Wednesday, May 18, 2016

Bone density and avoiding Osteoporosis / Osteopenia in severe M.E / CFS


If you have severe M.E or any type of long term illness it's worth thinking about bone density.

My experience

A friend with severe M.E was diagnosed with severe Osteoporosis at the age of 21, I was 25 at the time and immediately asked if I could be tested. My consultant told me to expect it to show Osteoporosis and my GP referred me for a DEXA scan. It showed I was at high risk of fractures, especially hip ones. With treatment a follow up scan showed my bone density had improved, I am sure if it hadn't been for my friends diagnosis my bone density would still be getting worse. I posted on Facebook and several other people went to get tested.

Risk factors

Risk factors include poor diet, low weight, low vitamin D, long term steroids and not weight bearing. At various points over the years I've met all those criteria and yet no doctor had ever raised the possibility of bone loss.

Testing

Aside the traveling aspect the actual test is fine. They can either do a DEXA scan or an X-ray of your heel bone although I'm told the results aren't as accurate of the heel bone as the DEXA. For the first part I had my hip scanned, I laid on my back and they strapped my foot turned inwards to give the best position of my hip for the scan. As my feet naturally turn inwards these days this was pain free and the scan didn't take long. Next they put a block under my knees so my spine would be flatter, again as I lay with my legs up normally this was fairly comfortable. The arm moved up and down my spine and took about 10 minutes. It's not noisy or claustrophobic at all and doesn't touch you. You don't need to get undressed or changed into a gown for the scan.

I also had bone profile blood tests done and vitamin D

A picture of a DEXA scan

Treatment

I was started on massive doses of Vitamin D and also calcium (both prescribed) and given a physio plan. Although standing and walking is clearly best I was given tiny exercises to do through out the day like pushing my knee into the bed or foot against the footboard, anything to add a little resistance through my bones. We also discussed starting on the pill as Oestrogen can help but I decided against this. There are also drugs (Including oral or IV) for Osteoporosis but we decided to wait and rescan with just vit d/calcium/physio.

I rang The National Osteoporosis Society helpline and spoke to a nurse who was very helpful and sent me some information in the post. I obviously knew the old advice to drink milk (although I know some disagree with that) but they told me about things like research that eating prunes can help and about the different drug options. Their site is full of information www?not.org.uk

I would add that you don't need to have osteoporosis/osteopenia or scans to start treatment. Prevention is really important and if I could go back in time I would work on this from day 1 of becoming severe. I asked my physio of what kind of duration of being bed bound would bone density start becoming a problem, she said the honest answer is she doesn't know, even as professionals it's not something they tend to think about in young people.

For more help on preventing or treating bone density problems see here

Saturday, March 26, 2016

Letter about Burrswood hospital closing


Below is the letter I received about Burrswood hospital closing, as the letter means it's now public I thought I would share. Click on the image and then use the zoom button to read it clearly.


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Such a shame it's closing its hospital wing as there is no where else like it.

Monday, March 21, 2016

Thank you to Burrswood staff



Normally when I leave I do a short note saying a quick 'thank you for everything' but this time I wanted to write a longer one.

Thank you to...

For those who understand light and noise sensitivity is a symptom not a life style choice and who are so mindful of it when in my room. For leaving us during rest times and waiting until better times of day, a simple thing that makes such a difference and something you wouldn't get elsewhere. For 'getting' how we fluctuate and how we can do something fine one day and be unable to on another. For not judging us all by a diagnosis even if we share the diagnosis with, shall we say, 'interesting characters' (although I've known plenty of 'interesting' cancer or transplant patients and aren't used to judge others with the condition which so sadly happens in most other places to those with M.E).

When I had a big relapse here it was a huge shock as I had believed I wouldn't end up paralysed again. I had the best nurse, carer and doctor on that day and in Chapel House during some of the following weeks. It was a horrible time for both myself and my family but it was made easier for them knowing I was being so well looked after. If I had searched the world for a better team I couldn't of found one.

