6 months/25 weeks post op

Despite other numerous health issues (diabetes, asthma etc) and a huge amount of stress in recent weeks, I have done relatively well in gastroparesis terms.
The stress levels have directly affected my eating and absorption capacities and led to some increased nausea, vomiting and bloating, but I am hopeful as this particularly stressful situation is resolved over the next few weeks that everything will settle down once again - can but keep my fingers crossed!

GastroParesis UK

This blog is no longer linked to GastroParesis UK

20 weeks post op

Here we are 20 weeks post op - and doing very well. Nausea, bloating and vomiting are relatively minimal & more or less manageable, and are usually only an issue when stressed on when my asthma is playing up which causes coughing.
I have been really pushing my physical boundaries this past month, trying to get on top of my GastroParesis UK workload - although enjoyable, it is at times a little detrimental to my health - my diabetes has destabilised a little further this past few weeks, with no apparent reason & I am very tired but unable to sleep for more than a couple of hours at a stretch - I am therefore organising a review blood test for my thyroid as I think that maybe my thyroxine medication may need a little tweek to rectify this particular issue.
All that said I am doing fairly ok and the GPUK schedule over the next couple of months is quite full, with various meet up trips planned - and although this may prove exhausting, I'm really looking forward to just being able to fulfil this role!
For details of all upcoming GPUK events take a look at the website at:
www.gastroparesisuk.org
  

17 weeks post op

Its now 17 weeks 2 days post op - have been doing really well in terms of gastroparesis - even though its been a stressful month my stomach has stayed quite well balanced. However my diabetes has this week been really unstable for no apparent reason - hopefully it will either settle or the reason will become known!
www.gastroparesisuk.org

108 days post op

Here I am 15 weeks post op and doing well.
Since I last posted I have moved home, unpacked and been a birthing partner to my daughter in law - all very stressful & exhausting, but all in all I have survived quite well.
My health has taken a bit of a toll in the past couple of weeks - my asthma is playing up but we think that is due to the pollen count rather than infection, and the past couple of days my stomach has been unsettled and I have felt nauseous - I think however this is due to walking home in high temperatures the other day and may be more down to overheating rather than gastroparesis - we shall just have to wait and see!
www.gastroparesisuk.org

86 days post op

Doing really well, limited nausea, vomiting & bloating. Last week I attended and helped run the GastroParesis UK stand at the British Society of Gastroenterologists 2013 conference, and this week I've been packing up my home ready for a house move this weekend - I'm exhausted but basically up to my version of 'normal' capacity once again!
http://www.facebook.com/GastroParesisUK

Ten weeks post op

Here I am 10 weeks 3 days post op and doing well.
The nausea, bloating & vomiting is minimal & intermittent - and in fairness I believe is more due to recent stress factors. I have some pain when initially digesting food but again this is intermittent & manageable.
Incision is well healed & tidy and I can even wear a bra now!
I'm well enough to be able to participate in next week's British Society of Gastroenterologists conference as a representative of GastroParesis UK.

8 weeks post op.....

8 weeks post op and doing well. Food intake is still not quite up to pre op balanced intake but I am almost 100% sure that is due to stress factors rather than gastroparesis.
Food intake is sufficient to keep me going. Bloating under control, vomiting minimal.
Incision fully healed and soreness around pacer site is now limited - pressure on site/pacer when wearing a bra is still causing some discomfort, but improving day by day.
All in all doing really well!
www.gastroparesisuk.org

6 weeks post op

Here we are 6 weeks 3 days post op and doing well - adjustment has eased bloating a fair bit, nausea has been minimal with no vomiting episodes. My eating has been limited due to stressors brought on by family health issues, but I am still managing to eat in small quantities.
http://www.facebook.com/GastroParesisUK

Day 38 post op....

