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).