I am going to write about
what I've been through - your posts have helped me enormously, and I hope my journey can help you too.
It all began for me in the 1970s, when I was young. For as long as I could remember, my late father most evenings told us he had "heartburn", and would have a glass of water and Bisodol, an antacid. Funnily enough, just now and then, I experienced the same at that time, and also reached for the Bisodol.
Many years later, in the 2000's, my late father one summer was unable to eat a pizza we'd just ordered, he seemed to be struggling to swallow and catch his breath. He later went to the hospital, but they said it was just indigestion, and gave him Gaviscon or something similar, but this kept happening to him and in the end he was referred to a clinic to have some tests. It was so cold that day, my dad was gone what seemed like an eternity, and my back was playing up. I wondered why it took so long, but when I saw an oncologist nurse sat beside him, I knew it wasn't looking good. They told me he had to have chemo for his oesophagus. Unfortunately though the first course of chemo didn't work, and my dad didn't make it.
Since the 2000's, I noticed my chest kept making these weird creeking sounds, like a clip out of a Laurel and Hardy scene in a haunted house with a massive door
opening slowly, and that indigestion was happening more as time went on with me. Alongside this, I was diagnosed with adult onset asthma, and in addition to that, was told I either had vocal chord dysfunction/hypersensitive airways/chronic cough syndrome, oh, and the Ear, Nose & Throat team performed an endoscopy and informed me I had "acid reflux... rather a lot of it". At about
that time, one day I was eating the most delicious meal, and was hungry so I was really enjoying tucking into it, but suddenly I just could not swallow. Somehow the actual action of swallowing wasn't happening. This horrible experience happened again, this time with an espresso, which took me nearly 2 hours to sip/drink.
So they referred me to a gastro team, & after months of waiting attempted to give me a barium swallow. YUK!!! But luckily they were very patient and my 2 pathetic slight swallows were enough for them to see acid reflux in full force.
Fast forward months, and the gastro team admitted me for an endoscopy under sedation, from which a small hiatal hernia was diagnosed.
After countless out patient appointments and an inability to tolerate famotidine or any ppi's, and an urgent referral to another hospital, which turned out to be many more months down the line, to be given a general anaesthetic for them to put a 48 hour bravo transmitter inside me. Which again showed up severe GORD (gerd). Another wait back to the original gastro doctor. Frustration.
At least 18 months ago possibly longer, they informed me I might be a future candidate for EndoStim, and then I found out thanks to the internet that a free trial in the UK had been and gone, almost at the end stages. Given their view though, I began to explore Endostim, alongside Stretta, Linx, and surgery. As I already had swallowing problems, for me most of these were out of the question as far as I was concerned and the doctors agreed. But my main concern was I did not want to end up suffering like my late father did, something had to be done at the first opportunity, before any pre- condition started to show up, as I was unable to take the regular ppi tablets, and was suffering with acid reflux daily, which in turn was aggravating the asthma and I had many bouts of laryngitis, nausea, chest tightness, swallowing problems, acid reflux, head down the toilet without actually vomiting, and sinusitis too. It got so bad that no UK over the counter meds helped at all. Luckily for me a kind friend who visited Europe told me about
Maalox there being much stronger in contrast to the weaker strength Maalox you get in the UK and bought loads of boxes back for me. While not completely effective I was totally reliant on them but when it got to the point where not even 8 a day was working, something else has to be done.
Between the last 2 years it got to a point where the gastro teams wanted to help but their hands were tied owing to no more trials on the horizon and no funding for them to offer it to patients. In the end I thought enough was enough and after being referred to various surgeons in the UK I decided EndoStim seemed to be the best option for me - the one with the least chance of swallowing issues afterwards, a good success rate, it having been applied in other countries for a good few years now, me having attended N.I.C.E. meetings where a big decision was finally made about
a year ago that according to the UK it was safe to be used for research and trials here in the UK, and all posts about
it here, and elsewhere about
Let me tell you something. I was informed last year that a free trial of EndoStim is going to be happening in a UK teaching hospital at the beginning of 2017 and that candidates were going to be contacted (by now). Has anything happened? No. I contacted everyone and everywhere I could think of to find out where, when, who. But not one person has got back to me at all. And, I thought, just my luck if I wait goodness knows how long, I could still be told I might not fit a criteria just my luck. So that's why I thought ENOUGH!!!
A week ago in Leicester in the UK, I had the 7-year EndoStim implanted and my hiatal hernia fixed at the same time.
I was able to eat a light breakfast at 7am, drink water up to 10am, and at 4pm that day taken to the theatre to have surgery under general anaesthetic. They also carried out an endoscopy at the same time (all clear thank god).
They said the surgery went very well, and to expect some gas/wind pain for a few days in the shoulders. Which I am getting, and am taking prescribed pain killers for. I had keyhole surgery and for the hernia dissolve-able stitches. Stayed in hospital for 2 nights (as I have another health condition) and the hospital were obliging.
Was out of the recovery room and back in my hospital room by 7pm or there about
s. They said only water that night, with injected pain relief and other meds, and the next day "slops" only. The next day I was able to eat a small amount of scrambled egg, and some soft Weetabix cereal, and surprisingly at lunch I ate a small portion of cottage pie (mince meat with mashed potato on top), very soft veg, and an ice cream. I was allowed decaffeinated coffee. That night I had a jelly.
Next morning I had trouble eating Weetabix., it felt a bit odd when swallowing. they said that was because f the hiatal hernia swelling. So I have only had really soft things, very small amounts, I'm treading carefully.
They said be as mobile as you can ie don't spend all the time lying in bed. I wore hospital stockings and told to wear clean ones for a few more days.
Have since discovered some things now seem to taste disgusting, probably because of the drugs in my system. but I'm happy to be able to eat watermelon, and heavily soaked Kellogg's Rice Krispies.
The journey home and sitting upright provokes the gas/wind pain in the shoulder, so I'm taking things slow and used a blender to blend stews and cooked fruits up to a liquid paste. Small portions, lots of water.
They said the EndoStim will take 3 months to work, I will then have an out patients appointment with the surgeon. The nurse will change the dressings again in a couple of days. The dressings have been waterproof and the hospital got me in the shower the day after surgery in a wet room. That was nice.
So now its recovery time. Any questions I'd be happy to help, as I'll be posting every so often with updates and I hope it helps you too by reading them.
take care for now.
Post Edited (321lift0ff) : 1/30/2017 2:19:04 PM (GMT-7)