Spukey day

Well yesterday was a 'spukey' day - bloated, nauseous - could eat very little as a consequence.
And today looks like it may well be the same - still only 10 days til the op!

Achieved....

Had an early start yesterday, got myself on a roll and achieved a fair amount - tiredness has been creeping up on me though - each day a bit more tired than the previous day - well that's what happens when you are unable to eat enough!
Again yesterday managed to eat a small meal as my total food intake for the day.
One week today I fly up to Glasgow in preparation for my pacer replacement surgery 11 days and counting.....

Tired....

Yesterday was an 'ok' day on the whole other than no appetite and bloating - but a shopping trip did result in extreme tiredness.
Been up since the crack of dawn this morning and so far I'm on a bit of a roll....

Ok day....

Yesterday was an 'ok' day - had no appetite whatsoever but forced myself to eat a small meal which I kept down.
Been shopping today to get bits for trip to Glasgow for the surgery - I had somehow forgotten how your energy levels deplete so quickly when you are not eating sufficient quantities duh!

And yesterday...

Had what I call a 'spukey' day yesterday - nauseous and vomiting - did eat a small meal and slice of toast but both ended up in the toilet - hey ho today is a bright brand new day.....
GastroParesis UK Support group (Gastroparesis 'R' Us): https://www.facebook.com/groups/16102606274/

Bloated...

Managed to eat quite a bit yesterday -  a small meal, half a chocolate bar and a slice of toast!!! The drawback was severe bloating but hey at least I did not throw up!
Has some excellent news today the charity of which I am a founding member achieved full charitable status today.
www.gastroparesisuk.org

Good day....

Yesterday all in all was quite a good day - digestive system was fairly 'settled'.
I managed to eat not only a small meal (in one sitting) but also 4 Rich Tea finger biscuits and half a packet of crisps - a huge quantity for me of late - not exactly a 'healthy' food content but I'm currently working on a plan of "a little of what you fancy"!!!

Not bad....

Seem to have a bit more energy today - hopefully now almost over what I think was a bug.
Yesterday still only managed a small child sized meal over several sittings as my total food intake for the day and my fluids are still not quite back up to their normal quantities - but hey every little helps!

On the mend....

A fair to middling day yesterday - still not 100% recovered from what appears to be a bug - whole digestive system seems to be a little off kilter!
Did manage to eat a small meal over two sittings though yaayy - although my tea consumption has yet to reach it's normal levels!!!!

Another day....

Still having issues with what I still hope is a bug as opposed to the battery having keeled over.
But I have managed to keep the fluid intake up over last 24 hours, and have managed a little soup with a slice of bread - ok not much of a food intake but hey I will settle for what I can keep in there!
Still do not feel hungry at all - roll on 9th April!!!!

I'm back....

Well have had a horrendous few days - initially though the pacer battery had finally gone kaput but looks like it may just have been a bug - had severe vomiting, nausea and diarrhea - the only food that has passed my lips in the past 72 hours is a slice of toast.
Seem to be coming out the other side now and so far today have managed to keep down more fluids.
Good news is I have received my scheduled surgery date for the replacement pacer op - its to be done at Ross Hall Hospital Glasgow on the 9th April 2013.
I will be admitted the day before and hopefully as the replacement surgery is a bit less invasive I will be discharged approximately 48 hours later and start the mammoth journey home a day or two after that.
The surgeon has said it should be a bit less painful and recovery be a bit quicker too - fingers crossed he's right about that!

Keeping busy.....

Well had a very productive weekend - yesterday I decided that keeping busy would keep my mind off my stomach issues and not only achieved ticking a 'big job' off the list but also managed to keep a child sized meal down - admittedly I ate it in 3 seperate sittings but hey whatever works works!
Received the actual written confirmation of pacer replacement funding from the PCT on Saturday so will be calling my specialist today to see what kind of timescale we are looking at for the surgery - also would be nice to know which hospital facility it will be done in!

Made it through another day....

