* 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. :(

Monday, March 26, 2012

And she wanted to be a doctor...


Come on nurse, it’s time to go.

I look impatiently at the cannula in my arm, the saline bag is empty and the blood has run up the tube a bit.  I hold the tube up until the blood runs back into my arm.  

Glancing up at Mum, I check to see if she’s okay.  She has been known to turn a funny colour when my blood makes an appearance.

Today she looks fine.

‘Right’ I say, ‘let’s just pull it out ourselves, they are really busy, I’m sure they won’t mind’.
                                                            
We dither a bit, not wanting to do anything wrong by the nurses, but in the end we choose impatience over politeness. 

Not wanting to make a mess, we devise a detailed plan. I will grab the tape and pull it and the cannula out, then Mum will press the gauze on my arm to catch any bleeding, tape it up and put on the compression bandage.  

Easy, we’ve watched the nurses do it many times.

Mum’s lips tighten as I reach for the tape, but otherwise she still looks fine.  She smiles at me reassuringly.

As I pull out the cannula five drops of rose tinted water splash out from the end of the tube.   A little bead of bright red blood glistens from the tiny hole in my arm.

There is a rush of cold air next to me, arms flail in all directions and whoosh, Mum’s gone. 

I fumble awkwardly with two fingers for the gauze. 

Peering over the edge of the bed, I find her, she is huddled in a ball with her hands covering her head protectively.

‘Are you alright?’ I ask. 

Two very round eyes peer up at me.  She looks surprised to be on the floor. 

‘I was meant to do something wasn’t I?’

‘Something other than duck?’


Friday, March 2, 2012

The Nitty Gritty on Saline, IV’s, POTS & ME.

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 .

*****


I spoke about the overall improvements in my health and my experience with saline IV's previously in this post.   Now I hope to give you some background knowledge and the tools to pursue this as a treatment option.  


Most people with M.E. have low blood volume and POTS (postural orthostatic tachycardia syndrome). 

The POTS is what makes it difficult to maintain an upright or even semi upright position.  This is also known as orthostatic intolerance.  If you have POTS then your heartrate jumps more than 30 beats/min when you stand up within 10minutes of standing (for me it happens straight away and it’s always more than a 30beat jump). 

People with POTS also suffer from low cerebral blood flow, especially when standing or sitting but can also be affected while laying down.  This may be due to the overall low blood volume.

By treating the POTS you can ease (and I’m hoping, eliminate?) a lot of the neurological and orthostatic symptoms of M.E.  

While there are lots of different treatments for POTs, I’m going to concentrate on saline therapy because it is what has helped me the most.

Saline IV's are not considered a standard treatment so, we discussed it with many doctors and specialists.  

We ran it past an endocrinologist (well my parents did, because I was too sick to leave the house).  She was very supportive of the saline therapy and, together with my GP, is helping me to sort out a way to get saline treatment at home through subcutaneous saline. 

And I’ve also spoken to a cardiologist who specializes in POTS (via a telehealth appointment). He is happy for me to continue with the saline treatment and has given me a new medication (Ivabradine) to try to as well.

So far so good, I haven't found any reason to not have saline and I know it’s making me better.  

So why isn't it an option for everyone?

I find it very frustrating that this is not standard practice for all patients suffering from severe ME and POTS.    My chest hurts (in a completely non-medical way) when I think about all the people suffering from this disease without this option.

In an effort to be helpful I might have gone a bit overboard.  This post seemed to grow and grow and grow as I wrote it.  I feel terrible that it's so long but I wanted to give as much useful information as possible.

So I’ve split it into sections to make it easier to read.  
                                        
1) The Good Stuff: My Symptoms Eased by Saline
2) How Long Does It Help For?
3) How I Got Saline IV’s
4) Print-outs for your Doctor about Saline, ME and POTS
5) What actually happens when I get an IV.
6) Long term Saline -Subcutaneous Saline Infusions at home.
7) Links


Please keep in mind that this is not medical advice, all medical decisions should be made under the supervision of a doctor. 


