I'm finally writing the promised post about what happened at the hospital on Friday (ketamine dose) & Monday (heart checks). As far as I can remember I haven't until now said what the tests and monitoring on Monday was for. I was pretty stressed about it all, and I'm only mentioning what happens now so that anyone trying to find information online can.
Friday - dose me up!
Friday was a pretty relaxed day, as it was my wonderful ketamine dose! I was up in the early hours, 2am for anyone wanting a specific time. I didn't have to be at the hospital until 9am, but there is a 6 hour no eating policy. If I don't eat in the mornings before taking my medication I feel pretty sick. I watched anime up until I needed to leave. Journey was by mostly by train.
If only our trains had Hello Kitty on them - now that would be cool!
No travel delays (whoo, something I always worry about). Got the hospital super early - 8am. Waited until 9am for them to be ready for me, mostly reading and at the end chatting to the guy next to me who was new to infusions.
(An anime hospital)
I didn't have an infusion this time - I was taking ketamine under my tongue. Because absorption is different in each person, there's no set dose per se. I had 50mg of ketamine squirted under my tongue, and I had to keep it there for 5 mins. I had at least 1 nurse watching me all the entire time, and some points it was 1 doctor, 1 nurse & the pain specialist. It was quite amusing having everyone stare at me as I do my best not to swallow. That would be a bad idea as the ketamine would then get processed through my digestive system.
After 5 mins I spat the mixture out, rinsed my mouth, and had another 50mg dose, this time for 10 mins. They were waiting for me to start feeling how I do when I have an infusion. I felt a bit weird, but rather happy too. It was easier to see why people are dumb and take it as a recreational drug. After a bit of time making sure I was ok, I was allowed home. Yay! I felt pretty good and was looking forward to resting until Sunday.
(How I hoped to be)
Boy was I wrong.
I felt absolutely lousy Friday evening, and pretty lousy all of Saturday and a fair amount of Sunday. I guess having ketamine slightly differently means the side effects are different. It's so worth it though - being more comfortable is wonderful. I've another booked in 10-12 weeks (or will have) - and if this lasts long enough, they'll train me up so I can do it myself at home, which is the whole aim of it. If that happens I'm probably going to feel like I need a bodyguard when I first pick up the ketamine. But it will mean less travelling to the hospital all the time, which isn't close to me, and just constant pain relief (more constant than having to wait for a free slot). A couple of days feeling rough is more than worth it for the relief I get.
(A family scene - mine don't have purple hair)
Sunday was spent resting and with family, with yummy food and laughs.
Monday's hospital clinic
(The unknown is always scary)
Monday was a little bit of an unknown, as I'd never been to that particular hospital before, and was understandably anxious about my heart check. There wasn't anything wrong with it, it's just that patients with my condition (Mitochondrial cytopathy) have a heart check every now and then to make sure it's ok, as the heart is a muscle, and the often on strike mitochondria in each and every cell in the body are quite numerous in muscles.
I got there about 30 mins early (usual trip via the train), and was booked in. First I waited a little to see the specialist nurse who explained what was going to happen. I then headed off to wait for an ECG. Now, I'm used to waiting yonks in hospitals so had a few books with me. I didn't get to read very much as I was seen quickly. The ECG itself happened so fast I barely had time to breathe (I was chatting with the technician, but no sooner were all the electrodes on then they were off.
Out I went to wait for the echo(cardiagram) Once again that was a short wait. I'd been warned that echos can take up to 30 minutes, but mine didn't take that long (they do in-depth ones at that particular hospital). Still not sure how you can get an image of the heart from your neck, but there you have it. Now, next I was due to see the consultant and then have a 24 hour heart monitor attached at 3pm. It was just gone 11.30, and they were ever so helpful and said they'd try to fit me in then. By 12pm I had the monitor, got told to go get something to eat (I had food with me) as the clinic didn't start until 12.30pm and there were 2 other people in front of me.
After I'd had a bite to eat and texted my family to say how long I expected to be, I went back and saw the specialist.
My heart is very healthy. It both looks and functions well. The only issue is a fast heart rate, which I've had since I was little and which freaks every new medical person I meet. I may need some meds for it if it doesn't slow down when I sleep. But that's not a big issue, and easily fixed. So long as there isn't an issue with the monitoring, I won't be back there for another 2 years. It was pretty good to leave at 1.30pm instead of gone 3.30pm!
Tuesday at 12pm I was frantically taking the machine off - while it was still recording - and headed to the post office. I hadn't been shown how to stop it, so it probably reported I wasn't attached to it for a fair while.
There may be a spike in the reading when I discovered I can watch the latest season of Winx online in French, but other than that I think it went ok.
Yesterday I spent all day watching anime. Today I've spent all day reading, and will be watching anime tonight.
This weekend I'm getting back into my normal routine, which I'm looking forward to. I've been off work for 2 weeks, which is quite a while for me. I miss everyone! But I've had a good break inbetween hospital stuff, and I'm ready to get on with things!
(Holo from the anime Spice and Wolf)
