Monday, February 22, 2016

IV saline for POTS and severe M.E

~The background of this blog should be plain white but some phones are making it hard to read. I will try to fix it asap~

Lots of people have been asking me about my experience of receiving IV saline for severe ME/CFS and POTS (Postural Orthostatic Tachycardia Syndrome).


History

I've had ME for 19 years and severe ME for 13, as part of it I also have a diagnosis of POTS. I was unable to sit up or be propped up in bed at all for 5 years and although now able to sit up it makes all symptoms worse, I lay with my legs higher than the rest of me. I used to black out when ever my legs weren't the highest point. Unable to walk at all and struggle standing up, partly due to ME but the OI (Orthostatic intolerance) side plays a big part in it.

Resting heart rate for many years never dipped below 130 but for some reason a few years ago did lower however my heart rate never dipped below 100. Upon sitting or standing it increases dramatically.

I've tried various medications and life style changes over the years, including drinking a lot (7 litres a day), eating salt, fludrocortisone and taking salt tablets.

Someone told me about IV saline for my symptoms (I didn't have a POTS diagnosis back then) 13 years ago but I didn't have any medical support let alone someone willing to give me saline. As an alternative a few years ago a Dr put me on Fludrocortisone and slow sodium tablets which did make me less breathless when moving and reduced the palpitations (I couldn't talk or drink after moving due to them). My resting heart rate was about 10bpm slower when on the combination of Fludro and slow sodium.

Getting IV saline in the UK,

Skipping the past 13 years until this year. I found various pieces of information online, printed it out and gave it to my doctors. Please email me on vikki_louise_george@hotmail.com if you would like a copy.

My ME Dr (Dr P) wasn't against the idea of IV saline but had no way of giving it to me on a regular basis via a cannula due to being housebound. I did look into private home nursing but this wasn't a service any of the agency's offered. Meaning the only option would be a central line and the risks of a line is what stopped anyone offering saline, to quote "no one would put a line in an ME patient". 

To cut a very long story short my new GP was willing to refer me for a PICC line if Dr P would start treatment. I was having a 3 week inpatient stay at the hospital I go to for respite and hoped to do a 3 week trial. Most of the 3 weeks were taken up by arguments as to why just drinking more wouldn't do the same thing, they also did twice daily OBs laying, sitting and attempted to get standing OBs. On the last 2 days I finally had a trial of 1 litre saline over about 8 hours, they didn't show much benefit numbers wise but did prove my body could tolerate it without problems. It was felt only a longer trial would really show if it was going to work or not.

Back home my GP wrote to my local hospital who felt the Surrey M.E specialist should organise it but that didn't happen. In the end I found The Imaging Clinic which is in Guildford (only 20mins away from me). I discussed everything with Dr Lopez there and he agreed to put a line in if my GP referred me. It was private and I will post the costs later.

After the line went in there was a 6 week of my GP saying Dr P could prescribe it, Dr P saying he can't as an out patient and my GP needs to do it and despite their best efforts they kept missing each other's calls. There was also a message left for the Surrey M.E specialist (Dr B) but he didn't get it. It was stressful and there was even talk of having my line removed but in the end I got hold of Dr B, although I am an NHS patient of his he was able to send me a private prescription for the saline.

The next issue was no where could dispense the prescription, for the sake of keeping this short I won't go into it but a small independent pharmacy was able to get it in the saline and I ordered the supplies I needed (things like giving sets) online.

I think part of the reason Dr P was willing to start it was because we have tried lots of alternatives and I'm still stuck in bed with a poor quality of life. He did say to another doctor at the hospital after 13 years of being in bed what do we have to lose by trying. The other Dr did finally come around to the idea after long discussions with Dr P and after I was rather blunt. I pointed out I'm only a few years away from having spent more of my life in bed than I ever did out and that I'm now 30 and want children one day. No standard ME or POTS treatment has worked for me.

None of the Drs were against saline per sae but it all came back to the risks of a central line and no one wanted to take the risk. This wasn't helped by the lack understanding why it works (even the top severe M.E specialist isn't sure why it works just that it does).  Which brings me onto...

IV Access

The biggest barrier was home IV access. It's a popular treatment in America with patients traveling to local clinics where a nurse hooks up a bag of saline. In the UK there is a rising trend for non medical 'clinics' to offer saline to people with headaches, hangovers or for beauty reasons, often costing £200-£300 a time. I have no idea if they would be willing to treat someone with a serious health problem.

You CAN have IV saline for ME in Surrey under Dr Bansal on a private wing of the hospital but apparently it costs around £200 a time! Even if I had the money I couldn't have it as I am housebound and need it daily.

The only option left was a central line which is not something to rush into lightly. In short, lines can kill and sadly I have known children who passed away from line infections or became very ill from clots. As with everything in life it was a case of weighing up risks vs cons and I now have a line. I was expecting to have a PICC line but the Dr who did it felt a Groshong in my chest is the best option with the possibility of changing to a port if I'm going to be on this for years. As stated above I had this done privately. Make sure you understand the risks, especially of Sepsis before considering this route. 

My line just after it went in (I've since had the 'wings' removed)



As I said before it's a popular treatment in America, especially with teenage girls who go to a clinic once a week and are given 1-2litres over a few hours.

Someone told me Bupa run a home fluid/TPN (IV nutrition) service where they come in and hook you up and that the NHS can pay for this, whether they would for POTS/ME is probably another matter.

My family and I do the infusions ourselves, it doesn't take long to hook up but you just have to be very careful to use aseptic technique to reduce the risk of infection. I need some help as 1L bags are too heavy for me to lift up. We don't use a pump and simply use a coat hanger to hang the bag up. I can control the speed using the roller clamp on the giving set.

