Thursday, January 20, 2011
If you've been following my blog for a while you'll know that I dispise my CF clinic. They don't listen, aren't aggressive, rarely let me see the one doctor that I do like, and in general act like they don't care much. No one there ever seems to comprehend the fact that I know my body and my disease better than they ever will. Unfortunately, there isn't anywhere else I can go without moving which isn't an option right now unless someone out there wants to pay for me to get settled into a new place.
All of that is why I had a fit when I was told that the doctors didn't want to give me tobramycin (one of the better, and stronger antibiotics out there, complete with terrible side effects) because I already had some minor hearing loss from it. I looked into that nurses face and said "I'd rather be deaf than dead!" I must have struck some kind of chord with her because I got my tobra. I also got zosyn, which is another strong antibiotic. Its a combination of 2 drugs and must be administered every 6 hours. A pain in the ass for sure, but if it kills this thing then so be it. I can sleep during the day if I need to. I made them keep me in the hospital over night because the zosyn was a new med for me. Since we still don't know what triggered my seizures I didn't want to chance having another one at home alone while on a new med.
Fast forward 2 weeks. I'm feeling better. I've been coughing up buckets of wretched slime from my lungs. I've done the cough and puke manouver more times than I can count lately. I've lost 5 pounds from the vomiting and the ab workout that is a side effect of it. If you want a flat stomach quickly cough and puke is the way to go. Not fun, but it gets results.
My cough started to taper off over the weekend. On Tuesday I actually I had some energy for the first time in a long time. I was able to be productive around the house. Yesterday I went in for follow up PFTs. I'm back to baseline. But again I put my foot down, another week of the meds. The past few month's track record doesn't speak highly for only doing 2 weeks, neither does the fact that I've only JUST started feeling better. I won, half way at least. No more tobra, they're worried about my ears. I'd still rather be deaf than dead, but the kidney failure it can cause worries me and I don't want to push that issue.
We're still waiting on the sensitivities for the MAC, it grows so slow. But when that comes back I'll push to treat it. I don't have the lung function to spare on a wait and see approach. If the CF clinic won't treat it I'll find an infectious disease specialist. One of these days maybe they'll learn that I'm in charge, not them.
Wednesday, January 5, 2011
In Fenruary of last year I was given the opprotunity to take a voluntary lay off from my job. I had known for a while that I wasn't going to be able to continue working for much longer. I was just getting too worn out. I was constantly exhausted, eating nothing but junk if anything at all because it was easier than cooking, and sooner or later I was going to get sick because of it. By taking the lay off I was given a pretty good severence package that would sustain me for at least a few month while I filed for disability. So on the 5th of March I said good-bye to the company that had been my second home for 4 1/2 years. It was definately the right choice. Now I can sleep as much as I need to, I can fit in my treatments, making doctor's appointments is easier, and on days when I feel like crap I can stay in my jammies, snuggle my kitty, and stay at home! The timing was perfect as well. The lease on my apartment was up at the end of April so I got almost 2 full months to pack up and move in with J.
Unfortunately at the end of March my dear friend Eva passed away while waiting for a second double lung transplant. You may remember that I had the chance to meet her in October of 2009 when my cyster Tally and I went to Vancouver, BC Canada to see the documentary she was in about her and her transplant experience. At that time it had been almost 2 years since she got her lungs, but she was already in chronic rejection. She was the first CFer who'd had a transplant that I got to meet in person. Even as sick as she was at that time, with her new lungs failing, she was so alive. I still miss her very much, but I feel so privledged to say that she was my friend. Look for the film, 65 RedRoses to air on the new OWN network this spring. As more information comes out about that I will be sure to keep you all apprised of it. As much as losing her hurt I would not have given up her friendship for anything.
At the end of April I packed my bags, got on a plane and went to Boston. A CFer who was a large part of my online CF world had passed away at the end of 2009. His parents decided to hold a belated memorial service for him in Boston. This was such a wonderful thing for so many of us at CF2chat.com. We had months to plan and so many of us were able to make it! Look at all of us there!
Paul probably would have been horrified since CFers are not encouraged to hang out together, but clearly we all wanted to say good-bye to him properly. He should be proud that he was the reason we were all there. I finally got the chance to hug some of the best friends I could possibly have! There is nothing like people who just understand what you're going through because they're dealing with it too. As much as I love my non-CF friends, my CF friends have a very special place in my heart that simply cannot be filled by anyone else. I love you guys.
Shortly after I got home from Boston it was apparent that I was getting sick and needed IV antibiotics. I average about every 6 months for those so I was right on schedule. That round, although a little rough due to side effects, did me a lot of good. I felt absolutely amazing for 3 weeks after finishing!
Most of the summer was rather uneventful, the weather here sucked so we never even got to go swimming very much. Bleh. But at the end of July J took some vacation time, we packed the car and headed for eastern Washington. We stopped off to see my parents, it was the first time they met J and the first time I had seen their house. After dinner we piled back in the car and headed for Chelan. Its such a cute little town right on a big lake and is a popular vacation spot. I had never been there before and I loved it! We found a place to camp and the next day was spent at the water park. Unfortunately early the next morning I woke J up having a seizure, which was a completely new thing for me! J called 911 and I was taken to the local ER. They ran all kinds of blood work, did a head CT which was normal, and sent me home. I don't remember much of that day, which is common after seizures. Just over a month later I was seen by a neurologist who ordered and EEG and an MRI of my brain. Those were both normal as well. I was told that there was no obvious trigger for the seizure and my chances of having another one were about 25%. Remember that.