Its a week since having the settings adjusted and there seems to be an improvement in the bloating & digestion speed - nausea has been minimal. I now just have to retrain my stomach to eat bigger quantities, from previous experience this can take quite some time, as it has to be done gradually.
All in all doing remarkably well!
http://www.facebook.com/GastroParesisUK

Day 32 post op...

All went well at my post op check - had minor adjustment to settings. Next appointment six months. Incision healing nicely. Skin rash is an outbreak of dermatitis which is pretty much the usual case scenario with me when stressed.
Will now update blog on a weekly basis and keep you posted on how things are going with the gastroparesis symptom management.
www.gastroparesisuk.org

Post op check...

Day 31 post op check all went well - surgeon checked: incision is well healed, pacer area checked and is fine and settled. 

Medtronic technician checked settings and after discussion regarding new pacer settings were set slightly lower than old pacer settings + symptoms + aims + battery life expectancy - we actually settled on adjusting setting slightly lower rather than higher - strangely this can have the desired effect! Inpiedence was fine, pulse frequency was 2 on/3 off now 1 on/4 off (may aid bloating) and voltage strength was decreased to 2.6.

Instructions are as standard allow time to assess new setting success if no improvement in few weeks call to make another adjustment appointment and a 6 month appointment to see consultant surgeon.

Was advised I can now ease myself gently back into normal manual duties - just don't go mad!

Day 30 post op...

I am on my way to Glasgow for my post op check it will be my first major trip out on my own, so I'm expecting it to be an exhausting day.

Good news is I'm fully clothed in ordinary clothing, bad news is my bra is already driving me mad and we're only two hours in with a lot of day left to go!!!!

Day 29 post op....

Yesterday went fairly well, no nausea and only limited bloating. Travelling up to Glasgow tomorrow to attend an early morning clinic appointment on Friday for my post op check up and pacer settings check - so a fair bit of stuff to get done today before I go!
GastroParesis UK members only support group:
https://www.facebook.com/groups/16102606274/

One month post op!

Here we are day 28 post op, and all things considered I am doing well.
I had little appetite yesterday but determinedly ate a small meal but became bloated and nauseous straight afterwards and ended up vomiting for the first time since surgery - however as I was 'reaching' and trying to protect my pacer site at the same time, I must have vomited from 'the wrong place' so to speak and ended up bursting blood vessels around my eyes & face - so I look a bit like I've been a few rounds in a boxing ring - hey ho sick once in 28 days is excellent even for me!
http://www.facebook.com/GastroParesisUK

Day 27 post op.....

Just coming up to a month post op and have to say I'm feeling far better than I had anticipated I would. The pacer replacement surgery has been a much easier recovery, for me, than the full pacer surgery, as it is less invasive - It's by no means minimal straightforward surgery but it is easier. I still have some way to go in terms of getting the settings at the optimal levels and readjusting my eating capabilities, but I am sure this will all happen in due course.
http://www.facebook.com/GastroParesisUK

Day 26 post op....

All is well - was just thinking that I really do need to get my act back together on the 'wearing normal clothes' front before jetting up to Glasgow for my post op check up and adjustment - I still find wearing close fitting clothes and a proper bra a tad uncomfortable and aggravating and can only manage this in short bursts - will have to come up with some kind of cunning plan in next couple of days!

Day 25 post op....

All is well other than the allergy rash around the site, caused by a dressing, is still really itchy and driving me mad! Will get them to check it when I am at clinic on Friday.
Had a generally stressful day yesterday, which as always affects my stomach, despite a limited appetite I managed to eat a small meal, but was bloated for about an hour afterwards. Hopefully a minor pacer adjustments will rectify this minimal issues.

Day 24 post op...

Doing well, incision healing nicely, getting more sleep, most of swelling has gone - the raised area around pacer I now think is its final positioning rather than swelling, although it is still quite tender, wearing even a soft bra is still quite uncomfortable so only wear one when absolutely necessary! - bloating has eased a bit and nausea is mild and infrequent.
This time next week I will be at clinic having my post op check and adjustment done.
The GPUK ABC gastroparesis awareness campaign is underway - have a look at:
http://www.facebook.com/GastroParesisUK

Day 23 post op

All looking good with the incision - the crusty bits have all fell away by themselves - looking tidy.
Still tender around the actual pacer and bit tend below the incision above navel but hopefully this will ease off.

