IV therapy. On Demand. But only if you're hung over, a celebrity or wealthy.

Some days you see a news story and it is hard to not end up angry. A while ago on my local news there was a story about The Remedy Room. This spa in New Orleans is offering IV treatments for the hung over, or those who just want a boost. This isn't the first time I've heard of one of these clinics in the US. I've also heard of them in other countries as well. Individuals can walk in and be hooked up for a reasonable price of US$149. You can top up with pain relievers and a variety of vitamin concoctions.

In one centre in the US if you come in with a hangover you can have IV Zofran (Ondansteron) an antinausea drug, added to your drip. Others offer a travelling service that will come to you. Whilst another sits in a bus outside nightclubs in Las Vegas.

Every time I see one of these stories my blood boils.

Why am I angry? As a patient with Dysautonomia I, and many of my fellow patients, have to beg to be given a litre of saline, despite dehydration and hypovolemia. Despite it known to be an effective treatment. We are told it's dangerous. That your body can become reliant on saline infusions. That our veins will give out. Presentation at an emergency room following a collapse is not a guarantee of IV saline and many patients can attest to being sent home as dehydrated and symptomatic as when they were wheeled in through the automatic front door.

It took 3mths of frustration and searching, for my GP to find a clinic for me to obtain regular IV Saline infusions, despite a medical need. Many patients simply give up on sourcing saline as they simply don't have the energy to fight the system. Ondesrerone is incredibly expensive here in Australia, especially if you have to take it multiple times a day. Yet have a hangover and it's popped right in. In the US there is an IV saline shortage. As pointed out by Was This In the Plan? there is also a shortage of the ingredients that are used to make life sustaining TPN and yet this too can be purchased.

But in these spas, and many others, you can walk in and be hooked up, if you have the funds.

It is not only the US. The UK and Australia also have IV spas. A quick check on Google brings up multiple spas or wellness centres in Australia where you can organise vitamin infused IV therapy.

If you're after "Energising vitality" they can help you out. If you have cold or are simply stressed, others are happy to help. Others speak about a range of health issues from migraine to immune deficiencies, but again price is a factor placing them out of range for many consumers. These products are seen as a saleable commodity, on top of any therapeutic use. With single infusions up for offer for a casual few hundred dollars.

And yesterday this photo came up in my timeline.

(source)

Ryan Phillipe and Paulina Slagter lounging around having a casual IV treatment. To say that I am an angry may be an understatement. They are the picture of self-indulgent wank. A culture that mocks and trivialise those who need such treatments, but are unable to access them either through a lack of funds, lack of physical resources (the shortages described above), or medical opposition.

The repugnant Hangover Heaven bus even sells merchandise to commemorate your experience.

IV therapy isn't the latest trend of celebrities. For so many it is a necessary, and life sustaining therapy. Having been in the position of having to nearly beg for a bag of saline in a hospital emergency room, despite severe dehydration, I can not feel anything but anger. My need is not because of a night spent partying, or because I need a cool pick me up, but because my body refuses to hold oral fluids even with pharmacological help. Because I become so dehydrated I can't stand. I can't speak. I can't lift my hand or function.

People like Mr Phillipe and these spas, trivialise what many patients around the world are going through simply to function at a basic level. They trivialise the struggle to access care. And they show once more that money is the key to healthcare.

They minimise the risks that are associated with these procedures such as infiltration, collapsing veins, infection and vitamin toxicity.

They minimise and make mockery of the many patients who cannot access care.

They minimise and make mockery of the many patients who would love to never see another IV needle again.

They also take financial advantage of patients who in desperation turn to these services for help.

The further commodification of medical therapies thanks to celebrities and spas promoting these therapies as fashionable or trending, mean that they will be placed even further out of the reach of the patients that require them to function or sustain life. And that is unacceptable.

Michelle.

Please head on over to Was This in the Plan? and read:
They choose vanity. We choose life.

