* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Saturday, July 7, 2012

Speed, setting and frequency does matter – update on saline IV’s

2014 Update:  I became unable to tolerate saline, either by picc line, cannula or port - I'm pretty sure I developed a mast cell allergy to the plastic in the bag/ giving set.  I get a massive headache and symptoms of mast cell degranulation when trying to have more than one saline infusion a month.   So no more saline for me...a real shame because it still gave me the other improvements.  

If you are prone to developing intolerances, watch out for any worsening in symptoms .

*****

It’s been about nine months since my first saline IV and I’ve learnt a few things along the way. Fun things, like Mum's reaction to blood.  And three very important things, that I need to maximise the benefit from saline IVs.  

 Speed – 1 litre over 1hour.  In other words, gravity fed with the inline valve wide open.  Slow IV’s do not have the same effects.

 Setting/environment – a quiet dark room. It's very important to minimise noise, light and movement as they all trigger a worsening of symptoms which reduces the efficacy of the saline treatment.     

 Frequency – daily.  I now have one litre of IV every morning and experience some relief every day.  As soon as I miss one, I get worse. 

(for information on how and why I started on saline you can learn more here Me, Myself and Saline and here The Nitty Gritty On Saline IV's and POTS)

It was a long process of trial and error to learn what my body needs in terms of saline.  I don't know why or how these things do or don't work, all I can do is share my experience and hope it helps someone else. 

I've broken it up into subheadings to try and make it easier to read. 

1. Subcutaneous saline infusions - didn't help.
2. Frequency - A longer term solution  – Port a cath installation
3. Speed matters - A slow  IV didn’t work.
4.  Links - Medscape article.


1. Subcutaneous saline infusions - didn’t help.

After getting 3x 1L IV’s a week for months my veins were getting pretty scarred and scratchy so I started looking for other ways to get saline in. I started with subcutaneous saline infusions.  This is where the saline is inserted under the skin into your fat layer, making a “saline baby”, and from there slowly absorbed away into the bloodstream via capillaries.   

It took a while, and there were a few tricks to getting the subcut going right. But even once I had got the saline going in 500mls a day or more, it still didn’t have the same positive effects as the IV’s.  In fact for the whole two months we tried this I kept up with the IV’s.

So for me, subcutaneous saline didn’t work to alleviate any symptoms,  and I’ve since spoken to other severe ME patients who have also had the same reaction.

2. Frequency - A longer term solution  – Port a cath installation

I was so frustrated that the subcut saline didn’t work.  I’d really hoped that this would be a good long term solution around the vein damage. I was scared my veins would collapse and I’d have to stop getting the IV’s.

Just as that started to happen (one vein did collapse) the cardiologist and endocrinologist  at our local hospital agreed to insert a port a cath into my chest.

A port a cath
 is basically a little pincushion installed just under the skin in your chest with a line straight to a blood vessel.   

Port a cath: (the actual drum is about the size of a 10 cent piece). 



Now I can administer saline myself and I only see a nurse once a week, who comes to my home, to change the needle into the port a cath.

Every morning I wake up feeling a bit Dracula-ish, nauseous, headachey, brain foggy and ropey.  Then Mum comes in, sets up the saline IV, wipes the end of the port with an alcho- wipe, does a quick 10ml flush with a syringe and then connects the IV.  Twenty minutes later and I start to feel human again.  How human I get, depends on how bad I was to start with, but it’s always a little better.  

So I know that frequency matters for me, it helps every morning.  For some reason it seems to help more in the morning than in the afternoon.

Being treated at home in my own bed is so much better than going to the doctors.  By removing the sensory strain of travel and upping the IV frequency I've experienced small improvements.  I’ve been able to do more things for myself.  Like listen to music have short conversations and sit up a little.  I’m now sitting up for 30 minutes a day in bed, most days.  I still have backward slides and crashes but overall the trend seems to be going slowly upwards.  (incredibly slowly).

Another positive, that Mum loves, about the port a cath, is that there is no blood.


3. Speed Matters – A slow IV didn’t help.

Last week I unwittingly tested the ‘speed matters’ theory.  When the nurse changed the Port’s needle, it went in at a bit of a funny angle, into the side of the drum and must have been a little obstructed because the saline ran very slowly.  Four and a half hours later I finally got all the saline in, but didn’t experience the usual positive effect from it.  

One litre in one hour, gravity fed, seems to give the best result.  


4. Link to Medscape article:

After agreeing to administer saline for me, one of my doctors went and did her own research and found a medscape article referencing saline therapy.  It mentions one of Dr Bell’s patients,  a woman who experienced measurable improvements after being given daily saline IV’s for 417 days.

You have to sign into the Medscape site to read this, but it is available as a consumer, you don’t have to be a doctor to access it or pay anything. 

An extract:  (Found in the article under the heading Treatment, and subheading, Medications for Orthostatic Intolerance)

"A case report in the literature cites improved performance during graded exercise testing in a woman with CFS after daily treatment with 1L of 0.9% saline via a central venous line over a period of 417 days. Improvement in a variety of cardiopulmonary measures as well as subjective report by the study participant of improved activity tolerance, reduced muscle fatigue and pain, and improved orthostatic tolerance were cited."


In my opinion, why and how saline IV’s work isn’t important but what does matter is how saline IV’s are administered.   

Speed, Setting and Frequency.