Dr B said to aim for 2 hours but I tend to slow it down a bit and have it over 2-4 hours although it can be longer if my line is running slow or I've kinked it and not realised.

After 2 hospital admissions I came under the district nurses who I could call if I have a problem with the line but they don't administer IV fluids in the community. I was discharged from them though and left with no support or backup. 8 months on from having the line in, Dr B has requested the NHS support me and provide me with supplies but this has turned into a big palaver which is no closer to being solved.

The most time consuming part is dressing change (done completely sterile), new bionector and flush which we do once a week unless there is a problem and we do it more often. The Dr who put the line in said it didn't need a dressing on but within 12 hours of removing it I developed an infection, everyone else I've seen says to keep it sterile and covered at all times. I've also 6 weeks of blood pouring from my chest if I moved my arms too much (best guess was internal over granulation and the Echo scan I had moved the line a bit), again I had no medical support and had to deal with this myself.

Be aware if you are going down this route then you are likely on your own with it. Do your research and see if you feel you can confidently manage it. If you rely on carers coming in to give you other medications it's unlikely they would be allowed to touch your line.

Costs

The line surgery was just over £2000, prescription and supplies come to about £10 a day. I get dressing packs and Chloraprep from my GP and so far have got by with flushes 'borrowed' from online friends as this would add to the costs.

Side Effects

I don't have any side effects, I have healthy kidneys and heart (even if it does do weird things) so I'm not at risk of being flooded like elderly people often are if they are given it too quickly. I do slow it down a bit if I'm having palpitations or headaches after starting.

For me the main risk isn't from the saline but from the central line.

Downsides

I will start with the negatives before moving onto the benefits.

The main downside is yet again the line (within a week of using it I had to go to A&E with a site infection and was readmitted 2 days later to MAU as they thought I had a life threatening infection (my blood cultures had in fact been contaminated)).

It's been very stressful, not the actual treatment but with no one to turn to when we have a problem and trying to access things I need to do it safely.

The other big downside is the effects don't last, I would measure the benefits in hours. When I went back to my usual hospital it was decided I couldn't use my line, in less than 24 hours I was back to being unable to sit up, being on the verge of blacking out as soon as I did, couldn't feed myself laying down as I was too weak and exhausted etc. After a week I was allowed to use my line and within 2 hours I was sitting up in bed chatting away casually and feeling a hundred times better.

Another downside is being hooked up and the care that goes into looking after the line safely. I find this a small price to pay for the benefits though.

Benefits

Benefits in numbers is shown in this picture,


I wasn't feeling good and took this picture sitting up for a minute, my HR carried on climbing after the picture was taken. The other reading was again sitting up (the drop in sats is unrelated) but after a bag of saline. I don't have a BP monitor but could feel my BP hadn't dropped despite the lower heart rate in the second one.

When I tried the saline in hospital over an 8 hour period I didn't have much benefit. The day I had the line put it I was given IV antibiotics in 500ml of saline through a cannula and 1000ml saline through the central line. The difference was amazing and for the first time I didn't ask for my wheelchair to be reclined as my POTS was behaving despite it having been a long day.

No one can believe in the difference in me, from friends and family to doctors, nurses and physio so who have known me for years.

I certainly feel less ill/poisoned, less exhausted and can sit and stand much easier. Now when I stand 4/5 times I have to sit back down due to my muscles rather than due to POTS like before. I don't over heat when sitting up and my temperature control over all is better. I'm sleeping far less (I slept most days away before) and generally feel more 'alive'.

Alternatives

Personally I would only use saline as a last resort (due to line risks) and would try all the usual tips, tricks and medications for dealing with symptoms. I did spend a week on subcut fluids (through a butterfly needle inserted just under the skin) and although I was having the same amount of saline I had it over 24 hours instead of 2. It made no difference to me and although it would of been useful if I was unable to drink it made no difference to my ME/POTS.

I did try 1 litre of Ringers Lactate daily but found it no more helpful than saline. I ha net tried Hartmanns but came across one person who found that helpful. Ive also seen 2 doctors with the theory that adding albumin would make the effects last longer but I haven't tried this (it can cause kidney problems).



Why does it work?
The why is the million dollar question. Dr David Bell hypothesised initially that it was due to the boost in blood volume but when he corrected the hypovolemia (low blood volume) in others ways there wasn't the same level of improvement. Dr P's theory is the effect a sudden increase in blood volume has on the Baroreceptors. To me this makes sense, especially as I have to have the saline quickly in order to feel the benefits. You can read more here and there is a good video explaining it here.


How long will I need it?

How long I will need the fluids for is another big unknown. It's hoped that with physio (that the fluid now allows me to do) my body will learn how to work again and it might 'kick start' my autonomic system into working. I read of one patient who was able to come off it after 8 months but others are on it indefinitely. I have certainly built up muscle since starting (as I've been able to do more physio) but as soon as I stop my symptoms return very rapidly. Less than 24 hours after finishing an infusion I'm desperate to be hooked up again. I feel better after the first 500mls has gone through.

I can't see myself being able to come off it any time soon and I have been warned that just because it's helping now it doesn't mean it will always help.

Conclusion...

My life is so much better for being on the saline, I can't explain how much better I do feel HOWEVER I'm still battling constant symptoms. It's by far a cure, I'm still in bed majority of the time, in a blacked out quiet room. My other symptoms are still relentless and horrid but for the first time I have been given actual hope. I am doing better and compared to my life 6 months ago it's unbelievable. Thumbs up for saline!



I will sign off with a video (I resisted the urge to add the song 'Defying Gravity' over it), I've not managed the same again but hope to very soon.


Check out STARS website for information on POTS and treatment options. They don't advice IV saline and as I said I only had it as a last resort.