 ***

1) The Good Stuff: My Symptoms Eased by Saline:

The differences may seem tiny to the average person, but to me they are huge.  I am still very very fatigued, bedbound and sick especially with the immunological symptoms.  But even though I’m constantly tired, I’m here again and I feel like I’m in the right body.

·      Light and noise sensitivity, from an 8 to a 5. (if I manage to resist looking out the car window on the way home and frying my eyes).

·      Cognitive dysfunction/brain fog:  This is the most notable improvement in my opinion.  I can think again. I’m still limited by severe fatigue but the difference is amazing.  I can read books again whereas before just looking at pictures made me ill.

·      General body malaise: Ropey want to be out of my body feeling.  This has improved from an 8 to 0 but occasionally still a 2 or 3.  This is one of the worst symptoms, if I score high on this one, it’s a bad day.

·       Vertigo: from a bed that thought it was a boat and fake earthquake tremors (thank goodness I don't live in Christchurch) to nothing.  Just with the occasional 1/10 fake tremor.

·      POTS: my POTS is extreme.  My heart rate usually jumps 50-60 beats when I stand up, sometimes into the 200’s.  It’s still a problem, but is a bit better after saline, down by about 10-30 hb/min overall.  

·      Cold feet and calves: I used to have freezing painfully cold feet (even on 30*C days) and the coldness had moved up past my calves and was about mid thigh.  That was a bit scary having legs that were cold to touch (and I was doing occasional leg lifts for circulation). Now I can get away with no socks most of the time and my legs are no longer much colder than the rest of my body. 

·      PENE *:  Post Exertional Neuroimmune Exhaustion, I often think of this as payback symptoms.  My shower payback is notably reduced. I think this has something to the reduction in POTS taking a lot of strain off my body.

“Post-exertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport. The normal activity/rest cycle, which involves performing an activity, becoming fatigued, and taking a rest whereby energy is restored, becomes dysfunctional.”  NB: PENE is a required feature of an M.E diagnosis.

·      Nausea: I experience a lot less nausea now, usually just an hour or so when I wake up or if I overdo it a little, rather than unrelenting constant nausea that could last for days.

·      Acne: my face exploded during my health decline, and is quite a bit better now (despite no change in chocolate consumption). A pleasant bonus.

·      Hair loss:  My hair was falling out all over the place and is now back to normal.

I’d like to point out that I have severe M.E, people with milder ME/POTS may find the improvements more subtle than I did.  

***



2) How Long Does It Help For?

Since blogging, tweeting and facebooking about my saline therapy I’ve noticed that many people have tried it at some stage and given up because the effects don’t last longer than 24-40 hrs. 

That’s why I go three times a week, every week. 


The positive effects for me are definitely accruing and I am making (and celebrating) tiny gains each week.   

The shower PENE payback went from lasting three days, to 1 ½ days, to just ½ a day and the last time I showered I only had a days exhaustion, no really nasty symptomatic payback.  So I am getting better and better each week. 

That said, I still go downhill on the weekends when I have three days between IV’s.  But I seem to drop back less each time.

Many people find saline IV’s a hard treatment to get regularly, with transport/time pressed GP’s and carers limitations all adding up to make it difficult to organise.

***



3) How I Got Saline IV’s

I really wish I could direct you to an official government clinical guideline for treating POTS in people with ME but I’ve not found one.

So here’s the story. 

We ‘discovered’ the positive effects of saline completely by accident.  I was getting Vit C IV’s (which I blogged about here) and noticed my heart rate improving as well as my overall alertness, immediately after the IV.  Sue Jackson, a fellow blogger, kindly pointed out that this immediate effect may be due to the saline boosting my blood volume.