Day 22 post op...

All is going fairly well - incision wound is really itchy and the site around the pacer is still quite tender. I am still eating small quantities, but bloating is still an issue and the odd mild bout of nausea - so looking like a minor adjustment will be needed.

Gastroparesis UK online awareness campaign launches today see our facebook page for full details at
http://www.facebook.com/GastroParesisUK

Day 21 post op...

Cannot believe its only been three weeks since surgery seems like ages ago.
I was brave and removed the steri-strips after my bath last night - wimp that I am it made my tummy go 'wibble wobble' doing it!
Here's what it looks like in all its naked glory - the incision is actually the same size as the original one and looks like it will heal up and be tidy.
www.gastroparesisuk.org

Day 20 post op.....

Looks like these steri-strips are ready to come off - think I will ease them off tonight after they get wet in the bath - not looking forward to doing it!!!
Allergy rash still quite itchy but hopefully will clear soon.
Felt bit nauseous for about an hour yesterday - managed to eat a small meal - bloating still quite pronounced. Will chat with Medtronic technician about best way forward with this when I go to clinic on 10th May. I know they put the settings slighty lower than the original pacer settings to see what happened - but I do not want to increase them radically and (a) leave little room for future adjustments or (b) limit the battery life expectancy.
GastroParesis UK members only support group - Gastroparesis 'R' Us:
https://www.facebook.com/groups/16102606274/

Day 19 post op....

Finally managing to sleep on my side for limited periods of time enabling me to get a little more sleep last night.
Allergic reaction to dressing around incision site still itchy - but the steri-strips are finally starting to curl up, another couple of days and I think they will be off!!!
http://www.facebook.com/GastroParesisUK

Day 18 post op....

Did not make the mistake of over eating in one sitting yesterday but was still quite bloated after my small meal - we shall see what happens with this.
Only issue I have is a rash around the incision site, as the nurse at my GP surgery, put on a different type of temporary dressing to the one I had been using, when I had my wound check done, to which I was obviously allergic - I am allergic to various fabric based plasters but not usually dressings - fortunately it was only on for a short period so hopefully will clear soon - the itching is driving me mad!!!
http://www.facebook.com/GastroParesisUK

Day 17 post op....

Well first day without a was a bit uncomfortable if I'm being honest - the area is still quite sensitive and the dressing was obviously acting as a barrier between the incision and my clothing plus the clothing keeps snagging on the steri-strips so assume they will work themselves off sometime in the near future!
Also was quite hungry at dinner time so ate a bit larger meal than usual the consequences being I was quite bloated and for the first time since the surgery I felt mildly nauseous, so will not be doing this again in a hurry - reminding myself not to run before I can walk!!!!

Day 16 post op....

Well had my first trip out on foot, walked to doctors surgery at a snails pace, for my wound check. You really do not realise how much surgery like this takes it out of you until you are challenged by every day actions - the walk has totally worn me out!
Good news is the wound is healing nicely and nurse practitioner has advised me to leave the dressing off and just let the steri strips fall off by themselves - and that I can now officially start bathing (as opposed to showering) again.
I have also been issued with a blood test form for a standard panel, plus check my thyroid levels (I am already treated with thyroxine for hypothyroidism) plus iron and ferratin levels, as I explained that I am still feeling extremely tired - the challenge being getting myself to the phlebotomy clinic on the other side of town to get it done - hey ho another day another challenge!

Day 15 post op....