Well did not feel great yesterday no appetite, diabetes a bit wobbly, bloated & nauseous - so to take my mind off it I concentrated on finishing the application to the charity commission to achieve full charity status for GastroParesis UK.
Yaayy application finally submitted after three months mind blowing work!
www.gastroparesisuk.org

Not a good GP day...

Well yesterday was a typical gastroparesis day - managed to eat very little, and when I did I became excessively bloated and nauseous followed by vomiting.
This replacement pacer cannot come soon enough!!!!

It's official....

Well my PCT contact was as good as her word - I have just received a copy of the PCT's authorisation of funding for my replacement pacer - they have emailed it to my specialists secretary to speed things up and have asked for confirmation of costing.
Hopefully will be able to schedule a surgery date soon.

Application Update

I have just spoken to my contact at the PCT - amazingly they have agreed to fund my replacement gastric pacer surgery yaayy!!!
They have done so based on the premise that as my original pacer was awarded NHS funding (albeit on appeal) and that it has worked effectively for me that it would prove cost effective for the NHS to fund the replacement and that they would not be able to leave a patient with a defunct device inserted.
I cannot believe that I was told in clinic on 1st March that I needed a replacement and within 14 days my funding has been approved - this is amazingly fast - I feel like one very lucky woman today!
The letter of approval for my specialist is awaiting typing but should land on his desk within a week - at that point I will be contacting him re the scheduling & location of the surgery. Hopefully it can take place before my current battery expires completely and/or the gastroparesis symptoms return fully fledged.
A great day all round.

Made it through.....

Made it through another day - yesterday the method of choice was just some soup and a ferrero roché for dessert three hours later - other than tea that was my sole intake for the day.
Not surprisingly the diabetes is a little erratic - had minor hypo during the night, just a drop in blood sugar, managed to deal with it myself - unfortunately the outcome was a soaring waking blood sugar.
Hey ho another day another set of challenges!!!!

GastroParesis UK Facebook page http://www.facebook.com/GastroParesisUK
GastroParesis UK website www.gastroparesisuk.org
Twitter @GastroParesisUK

Good day.....

Had a fairly good day yesterday managed to eat a child sized dinner, nothing much else - just psyched myself up to overcome the bloating and nausea and yesterday this cunning plan worked!!!
Have just left a message for my contact at the PCT - I know she's only had the pacer replacement funding application a few days - but just wanted to know 'the procedure' they are planning on following from here - also wanted to make them understand that I would be 'like a dog with a bone' and not just sit back patiently and wait!!!

Had better days....

Well yesterday was not a great GP day - extreme bloating, nausea and vomiting - the full monty - oh what fun a GP'ers life is eh!!!!
To top that off I've woken with a frozen shoulder today - hey ho, onwards and upwards!!!!

Bloated....

Well bloating was an issue yesterday - this seems to be increasing day on day.
It means that when I do feel like eating something - which is becoming less often - I am extremely bloated for several hours afterwards.
Experimentation with quantities and food types has not resulted in a solution.
To be fair the bloating has been a building issue since just before christmas, hence the reason I knew I was due an adjustment, but as you know I was unable to have one at clinic due to the pacer battery being low. Hey ho!

All quiet....

No developments to share today - other than in preparation for the pacer replacement surgery, I have had a spirometry test done today in the hopes of stabilising my chest problems.
Initial findings are that I do not have COPD (a relief!) and that its just straightforward asthma - that said I will be booking an appointment with the doctor to ask for a referal to a specialised chest clinic in order to try and get a viable treatment plan for my asthma asap and get at least a little consistency in the care I am receiving.

Emotional...

Ok its fair to say that in the face of adversity I am normally a positive, upbeat, never give up type of person. But last night I have to admit I fell apart - could not stop crying.
I think that given all the curves I had already been thrown in the past week with other family members health issues, that my final straw was the pacer battery being low and having to face up to what may be a battle with the PCT coupled with probable deterioration in health.
I don't like 'feeling sorry for myself' and crying just gives you a headache and runny nose so nothing positive there then - so with this in mind I have regained my 'grip' and am back to my normal positive bouncy self today!!!
In this respect I am very fortunate this time around as running GastroParesis UK not only channels my mind but most definately helps me keep things in perspective.

