Wednesday, August 26, 2009

What's on my mind?

I really don't know why I feel the itch to blog tonight. I guess I am restless. And lonely. I got an email from D that says he has about 70 days left. That's just a wee bit more than 2 months!!! I can't believe its been 4 months since he left (almost). The one good thing about this deployment versus the last one is that I was more prepared. I knew what to expect, how hard it was going to be, how much I would miss him. And that knowledge made it easier to go about my life. Its not that I miss him any less. If anything I miss him more. Before the last deployment we only had about 2 months together. This time we had 8. We got a lot closer, went through some seriously bad shit together, and I love him all the more for it. So no, I don't miss him less. Its just that I know I can do it. I did it once before, and I can damn well do it again! I'm not going to let a little thing like a war get between me and my man!!!

I've gotten into making jam. I did blackberry the other day. There is a huge patch of blackberry vines behind my apartment. I picked a big bowl full, washed them, smashed the crap out of them, cooked them with pectin, lemon juice, and sugar, and put it in jars. MMMMM! I made apricot today. MMMMM! I think everyone is getting jam for Christmas. Its fairly cheap to do this and its fun. Plus who wouldn't want home made jam!? Only some crazy fucker that I wouldn't want to know anyway! HA!

I got some statements from the hospital about how much they were billing my insurance for my admission. *Falls over from the shock* Ok, I knew that its expensive to be in the hospital. Just to have a damn bed in the place was almost $1500 a day! Then you throw in meds, tests, docs, labs, etc and so on. And what do you get for a 4 day stay in the hospital? $25,000!!!!!!! Holy shit! Are you serious!? If this isn't an agument in favor of health care reform I don't what is! Thank the higher power of your choice that I have AMAZING medical coverage. But at this rate I'm going to burn through my 2 million dollar cap in no time. And the average Joe is just supposed to bend over and pull THOUSANDS of dollars out of his ass? I don't fucking think so! No wonder our life expectancy sucks in this country. No one can afford to go to a doctor for preventive care let alone some sort of emergency like they have a damn heart attack because they can't afford to go to the doctor and get cholesterol and blood pressure meds!!!!!!! Slap your elected officials around and tell them we need to change this shit REAL fucking quick. EVERYONE should be able to go to the doctor!! That should be a basic human right along with food and white cotton underwear!

Sunday, August 16, 2009

The nice lady at the farmers market.

I went to the farmers market with some friends today. It was warm and sunny and the market is on the water so it was a perfect day to go! I had fun looking at all the crafts. There were some stands with some really pretty jewelry and art.

I had started my afternoon infusion right before my friends picked me up so I was hooked up for about half of the time we were there. When it was done I stopped to unhook it and when I was putting the mesh cover back over it a lady came up to me and said "Oh you have a PICC line!" Then she told me that she had had several PICCs while on chemo for lukemia. Then she said she had a kidney transplant. Well of course transplant is one of my soap boxes. So I told her congrats on that.

Then she asked me why I had one. I explained that I have CF and that I was getting over pneumonia. She said "Oh then you would definately need on going antibiotic therapy!" She also told me that I look great and that she was glad I am not dragging around oxygen with me.

This was one of those breif meetings in life that really kind of touched me. Had that woman never had lukemia she probably wouldn't have had any clue what a PICC was and would have walked on by. Isn't it funny when life works that way? This nice woman had to go through something aweful so that she could share the certain little something that anyone who has chronic health problems has. In that breif conversation we shared how hard life is when you're sick. The fears, the frustrations, the deep appreciation for life and loved ones. Its something that a well person can never understand, no matter how close to you or how much they love you.

Thursday, August 13, 2009

Pic of my bleeding PICC

There it is! A nurse came and changed my dressing. I think this happened during the night, but I don't know exactly what I did to cause it.

The PICC from hell!!

I think this PICC knows its going to be my last and is taking its anger out on me! I've had it for 8 days and I've already had phlebitis, had it TPA'd, and now I bled during the night and have to have another dressing change. It doesn't help that the damn thing is practically in my arm pit! Its just giving me MORE reasons to be happy about getting a port!!

Monday, August 10, 2009

Clinic visit.

So I had a visit with the CF clinic today. They took a new chest x-ray and it looks better than the one from the ER last week. I asked to see my CT out of curiousity. I saw my chest CT in May at Denver so I even had something recent to compare it to. On this one there was a HUGE blob of gray covering about 1/3 of my lung. That would of course be the infection/collapse. I was kind of shocked by it, even though all the docs had been telling me how bad it was.

Last night I had some trouble flushing my PICC. One lumen wouldn't flush at all, the other one was sluggish. So I called the on call nurse with my infusion company. He said to flush the one that was slow several times, and do it hard. That got it going again but the other one was still slow. So today I saw the PICC nurse at clinic. She wasn't able to get any blood return from it so she put TPA in it. TPA is an enzyme that dissolves blood clots. It had to sit in there for a while so mom and I went and got lunch while I marinated. We got back to clinic and we were able to get blood out of it!!! YAY!! So she told me to flush it hard with 2 or 3 flushes after every infusion. I'll also be using hepperan (sp??) twice a week to keep it clear.