My stays at Burrswood haven't always been easy, by chance I was here when both my Grandmothers passed away, as well as the death of a very close friend after the hospital she was in refused to believe in M.E. Burrswood staff were so kind to me during the difficult times and Chaplin Sue even held a little service in the grounds for my friend.

There have been so many times staff have gone above and beyond or put the care in caring. The porter who unknown to me stayed after his shift so I could stay outside a bit longer, the staff who gave up breaks or stayed late to rescue my hair (not forgetting the beach find that resembled it), the cupcake brought in from home, painting my nails, attempted teaching of different languages (I still can't pronounce 'raincoat' in Polish but I can express 'bad hair day' should I ever be in South Africa), pictures of grandchildren or ice challenge videos, funny stories of pets and kids. Taking the extra time to select softer sheets that don't hurt my skin or the luxury of a hydro towel for every day use. For the endless wheaty heating and pillow arranging, these little things can make the biggest different to pain and comfort levels. These are some of the small things, other big things have formed special memories. 

A picnic at the pond where the dragonflies were coming right up close and hovering just in front of us. A crazy wheelchair trip to the spring where I saw sunlight filter through trees for the first time in years.  The night I couldn't sleep and was taken out onto the patio at 1am to look at the stars, it was so clear that night you could see thousands of them, the air was so cool and crisp and grounds completely silent. Not forgetting too the days when a frequent visitor was allowed to bring in her hamster and it would run around the bed making us all laugh

I've met some amazing people at Burrswood, meeting 2 people who would become some of my closest friends and some inspiring old people who are no longer here but leave an impact on you. Being allowed dinner in my room with another patient who was an old friend I hadn't seen for 10 years was very special and making new life long friends. Where else do you make a friend at Midnight in a corridor while seeking a wifi signal?! 

Some of the staff mentioned in this are no longer here or rules were changed so these things can no longer happen but I wanted to say thank you for them. Thank you to every single member of staff who has gone that extra mile, to those who supported during the bad times and genuinely celebrated the breakthroughs and good times.

Thank you 

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.





Saturday, January 9, 2016

Fitness bands for chronic illness and sleep conditions

Fitness tracking bands seem to be all the rage these days, are you doing the recommended 10,000 steps, have you measured your heart beat when jogging or logged every calorie consumed? I recently hopped on the bang wagon but for reasons other than 'getting fit'.

Aside the fitness tracking aspects they can also be helpful monitoring symptoms of chronic health problems. It took me a while to select a band, I couldn't decide between the Fitbit HR which gives constant heart rate readings thus being good for monitoring my POTS or the Jawbone Up3 which is good at monitoring sleep. In the end I went for the Jawbone.

The Jawbone offers quite a few features which I don't use, although I do find it interesting to see how many 'steps' I've taken. According to the app I've taken 100 today yet I've not actually taken a single one! It takes regular pulse readings which are often quite out from what my pulse really is, this isn't helped by me wearing it too loosely but even so it would be better if it was more accurate. 2 features which I haven't tried yet but will are the 'idle alarm' which you can set to go off if you have been still too long and a smart alarm that wakes you during a light phase of sleep. It works by gently vibrating on your wrist. The idle alarm is meant to encourage you to get up and exercise but seeing as I'm meant to change position every half an hour or so then I think it could be useful for that. I'm going to try the smart alarm to see if I wake up any less groggy.

As for sleep tracking, I've found it helpful. It's taken me a while to get used to it and some days it still only captures part of my sleep but here is one 24 hour sleep period analysis.
Photobucket Pictures, Images and Photos

It says I slept for a total of 10 hours and 30 minutes, of which 33 minutes was deep sleep, 4 hours 15 minutes was REM (no wonders I had vivid dreams!) and I woke up 6 times resulting in being awake for 1 hour 35 minutes.