Today I went to a cafe.

Today I went to a cafe.

"And.......?" I hear you say.

It may not seem a big deal to most. For many it is a common, or even daily event. But not for me. I can go months without heading to a cafe. Or anywhere really. Well anywhere other than needed medical appointments, which, when you think about it, are hardly a source of excitement.

I have tried many different ideas to help me get out more. Compression stockings. Extra medications. Even a wheelchair, so I at least take the exhaustion and symptom exacerbation that comes with being upright and walking, out of the equation. But my overall level of decreptitude frequently means that heading to a cafe and all the logistical issues that come with that outing (showering, getting dressed, travelling, finding somewhere with air-conditioning, a place I can put my feet up,....) , are just beyond me. I have a finite level of energy reserves, and of late they have been on a steady decline.

"So how did this miraculous outing happen?" I hear you ask.

The answer:

One litre of salty water shoved in my vein. That's it. That's all. No more. No less. No tricks. No secrets. No magical talismans.

I have no idea why this is so effective. There are multiple theories. But in truth I don't care. It works and that's enough for me.

I drink my 2-3litres of fluids each day. I increased my salt intake. I use both Florinef and DDAVP, both medications designed to make my body hold onto fluids rather than peeing them out.

And yet....

I drink. And then I pee. Often more than I originally took in (and yes I have spent a day collecting and measuring my pee, doesn't everyone?).

But with slow IV administration it stays in. I'm not running to the loo every 3 seconds like I am with oral fluids. And because it stays in, it works.

My headache that has been continuous since Christmas day is gone. And whilst I am tired (I arrived at the hospital at 9:30am and didn't leave until 3pm) that general level of malaise that I have every single day is gone or at least greatly decreased. Tired without that ever present level of indefinable unwellness is a whole different ball game. I have colour in my cheeks and feel mentally brighter. I am still tired but feel better, and more importantly more functional, than I have in months.

And when my eldest said, "do you want to go for a coffee, Mum?"

I actually said, "Yes".

I don't care whether IV Saline remains a controversial therapy in some medical circles.

I don't need their approval.

I do know I have a cardiologist, a GP and a local Day Procedure Unit who were willing to give it a go.

And today I sat in a cafe with my son and had a coffee.

And that to me is a successful treatment.

Cheers
Michelle :)



Don't forget to check out my Clicking my Heels for Dysautonomia fundraising for The Greg Page Fund for Orthostatic Intolerance, and the Baker IDI. Nearly at $1,500 already!

IV Saline Update Weeks 4 & 5

My new boyfriend, sorry Mr Grumpy. I love you IV Saline.

Well here I am already at the halfway mark of my two month trial of IV fluids and rehabilitation. How time flies when you're being poked with needles once a week. As my lovely nurse said today I'm looking a little druggie at the moment with my track marks. But so far my veins have been found and fluids have been infused so I can put up with looking like an extra from Trainspotting. It's a small price to pay for feeling semi-human once a week.

Surprisingly my veins are still hanging in there. Last week the one in my left arm was super painful. It felt like the doctor had put the cannula in a nerve rather than in my vein. Couldn't even use my arm whilst it was in and it ached for hours after. That was frustrating. But I sucked it up and just concentrated on the sweet sweet saline fix I was getting. Today my favourite nurse put it straight in, pain free. Love her. Always amazed at how some seem to have a natural talent for putting the cannula in and others do it like they are playing Pin the Tail on the Donkey, complete with blindfold, spinning and after downing a keg.

My blood pressure continues to be more stable whilst I am having the infusion and for about 48 hours after. It's not quite as stable as it was the first time I was infused which is a pity, but I'll take what I can get. And at this point it's still far more stable than what I was used to pre-infusions.

Last week I did have a bad patch of bradycardia during infusion which I hadn't experienced previously. Luckily it was still 40bpm so for me that was fine as it has gone lower and for far longer at times. But it did freak out the nursing staff a bit. It's always strange what you get used to with this disorder. My ANS has been unstable for so long that much of what goes on has become white noise. It's only when others point it out, that you realise it really isn't that normal.