For my birthday I boarded a cruise ship to Mexico! The only thing that could have made that vacation better would have been having J with me. But this trip had been planned before I met him. I saw dolphins, went parasailing, ate the most AMAZING food, and got all the sun that was missing from Washington in the summer. I had a wonderful time and I really want to go back to Cabo for.....well forever, but I'm not rich. Observe this gorgeous sunset in Puerto Vallarta.
At the end of October I received my very first disability check! That all went through will NO problems, which is almost unheard of. Finally some luck related to my health! Which is good, because in the middle of October things kind of went south. I started having some left lung pain. That's the one that partially collapsed on me before. IV antibiotics for a bit of pneumonia were in order. After 2 weeks I was feeling good, so the abx were stopped.
The weekend immediately following the last of the IVs I attended the memorial service of a friend and CFer, Gess. I'm pretty close to his wife (L), I got to meet him in person in Boston. They live in Seattle but I had to go all the way out there to meet him! Ha! I had met L before though. Gess had a rather sudden decline after a procedure was done on his liver. It was hard to go there, to say goodbye to someone who had been doing pretty well just a few months before. It was hard to see L going through that. But I really felt that I needed to be there, not an obligation really. I just felt that I needed to let L know that I am here for her, that I am sorry for what happened, and to pass all the hugs and messages from all of those on CF2 who couldn't be there. And I needed to do it in person. Love to you L.
Within just a few days I was feeling like I had never done the IVs. By the end of that week I was back on them. Thanksgiving came, I cooked a gigantic dinner that really impressed J. I got results back on a sputum culture that showed mycobacterium avium complex (MAC). Its one of those bugs that is kind of everywhere but is only a problem if your lungs suck. The bad news is that its hard to kill it. At this time I'm still waiting on the results to find out what will kill it.
I finished the second round of IVs. And was right back on a week later. This time they actually listened to me and changed the meds up. It turns our that I'm moderately resistant to what they had me on for rounds 1 and 2. Way to go CF clinic.
In the middle of the 3rd round of IVs, I got up in the morning to do my IV. I felt drunk. I banged around the bathroom when I first got up. I banged all the way down the hall like a pinball. I banged around the dining room. I banged around the kitchen. I dropped my stuff. And then some strange guy was looking at me. I'd had another seizure. Remember that 25% chance of having another one? I guess they were wrong on that. Most of what I know about this one J told me later because again, I don't remember most of that day.
J heard me bashing around all over the place, but I had taken a lyrica the night before because my fibromyalgia was flaring up. That stuff has a tendency to make you feel weird of you don't have enough time to sleep it off. So he didn't think much of it (incidentally, I don't think the lyrica had anything to with the seizure because I've taken it off and on for years without trouble, I also had NOT taken it before the first one). But then he heard a loud crash which was some combination of me slamming face into what was probably the fridge door and then falling on the floor. The only reason I know I hit my face is because of the black eye I had the next day. He ran out to the kitchen and found me mid-seizure. He thought I had dislocated my shoulder because of the way I was laying on my arm, I didn't thank you very much.
He called 911 and I started to come back to this world some time after the EMTs got there. And apparently the entire fire department came because J said there were about 9 guys here. I don't remember telling J that I wanted him to bring clothes to the hospital for me but I guess I attempted to. I say attempted because what actually came out of my mouth was complete giberish. Luckily he understood my hand signals. I don't remember getting put in the ambulance, but I do remember the guy asking me where I was. I said Chelan....which is where I was when I had the first one.
I kind of remember getting to the hospital. I remember being very twitchy, which they said happens sometimes because the brain is still trying to fire randomly. I got some ativan for that, consiquently most of the rest of the day is a total blur or nothing at all. I know I slept a lot, I know I talked to my mom but I couldn't tell you the details of the conversation. The hospital I was taken to got in touch with the neurologist I saw before and I was given a perscription for an anti-epileptic. I will be seeing the neuro again at the end of this month.
Christmas wasn't too eventful. We had Christmas Eve dinner at my friend's house. They gave me a shot glass from the Caribean and a gift card that J and I used for a movie. J gave me a reall cute froggy soap dispenser that ribbits and a pretty necklace and earring set. I got him a t-shirt with a smart-ass saying on it, very him. We also got matching rings. So we're pretty much married except for the piece of paper that says we are. We see no reason to make it legal, been there done that.
New Year's Eve was also rather tame. We went out to dinner, then came home and watched the fireworks at the Space Needle on TV. We were in bed less than 10 minutes after midnight. Yeah, we feel old.
And lastly, to my J. I know that I'm sometimes not easy to live with. My medical problems add a massive amount of stress to your life that you are in no way required to take on. Sometimes I don't know why you haven't said "enough is enough!" But the fact that you haven't tells me that you are the kind of person that sees me as a person, not as a medical case. I love you so much for that. I do hope that you stick it out with me because I can't do this alone.
And that is my 2010 in a nutshell! Stay tuned for news on all this seizure nonsense as well as what happens with the MAC infection! I hope you all have a wonderfull 2011!