Good as her word....

Well my specialists secretary was as good as her word - the funding request letter landed in my inbox late yesterday yaayy!
Today I have sent that to my PCT via email with a covering precis of my gastroparesis history and I have also forewarned my GP and endocrinologist re their possible input regarding funding & possible deterioration in my health if the process all takes a while. So all in all a positive day - now just have to wait - which I have to admit is not one of my strong points!!!! Will give the PCT a call the day after tomorrow just to 'check in'!
Given that a couple of members of my family are seriously ill plus the emotional toll of this pacer saga it is fair to say that I'm a bit stressed at the moment, and as is my norm this is directly affecting my stomach/digestion/GP added to that I already required a pacer adjustment and was unable to have one due to the low battery situation so at present the key phrases are: bloated, bit nauseous, loss of appetite, diabetes/blood sugars unstable, slightly increased vomiting.

Maybe some good news?

Have spoken to my local PCT - the Individual Funding Administrator thinks that possibly as my original pacer had NHS funding approved that the application for a replacement pacer may be deemed straightforward.
She also said if I can get my specialist to email her the funding request letter then she would be able to fast track it and put it before a decision panel almost immediately.
So now its just a matter of actually getting the letter in my hands and getting it to her, and fingers crossed she is right and the panel will rubber stamp the approval - fingers crossed.....

And off we go....

In my normal 'hit a problem head on' style so far today I have contacted my PCT to try and locate a named contact for the funding application - turns out sod's law the woman I need to talk to is on leave today - hey ho - have put that one on tomorrows list.
Have also drafted an email to my various clinicians to warn them that they may need to write me a supporting letter for the PCT sometime soon.
And have had a long chat with my specialists secretary and got her on board in the hopes it speeds things up - she is going to flag the letter for the PCT in the typing pool. I also found out that the op will not be done at Glasgow Royal Infirmary as I had expected, as apparently they do not have funding and therefore don't do any pacer surgery there anymore - this will be a bonus in the long run as it means the surgery will be done in the private hospital Ross Hall - so once I have funding approved surgery should be relatively quick!

PCT here I come....

Ok it may have taken me 48 hours but I've now got my head around the situation and I am ready to come out fighting - so watch out South East Essex PCT here I come ready or not!
On a 'gastroparesis symptoms' note - so far not too bad, the increased bloating is  aggrievating, and is causing some nausea, but vomiting as yet is not too bad.

First day of the journey

So was told yesterday that my pacer needs replacing - the technician and I decided to not alter the settings despite having some return of symptoms - bloating & some minor vomiting - as we want to try and keep the battery alive as long as possible - even with that its only a matter of weeks before it becomes defunct. Feeling a bit downhearted but hey will start the funding fight Monday......
This is me the day before receiving this news, I'm the short one in the centre! - this was the first 'meet-up' of GastroParesis UK in Glasgow on 28th Feb 2013 - it was a chance for fellow sufferers & carers to have a chat with others. As you can see I look really quite healthy!

A little background info....

I have suffered with the debilitating stomach condition gastroparesis (stomach paralysis) for 15 years. For the last 9 years my symptoms have been successfully managed by a gastric pacer - I was one of the first in the UK to get one of these implants and it changed my life.
Yesterday I was told that the pacer battery was low and that I need to have it replaced. This is not as simple as it sounds as I now have to reapply for NHS funding - the last time this took 18 months!!!
My symptoms are likely to return with a vengence so as you can imagine I have viewed this news with some trepidation!
As there have not been many replacement pacer cases in the UK so far, I will be using this blog to chart my progress through the funding process and subsequent surgery process to help others who face this in the future. So keep an eye on developments!