Case in point: today my temperature has been jumping around: 38.2C when I first came in, 35.5C a couple of hours later. Poor new nurse wasn't used to my body so we had to try a few different thermometers to test my temperature. All of which came back in the 35C range. In the end she threw up her hands, agreed it must be right and walked off shaking her head. By the end I was back up to a reasonable 36.6C. Personally, I think that whole homoeostasis thing is over-rated, but my lack of it continues to be confounding to others.

The fact that my heart rate, blood pressure and body temperature are constantly oscillating, whilst annoying and exhausting, seem so normal to me now is probably a problem. I've talked before about losing sight of just how sick weare when you're sick 24/7. It's really only at times like this or when I was assessed by my Occupational Therapist and Physiotherapist that I realise just how much my health has deteriorated. And just how far from normal my body now resides. In one way it's refreshing to see the look of horror on the faces of the medical staff when they realise just what is going on in my body, ("I know it could be worse, but OHMYGOD" was one reaction from today when I went through my story again) especially with so many not understanding or believing over the years. But as much as that understanding is good, still it is very much a case of sucking it up, not dwelling, and getting on with life. As we all know there's not a lot of options out there.

I'm still noticing that for those first few days that I am mentally sharper. Even writing a basic blog post which will normally take me around a day is now a couple of hours and maybe 2-3 drafts, vs 6-10. Whilst I wouldn't say I'm even close to what I was before becoming unwell, I am still far better than the vagueness that I have become so used to over the last seven years.

The only real sticking point for me is the fatigue. My stamina is still poor. If my body or schedule get even slightly out of whack then the fatigue hits like a tonne of bricks. With infusion days requiring an early morning start, which doesn't allow for the meds to kick in, or for me to get my usual morning ritual of communing with my porcelain lover for an hour or two out of the way, the day is already off to a bad start. I've also been finding that simply sitting in the chair for those 4-5 hrs plus a lot of conversation and being poked and prodded is exhausting. The Day Procedure Unit where I have my infusion is quiet and less hectic than other hospitals I've been in, but still I find that all the stimulation is overwhelming and tiring. In a way, the very process involved in accessing IV Saline absorbs some of the benefit. I often wonder if I could do it at home in my quiet house over the evening if I would see more of a benefit. Not that I have that as an option unfortunately, but I do wonder if others who can self-administer at home have noticed the difference.

And I continue to suck down my oral fluids from my smelly hospital jug. 

I still think it looks way too much like a pee bottle.

I did manage to get out of the house for the first time in nearly a year last Thursday after I had the infusion and I know I would have been unable to do that before. A long drive for a late night in the city at the Melbourne International Comedy Festival ticks all the wrong boxes for my body and would generally be something I'd avoid. But I made it through and had fun. I didn't even get home until 11:30pm which is unheard of for me. Full disclosure says I was feeling like death warmed up for the next few days and completely non-functioning, but actually going out has been beyond me for a long time. So high fives to that litre bag of juice.

My physio and OT have been scaled back a little thanks to my protesting body but I am still doing three lots of OT arm exercises and two of physio a day. I think there is a difference but it is hard to tell. Last week I popped my right hip just before the physio came and then had a bad intention tremor for most of the session which put a dampner on things. But I am trying to crawl my way back. I'm determined to do as much as I can but it is a slow process when you are starting from less than zero.

Today as tired as I am, I've had a lovely reading of 112/68 hr 66. It doesn't seem real but there it was on the screen and I saw the nurse write it down on my file, so it has to be real. Amazing what your body can do when it has adequate blood volume. I love you little bag of saline.

Air kisses to the machine that pumps the juice into my veins.

And even bigger air kisses for the magical bag of juice itself.

