Tuesday, 2 April 2013

IV Saline Update: It's happening!!!!!!!!

So much can change in a few days. One minute you're busy hating on the injustices of the medical system, the universe and the idiots who cancelled Firefly after one season (okay, that may have been a while ago but some grudges are worth keeping). And the next you are sitting in the Day Procedures Unit at your local hospital with an IV stuck in your arm sucking down some sweet, sweet saline.

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.

But the weird thing was that as much as I was tired and over it, I still felt better than I have in months. When my eldest rocked up at 5pm (with my favourite sushi in hand, he's a good boy) I was ready for a nanna nap, but still whistling a happy tune.

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.
So tomorrow, Wednesday, I head back for another session of IV saline. And Thursday my physio and OT are coming to my house for a session. The plan is two months of weekly infusions followed by rehab the next day to maximise any bonus I get from the saline. All in the hope it can dig me out of the physical hole my body has been digging the past year.

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.

Cheers
Michelle :)

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?

22 comments:

  1. That's wonderful news. Hope the treatment continues to help.

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    1. Thanks Mary. I'm hopeful too. It's such a novelty to actually have enough blood floating through my veins. :)

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  2. Yay yay yay yay!!!! So incredibly happy for you Michelle that you have finally been granted the right to try IV saline therapy!! I am an avid reader of your blog and am beyond excited and optimistic for you that this therapy will provide you with some long deserved symptom relief! And most likely - without the nasty side effects that some pharmaceutical products entail.

    I pray for you that this therapy will be effective and beneficial and act as a stepping stone for continued relief and improved health. Perhaps you can tailor the dose to two times per week to obtain even more stable and consistent results (and by results I mean blood pressure!)

    Keeping my fingers crossed for you. Can't wait to see how the subsequent infusions work out for you!

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    1. Thanks Carrie. I think that's what frustrated me the most. The doctors will happily put me on a drug which has stroke as a potential side-effect. Yet, a bit of salty water in my veins is looked at like I was asking for meth.

      Two times a week would be great but it's a no go at the moment, but I'll happily take the once a week. I'm hoping with the combined physio I can get the skeleto-muscle pump going again. Wouldn't that be nice? :)

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  3. Fabulous fabulous fabulous!

    Just wish it wasn't such a damn fight.
    Xxx

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    1. Thanks babe. I am hoping that if I can show a benefit that it might mean that it wont be so hard for others in the future. But yeah I am over the constant fight with the system, which I'm pretty sure you're all to familiar with xx

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  4. Fabulous! Since I move to Melbourne, I haven't find anyone to sort out my POTS issue. The GP I saw at uni was... Well you get what I mean. The point I wanna make was,IV saline was the ONLY single treatment that helped me when I was in the US. So I'm more than happy that you got it arranged. Hopefully, it'll become more recognized in the Melbourne area or Aussie in general. Happy for you :)

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    1. It can be so hard to find a doctor who understands the condition and even harder to get regular saline organised. I hope you can find someone soon, there's a list of doctors on the Oz/NZ site on FB. xx

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  5. Yaaaay! I'm super pleased for ya hon :-) (I'm only half way through the Walking Dead series and on tenterhooks about the second half :-D )
    Hope this run of treatment is helpful, keeping my fingers crossed for you, xx

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    1. Thanks babe. I hope it helps too. The Walking Dead just keeps getting better, I'm such a tragic now. first time in a long time that I've loved a TV show so much :)

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  6. Hope the treatment works for you! I have thought of asking my GP about this procedure, but don't think I am quite as bad with dysautonomia as you are. Had two good days in a row now, which is quite unusual. Know I will hit bottom soon because I feel it coming on.

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    1. Two good days is nothing to be sneezed at that's for sure. I know there are people with a whole range of severities who get it done (well more so in the US) so it may at least be worth asking about. You never know what will or wont work till you try it and if hypovolemia is an issue it may be a good option for you :)

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  7. So glad you felt an improvement, however short it may have been. Keep us posted on the process, and keep being AWESOME!

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    1. Will do. On the updates and Awesome part ;)

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  8. Extra super duper happy for you! I think your plan to get PT/OT the day after the saline is genius. Here's hoping you have a double whammy improvement with this game plan. Your photo of your tights and sparkly shoes is cracking me up too. As I am reading your article, I'm getting IVIG in my right arm, sitting in the infusion chair with my legs up, wearing navy blue compression stockings and bright blue pumas. My sparkly silver sneaks are at home. Doing a happy dance for you and hoping you get the best improvement possible from this.

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    1. Thanks babe. Yeah I'm going to milk this sucker for all I can and hopefully maximise it's effects. I have 2mths of saline scheduled so I'm thinking that has to help. You do know it's important to be fabulous whilst you have the IV stuck in your arm, right. Colourful stockings and a bit of bling is the only way to do these things. ;)

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  9. I hope this helps you. I'm so glad your dr finally got it approved. As always you look lovely.

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    1. Thanks babe. Definitely helps in the short term. Oh for a port so I could do it at home.

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  10. (Sorry for back-posting) but I'm so excited for you! I'm glad your physician finally got you in. I know how long/crazy it is for them to get things like this set up. The first few weeks on Saline was better for me....at least better than I was...but it took me at least a few months to feel like it could last the entire week. Now there is no lapse for me in-between so I don't have as many dehydration issues (weakness, brain fog) You may also want to ask your doctor if you can add vitamins through IV. They're easier to absorb that way (although weirdly enough, when they go through the IV you can literally taste them...weird)

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    1. I wish it could continue. But I only get the 2mths and to be honest (I am way behind in responding to comments so this is from May) my veins are pretty screwed now. At least with having a good reaction to it my cardio and GP have agreed to my doing it again when Summer rocks around again down here. that's something :)

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  11. How many liters are you getting, Michelle? (and other saline-ers out there...) Just had my first IV @ infusion center with 1 liter over 2 hours - wondering what's common...

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    1. 1 litre over 4 hours. The longer time helps you absorb it better rather than just peeing it straight out. :)

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