My doctor (and even Large Dad) thought initially that it must be a placebo effect.  Mum and I were really surprised by the instant results of the IV’s and we didn’t think it was a placebo.   I mean placebo effects are something you expect to happen ...right? Eventually we managed to convince the doctor and Large Dad.  

Still getting 'just' saline wasn't simple.
  
The alternative health practitioners that are happy to administer the Vit C IV’s for a small fortune aren’t interested in the positive effects of $5-6 bags of saline. 

Funny that.



And to complicate the picture, the medical practice my usual doctor works at is incredibly busy, bright and crowded, so not ideal for M.E. and a slow IV. 

So we looked for other options and found another doctor willing to administer the IV’s somewhere much quieter where I could lay down and wait.  This was great and I started getting regular saline IV’s once a week. 

Then that doctor changed practices and quite suddenly I was without saline as the remaining doctor at that practice wasn’t willing to continue the treatment. 

He said that he was trying to build up his practice and he didn’t want patients like me, despite charging me $135 for the visit.  

Hmmm. 

I wasn’t worried at first because I hadn’t realised how much I needed the saline.  But then I slowly slid into a scary health decline.

We kept searching, talking to family and friends, looking for a quiet surgery.  Somewhere I could lay down in the waiting room (or even better still go straight through to a bed), a quiet nurses station with room for me and another doctor willing to administer the IV’s. 



By the time we found the doctor who currently administers my saline, I was pretty much living in perpetual brain fog, painful sensory overload and was, at times, very disorientated. 

It was a very low point in my health story, waiting to go in and see this doctor for the first time.  I can remember laying on a couch in the waiting room concentrating on breathing, meditating, soothing myself, because the sensory input around me was very overwhelming.  Just the noise of people around me flicking magazine pages was incredibly loud and painful.

The room was shaking and rocking slightly and the lights were intensely bright.  I had my eye mask, sunglasses and hat firmly jammed over my face.  Perfume and deodorant smells were really strong and chemically.  I was nauseous and every tiny movement made it worse.  I felt ropey, like every nerve was a little jangled and irritated.



Yet, I looked healthy.

It’s very daunting, having a body and brain that doesn’t work and knowing that you have one chance to say and do the right things in order to get the treatment you need.

 

Luckily the doctor could see I was struggling to be coherent and that I was in real physical distress.  It probably helped that Large Dad was there backing me up.

(Always take back up, it makes you look less like a crazy person, especially if like me, you haven’t washed your hair in quite a while.)




Large Dad and I took print outs explaining ME and POTs. The doctor listened patiently and asked what it was I wanted her to do. 

So I told her about the saline. 

‘Okay’ she said, ‘but what else?’

I think it was clear to her that I needed more than just saline and not being used to patients with M.E. she wanted to know about the next step to take.  (err so would I …).

I needed to get across the point that while I didn’t know what other options to try, I was absolutely sure that I needed saline now, as a medium to long term treatment.

So I asked her,

if you gave a healthy person saline every week for a year would it do any harm?

‘No, of course not’ was the answer.

That helped to put things in perspective.  Yes, I was asking for something a little unusual, but also extremely low risk and very accessible.

I started on one litre of saline a week but the effects only lasted 40 hours.  It was brutal having a taste of (relative) wellness and then losing it again, so we upped the frequency to three times a week.  Which is ideal for me.

I’m very lucky to have found such a perfect doctors surgery.   There is a little quiet dark room that is, as far as I can tell, only used by me.    And the nurses are lovely.

Basically it took a lot of perseverance, preparation, support and good luck to get sorted.

***




4) Print-outs for your Doctor about Saline, ME and POTS:

This is the most up to date and comprehensive definition of M.E. Agreed upon by 25 doctors and researchers from 12 different countries and published in 2011, it is based on clear biomedical research.

The section on PENE is especially useful if a doctor suggests exercise to help with the POTS symptoms.  Exercise is helpful for POTS but not at all for severe M.E.