I should add that my final reading was 95/68 because I'm weird like that. As the perplexed nurse said “but you've just had a litre of fluids it shouldn't drop”. Oh well, if she comes back in 5mins I'm sure it'll be back up. It is actually nice to have the obs to back up what I am saying to them. So often you try to explain what our bodies do and you're told it's not possible or it can't be as bad as you say and for five weeks now they've been able to document every up and down of my wildly swinging ANS. I've answered more questions about Dysautonomia in the last five weeks than I have in the last few years. Actually this whole process has been an education and awareness raising bonanza, from nursing to allied health. And whilst my main focus has been simply getting fluids that has been an added bonus to the whole process.

So as things stand at the end of Week 5, the pros and cons are as follows:

Pros

• Reduced facial paraesthesia.
• Reducing/halting facial droop aka stroke face.
• Colour in my face.
• Blood Pressure more stable for at least 48hrs. Still fluctuates but the range is dramatically reduced.
• I have Pulse Pressure (Systolic minus Diastolic eg a bp of 120/80 has a pulse pressure of 40). No single digit pulse pressures since I started IV Saline.
• Heart Rate more in normal range, far less bradycardia overall, no episodes of tachycardia in 5 weeks.
• Improved mental acuity in the 48hr window.
• General malaise/flu feeling improved for 3-4days.
• Ability to participate in Physio and OT next day.
• Went out at night for the first time in nearly a year.
• Have been able to do a few jobs around the house that I had been putting off due to my health.

Cons

• Logistics of getting to hospital weekly and day long procedure.
• Fatigue from hospital day.
• Did catch a bug from hospital.
• Veins getting weaker from multiple needle sticks.
• Big crash on last few days (not sure if it's worse because I am feeling better and therefore doing more which leads to a bigger crash.)
• Real benefit only for 48hrs

Michelle :)

You are Just the Thing, IV Saline.

IV Saline Weeks 2 & 3.

(Well, who doesn't do a hospital loo selfie? It's a looooong day.)

Well here I am back at the Day Procedures Unit (DPU) for my next hit of juice (IV Saline). I'm a wee bit tired and washed out today so looking forward to that precious litre of fluids. I think I've been trying to make the most of any benefit from the IV and pushed a little too far. But you get that. At least no one can accuse me of not being motivated.

As promised my update as to how it's all going. The big question being “is it worth it?” Worth it for the hassle of finding a doctor who'll prescribe the procedure.? Worth the hassle of finding a place willing to do it? Worth the four-plus, hours it takes to be infused? Worth that long day spent in the hospital? Worth being exposed to the Petrie dish that is the hospital, when your immune system is not exactly in great shape? Worth being jabbed with a needle weekly as I'm not a candidate for PICC or port?

So far, for me, the answer is yes.

I wont say it's not an exhausting day. And there is the pre-prep the day before and the morning of. Tuesday is spent making sure I try and rest up and am anal about my diet so to manage my gastric issues as best as possible for the next day. Wednesday is all about trying to get myself together in the morning, when morning is always my worst time of the day. Organising transport to and from the hospital; taxis are hit and miss where I live in the boonies outside Melbourne. Though this week the taxi driver was not only on time, but also opened the door for me, helped me with my bags, and was an all round friendly guy. Which is always nice. Though nearly $13 for a 5min trip still makes me gasp. These are all factors to be considered as they take a substantial amount of energy. I usually leave home around 10:30 and get home around 5pm. So it all makes for a really long day.

(Me and all my friends in the waiting room.)

(Either it's a quiet day in the DPU, or my BO's gotten really bad.)

(Today's infusion ensemble includes violet compression stockings and new boots.)

Today I encountered what will no doubt be an ongoing issue. The fun game of find-the-vein. After searching around I am back with old faithful in the crook of my right arm. It seems all the others have fled. Sadly, old faithful is getting a bit sore as he's also the one that tends to be used for my monthly bloods. But the lovely nurse managed to get that little sucker in there and I am juiced up once more.