Ok this may not sound like a breakthrough to most people but today I have managed to put on a soft bra - its a little uncomfortable but two hours in I'm still coping with it - yaayy heading back towards normality (well in the clothing department at least!!!).
Got appointment at doctors surgery tomorrow for a wound check, and to look at whether or not to remove the steri-strips which are holding the surface together. Whole incision area is incredibly itchy now which hopefully is sign of healing and the internal dissolvable stitches doing their job.

Day 14 post op....

Managed to get a little sleep last night which means I've woken up a little more 'on the ball'.
Still only eating limited quantities, and discomfort eases a little each day. Still getting bloated, and appetite is quite small but nausea is not an issue.
Another dressing change today - all looks well - steri strips still stubbornly in place - will let GP make a decision on those in two days time.
Managed to get back on the GastroParesis UK wheel yesterday albeit part time/limited - the team are doing a great job covering the workload in my absence.
http://www.facebook.com/GastroParesisUK

Day 13 post op....

Did not get much sleep, brain was on overload with some current family issues, so have got up more tired than I went to bed!!!
Have also developed a bit of a headache and ear ache since waking but hopefully with the aide of some pain killers this is just a passing germ..... 

Day 12 post op....

Just did dressing change - all looks well - its quite itchy at the moment which I take as a good sign of healing - steri strips are still firmly in place so will leave well alone and let my GP check them and decide whether or not to remove them in four days time. Around implant still appears to be swollen - but this may be how it is positioned in fat pocket and will be the way the new one lies, no way of telling just yet.
Very very tired today - only slept intermittently last night which is probably the reason why!

Day 11 post op...

OK I've had to have a word with myself and have finally reached a point of acceptance:
On day one I felt like the surgery was much less invasive than the original pacer surgery and I anticipated being in a different 'place' by day 11 to that which I actually am.
So my 'light bulb moment' is that although yes it is far less invasive it is still in fact major abdominal surgery and will take a bit longer than thought to fully recover - proof of this is that I keep writing lists of stuff to do tomorrow, getting up, looking at the list and putting most of it on the brought forward list - those that know me, know that this is not my standard approach to life!!!
In reality I think I will have to accept that I will need to ease myself back into the GastroParesis UK work slowly and thankfully as my team members have handled everything so well in my absence delegating for a bit longer is not so difficult.
The main issue I am having is not so much pain or discomfort but overwhelming tiredness and in honesty it is hard to tell whether this is 100% due to the surgery or whether my current intermittent sleep pattern is also partly due to other stress factors currently in my life - we shall see....
Gastroparesis 'R' Us - the GPUK members only support group for sufferers and carers:  
https://www.facebook.com/groups/16102606274/

Day 10 post op...

Doing ok swelling and soreness decreasing - still only got small appetite but that is to be expected after several weeks of limited food intake - it should revert to my version of 'normal' over a period of time. Nausea is no longer an issue - still got some bloating but hard to tell if this is symptomatic or post surgery - we shall see.
Another dressing change - everything looks ok - clean, dry and no obvious infection.

Day 9 post op....

Bit sore again this morning and for some unbeknown reason I am more tired now than I was just after surgery!
As yet I am still too uncomfortable to wear anything with a standard waistband - currently using my son's long shorts and track suit bottoms - as he is 6ft 4" and I am 5ft you can imagine how I look - doubt I will be venturing out in this attire!!! Also very much looking forward to being able to wear a bra again (I am quite short in the body so almost everything lays on or pushes on the surgery site) - last time I think this took several weeks - this time I am aiming at within the next few days!!!!
Diabetes is not too bad considering.

Dressing change day 8

All looks well - clean, dry and holding together!

Day 8 post op....

