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chrisrob
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Quote chrisrob Replybullet Topic: Road to NHS refundo
    Posted: 07 Aug 2013 at 11:35am
Following a violent bout of what I believe to have been Norovirus back in January (5 hours of violent, uncontrollable, retching every 20 minutes), I am increasingly of the belief the fundoplication wrap I had over 4 years ago has come undone.

My reflux cough is back along with all the other compromised respiratory associations of reflux.
And I am following the advice I give others: small portions, loose clothing, no food for at least 3 hours before bed, bed head raised 7" etc.

I eventually decided to do something about seeking having it done again. On 1st July, I emailed our Gastro nurse specialist practitioner, Shirley James (as per the "virtual clinic" she runs). She's brilliant and saw me in clinic a couple of weeks later. I will need another scope to assess the wrap before I can be put on the surgical list.
It is not life critical so I expected a few weeks wait. To speed things up, she requested the scop be done by surgical team rather than medical. And I received a date: 10 September.

Today I received a letter from the hospital. It has been rescheduled for 24th September!
Yesterday I had a really rough day with the coughing. I hope to have this sorted sooner rather than later.
Anyway, I'd planned to be away during that week so I phoned the hospital to change the appointment date.
And they have managed to find me a slot on 28th Auhust (probably a cancellation?).

Prior to my previous fundo (for which I'd had to wait 20 weeks!), I'd been on 80mg omeprazole. I was totally out of breath and tired all the time which I put down to being anaemic from the PPI. This time I am not on PPIs. (I have only noticed acid a couple of times and taken a single 75mg ranitidine - or if it's night time a small swig of Gaviscon.)
But I am feeling out of breath and tired again from the reflux. I forced myself to go cycling yesterday - though didn't think I had the energy. I surprised myself and found the exercise actually helped open the airways.

If necessary, I would pay to have this done privately but, having paid into NHS all my working life, and not wishing to be treated as any kind of a special case, I'll see how long the process takes now.

Chris
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LoraB
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Quote LoraB Replybullet Posted: 07 Aug 2013 at 1:05pm
Hi Chris

I am so sorry to hear your news

At least by ringing the hospital you managed to save a few weeks of waiting for the scope.

Interesting thoughts regarding breathlessness while not taking PPIs.

Do you think it possible you have developed Asthma or even a form of COPD as a result of the years of reflux?

Just a thought.

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chrisrob
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Quote chrisrob Replybullet Posted: 07 Aug 2013 at 2:24pm
Hi Lora,

There is a strong connection between asthma and GORD. Those with asthma are more prone to it and those with GORD are at risk of asthma - possibly from aspiration.

I have been tested for asthma - but don't have it. I do still have a spirometer I was given at the time and was tried with the inhalers without effect.

But previously whenever I went to the doctor with the cough I was always sent to ENT who'd identify a problem I have with my ears but didn't associate the cough with the reflux I now know it was / is.

But I am worried what long term damage the cough and aspirated reflux may be doing to my lungs - which is why I'm keen to get this fundo redone asap.

Thanks

Chris
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DanJ
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Quote DanJ Replybullet Posted: 08 Aug 2013 at 3:09pm
Sorry to read this Chris , i hope you get sorted ASAP!
It`s interesting to note the out of breath thing , i have/had that , even just something like getting in the car and putting the seat belt on , its strange , its just a sort of a huff and puff type of event , weird , yet i can run for 3-4-5 miles and be OK (tired obviously but not incapable)
 
I had all sorts of tests , testing my blowing etc and all came back OK , but as above i have been on PPI`s for 15 months continusouly so could be them...?
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teacher man
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Quote teacher man Replybullet Posted: 08 Aug 2013 at 7:39pm
hi Chris, what are your thoughts on the LInx? If you had to do over, would you still have the nissen or LInx? Can they do the LInx after you have the nissen?
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chrisrob
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Quote chrisrob Replybullet Posted: 09 Aug 2013 at 9:06am
Hi TeacherMan,

I am still wary of LINX because it is too new to have any long term data available as to its efficacy.
Until recently it was counter indicated for Barrett's patients because of the possibility of migration. And, initially, it was feared it would need surgical removal prior to MRI scan. Now it's considered safe for low power (0.7 Gauss) scan.

Some years ago, promising noises were made about Angelchick - an inflatable doughnut around the oesophagus. Over time, however, it suffered migration and is not now used.

LINX does look like a great device and I have followed its progress for a few years, but there have been many other attempts in the past (and present) at producing a prosthetic implant or surgical procedure to minimise reflux. This article assess many - including EndoCinch, Stretta, EsophyX.

I would love LINX to prove itself effective in the long term and wish Dolly Parton success with hers, but, personally, I feel at present the Nissen Fundoplication is still the best surgical option as, using the body's own tissue, it has the same elasticity as the underlying musculature it supports.
The biggest drawback is how long it lasts: there are no guarantees. My first wrap lasted four years. Others on this forum have had theirs com undone. It's a gamble.

The surgeons at Southampton now favour the Collis-Nissen which they reckon provides a more secure wrap and greater longevity. I'll see if I'm eligible.

The other device I would love to see succeed is Endostim - the "pacemaker" for the Lower Oesophageal Sphincter delivering electrical pulses to control the musculature. (I believe there is now a clinical trial about to start in US (previously it has not been approved for use in US) - but have no other info.)

Cheers

Chris
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jcombs99
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Quote jcombs99 Replybullet Posted: 09 Aug 2013 at 12:05pm
Once you have Fundo you can only REFUNDO (or I would have it) but with a LINX you can remove then fundo .Its all in the Skill of the doctor and taking care of it .
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bouncethruit
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Quote bouncethruit Replybullet Posted: 11 Aug 2013 at 5:53pm
Hi Chris,
 
I can completely identify where your coming from.  I am really scared of contracting a stomach bug after my wrap was done two years ago. 
 
I take Domperidone all the time to avoid any possibility of asthma/COPD because the COPD tendancy runs in my late dad's family and I had asthma/pneumonia constantly when I was a kid.  So, because of this, I asked my consultant and he told me there was no danger of any gastric fluids ending up on my lungs.  
 
Because of personal experience, I must admit, I am not completely convinced - especially when you'r asleep at night.  I think its paramount to get your bed raised.
 
 
All I have to say is follow your gut instinct (lol, sorry couldn't resist!)  
 
Good luck with the refundoWink
 
Gillyx
GfromWalesUK
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jcombs99
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Quote jcombs99 Replybullet Posted: 11 Aug 2013 at 9:11pm
Get a PH test done .Your doctor sounds like a used car salesperson ..
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chrisrob
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Quote chrisrob Replybullet Posted: 12 Aug 2013 at 8:10am
Thanks Gilly,

Domperidone (Motillium) is an anti-emetic used to help peristalsis. I was previously prescribed it after the better Cisapride was withdrawn in UK (and US) some years ago, but didn't find it helped. I still have some in the medicine chest and it's not out of date. May try it. The cough's just so debilitating - and scary when I practically black out.
And I use 7" bed risers like these.

But it only takes a small amount of liquid to start me coughing at any time. (Scared to drink.)

Cheers
Chris
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