(Old faithful was a tad sore by the end.)

My bp has been swinging a bit the last two infusions, although the width of the swing is far smaller than normal. First time there was little swing and a pleasant 120/69 hr 65 for most of the infusion. Now I am doing the old 115/79 hr 69 to 97/56 hr 65 to 138/90, hr 68. Much smaller swings than I am used to where it can normally be anything from 70/50 to 165/115 minute to minute. I'm pretty stoked with my pulse pressures which mean that even at 97/56 I still feel pretty great. Though the staff keep asking if I am dizzy. It's strange to see them get worried as it's so much a normal part of life. But it does mean I get to raise a bit more awareness as I explain the joys of Dysautonomia. My hr has remained decent so I'm pretty happy and I've had minimal bradycardia during the intervening days between infusions.

I've been doing physio and OT the two days immediately post infusion to capitalise on any feelings of wellness I have thanks to a more stable bp and hr. Last week was a bit of a shamozzel as in my brain fog I booked OT and physio on the same day, with OT at 9am. Sometimes my own stupidity amazes me. Needless to say the OT and physio took pity on my patheticness. Plans to watch me cook and garden were shelved for the day in favour of sitting down upper limb exercises to hopefully improve my arms of patheticness and discussions on pacing, appropriate mobility aides and of course the look of “what the?” when I mentioned I didn't have a disabled parking permit. I have to see my GP at the one month mark for review so I'll add that to my list of things to discuss. It would definitely make Mr Grumpy happy if I did get one as I'm always getting lectures on my stubbornness about the issue. Tomorrow at the reasonable hour of 1:30pm I will be making hotcross buns under the watchful eye of my lovely OT whilst she points out all the ways I make it hard on myself thanks to stubbornness. 

Physio was the eye opener. Deep down you know how much you've declined but you delude yourself that you're not really that bad. Then after assessment you are handed a program which only allows for 2x30sec bursts on the minicycle, with no resistance, and you realise just how bad your physical abilities have become. And the reality is, as much as I want to believe otherwise, she is completely right. By the time I do her program twice a day and the OT upper limb program 3 times a day I am beyond exhausted. I am rocking a program that overall is less than what we used to give my elderly patients back when I was working in rehab. Once more I am confronted with the knowledge that Frank and Beryl my old grey-haired nemeses from my original physio class could still kick my arse, hip replacement and triple-bypass be damned.

And my body is protesting my attempts at improvement at every opportunity. The bone pain and zapping in my left leg have gone up about 80%. I am in pretty constant pain now, even my right wrist feels like it has been broken. All from exercises a new born kitten could do with ease. That's a little confronting when you're not quite 40. Once more it's the good old rock and a hard place. So when I see my OT and PT over the next two days I guess we'll be reviewing things again. At this rate breathing and forcing a fart will be about the only exercise I am capable of.

I am still feeling better overall since I started the regular infusions. The last two days before the next infusion are still rough though. My kids and Mr Grumpy just look at me and shake their heads as stroke face hits and my body goes into cascade failure once more. But those first couple of days post IV are quite golden compared to my norm. As my kids told me last week I actually have colour in my face and more importantly I am less grumpy and can take the piss better. I've also managed to do a couple of things around the house that I've been putting off due to my health. My reading corner is finally done and I am quite stoked. Once more that may not be quite the variables my doctors are interested in, but from a quality of life perspective it's pretty good.

I did note this morning as I sat in the chair waiting for my infusion that stroke face was beginning once more as my left eye and left side of my mouth began to droop. Now over half way through my bag of juice it's beginning to lift and go back to normal. Surely that means something. I do wonder about the connection between my neurological and blood volume issues, especially the difference I feel in the facial paraesthesia after the infusion. It seems hypoperfusion is a bit more of a pesky problem than I have previously realised.