Yesterday I was quite tired not really sure why as I did not exert myself.
Managed to eat a little and the general bloating symptoms seem to be dissipating and on the whole the soreness and discomfort is easing - although late in the day it became a little more uncomfortable.
I awoke this morning very sore as it would seem that I had inadvertently rolled onto my side onto the pacer site during my sleep - had to give in and take some painkillers.
Other than that and feeling a bit worn out, which I am assuming is due to intermittent sleep I am doing ok.
Due a dressing change today so lets see what's happening there - site has been bit itchy last couple of days which hopefully is a healing 'itch'!!!! Just checked with hospital and they confirmed that the steri-strips holding the surface incision together, should not be removed until they start 'curling up and rolling off by themselves' - I figured that will be in another week or so - don't want to interfere with them too early as due to my diabetes I heal a bit slower than most people. If in doubt I will get my practise nurse to take a look.

Day 7 post op....

Well one week down and doing well - each day brings a little less swelling and soreness.
I was given a new implant handbook and ID card so have filled those out and put them in easy to find places!
My Mum has left today so will now have to fend for myself - although my kids (adults) are on hand if I need help - just got to have a word with myself about being sensible and not over doing it!
Aiming at getting 'back on the GastroParesis UK wheel' towards the end of the week.

Day 6 post op...

Doing well - pain is minimal, bit less sore, swelling seems to have gone down a little bit too.
Managing to eat small quantities - trying not to run before I can walk!
Changed dressing for second time today - wound is clean, dry and secure.
All in all - so far - the replacement surgery has been far less traumatic than the first implant surgery as it was bit less invasive and did not involve deep muscle incision.

Day five post op...

Not doing bad - bending is awkward due to soreness and swelling - most definately cannot sleep on my side which is a tad aggrievating as due to my asthma sleeping on my back is problematic, so have been sleeping in raised position.
Eating bit more than pre op, nausea is not an issue but still bloated. Diabetes not too bad.
Pain is manageable.

Day four post op....

Had good nights rest but still quite tired. Pain is manageable, but very sore and uncomfortable - pacer site is swollen and lots of bruising is now coming out. Changed the dressing as instructed this morning without any problems - incision is bit longer than I imagined but not quite as long as the original. Need to change dressing every 2-3 days and keep covered for about 14 days in total - the stitches are all internal and dissolvable the outside incision is held together with about 8 closely packed steri-strips.

I'm home....

Well the trip home was very long and very tiring but the bonus was that I was able to sleep more comfortably in my own bed.

Homeward bound...

Ready to roll on the mammoth journey home - dreading it as it will take 8-9 hours door to door - but at same time urgently need my own bed and surroundings!
Feel generally sore and uncomfortable - op site is still quite swollen and all the bruising is starting to come out now. Pain is still manageable on basic analgesics. Diabetes not too bad but still unsettled.
I am managing to eat probably a little more than pre op - but I am taking it steady as the bloating is still quite noticeable - this may settle - failing that my clinic appointment is only a month away.
The pacer seems to have kicked in at the same sort of point as the first one did, 48-60 hours post op.

Day two post op

Had good night - back is aching where I am unable to sleep on my side due to discomfort and my bottom is very bored with being sat on!!!
Taking regular little strolls around hotel room to keep circulation going (have taken the surgical stockings off for a while as they were driving me mad).
Had a shower of sorts this morning a bit technical but at least I now feel properly clean!
Pain is manageable - still sore and swollen.

36 hours post op

Was discharged day early - basically due to my stubborn nature!
I was not on any hospital administered meds - pain being managed with standard analgesics - so decided I would be better off relaxing in hotel room without interference.
Had to promise I would take it easy, not lift, shower rather than bath and not travel back home for 48 hours.
Got to attend clinic in six weeks for post op check and adjustment. Technician has put the new pacer on slightly lower settings than I had been on as he felt that possibly with the new stronger powered pacer this may be sufficient.
Basically sore, feel like I've been punched in stomach (did ask surgeon if he had punched me whilst I was under but he promised he had'nt!!!) and some movement/bending/getting upright movements are a bit complicated due to swelling. But pain is limited and manageable.
Pacer is in more or less in same position as original perhaps a centimetre further to the left.

