At the end of April I recorded a visit to London to see my gastro consultant (see post “50 Shades of Grey”). We discussed the “blip” last February when I turned yellow. The keywords being – local A&E, jaundice, gallstones. There was the added complication that my local hospital was taking care of this issue. Split responsibilities and patient records tend to slow the treatment process down.
Back in November 2016, at my annual Upper GI endoscopy, I had asked if it would be a good idea to have another Fibroscan, a specialist ultrasound scan that measures liver stiffness (cirrhosis). The last one had been in November 2012 and it would be nice to know if there had been further deterioration. It was agreed that it would be a good idea but the request form was never issued.
The need to know about worsening cirrhosis had now become more urgent. My gastro filled in the request form as I watched. A few days later the appointment came through – 4th September. That long? Four months just for a very simple 5 minute test?
Friday 7th July 2017 – East Surrey Hospital Outpatients
When the “blip” happened I had gone down to our local A&E and spent the night there being monitored. Afterwards there was a follow-up appointment with an upper GI consultant locally (see post called “Time Bomb No.2, please” – April 2017). A further ultrasound scan was ordered and he said he would be happy to see me again to discuss the results. The scan took place on 12th May, the day NHS IT systems were hit by a virus. Usually I would expect to take a copy of the report away with me but not this time. I let a month go by then asked my GP surgery if they had seen the missing report. No, but a day later they had obtained a copy and rang me to let me know. (They provide an exceptional service)
The report stated “could suggest chronic cholecystitis” (inflammation of the gallbladder). Dr. Google was divided upon this condition. Some sites declared it serious and in need of treatment straight away; others said that if the patient was asymptomatic then it could be left alone. I rang the consultant’s secretary and she organised the follow-up appointment for 7th July.
(I had been under the impression, after the first appointment, that the consultant was going to discuss the case with my “doctor” (gastro consultant at GSTT) and would make a direct referral to Kings College Hospital Liver Unit. Wrong on both counts. The “doctor” he meant was my GP and the referral would be made via the GP after the follow-up scan. Doh! I had assumed that the process was already under way.)
I asked him specifically what concerns he had that would require surgery to be carried out in a specialist liver unit. He replied that they were : liver cirrhosis, low platelets, the adhesions from previous laparatomies and a possible bleed. No arguing with that. He also said that if I had a recurrence of the jaundice or pain in a specific area then I should go to our local A&E and they would take the decision on whether to treat me or transport me to London. We left it that a letter would be sent to my GP asking him to make the necessary arrangements. I thought it might be best to discuss it with my GP rather than just let the process take its course.
In the meantime I wanted to find out if there were any other hospitals I should consider along with KCH so I posted a question on FB in the PSC and BAM support forums. A number of other units were suggested but KCH came out well and it would be easier for me to get to. Then I was recommended a consultant who works between St.Thomas’ and KCH. This would be the best of both worlds as they would have access to all my medical notes. I now had a name and contact details for the doctor I want to be referred to.
Tuesday 19th July 2017
My GP rang this afternoon and we agreed that he would put the referral process in motion. He was of the opinion that this could have been done hospital to hospital.
Whilst I’m feeling fit and in no pain then I’m quite happy to leave the gallbladder well alone but I want to be prepared in case it all starts to go wrong. It should be an interesting conversation with the consultant/surgeon as to his recommended way forward, especially when we start to discuss complicating factors – the minor annoyances of PVT, PSC, Splenomagely, thrombocytopenia and BAM. I’m sure he would be interested in the results of the Fibroscan.
(That’s quite a list of complicating factors. As I’ve mentioned before it could well be a winning hand in “chronic condition top trumps”)