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.