Last Monday I was busy pouting and stamping my feet when I had a phone call from my GP. I could tell from the outset that something was up as she was clearly excited. You see, after much hard work on her behalf, including three months of phone calls and searching, she'd finally organised weekly IV Saline through my local hospital. And not only that. She had also managed to get me back into the Community Rehabilitation Program who are happy to come to my house for physiotherapy and occupational therapy each week on the day after my infusion. That's what I call "Winning!"
Now I was rather excited by this news to say the least. But a part of me was also sceptical as I had no tangible paperwork to prove that it was true, just my GP's phone call. Too often over the last seven years I have allowed myself to get excited about a potential treatment or appointment only to have it ripped away at the last minute, or end up stuck in a maze of soul destroying red tape and inevitable disappointment. Yet, Tuesday there was a call from the Day Procedures Unit to say they were expecting me Wednesday morning. Could it really be true?
Wednesday morning rocked around 36C and blustery, and I was of course sick as a dog, having travelled into town to see my neurologist the day before. But I wasn't going to let my recalcitrant body get in the way. So I sat there on the loo clutching my puke bag willing my body into submission. I managed to get dressed and organize a taxi and drag my protesting body into the hospital.
Of course in my brain fogged, vomit-suppressing, cheek-clenching state I managed to get the taxi driver to drop me off at the wrong entrance. Which of course meant that I had to walk/stumble uphill in the heat to the next entrance. Thanks to all those people who just stared at me, or whispered to their companions, rather than offering assistance or even asking if I was okay, as I shuffled and weaved my way up the steep driveway with my cane. Go community spirit!
But by 11am I was there in the blessed cool AC of the hospital, filling in the 28 million page form which of course never has enough space for all my meds. Whilst the couple across from me who were apparently there for hearing tests, let their bub scream hysterically in a pusher for 20 minutes, whilst the rest of us clutched our ears and sent death stares in their direction.
And then I was in.
Sparkly silver shoes and bright red compression stockings are a must for heading to hospital.
I was excited, exhausted, nauseous and desperately in need of toilet break.
But I wasn't moving till that sucker was stuck in my arm.
They even managed to find me some pretty blue cohesive bandage so no issues with adhesives. There was much merriment that it is also the tape they use on racehorses and that my lovely nurse stole it from another ward. Yep, me, horses and petty larceny, what more could you want.
Hello my pretty.
The only way to spend 4hrs hooked up to an IV.
I am keeping the season finale for tomorrow's session so no spoilers please.
2hrs in I was rather excited by my IV. A bp of 120/69 and hr 75 and
no facial paraesthesia, will do that for you.
4hrs in I was a tad over sitting in a seat. Amazing how tired you can feel after just sitting around. Plus there was the fact of having to use the share toilet 45 times whilst I was there. People are foul.
So what was the result?
- The 48hrs post IV I was able to do more than I normally can. My bp stayed relatively stable for the 48hrs something I haven't had for the years. Amazing how much of a difference that makes. Apparently I was also brighter and had colour in my cheeks.
- By Day 3 it was starting to wain. My bp was starting to do it's usual frantic oscillations but I still felt less of the general malaise I have felt since day one. For those who don't have Dysautonomia, it's kinda like the general crappiness you get when you have the flu, but I'm lucky enough to feel it 24/7 365 days a year.
- By Day 4 the honeymoon was over and I was pretty much back to my normal. I still tried to push through (or as Mr Grumpy so eloquently put it, I was a "dumbarse"). It wasn't pretty.
- By Day 5 I was a mess and ended up coma sleeping the day away. I am hoping that my crashes will get less with time as this was worse than I've had in a while.
I've never had saline when I wasn't already in crisis so I really had no idea how much of a difference it would make. It's been a pleasant surprise. Using it as a prophylaxis is not the norm here in Australia. It is a first for my specialists, my GP and the physician at the hospital that agreed to let me come in and try. I am hopeful that the combination of weekly saline and rehab will combine to start me on the path to some improvement. I am also hopeful that if I have a good outcome that it may be used as a case to support regular IV saline as an adjunct therapy here in Australia, or at the very least, here in Melbourne.
I am also continuing all my usual treatments (medications, diet, external aides, meditation, etc) so IV saline is not a replacement therapy for me, just another weapon to add to my arsenal.
I'm going to add a caveat here. Regular IV saline is not going to be appropriate for every patient and you should always consult your treating doctor to discuss the specifics of your presentation before making any treatment decisions. There are risks involved with IV saline, such as damage to your veins, clots and infection. Different risks again if you have a Port or PICC line introduced to the mix. However, like every treatment option it comes down to risk-benefit analysis which we all must assess at a personal level. All patients have a responsibility to be as informed as possible about whatever option they choose.
Having said, that I am pretty stoked at the moment and looking forward to my infusion tomorrow. I'll let you know how it goes over time.
Huge shout out to my fabulous GP without whom this wouldn't have happened. I've never had a doctor persevere like that before. Also to the lovely staff at the Day Procedure Unit who couldn't have been nicer and the physician from the unit who took a chance on, what for them, is an out of left field idea.
This song really doesn't have much to do with this post except that it just makes me happy and I love it more every time I watch. Plus, I want to dance like this one day. Maybe I can put that as one of my rehab goals?