REFUNDO

The Road to Refundo

On 28th April 2014, I had fundoplication repair surgery.

My fundoplication wrap having become loose, and with aspiration of reflux causing chronic cough and hypoxia, in 2013, I started on the road to a repair.

July 1st - Emailed Sr Shirley James, Gastroenterology Advanced Nurse Specialist seeking guidance using the "Virtual Clinic".

July 16th - saw her in clinic and determined I needed an endoscopy to determine problem.

August 28th - Endoscopy with Dr Phil Boger determined wrap was loose, photos were taken and referral made to surgical dept.

December 4th - Saw Jim Byrne, upper GI surgeon, in clinic and agreed to proceed to fundoplication repair surgery.

January 23rd - Pre-op assessment at hospital clinic.

April 28th - I had the operation

April 30th - discharged from hospital

Chronic cough and Hypoxia

During the months awaiting the procedure, my cough and breathlessness was gradually getting worse. I rarely felt fit enough to tackle my preferred daily 24 mile cycle route reducing to just once a week on average.

I would start the morning with a coughing fit - half an hour after getting up and having a small glass of pineapple juice. And I would have perhaps 3 such fits during the day (usually after having something to drink) during which I practically blacked out. I was aware of things going on around but not in control as I froze before sensitivity gradually returned with weird sensations as if my skin was being pulled tight over my legs and arms and a tingling sensation combined with the feeling my legs were pumping up and down as if marching through mud. Vision cleared slowly and things came back into focus.

Clinical assessment

When I first met with my surgeon in clinic when options were discussed, we both knew each other through the work of the charity I chair. Jim Byrne, like all the medics, surgeons, nurses and support staff at Southampton General Hospital, is very approachable. He decided he knew enough to go ahead with revision surgery as soon as the busy schedule allowed it - though (as it wasn't life threatening) I'd have to wait a few months.

In the interim, during that time, he asked if I could help as a patient volunteer at a mock examination for surgical students, to which I agreed. It was there I met some charming students who agreed to help fundraise for the charity by running the Great South Run.

The operation

On the day of the operation, I was dropped off nice and early by Karen. Jim came to tell me I was first on the list. One of the surgical students also popped in to wish me luck.

I felt sorry for some of the other waiting patients who had to be told their operations had had to be delayed as there had been an influx of GI problems and there was a bed shortage. My own operation was delayed an hour for an emergency procedure that understandably had to take precedence.

Lying on the trolley in the theatre's ante-room, about to receive the anaesthetic, although I hadn't eaten for 15 hours and hadn't had even a sip of water for about 6, It felt as if I could feel a little acidic liquid in my oesophagus. I told the anaethetist who said he'd be pinching my throat as I went under to ensure I didn't choke. I didn't feel this and the first thing the surgical team did was to insert an OG (Oesophago-Gastric) tube to suck out any excess acid being produced.

The operation took a little longer than the original Nissen fundoplication as there was more work involved. The surgeon performed a "Collis-Nissen" which mean the stomach was resectioned to effect an extended oesophagus (the Collis bit) permitting a better Nissen wrap - which should be longer lasting.

Post Op

Lying in recovery, as feeling gradually started to resume, I was in no pain but gradually became aware of a strange pulsing feeling in my legs. The nurse said it was the special stockings that were pumping to ensure blood flowed properly in my legs to prevent risk of clotting (since I clot easily). I also became aware of all the other tubes. I was connected to oxygen with the little tubes that insert into the nostrils, I had the OG tube which was to feel as if I had a sore throat as feelings became more noticeable. A drain tube protruded from my left side to remove any excess blood from the abdominal cavity and the inevitable drip was connected.

Thus I was to lie, comfortably, in recovery for 8 hours as they tried to find a bed for me. Anyone who has read the accounts of my previous operations will find this sounds rather familiar - though this broke the record. Other patients came and went following their operations and I suspect the two caring nurses (one male and one female) looking after me had to stay on overtime until eventually a bed was secured. They then decided not to wait for a porter but to wheel me themselves to the ward.

It wasn't the upper GI ward but lower GI and I was greeted by a very lovely cheery nurse very knowledgeable about my condition and the operation I had had.

I was beginning to feel as if I had gone 8 rounds with a heavyweight boxer. I wasn't in any pain as such but felt bruised and my body ached. I just wanted to lie quietly.

The pharmacy trolley came round. I was getting antibiotics in my drip but they gave me soluble paracetamol and insisted I needed to take acid suppressant until told otherwise by a doctor, despite my protestations. Soluble omeprazole had been prescribed but they didn't have it on the trolley and the main pharmacy was closed by now (except for emergency medicine) so I had to have a normal ranitidine tablet - even though I pointed out that with scar tissue restricting my oesophagus, I would not be able to swallow it. But the dispensing nurse insisted. As predicted, it stuck in my oesophagus where it gradually dissolved (tasting horrible). And then I watched as it was sucked out of my stomach through the OG tube!

(And I was given a plentiful supply of urine bottles - as were all the other patients in the ward.)

When the doctors did their rounds the next day, it was not Jim Byrne (he'd told me he'd be at a meeting in London) but another of the team whom I had previously met. I expected to be told I could go home but he said it was now their policy to keep me in 48 hours to ensure no complications and that I was strong enough for discharge.

My notes said to have pureed food and I remember having soup and jelly - though only managing very small portions.

On the ward

I just had to lie there with nothing to do - but with no energy to even attempt to focus on a book, I wasn't complaining. Instead I was entertained by observing everything that went on. I wrote an account of a typical scene in the ward which may be accessed here.

In the afternoon, I became aware of an intense "stitch-like" pain on the lower right of my abdomen where I imagined my appendix to be. I told the nurse. "It's the drain tube," she explained. "It runs right across your abdomen." And, knowing it was now no longer required, she removed it shortly after together with the OG tube and the oxygen.

Once the drip had gone, I felt normal again - though, being a bit weak, had to let a nurse know when I wanted to go to the bathroom so I could be accompanied whilst I walked to make sure I was OK - but I felt fine.

The second morning on the ward, I was eager to be getting home but couldn't get discharge agreement until after the doctor had seen me. Being busy in the operating theatre and with me being on a different ward, meant his round was later than others but he said there was no reason why I shouldn't go home that afternoon.

Meanwhile I had been up and dressed and had permission form the nurses to walk unescorted to endoscopy to see the receptionist who acts as poste restante for the charity and I had some materials to pass on to the surgical students. I also met our advanced nurse specialist, Shirley, who was pleased to see me looking so fit so soon after a major operation.

Following discharge

Two weeks after the operation, I was one of three charity chairs meeting with three MPs, three upper GI professors and three others (including the national clinical director) at a dinner in the Houses of Parliament to launch the "Oesophageal Cancer Westminster Campaign". The food was excellent but I couldn't eat most of it. It was still rather early for solid food but I managed the smoked salmon, potato salad and the dessert OK - in small portions as my new smaller stomach got full quickly.

Over the weeks following, whereas I only managed small portions of food, eating more frequently, particularly as I didn't feel hungry, didn't come naturally. If I ate too much or too quickly, I felt bloated and nauseous. I was to learn about dumping syndrome.