I recommend using a highlighter to mark the relevant parts including references to low cerebral blood flow and low blood volume.



The folk at Vanderbilt University in the USA are studying people with POTS and CFS.  They are using saline IV's to treat the POTS symptoms and recording all sorts of physiological measurements to try and work out why the saline helps. 

One of the theories behind their research is, that the tachycardia and low blood volume are self perpetuating: 

" The investigators have documented abnormalities in volume regulation in POTS patients.  Hypovolemia* can contribute to sympathetic** activation and vice versa, sympathetic activation can contribute to hypovolemia.  Interrupting this vicious circle with acute saline infusion is the most effective treatment to improve symptoms in POTS patients. Not surprisingly many POTS patients followed by the investigators, and CFS patients followed by Dr. David Bell, are using saline pulse therapy as a way to alleviate symptoms"

*hypovolemia is simply low blood volume.
**sympathetic, this is the part of your nervous system that is part of the ‘fight or flight response’, in this context, it tells your heart to beat faster.  


***



5) What actually happens when I get an IV.

 The doctor inserts the IV needle and cannula then removes the needle, leaving in the cannula (just a thin tube). Runs the IV and leaves me with the nurses.

The nurses stick their heads in and check on me every now and again.  One thing they make sure of is that the cannula is situated correctly in the vein and that there is no fluid pooling in the tissue around it.

The effects are obvious very quickly, about halfway through I already feel a lot better.  It is quite dramatic.

It takes one hour for one litre of fluid to go in.

A pressure bandage afterwards helps reduce bruising. We use one arm for one week then swap. 

It can be bulk billed.

Sometimes I feel very alert straight away, other times I feel a bit dozy, sort of sleepy but I never feel that weird M.E. tired and wired after an IV.

***

Tips: for comfort when getting an IV

On the way there, in the car, you can minimize distress by laying down in the back seat (this is what I do, but it may not be the safest option in case of an accident).  Another option is to get your legs up by reclining the front seat fully and sitting on the backseat with your legs on the front seat.  That way you can wear a seat belt, as they are designed to be worn, but this also means your torso is vertical.  

An ambulance would be an ideal solution.  The problem with ambulances is that they like to go to hospitals.

All large medical centres are required to have a wheelchair somewhere on the premises.  If you ring ahead to check, your carer/driver can then go and get it and that way you can minimize walking. 

Also when you ring ahead explain that you need to lay down straight away upon arrival and ask if can you go through to the nurse station to a bed instead of staying in the waiting room.  If there isn't somewhere organised for you to lay down in straight away, then just lay on the floor, this is the quickest way to get help and attention. (as embarrassing as it is *blushes*).

Specify that you require the quietest, darkest place to lay.  This will need to be repeated many times.  Eventually all the staff will know you and get used to your needs.  



Don’t be afraid to ask for the music or TV to be turned off, while you are there.  Most people find it irritating anyway.

Wear a cap (to hide unwashed hair and to shield your eyes) and sunglasses, have an eyemask and earplugs handy. 

If you can stand noise, an audio book, music or guided meditation is good for distractions. Especially with noise cancelling headphones.

The saline is kept at room temperature, but that is still colder than your blood and if the medical centre is air-conditioned it can get very chilly during and IV. 

The room I go to is extremely cold  as it is very small with an air conditioner vent (and this may seem bit over the top) so I wear thermal fleece pants, woolen socks with sockette booties on top, a t-shirt, woolen jumper, fleece jacket and a snowboarding mitt on the IV hand.   All topped with my travel blanket.

Yes I do look ridiculous.

Since I live in a really warm climate, I also wear shorts on under the fleece pants so I don’t cook in the car drive to and from the doctors.

I take a neck cushion as well, in case I get caught without a pillow. 

The point is to be prepared and make it easy as possible for the nurses to look after you.

The nurses may get curious as to why you are there, what's the story with the sensory overloading and why you are getting saline. A couple of extra printouts can come in handy.

