A new chapter begins. 9th July 2019

I thought I would start my blog again as I have been very unwell again and it is such a good forum for updating everyone on what is going on.

Obviously, some of you are aware that I am back in hospital. So an overview today and detail going forward.

Since September I have been having some abdominal pain and before Christmas I had a really bad bout which saw Mark and I in casualty in the Princess Royal. I have had a gallstone for years and many doctors have looked at it an said it was there but not to worry. On this occasion the A&E doctor reckoned that this was causing my pain. I went back to my consultant GI surgeon who said as the pain was coming in a different area to the week before he felt it was far more likely to be adhesions which also makes sense to me as this has been a recurring issue. I have also been seen by a GI specialist in St Mark’s Harrow who agreed with Mr. Lamah, so I felt I had made the right decision. However about a month ago I had another awful pain and my blood tests were raised and went to my GP who said I should have an ultra sound and they said I had a huge gallstone and it should be looked at. I went back to Mr. Lamah and he wanted me to have it MRI’d and as I was due to have an MRI at The Royal Marsden and they we happy to report to Mr. Lamah it seemed a good idea to wait for that.

Monday 25th June in the middle of the night I was woken by the worst type of pain I have ever known, and sadly Mark was not there. I was very close to dialling 999 but took some paracetamol and eventually the worst of the pain went. I saw a doctor the next morning and got some higher pain killers and went to do New Designers Show in London. I was in discomfort but not agony there and came home on Thursday. Thursday night I had another terrible night and off Mark and I went to the Princess Royal and was driven by Mark to EACU in Brighton and seen by the GI team. I had a scan and it revealed a 4.3 cm gallstone (I later found out it is so big it has a name of Merizzi Syndrome), this was causing trouble in my bile duct and so that is what the problem was. I needed to have a MRCP to see if there were any stones in the bile duct. The next appointment was 8.40 on the Wednesday. I was sent home late on Friday. On Sunday Morning 30th I got up normally made tea and was just going to the loo when I blacked out, I had just started the awful pain again and Mark called the paramedics. My blood pressure had crashed to 50:30 and although I did not have a temperature everything else was off. I was hallucinating and barely coherent, so this time blue lighted into A&E with Mark following and Tessa and Isabelle came down as well. I was pretty out of it, and if it hadn’t been for Tessa telling me a few days later I could not have recalled this next bit.

My blood pressure did go up a bit, but still very low, and my blood results were rising. I had had a black stool on the Saturday which becomes more relevant as the story continues. I eventually was found a bed in the HDU and had amazing care there. Blood transfusions, platelets, massive antibiotics, to find I was resistant so one of them thanks to a bacterial infestation I was told. The doctors here felt I should be seen under an Upper GI tract team and that Mr. Lamah who was on holiday is a lower GI tract specialist and he was suggested to hand over my care. So a plan was hatched, I have as you can all appreciate a complicated abdomen and it makes surgery, which for most gallbladders a straightforward keyhole procedure, difficult. Added to this the gallstone is pressing up against my bile duct and there is a risk of this tearing when it is removed so not straight forward. Secondly I have anaphylactic shock to a group of anaesthetic drugs. The local centre of excellence for this is Guildford, and the lead surgeon is Professor Tim Worthington, so I have been referred there to him and he has accepted.

My next complication and one of the reasons for me being poorly was that I was bleeding internally. The gallstone was pressing on the Hepatic artery and causing an aneurysm. This accounts for the black stools and part of my misery. So on the 8th I had an interventional radiologist procedure to put in 4 coils to stop the bleeding. Some of the pain has subsided.

I was in HDU from late Sunday night 30th to Thursday and have been on the gastric ward on level 9 at The County hospital every since. I left HDU stable, the infection under control of iv antibiotics and still having bouts of pain. I now have the bleeding under control as well, so apart from the fact I have a very damaging gallstone which is blocking my bile duct and turns me yellow I am stable, so they are happy to move me and I might now be well enough to be moved to a private bed at The Nuffield Guildford. I cant be discharged as I am still on iv antibiotics and if I wasn’t I would end up back here again as the problem has not been sorted.

I am in a ward of five women (none with dementia I am glad to say), and have a window overlooking a building but I get fresh air and sky! HDU is in a basement!

I have also had a pict line put in after 14 cannulas and probably more failed attempts and bruised arms.