Wednesday, September 23, 2009

The port.

I'm ported!! I got my port put in yesterday with no issues at all. I checked in at 10:00 am and they asked me about 600 questions about my medical history and meds and you name it. All that crap is in my chart but they feel better knowing they asked me THAT day. I must have been asked a dozen times if the thing was going to remain accessed, and answered a dozen times NO.

They got my IV going and took me back to the semi-operating room in radiology around 11:00. They cleaned my chest, I was blue from my ear to below my nipple. Pretty soon the nurse gave me some fentinal (sp?) and I watched the walls dance for a while. Then she loaded me up on versed and I had some weird dreams that I don't remember now. I vaguely remember them telling me they were going to give me lidocaine and it would sting, but I don't remember any stinging. I started to come out of it when they were finishing up and talking about whether or not they were leaving it accessed!! AAAAH!

They got me out of there and parked in the hall for a while. They wanted to check my blood sugar which was good since I hadn't eaten all morning. It was in the low 80s so I asked for some juice to hold me over until I got up stairs. They got me up to the out patient infusion clinic around 1:00 pm. They wanted me to hang out up there for 3 hours to make sure all was good. I ordered up some food and a ginger ale. I got a little sea sick when I stood up to go pee so I wanted the ginger ale to settle my stomach.

After I ate I fell asleep for a couple hours, then the new nurse came in to take my vitals. My friend's who were giving me a ride home got off work around 5:00 so I hung out a little longer than the 3 hours. Then I headed down stairs to wait for them. I wasn't getting good cell reception up on the floor. When my friends got there we headed home. We stopped at the store so one of the guys could get a perscription and I picked up a few groceries and something from the deli for dinner.

I didn't get much sleep because my apartment was too hot (87 degrees on the first day of fall??) and I couldn't get confortable. I like to sleep on my sides and I couldn't do that with the fresh port incisions. And that's incisionS...plural. I have a small one at the base of my neck. I guess they thread the tube down through there or something. I was still rather out of it when they explained it to me.

Things I have learned with this whole deal: 1: Wearing a bra is best. Without it gravity takes over, pulls my boob down and pulls on the port site. 2: Ice packs = great! I think I may bruise a little and I know I'm swollen. I can't even see where the dang thing is. 3: Vicodin is my friend, but I already knew that.

Sunday, September 20, 2009

A busy week behind me, another one ahead.

So I picked up an extra shift last week, what can I say, I need the money. However, as tired as I am right now, I wonder how much longer I can keep this up. But I don't see being able to quit in the near future. I look at the pile of pills I have to take twice a day and wonder how on earth I will pay for them, not to mention the doctors that perscribe them, when I have to stop working. My insurance was billed somewhere in the neighborhood of $25,000 for my hospitalization last month. And that is sure to be the first of many. That doesn't even count the 2 weeks of IVs at home either. I don't want to work until I collapse, but I don't see how I can avoid it at this point. My one day off last week was spent at the hospital for two different appointments. I didn't have any time to rest, and rest is what I want more and more as time as goes on.

This week won't be any better. Tomorrow I have a dentist appointment. Then I have to do laundry before my port placement on Tuesday. I won't be able to haul the basket to the laundry room afterward, that's for sure. Hell, I can barely haul it there now! Then its back to work on Wednesday. At least I got 50 vicodin out of the CF doc. 25 now plus a refill, and I will be refilling it whether I need it or not. I'm not an addict but when you have chronic pain its nice to have some narcodics around when you need it.

Tuesday, September 15, 2009

Power port and more drugs!!

Hello everyone out there in blogger land! Well, I had a productive day at UW. I saw a radiologist about getting a port. If you have been keeping up with my blog you know how much my veins suck and PICCs are becoming very difficult. A friend on CF2 told me about power ports. They are rated to take higher pressure so you can receive injections that need to go in fast, like CT contrast. As I seem to get CTs pretty regularly these days I was all for this idea!! The radiologist was ok with it as well. Hopefully I'll be getting this scheduled tomorrow and have the placement next week!

I also saw my rhuem doc. I bitched about my fibromyalgia not chilling out since going off the antibiotics last month. We upped my evening dose to 150 mg. I told him that I really don't think I'll ever be able to go off the meds. He kind of has a wait and see attitude, but I'm pretty firm in my belief that me and lyrica will be friends for a looooooooong time.

Sunday, September 13, 2009

Looking forward to Tuesday.

Can I just say: SON OF A BITCH I AM SICK OF FUCKING HURTING!!!!!!!!!! Ok......I think its sorta out of my system. Antibiotics always set off my fibromyalgia but usually once they're out of my system I bounce back with a week. Well I haven't this time. And its very frustrating, I have no energy, I have to take half a percocet to get through work. So its just not good. But I have an appointment with the rhuem doc on Tuesday. I will beg for a higher dose of lyrica if I have to. Yes, me, will beg, for more drugs.

The doc wanted me to get to feeling good enough to get some excersise and then get off the lyrica. Which is great in theory. In real life, I have CF. Have CF, will get sick. Which means any benefit I may have gotten from excersise will go straight down the crapper! Not to mention the above named antibiotics that always make me hurt. So great theory doc, in practice not so much. I would love to get massage therapy again but with my random work schedule its hard to get into the chick that I like. So here we are.

Also on Tuesday is my consultation for my port placement. I was told to ask about a power port. These can handle a quick infusion such as CT contrast. That way I wouldn't have to get an IV for something like that. WOOHOO, NO MORE PICCS!!!

Saturday, September 12, 2009

I growed these!

Check out my tomaters!! This year I decided to grow tomatos in a pot on the deck. Not sure why, I just wanted to.

Monday, September 7, 2009

Long week!

Uhg, I just got finished working 6 days in a row. How tiring. Anyone want to give me about $5000 or so that I can live on while applying for disability? Maybe I should go knock on Bill Gate's door.

Anyway, I had another chest xray and they seem to think that my lung may not be all the way up yet. So I go in tomorrow for another CT so they can get a better look. If they want me back on IVs I'm going to make them put a rush on my port placement and while I'm under they can just damn well do a bronch and wash the crap out of there!

In other news a good friend of mine just got listed for transplant! So your good vibes headed toward Texas would be much appreciated. You go C!!!