I'm not sure of the benefit of all this information for healthy people but it's enabling me to see what sleep medications have what effect. I've learnt from this that the best combination for a good mixture of light sleep, deep sleep and REM is 40mg Amitriptyline (I've had to drop down to 40mg from 125mg after suddenly becoming sensitive to it), 11.25mg Zopiclone and 2mg slow release melatonin. On the night the above was recorded I had 40mg Amitriptyline and 7.5mg Zopiclone. A friend is experimenting with supplements that aid sleep and is finding the Jawbone helpful, especially when a supplement increased his REM but decreased his already tiny amount of deep sleep. 

I'm disappointed that where it hasn't always recorded day time sleeping I've not managed to catch any of my odd sleep problems on it (paralysis, hallucinations, drifting in and out of awareness etc) but I'm hopeful it will capture that soon. 

As for comfort for wearing, it's not too bad and I'm adjusting (my skin is very sensitive to touch). I wear it looser than your meant to and I don't wear it during waking hours although I'm slowly increasing the time I do wear it.

I paid £80 for mine from Amazon on Black Friday but there seem to be lots on offer. The Jawbone Up3 is the one that tracks sleep best from the Jawbone range.

Photobucket Pictures, Images and Photos

Saturday, December 19, 2015

The stockings were hung...

My stockings are up on my beautiful new stocking hanger from my friend Karen

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Tuesday, December 15, 2015

Donating toys and gifts to children in hospital

This was written by someone I know who is a doctor. I run a charity for seriously ill children and can grant most wishes for young cute kids with cancer and provide 10 different holidays but it's much harder for other conditions!


Last year I worked in a children's hospital at Christmas time, and there were so many presents donated, mostly from corporate donors. The entire large meeting room was taken over with gifts to sort. There were hundreds too many presents, so some were leftover for birthdays and other occasions. We still had boxes full of Lego packs in June. 
This Christmas I'm working in child and adolescent mental health, still in a hospital ward. We have had no presents donated and I don't imagine we're going to. Our patients will have one present each, chosen by the therapy team, paid for out of the ward's budget - scrimped and saved from the budget that is meant to cover food, activities, and other expenses. 
If your company, or RAG society, or someone you know is thinking of donating gifts to the poorly children in hospital this Christmas, ask them to donate them to the poorly children in the mental health hospitals instead. They're not as cute and photogenic and good for corporate image, but they're less likely than a sick kid in a medical hospital to have loving family showering them with gifts. Any gifts to child and adolescent mental health services (CAMHS) would be appreciated, both by the young people, and by the staff trying to stretch the budgets to give the patients a nice time. 
It would be lovely if the world could start to address the stigma of mental health, and the disparity of only caring about children with physical problems rather than also those with mental problems.
EDIT: This is the link to the list of CAMHS wards in alphabetical order. They aren't all NHS, but even the private ones will have lots of NHS patients because of CAMHS underfunding and bed crisis. http://www.rcpsych.ac.uk/workinpsychiatry/qualityimprovement/ccqiprojects/childandadolescent/inpatientcamhsqnic/membersdirectory.aspx?theme=mobile
This link shows you CAMHS units on a map, by region, but doesn't seem to work from a mobile http://www.rcpsych.ac.uk/workinpsychiatry/qualityimprovement/ccqiprojects/childandadolescent/inpatientcamhsqnic/mappingofcamhsunits.aspx
Good generic presents include things for an older child or teenager: arts and crafts things, colouring books, cookery things (my patients love cooking and baking!), remote control cars and helicopters, nail varnish, age-appropriate DVDs, nice smellies. Nothing sharp or that could easily break. 
Corporate or larger gifts for a CAMHS ward would include games consoles, sports equipment, cooking equipment (smoothie maker?!), a TV or radio - but best to consult with the ward you're donating to.
Cards would also go down well, even if it just says eg "to young people and staff at [hospital], seasons greetings"

Sent from my iPhone