Hour after surgery

Was put in HDU as standard practise - sliding scale dextrose/insulin drip and heart monitor.
Anaesthetist had put in some local anaesthetic around pocket where new pacer had been placed prior to me being sewn back up - so no need for pain meds via drip. Pain level was manageable.
Stayed in HDU 24 hours more from a 'watchful eye on diabetes' point of view than any complications - diabetes a little unstable due to surgery trauma but nothing unexpected.

Ready to go

Ready to go down for the surgery 8am on 9th April 2013 - very calm not apprehensive at all.

Vomiting...

Well the hospital toilet bowl and I have become intimately acquainted as I thought it would be rude not to!!!
The bloating and nausea had me beaten this evening but just 12 hours or so to go now....

The hospital....

Lovely private ensuite hospital room, satellite TV, tea, meds and nurse on tap - who could ask for more if an admission is a necessity - lot to be said in this instance for NHS using private facilities for procedures!

I'm now officially at the hospital

Final day...

Will be leaving soon to be admitted for the replacement pacer surgery tomorrow - going in a day early for the usual pre op work up as I am first on the list in the morning - which is good news as I am not what you could call good at waiting whilst fasting and dying for a cup of tea!
Had a good day yesterday relaxed and quiet rounded off by a lovely evening spent with a couple of my GastroParesis UK team mates - laughter is the best medicine!
Managed to eat a little yesterday without throwing up albeit bloated.
One day to go....

Pre op...

Here's me today - pre op - in fairness looking quite healthy - how the camera lies eh - lets see how I look by Wednesday.....

In Glasgow....

My Mum and I arrived in Glasgow late yesterday - a tiring day but we are here now. Did not eat first food of day until 9.30pm by which point was quite hungry and managed to eat what amounted to a large meal for me - kept it down but was really bloated for hours.
Neither my Mum or I had much sleep - not because of a strange hotel room, but because we both snore - we were taking it in turns to keep each other awake!!!!!
3 days to go to surgery.....

And we're off...

Yesterday was hectic doing all the last minute stuff, packing etc - had to prepare for potentially being out of action for a while - have handed over all GPUK related matters to my team mates so everyone will be in safe hands!
Was bloated and nauseous all day but made myself finally eat a small amount in the evening and managed to keep it down.
Have just left home on the first leg of my journey to Glasgow for my replacement pacer surgery. Stopping off en route to see my daughter and pick up my Mum who will be my hospital partner. It's going to be a long tiring day but hey we are finally on our way yaayy.
4 days to go....
Http:www.facebook.com/GastroParesisUK

On the home stretch....

Managed to eat a bit yesterday - bloating was an issue but managed to keep the food down!
Today is my last day at home before travelling up to Glasgow for the replacement pacer surgery - so the 'to do' list is as long as my arm!!!
5 days to go.....

Nearly there...

Well only managed a miniscule amount of food yesterday - I am forcing myself to eat despite the nausea and bloating in the hopes that keeping some solid food going through my system will mean less post op pain this time as the bowel readjusts to solids - fingers crossed!!!
My list of things to do today is endless lets hope my energy supplies last long enough.
6 days and counting.....

Today it will not beat me....

Ok yesterday was not a great gastroparesis day - nauseous, bloated, vomiting, exhausted - but despite feeling more or less the same today it's not going to be allowed to beat me.....

Gastroparesis rears its head....

Well yesterday was an extremely nauseous day - to be honest it got the better if me - so I gave in and just sat intermittently - 'giving in' is not part of my make up and this is not my usual approach to being unwell so gives you a rough idea of how I felt!
Today has been hectic with a long list of tasks achieved that has kept me out of the house and on my feet most of the day - needless to say I am now completely exhausted - trust me to learn the lesson the hard way - but hey jobs had to be done and nobody else could do things like sit in the dentist chair for me!!!!
http:www.facebook.com/GastroParesisUK

Yukky day...

Yesterday was not a great day extremely bloated and nauseous. Forced myself to eat a small amount but struggled for hours afterwards.
9 days until surgery....

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!