(Pre (L) and post (R) IV saline. Pre: stroke-face beginning, I always notice my left eye more but my mouth was also starting to drop, was feeling a tad worse for wear. Post: stroke face mostly gone though still looking pretty tired. At least I can open my eyes fully.)

Once more I'll have to say the whole process is made much easier by great and friendly staff at both the Day Surgery Unit and the Community Rehab Program. It makes such a difference when the staff are nice. Having been to other hospitals where I was confronted with nursing staff who were more akin to Nurse Ratched from One Flew Over the Cuckoo's Nest, I really appreciate the staff at my local hospital. As most patients quickly discover bedside manner can make or break an experience, especially when you are really unwell or distressed. There are a few hospitals around town who could take a leaf out of my local DSU and CRPs book.

So there you go, that's how it's all going. Pretty tired right about now. Once I've finished writing this I think I might take a little nanna nap in my recliner whilst the last 200mls drips into my arm.

Cheers

Michelle :)

A little bit of my relax mix that gets me through the 4hrs. One of my favourites from PJ Harvey and Tom Yorke, This mess we're in.

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?

Accessing IV Saline: A lesson in futility.

(IV Tequila is looking good right about now. Source)

Back in January my cardio finally gave the okay for regular IV saline. The idea was that it would give me a burst, and that all going to plan, I would then be able to also start a basic reconditioning program (thanks to my dodgy health and malabsorption issues I have lost a large portion of my muscle mass, I only just scrape into a BMI of 17 these days). It was something of a personal coup. IV saline, although fairly common in the US as an adjunct therapy in various Dysautonomias, is simply not done as a regular treatment here in Australia. Once you reach the fun point of complete bodily meltdown you can generally access it as a treatment in your local Emergency Department (ED). But as a regular preventative treatment, well, it simply rarely happens.

There is a large body of both anecdotal and scientific evidence that it is helpful. Hypovolemia (low blood volume) is extremely common in Dysautonomia, as is chronic dehydration. I currently take medications to both increase my deficient blood volume and stop me peeing out my precious fluids every three seconds. IV saline bypasses the dodgy parts of our bodies that refuse to absorb fluids, to directly access the veins and increase blood volume. For many this means being able to function. It also means being able to exercise and gain back some strength, which in turn helps with blood flow and general health. Bonus.

I am constantly on the threshhold of dehydration. On hot days, of which we have many, no matter how much I drink I remain dehydrated. My body simply refuses to absorb oral fluids and I might as well just pour them straight into the toilet bowl. Case in point: last week on yet another stifling day I drank nearly 5litres of fluids and still my lips peeled and my skin was lax and I could pinch the skin on my hands and it would simply stay up in that position till I rubbed it down. I felt like death. Simply put I was ridiculously dehydrated.

Whilst, the idea of being stuck with a needle on a weekly basis is not high on my list of fun things to do (a port is out due to my high infection risk) I am happy to do it as a trial for 2-3 moths over the worst of Summer. 

The risks of IV saline are minimal. Especially when compared to many of the drugs I have tried over the years whose potential side-effects include fun things such as stroke or hypokalemia (low potassium which can in turn lead to a heart attack). 

All in all it sounds like a good option. I also have the support of both my cardio (who is my primary coordinating specialist) and my GP.

Yet....

Today is the 5th of march, 2 months later, and I still haven't been able to find a way to access IV saline on a regular basis. 

Yesterday, I went back to my GP to be told yet again that she had not found a way for me to access IV saline. This is not due to any lack of diligence on her behalf. She is very supportive and has gained support from the clinic head to try and find a way for me to access this simple treatment. Only one problem, there is no where in my local area that is currently able to give me a litre of saline once a week (travel is difficult for me now and any beneficial effects of the saline would be negated by the impact of travel on my touchy body). 