Occasional chocolates for the nurses and receptionists will also go a long way to making your visits more comfortable. 

***




6) Long term Saline -Subcutaneous Saline Infusions at home.

The most obvious worry about prolonged saline IV’s is vein collapse.

We looked at three options around vein damage:

a)  PICC line, a catheter line that goes into your arm vein and, almost all the way to your heart.  This is left in semi permanently and means you can do IV’s at home yourself with proper training.

I don’t want a PICC line because it seems like they usually get infected.  It’s just a matter of time and I don’t need that drama for my immune system.

b)   Implantable Port,   This seems like a great long term solution for people needing infusions, blood tests etc.   It is a bit like getting a pincushion installed just under the skin on your chest.

But it requires an operation to install it and I know from experience that even minor operations, anesthetic, me and M.E. do not mix. So a definite no for me.

c)   Subcutaneous infusions,  (a.k.a hypodermoclysis and sometimes referred to as simply clysis) were suggested to us by my Endocrinologist as a long term home saline solution.  They are infusions given slowly just under the skin in the fatty layer above the muscle.

I think this is the solution for me.

Subcutaneous infusions are commonly used in palliative care situations for the very elderly or very sick (err me?).

If you’ve ever had a B12 injection then you’ve already had a subcutaneous* injection.  A subcutaneous infusion is less invasive than that injection. 

(*correction: B12 injections are intramuscular - which is the next layer down after the subcutaneous fat layer).

A butterfly needle is inserted under the skin (often in the squishy part of your stomach skin) and fluid is very slowly dripped in at a rate of about 500ml/12 hrs.  This fluid apparently bulges a bit at the insertion site before it is absorbed away into the blood stream.

I understand that, the needle can stay in for a few days and you just connect/disconnect the saline as required.  So you can still be mobile, go the toilet, have a shower etc.  We will see.

I’m very excited by this option as I think it is a great at home solution.  Not only would it save my carers almost 10 hours a week in transport/doctors time but it would also save me from using precious energy getting to the doctors. 

So we are in the process of getting subcutaneous saline organized.  

My doctor and the nurse from Ozcare are doing a home visit to organise all the paperwork later this week.  It looks like it’s something I can learn how to do myself, from the nurses.  They set up the saline and insert the butterfly needle the first few times and then when I’m comfortable doing it myself I 'get' to do it.  

Luckily I’m pretty good with needles.  (Eek!)

I haven’t been able to find much information online about subcutaneous saline infusions, for people with M.E. or even just for people with  POTS.  Although it seems very common for people in palliative care and also for pets.

So I’m willing to be a guinea pig.  

Watch this space. J

*** 


7) More Links:

Hydration techniques:
A 15min youtube by a Dr Karnell. He talks about hydration for people in a hospice setting. He discusses pros and cons of IV's, oral hydration techniques and then at 9.33 minutes talks about the advantages of Clysis (subcutaneous infusions).  

Dermoclysis - Subcutaneous Hydration for the Remote Medic.  A brief practical description of applications for subcutaneous hydration with a photo.


A great website where a girl describes her experience organising and getting saline IV’s. She has a very comprehensive list of links to research and supporting documents for Saline IV's.

As well as that she has lots and lots of great information about POTS and the immune/neurological side of things. (I'm still getting my head around it but it looks to me like a lot of what she talks about is valid to M.E.)

Sue's blog is a fantastic place to start researching treatment options worth mentioning to your doctor.
If you type ‘saline’ into her search bar, her posts on it will come up as well.  

There are other treaments, as well as saline, to try when tackling the POTS symptoms and a good place to start is this list on the CFIDS site. 

Please bear in mind that this is not medical advice, all medical decisions should be made under the supervision of a doctor. 

************************

It’s been such a long road to this point. I’ve been sick since May/June 2010 and am only just now getting the one treatment that I can definitely say helps.  

And we found it by accident.