Up The Farway Tree

Live from Newcastle

I'm still in Newcastle tonight following my endoscopy this afternoon and we will just head home tomorrow. I met with the GI doctor first to discuss what was happening (since I had just received this random letter in the post with no explanation!) As expected, he said I had been referred due to the results of study I took part in, which showed significant acid reflux. Basically there is a sphincter at the bottom of your oesophagus (gullet) which opens when you eat to allow food down, and closes afterwards to prevent acid coming back up. During transplant surgery the nerve which controls this can become damaged (the nerve runs down the chest) so the sphincter doesn't work properly - hence acid refluxing back up and causing symptoms. My case is a little different as I had severe reflux pre- transplant (common in CF) and am already on the maximum medical therapy (in fact I am on doses above those normally allowed) - this worked quite well pre transplant but since the transplant the symptoms have all returned. Based on this alone, I am a very good candidate for surgery - an operation called Fundoplication - this involves wrapping a small part of the stomach around the oesophagus to create a new sphincter. So the reason he is recommending the surgery is to help alleviate the symptoms, but as an aside, it may help reduce my risk of chronic rejection (although this is not reason enough to do surgery on someone).

He did explain the possible side effects post surgery, which did make me feel a bit more worried about it all! The sphincter will be very tight to start with and at first I will only be allowed to drink and then take sloppy food for first few months (not liquid, but things like mashed potatoes etc). Then I start introducing more normal things like pasta, fish etc. However it is quite possible I will always have problems eating heavier foods such as red meat, crusty bread etc. I may in fact not be able to eat them at all.....and I LOVE steak! Most people however can return to a near normal diet. The other issue is that the air from your stomach (that you swallow) can't escape so you get quite bloated. I don't like this one bit! I get this enough due to GI problems with CF. However on the upside, 90% of people have significant improvement in symptoms and usually come off their medication (although I might have to stay on it due to rejection risk issue).

The actual surgery itself is normally done using a laparoscopic technique - this involves 4 small incisions for them to put instruments through but scarring is minimal and I should only have to stay 1-2 nights. However he also took a look at my peg tube site - which is still leaking after 6 months!! He said that the stomach is adhered to the abdominal wall where the peg was and this might make laparoscopy impossible - in which case he will have to proceed to open surgery, which clearly is much more invasive and would be around a 6" scar (judging by the hand motions he made!!) I would have to stay in hospital around 5 days if this was the case. I will have to consent to both and will only know once I wake up which has been done. Normally the risk of needing open surgery is 1 in 40 but my risk is about 1 in 10. It would be really annoying if this happened as it would be a big setback for me - I probably wouldn't be allowed to go to the gym, to drive, lift things etc for few weeks but I will just have to take it as it comes. On a positive note though, he is going to staple the peg tube site from the inside to stop it leaking - as he said if it hasn't healed by now, then it's not going to. It will be great to get that sorted once and for all.

So, after all that discussion, I had the endoscopy this afternoon, which was just to check there was no reason I could not have surgery. He said that they found the sphincter was sitting wide open, when it should have been closed, so there was clearly a problem. Also however, he found food in my stomach and I had been fasting for 5 hours. This indicated that my stomach is emptying too slowly (another post transplant issue) which might affect the surgery. Therefore I will have to go back for some tests to investigate this - I think it involves drinking a radioactive fluid and then being x-rayed. Nice ;-) This should be done fairly soon. There are medications which increase gastric emptying speed so there should be something to help if this is a problem.

He did offer me the first date available for surgery, which was 19th Dec. However if I ended up getting open surgery then I might be in hospital at Christmas! No way!!!! So, I politely declined and will be getting it within the first 10 days of January instead. At least this means I won't be eating mashed potato for my Christmas and New Year dinners. Especially after I missed both of them last year due to being too unwell to eat, so am really looking forward to a great Christmas this year :-)

So, I'm not sure how I feel about all that really. I think he has painted the worse case scenario so that I am clear about risks - but hopefully it will all be plain sailing. It would be lovely to get rid of all the reflux symptoms and to be honest, if I didn't get this surgery and developed chronic rejection, I would never forgive myself. There must be a reason that I took part in this study...

I have other stories about starting the gym etc but will have to save them for later in the week. Enough for one night I think!