I'm going to go in for follow up PFTs when I'm done with my antibiotics. And the big news from clinic is that I am getting a port!!!!! YAY!!!! I had planned on asking for one at this visit anyway and having this PICC gave me more amo to throw at the doc. My veins are very small which makes it hard to insert the PICC and once I've had a PICC in a vein that vein can never be used again. Plus they've never been able to get one in my right arm except for the first time. So the doc agreed with me that a port is a good idea. I'm going to get it sometime after I am done with this round of IVs. They want me feeling good before putting my body through anything else, which I agree with.

Thursday, August 6, 2009


I'm home!!! I got discharged yesterday afternoon. My first stop was the chiropractor!! Those hospital beds are evil torture devices. Then mom and I went to the pharmacy to drop off some scrips because the doctor "forgot" to send them down to the hospital's pharmacy. Thanks a lot doc!

We picked up a few groceries too and headed home. It was so nice to know I would be sleeping in my own bed. And my kitty was SO happy to see me. She has been very protective, not wanting to leave my side.

Today has been rough on me though. I woke up with pain again, which first I thought was another collapse but now I think I popped out a rib coughing. The pain is different, it hurts when I push on it, and that wasn't the case before. So I had mom bring me a pain pill and got up in a little while. I ate breakfast, watched TV, nothing too special. When I started my afternoon infusion I was feeling sleepy so I decided to go lay down for a nap while it ran. When I got up I was feeling dizzy and nauseous, and pretty soon I threw up. When I tried to make it to the couch I almost passed out. So I laid there for a minute and then thought to check my blood sugar. It was kind of low so I think that between all the meds I'm on and the low sugar my system just went all haywire. Mom got me some juice and I laid there and drank it. In a little while mom said that my color was coming back. I still felt dizzy for a little while but that eventually went away too.

Tuesday, August 4, 2009

Hotel Hospital

OK! Let me just fill you all in. On Friday I felt kind of crappy. Coughing more, the stuff I coughed up was thick and sludgey. So I called the CF clinic and they called in oral antibiotics (abx) for me. Unfortunately I didn't have time to go get them that day. I had an appointment in the morning and then worked late, so the pharmacy was closed when I got off work. The plan was to pick them when I got off work on Saturday.

About an hour before my shift was over I started having some pretty bad pain in my left lung. It got worse and worse so I called the on call pulmonary doc. He said to come to the ER so they could make sure that I didn't have a blood clot or a collapse. So I came in, got some pain meds, a chest xray, and a CT. The imaging showed a big blob of infection in my lung that they said was plugging up my airways. Pneumonia in a nut shell. So they gave me a dose of the abx I had been perscribed, and strict orders to go pic up my scrips the next day. I also got some percocet to take home.

On Sunday morning I woke up early still in pain. So I got up, took half a percocet to start with, updated everyone on the CF forums on what happened, and when the perc kicked in I went back to bed. I slept for a few more hours and when I woke up I was in more pain than ever. I seriously considered calling 911 it hurt so bad. But they would have taken me to Providence hospital and then I would have had to fight with them to get transfered to the UW. So I called the on call doc again who said he was going to look at my CT and call me back. In the mean time I started calling around to find someone to take me in. I wanted to be admitted since they could keep my pain under control and get me my meds. I knew there was no way I could deal with it at home. The doc called me back and said that I could be admitted.

So I got some stuff packed and came back to the ER. I was dehydrated because I really didn't drink anything all morning because I felt so bad. So they had a hard time getting an IV going, but finally got one on the 4th try. It was in a weird spot though and was hurting me so I asked for them to start a new one once I got some fluid into me. They gave me some meds and got the fluids running as fast as they could to get me hydrated. I hung out for a while and then some students from the medical team came to start the admission process. Which mostly consisted of a bunch of questions.

After a couple hours they had a bed ready for me and moved me up stairs. I was feeling pretty crappy by this time and asked for more pain meds and something for nausea. I eventually got both and started to feel better. I ordered some fruit and it tasted really good. I always want cold and wet stuff when I'm not feeling well, and the fruit hit the spot. Nothing eventful happened for the rest of the night.

Yesterday I still felt pretty bad. The docs came in to check me over, I had CPT, and walked around as much as I felt like. They pumped me full of every antibiotic known to man it seems like. I'm on IV vanco, cipro, and ceftaz. I'm taking oral zithro, and inhaling tobi. So that is 5 antibiotics in all. They really wanted to cover everything I guess. Last night after my CPT session I started coughing and I spit up a huge glob of crap. They wanted a sputum sample so I gave them a mother of one.

Today I fell quite a bit better, and I think a lot of is from coughing up that glob last night. I think it was part of the plugging. My pain is over a much smaller area, not the whole lobe. They talked about sending me home today but I said I think another day. I don't want to push my luck. I would hate to end up back here. Here I can rest and let someone else deal with my meds and bring me my food. I don't have to cook, I can fall asleep whenever I want without having to worry about starting an IV on time. So I think I should go home tomorrow. YAY!!! My kitty misses me and I miss her.