6th admission coming up. Waiting for a bed at home, which worked out great since I feel pretty fine. I have plenty of energy to walk the dog with hubby and do little errands. I'm on orals while I wait, which is kind of bittersweet since obviously they will start chipping away at whatever infection is in there and falsify my blood numbers when I finally know them.
Thats actually why I'm grateful that clinic showed an even lower pft then ever before. At least with that fact in my mind my instinct to want to squeek by on these orals is quite dead. That said, I'm sooooooooo not looking forward to going in. Every little aspect of that place that was good has left. I don't trust them anymore. I've heard too many bad things. But I'm still glad I've heard so that I can be careful. No more fun with other CF'ers, but I can handle that since I already handled it a year ago when I was in.
I'm tossing around the idea of braving the picc line this time. I've almost mentally got past the idea of the insertion, but I'm visualizing myself panicking constantly the whole time afterwards. Worrying about blood clots, air bubbles, and all the silly little rare problems that exist. I guess I just like being in control. When I have a peripheral i.v., as much as it sucks to have them, I feel like if something went wrong I could grab a hold and rip it out of my arm. Picc line, not so much.
Then theres homecare. I'd KILL to go home and do my meds. I meet so many of the ideal requirements. I'm not allergic to any drugs, I clearly feel fine, I've been on the combo they want to use twice before, etc etc. Only thing is the time-schedule for that combo is ridiculous. Every 4 hours basically.. sleep? Not likely. Not to mention that little worrying thing I've got going on. Can't imagine being an hour away from the "professionals" while theres a tube above my heart.
I know, drama drama. They should have a rehab program for patients like me. Surely I'm not the only one. I think the best thing for me would to be to spend my admission at the children's hospital. Do everything with doctors who are used to dealing with first timers. Being surrounded by 5 year olds who are braver than me would surely be the quickest cure for my problem.
Haha, the picc line is nowhere as bad as it seems. I was scared to get one at first I figured I could just survive with the regular iv. But then they told me I needed a picc if I wanted to go on homecare so I put everything aside and tried it. They had it in in no time with no problems. You cant even feel the tube in your arm to your chest. As for the meds, they usually put the one that you have to get every 4 hours on and infusuion pump that you keep hooked to and hangs on your waist the whole time. Then you pause and disconnect,flush and do your other med just by gravity then flush and hook the infusion pump back up. It just runs on batteries. So really you just have to get over the intial fear then everything else is a walk in the park :)
ReplyDeleteI was scared spitless even thinking about a picc line too. But after getting one, I wanted to kick myself for putting myself through the peripheral ivs for so long--they are much worse. Blowing ivs every other day (even more often sometimes) and having no good places left at the end of an iv course was MUCH more stressful than the picc placement. Sean is also right, you can't feel the tube at all. The only time I could feel the picc line was after many years of getting them and my veins were scarred--that's when I made the scary leap to the port (and then wanted to kick myself again for putting that off because ports are the best!)
ReplyDeleteI remember thinking that getting a picc was an admission of my cf getting worse...like I was somehow "better" if I only had regular ivs. So that was part of my resistance as well as the fear factor. In actuality, you run less of a chance of getting infected with a picc placement than with multiple iv starts--so that helped me think I was making a SMART decision instead of thinking I was admitting defeat by choosing a picc. Another helpful thought that got me through my fear was that by choosing a picc I was being aggressive and showing my CF who was boss. I felt tougher after facing my picc fear--you can too.
I appreciate your comments guys... Nice to hear from you Sherri. I keep having long talks with patients and nurses alike to try and make myself the most "ready" when its time. Whether its this admission or not. Lung function wise I'm behind with getting used to these very normal things, but admission wise I'm still a baby and happy that I'm trying to get a picc before I'm on admission 25 :P
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