deductible. Once my deductible is met, the plan pays 100% the rest of the year, which is good once you meet that deductible. I am on a grant program at the hospital, which has paid the deductible the past few years. The only difference is this year I am on IVs which means I can’t wait a week or two to go to the doctor to meet my deductible and let the grant program pay it. I have to have my IVs January 1, which means I have to pay my deductible before the infusion company gets paid and that is a lot of money out of pocket at once. So of course now I’m sick and freaking out, anxiety shoots through the roof, and I don’t know what to do. I start thinking about all the what if’s, which isn’t the best thing to do until you have all the facts, but I cant help it. I was afraid I was going to have to skip a couple weeks of IVs until I met my deductible so that I could afford it, which would make the last 2 months of IVs pointless if I skipped that much of the antibiotics.

Fast forward to today. This morning I got a call from the infusion company and they are going to send out 2 weeks of antibiotics. 2 weeks puts us into the New Year, so I had to talk to them about what I could do to not have a lapse in my IVs. 1^st break of the day, they will put my account on hold and wait until the end of January to bill my insurance. AWESOME! That means no lapse in IV, and no large deductible to pay up front and have to figure out where to come up with all this money. No more stress about that, but I still have to move my doctor appointment that I have with the specialist in Tyler to later in January so that I go meet my deductible first at cf clinic. I called Tyler moved my appointment, and asked to talk to the nurse to get my sputum culture results. The nurse gets on the phone says that moving the appointment is no problem and pulls up my sputum culture results to tell me. 2^nd break of the day, on my first sputum culture a month after starting IV treatment for abscessus it is NO LONGER GROWING. Also, staph, which I always grow, and have always grown, didn’t even grow on my culture.  This is awesome news, I wont get my hopes up too high, but treatment is working thus far and hopefully will rid of abscessus for good once treatment is done.

Thanks everyone for the support, love and prayers. It’s working. I hope everyone has a Merry Christmas and Happy New Year. Hope everyone is living life like there is no tomorrow (pun intended) (12/21/12 end of Mayan calendar/world if you didn’t know). 

1 month down

A month ago I started my antibiotic treatment for a bacteria I knew nothing about. Mycobacterium Abscessus, which is a non-tuberculosis strain of mycobacterium that comes from contaminated water or soil. I first grew it out in January 2012, since they only grow out bacteria using this specific test one time a year. Who knows when exactly I first actually grew it. I could have gotten it anytime between January 2012 and January 2011 since they do this test when I go in for my annual birth month checkup.

For the past month my routine has been to take my antibiotics at night. I usually do my IV antibiotic at 8pm and take my oral antibiotics at bedtime with the rest of my pills. I have only gotten nauseated a few times over the past month, and the worst was last night. I had to take anti-nausea medication that pretty much knocked me out. I am starting to get worn out. I am not sure if it is due to being on 3 antibiotics or if it is the bacteria growing in my lungs. At the end of the day I am out of energy, at the end of the week I cant get enough rest before starting the week over on Monday. I am not a morning person anymore. It is hard to wake up in the mornings. I get tired midday to where I almost need a nap everyday.

This has been the hardest year yet. I am being tested around every corner. My anxiety and stress level is at an all time high. Part of the reason is that the antibiotics I am on react with anti-anxiety meds, so I am not on them anymore.

The biggest obstacle I have right now is work. I have always worked, since high school I have had a job. I don’t like the thought of cutting my hours, I don’t like the thought of cutting my pay, but I definitely don’t like the thought of my health going down because I don’t do these things. I have to work to get health insurance, and I have to work to pay my bills and remain independent. I don’t like the thought of being dependent on anyone, its just not who I am. I know it might happen some day due to my CF, but I want to remain independent as long as possible. It might seem crazy but just thinking about it makes me depressed. It’s a mental thing I can’t get past. I am trying to work through it on my own, but need support from friends and family. The hard part is most people don’t know what I'm going through and it’s hard for people to put themselves in my shoes. When you can’t do that, it’s hard to give advice.

Mom and Roger brought over the elliptical machine so I can start using it and working out. I know that working out will help eliminate some of that stress, and eventually I hope it improves my health as well.

On a side note, Amanda and I are still working out our details on our joint birthday party we are going to throw. Not exactly sure what we are going to do yet, but some ideas are karaoke, bowling, dinner, concert, etc. Will have to figure it out soon so we can send out invitations.