Sunday, June 12, 2011

update on me


A couple weeks ago I had a pretty nasty cold it was also right after we found out the Elliott had MRSA. I took that week, two weeks ago, off work thinking if I rested up from the cold which was kicking my butt and did the right things it would be 'just' a cold. I also figured that would give me the time to find E a new home and get our house decontaminated from MRSA which was an undertaking, the washing of stuff at the Laundromat alone cost almost $50.

I went to the doctor that week for my lungs as well which was a normally scheduled visit. My lung function was down a bit but at that point it was still just a cold and we agreed to watch and wait. I started to feel better on Sunday and was more than a bit tired of ‘taking it easy’ so I decided to be busy and productive, tell my body to get over it and all was pretty good; I was looking forward to returning to work on Monday. My body had other plans I woke up about midnight with severe lung pain on both sides, after some ibuprofen failed to work I woke Jared and asked for a vicodin that I have for lung pain then I decided to go to the ER as the vicodin wasn’t working either.

The ER was a futile trip spent in pain during all the hours of waiting while listening to the drug addict next door yell about he was in fact sober and they should let go of him and let him get back to the mission…fun times, I’d never been so glad for my kindle. Everyone seemed to think either I was having chest pain or back pain, no one seemed to accept that I was having pain from my lungs radiating down part of my back and into my chest….try explaining that when you can’t take a real breathe. I have to admit hours later when the doctor finally came in and told me it was a virus that just needed to run it’s course and I should just continue doing all my normal treatments I completely lost my cool and chewed him out telling him if I could breathe enough to do a breathing treatment I wouldn’t be here in the first place. In the end I said I’d follow up with my doctors and wanted to leave and apologized for being short. He said that he would give me something for the pain and send me home with instructions I could take two vicodin next time and then had the nurse give me so much dilaudid I was loopey the good thing was it stopped my coughing which also served to reduce the pain; I could tell as soon as it took effect as I could draw a breathe without pain.

The next day once I woke up I called my doctors who decided to start me on IV’s which arrived the next day. I was to do on inhaled antibiotic and IV zosyn which I have been on many times over the past about 5 years. The drugs in my lungs are pretty resistant to many antibiotics and zosyn seems to be the one stronghold that really works. I started my IV that night so it did one IV then and one during the night while I was sleeping and then I slept through while it was infusing my early morning one, 3 doses in total. Imagine my surprise when I woke covered in blotchy hives. Zosyn is a member of the cephalosporin family and it looks like I’ve developed a sensitivity to them. This was obviously a big blow to me since I had to stop the antibiotics and then they weren’t really sure on what they wanted to do since it appears that most of the drugs the bugs in my lungs are not resistant to also just happen to be part of the cephalosporin family. It took a day or so and then I started levaquin which is a strong oral antibiotic, initially I protested because it doesn’t normally work for me and the doctor had already passed over it in favor of IVs. I have what they call “intermediate” to that drug meaning basically it works but not as well as it should. Since our options were limited my normal doctor confirmed that was the best course but at a higher dosase and in continuance with the twice as strong inhaled antibiotics I was still doing.

The good news is that this combo seems to be working. Honestly I believe it is the inhaled antibiotic doing a good portion of the work since it started improving before the levaquin but with the type of bugs we CF’ers have in our lungs you never want to treat with only one antibiotic since that allows them to more easily build a resistance.

What one drug reaction wasn’t enough? Ok number two has intensified over the past week or so on the oral antibiotics and I am not scheduled to finish until Friday. I have previously been told I have plantar fasciitis in my right foot now it has intensified greatly and the left foot has started in. The bottoms of both feet have a swollen red nodule present just past my heel that persists despite icing and ibuprofen popping. According to Dr. Google it seems I may have really aggravated the fasciitis or partially torn it…fun. Levaquin has a black box warning from the FDA about tendonitis and tendon rupture but I am pretty certain it is responsible for this recent turn of events. I’m going to give my foot doctor a call on Monday to see if he can get me in. Unfortunately the tendon on my left wrist and foot are also hurting, I’ve had a bad bought tendinitis in my wrist before so I’m pulling out the wrist guards for sleeping to hopefully keep it from getting worse.

So let’s see, cold, MRSA scare, lung infection, hives, and now I’m hobbling like an old woman….ah these are the times of CF.

The good thing is that even if I have to stop the levaquin my lungs don’t feel in too bad of shape. I may be able to stop orals and start a second inhaled antibiotic, that will make for a lot of nebulizer times but if it lets me walk again and breathe easy it will be worth it. Better news is that the MRSA scare was just that, so far, a scare I have not tested positive for MRSA in my nose or my lungs *claps*. Also awesome news is that E is doing wonderfully as the only child in a first time foster family who are thrilled to have him are supporting reunification but also hoping to adopt some day.