My local dialysis/infusion centre is filled to overflowing. Of the local GP clinics that have a nurse on site, none have the room available to let me sit for 2-4 hours of infusion. Hospital in the Home, a program designed to keep people out of hospital, requires an admission under an in-patient hospital clinic to be eligible in the first place. Private nursing to come to my home is not financially viable. Admission to my local Private Hospital ED would cost me almost $300 for one litre of fluids. My local Public Hospital ED is a less than user friendly environment, plus the risk of picking up a bug is high. 

My GP continues to search and I am grateful she is on my side. But the fact that it is looking like I have more chance of winning the next Tattslotto jackpot than accessing IV saline, is starting to grate.

I can access expensive and potentially dangerous prescription medications with the swirl of a pen, yet I cannot get a comparatively safe and inexpensive litre of salty water shoved in my arm. The craziness of such a system is not lost on me.

I do know that the last time I had continuous fluids for 5 days in hospital my bp sat at around 120/70 for 5 days and my hr in the 60's. My GI remarked at the time that IV saline worked better than Florinef, my main medication. That five day period is the only time I have had such readings since I became sick back in 2006. I should add that was at the time my gastric system gave up the ghost and I lost 16kgs in 2wks. Those fluids worked like magic against incredible odds.

Having regular saline infusions will not cure me. It will not make me fully functional. It will not get me back to work. I not asking for a a port as I know my immune-system is toast. I am realistic in what it may or may not provide me. My health picture is complex and multi-dimensional. But IV saline has the potential to remove at least a part of the many obstacles my body faces. And lets face it the removal of any potential excess disability should be seen as a positive. 

It is hoped that the single litre of fluids will give me the boost I need to exercise and gain back some strength. But it's potential goes far beyond that one basic rehabilitative goal. It may also allow me to leave my house by myself. To pick up my son from his bus stop. Or even go to my local supermarket and buy a litre of milk. To the bureaucracy and politics that are currently stopping me from accessing IV saline that may not mean much. But for me and my family it would mean the world.

I do everything my specialists require of me. I take my meds, I follow my diet, I exercise when I can, I use all the aides they suggest, I make sure I get out and potter in my garden, or write my blogs, or cook, or paint. I don't wallow in my illness and am in no way non-compliant. All of this keeps me semi-functional, but I am at a plateau, a plateau that is slowly edging backwards. 

As I sat in my GP's office discussing the issue once more I could feel the tears forming. Not because I am sad or depressed but that I am frustrated to the point of tears. That such a simple and cheap request is being denied by obstacle after obstacle. 

I am told to take control of my health, to be informed and to seek out the care I need. I am lucky that my specialists are supportive and work with me. But their hands are as tied as mine. The insanity that I can buy bags of saline and all associated paraphernalia on ebay is not lost on me. The fact that if I was wealthy I could access this simple option with ease is not lost on me either. I don't know where else to turn, and I am at the point where I must consider that IV saline is simply not a viable option, just like Ocretrotide or IVIG before it.

It is not the physical aspects of my illness that are necessarily the hardest to bare. It is the constant battle to access and naviagte often basic health care. A battle that continually stretches my already over-stretched physical and emotional reserves to breaking point. It's hard to not become cynical and jaded in dealing with a medical system not designed for chronic and complex conditions. Part of me thinks that the system relies on people like myself and others in my position, ending up too tired to keep banging on about pursing such options. Lets face it the medical bureaucracy is a machine that just keeps ticking. It can wait me out. It'll keep on ticking long after I've collapsed from exhaustion and given up the fight. Part of me also knows that there are good doctors and other health professionals who want to help me, but simply can't. I know that must be frustrating for them too. To know there is a care option that may help their patient and yet they simply can't facilitate access to that treatment. And part of me is just completely over playing the roll of Sisyphus pushing my boulder up the bureaucratic mountain. I really don't want to play this poxy game any more.

I wont let this break me. But I may need a few more rolls of duct tape, a hot glue gun and a great deal of MacGyvering to keep holding my dodgy pieces together. 

Michelle

Highway to Hell by AC/DC just seems so appropriate right now.