It has been a couple of weeks since my last post, and while I’m smiling in my picture, I’m feeling more or less still pretty crummy. Pride is taking over a bit, above though. That’s me just about done setting up my line. All I have left to do is hang it up on the pole, so I was pretty happy. My nurse or Master can do it in about five or ten minutes. It takes me thirty. I feel that craptacular.
The last few weeks have been hard. The breakdown is that:
My doctor sent me down to the ER another time because she wanted to have me admitted to the hospital, and this is the fastest way. I heard her on the phone. She TOLD THEM TO ADMIT ME. This did not happen. I got down there, they did an ultrasound, confirmed that my kidney was swollen (in addition to the stone), and sent me home. My doctor was PISSED OFF because in her words:
“You’re not a normal person, you are never going to pass these stones on your own you can’t DRINK WHAT ARETHESEPEOPLETHINKING?!” She was ripshit. She was pissed that even after talking to them and telling them I needed to be admitted for IV pain relief and continuous fluids that they wouldn’t do it. Why they wouldn’t take my gastroparesis into account was beyond us both but my doctor was livid.
Regardless, she flew into action and decided that she was going to do everything she could for me at home. So, she got me a home nurse (L). She also got me fluids and IV medicine. Thank you wonderful new GP who I love! <3
The only other time I’ve had home nursing was when I had my loop ileostomy. That was a disaster. SERIOUSLY. However, I did think they were going to teach me how to take care of my ostomy myself because obviously I need to know what to do on my own. That’s fine and all. I wanted to know what to do. I guess I had been thinking it would be different this time though because it’s my central line.
The Infusion nurses have me well trained about my port. I’ve had the thing for almost two years and I’ve never had an infection. I’ve also been really careful and always done everything they said – including never touching it! HA! Well, when I got my supplies they came with a lot of information, including this. And I freaked out and started crying right then and there! I couldn’t stomach the thought of doing it myself. It isn’t as though the needle bothers me, (I get needles all the time), but this thing is on my chest so I’d need a mirror or something and it would be so awkward to hit it just right. It just seemed too overwhelming. I somehow got it in my head that the nurse was going to come over once, show me how to access myself and set up my lines and it would be Nurse Kitty on her own.
Well, not quite!
Nurse Master Pravus takes care of Kitty quite a bit, too.
In fact, when the nurse saw an IV bag hanging up on the couch behind me, she initially thought it was mine. Then she realized it was lactated ringers. THEN we told her we had a cat and she asked who does the cat’s lines. LOL! When I said Master did it, she asked if he was going to do my lines too. I’ve been pretty visibly unsteady and I think she was hoping he’d be doing my bags for me. When he’s home he does, but it’s best to get these bags of fluid into me early in the day and he usually winds up at work then. So. Anyway. She did show me how to set up my IV bags, and I did it. She tends to set them up for me before she leaves for the day though and if she’s not coming Master tends to do it. There are a couple of times I’ve been completely on my own when the nurse has cancelled on me because a shipment of supplies hasn’t shown up (I don’t blame her, she shouldn’t have to come over really unless there’s something special she needs to do like an injection or something) and I’ve had to set things up totally on my own. I can do it but it’s not easy for me.
I’ve only had one needle change so far, and the nurse showed us what to do but we didn’t do it on our own just yet. We might, or we might not. The important thing is L is not leaving us high and dry like my other nurse who just told me to “go look on YouTube.” And yes, while I realize there are probably “How to access your power port” videos online, that doesn’t mean they have good technique, or that I should follow them, so I’m staying away and I’ll just be doing what my nurse tells me for now. KTNKXBAI.
This whole thing is really hard. I feel like garbage. I have a gravity line, not a pump. That’s fine and all but it does mean that I have to stay awake enough not to let it run totally dry. I have to set it to switch bags. I have to heparinize it and disconnect. I have to get a blood return everyday and flush with saline. It’s simple and wouldn’t be a big deal if I felt otherwise normal but I feel like garbage because I have an obstructing kidney stone and I feel awful. Bleh.
Sometimes I feel so sick that I don’t have the energy to disconnect and I just turn the flow to zero and wait for Master Pravus to come home. I feel that garbagey.
The stones have made me even more nauseous than normal and I’ve been able to eat even less than usual. Normally I am lucky to finish an egg and dry white toast every day. Since the stones started I usually just get in my medicine, and sometimes not even all of it. This has been disastrous all around. The amount of energy I have is nil because of this and it has been almost three weeks since the start of this “attack.”