I finally got my appointment with the upper GI surgeon at Addenbrookes last Friday. He is a fairly humourless Australian, but maybe that's what you want from a surgeon - the lack of humour, that is, not necessarily the Australian-ness.
Backtracking a bit, I had Papworth clinic last Wednesday and met with Jas, who showed me some pretty convincing evidence from a study carried out at Duke in the US on transplantees and fundoplication. The whole study is here: http://jtcs.ctsnetjournals.org/cgi/content/full/125/3/533 but the key interesting graphs I thought I'd copy in.
Fig. 1. Average FEV1 values in lung transplant recipients who also underwent fundoplication surgery for treatment of reflux. Patients were at least 6 months from both their lung transplants and fundoplication procedures to allow stabilization of pulmonary function. A significant improvement in FEV1 was documented in this group after fundoplication.
Fig. 2. Effect of GERD on survival: Kaplan-Meier actuarial survival curves for overall lung transplant recipients compared with the group of lung transplant recipients who also underwent fundoplication surgery after being evaluated for GERD. The fundoplication group had a significant survival advantage.
p.s. GERD stands for Gastro-esophageal reflux disorder.
Fig. 3. Effect of fundoplication on survival. Kaplan-Meier actuarial survival curves for patients evaluated for reflux by 24-hour pH studies, comparing the group with documented reflux versus the group with no reflux. A significant survival advantage was seen in the patients with normal pH studies.
Fig. 4. Kaplan-Meier actuarial allograft survival curves: allograft survival of at least 6 months to adjust for differences between organs on the basis of early technical variables. A, Overall allograft survival (6-month survivors) for patients undergoing kidney, heart, and lung transplantation, documenting a worse outcome in lung transplant recipients. B, Overall allograft survival in lung transplant recipients who did not have reflux or whose reflux was corrected by means of fundoplication compared with recipients of kidney or heart transplants. Allograft survival among the 3 groups was almost identical.
What I get out of this is that even though this isn't a controlled double-blind trial there is some significant evidence here that:
- Doing a fundoplication stops acid reflux, and people with reflux don't survive as long as those without
- Doing a fundoplication might increase my FEV1
- Lung transplant people don't have as good survival as hearts and kidneys, but if you do a fundoplication you might get a similar survival stat to those heart and kidney people.
Now, talking to the GI surgeon I mentioned this study and he said he wasn't as convinced as Jas at Papworth was by these results. "It won't be guaranteed to solve all your problems" he said. But he did agree that having reflux and possibly aspirating that stomach contents into the lungs is always going to be a bad thing. He has done 30 procedures on lung transplant people and all of them were happy they had the procedure. There are the obvious downsides to do with the recovery period of liquids, then soups, then mushy food, and the possibility of never being able to manage big chunks of meat or dry bread - and of course losing some weight during recovery.
All in all I know it is something I need to do, but something I wish I didn't have to go through. Another surgery, another general anaesthetic, another recovery. It shouldn't be anywhere near the same scale of discomfort as the transplant as it is a laproscopic (keyhole) surgery - so I'll end up with another 5 little scars on my front - 4 for tools, and 1 for the camera.
On Friday afternoon the surgeon performed a gastroscopy on me to have a look around down there. It was very unpleasant as I seem to have a pretty active gag reflex, and he said there was still a lot of sludge in my stomach, even though I hadn't eaten since the previous evening (OK, so it was a blow out dinner for my Dad's birthday, but I didn't admit that to him!). He said reflux can also have the effect of slowing down digestive transit, so that could be part of the reason. There was a tiny hiatus hernia, where a little bit of stomach pokes up through the diaphragm, but that is fixed during the procedure too.
The surgery has been booked in for 21st September, 5 weeks today.
While I love any opportunity to read graphs and scientific studies, I'm sorry you have to go through this, Will.
ReplyDeleteI'll hope for the best for you and Vicky.
You'd better get yourself properly wined and dined in the coming weeks, then. But presumably if you just chew your food properly and have modest-sized mouthfuls (easier said than done when faced with heaven on a plate, I know) it won't be a problem once you're recovered? How long will you need to be in for? At least Vicky can cycle to visiting hours!
ReplyDeleteI've been in theatre twice in the last couple of weeks, watching all sorts of ops on cats and dogs at my new job. I'm definitely not squeamish, I know that now! Animal medicine certainly isn't lagging far behind human medicine these days.
Good luck with the op, it seems worth it.
x
Well now you really have me thinking will...I knew Duke did the surgery as part of the transplant process but did not know why.
ReplyDeleteThat's interesting and quite scary reading, thanks Will. Hope the op goes well and the recovery isn't too bad. I've been following your blog for a while as I'm on the waiting list for a double lung transplant (cf) under Jas' care at the moment and he has also told me it's likely I'll need the op to help with my reflux afterwards, so I'll be reading your updates with (slightly nervous) interest!
ReplyDeleteHi Anonymous - thanks for reading and I hope the wait is going alright for you and the lungs come soon. It's hard at first - don't expect it to be easy - but ultimately a transformation of your lifestyle. I'm very happy to chat to you about it if you'd like to talk to a fellow cf-er who's been through it. Drop me an email if you fancy.
ReplyDeleteemail is willcramer74 at yahoo dot co dot uk, if you see what I mean.
ReplyDelete