As I type this I am still in a state of shock and bewilderment.
I feel hopeless and I am a fighter. I am strong, I do not crumble under the cruelty of the NHS but this time I feel am defeated and I have no one else to turn to but America.
I collapsed in South Africa in 2010 in Cape Town over a period of years where eventually the liver specialist Dr Epstein said “you are sick. Probably small duct PSC like your mother”. Possibly the only and last sensible words ever said to me.
On return to the United Kingdom, they just do not believe I am sick. Even when I am vomiting bile for three weeks at a time, am losing stone after stone and cannot digest food: they do not believe I am sick.
Is this the stigma of having a diagnosis of M.E/CFS or is this just doctors refusing to listen? You know, I don’t think it is. I think it’s the ATTITUDE and ARROGANCE of the doctors in this country and having travelled the world seeking answers I think it’s only a problems with doctors from the UK. They think they are God.
My mum has PSC and has been left to die from sepsis on numerous occasions and has been treated appallingly by some of the top names in liver care in the United Kingdom.
Now the doctor I saw is the best of the best, like the Gandalf of Liver Disease.
I walked into the room and shook his hand and he looked at me, puzzled as to why exactly I was seeing him when I had seen two top consultants who are also supposed to be the best of the best, one of them left us waiting 8 months to see what he would do, in the end we got our money back with a note saying “I am too busy”.
All patients deserve to be listened to, whatever their history and treated fairly and with compassion under any doctor, be in NHS or private.
I feel like I have been treated like something one has stepped in and it is not good enough.
Now for the history
I wish to make it clear that I am not trying to push for a diagnosis or condition, I am not a hypochondriac nor am I stupid. I know my body and I know something is very very wrong and cannot get any consultants to take me seriously.
My mother suffers from Primary Sclerosing Cholangitis and has had a liver resection because a doctor, who shall remain nameless, who I am SO ANGRY AT, refused her a transplant when she so desperately needed one. I have seen my mother suffer for almost ten years because of this and have almost lost her six times from cholangitis and sepsis. I’ve been through all her procedures with her, seen all the consultants and understand that her case is not a typical case of PSC which has been confirmed by all the top clinicians and surgeons in the field as well as in South Africa. My mother has never had a raised Alk Phos nor has she been jaundice during her attacks yet Professor Malago treated her as a cholangitis case.
My history is rather complicated. I suffer from a condition called Ehlers Danlos Syndrome which is a connective tissue disease. I became unwell in the November of 2007 after a viral infection, initial symptoms were fatigue, sporadic vomiting and diarrhoea and raised liver enzymes.
I spent a lot of time in Cape Town, South Africa from 2009-2012 and it was there that I collapsed with “mysterious” attacks every six months or so of vomiting which would last a week, severe upper right quadrant pain, fever and raised liver enzymes, CRP and white cell count. These attacks coincided with my being in South Africa so I was treated there instead of in the UK.
It happened so many times it was concluded by the consultant there that it was acute cholecystitis and I was prepped to have a cholecystectomy but chose to have the operation in the UK at Worthing Hospital. I became immediately worse after the operation. I honestly believed it was a simple gallbladder problem; who am I to think otherwise! On my last visit to South Africa I had a scan and was told because of a dilation that it was likely I had some form of sclerosing cholangitis like my mother. I returned to the UK and my GP referred me to George Webster at UCH. By this time augmentin which I was given for the attacks had stopped working so my GP changed it to cefuroxime.
During 2012/2013 I was incredibly ill with a heart problem and I would black out every time I tried to stand up and had frequent seizures. This prevented me from seeing George Webster on the NHS although I did manage to have an MRCP. I kept trying to get up to London but every time I blacked out. I was subsequently diagnosed with Postural Orthostatic Tachycardia Syndrome which is now under control and enables me to once again be able to travel without fainting. The new tablet was only prescribed in October 2014 so I’ve only literally just stopped fainting and having seizures.
UCH discharged me understandably, so I went to see George Webster privately. He said that there were no biliary strictures but I did have a possible pancreatic divism. He said that the infections would settle down but they didn’t. My mother is under Steve Pereira privately so I went along to see him with her one time and he hinted that my problems could be down to Sphincter of Oddi dysfunction due to my Ehlers Danlos which would be very hard to diagnose. Again I was too ill with fainting and seizures to follow this up on the NHS.
The attacks began to get worse and I had to be on cefuroxime permanently as the attacks would just come back. They often came back regardless of the antibiotic so I had to take ceflclor for an acute attack which would clear it up in a week and keep me stable for about six weeks.
I had no more money to go privately so I was then recommended the Royal Free Hospital by a fellow patient so I asked my GP to refer me and I had my first appointment with Dr Patch on 3rd April 2014.
I attended the first appointment alone and it was fairly routine. I explained what had been happening and Dr Patch said it may be necessary to do a biopsy. He also wanted an ultrasound scan. In his letter to my GP he made a comment which I did not think was particularly helpful, that I stated to him that I have an Ig G deficiency and hypogammagloublina and that labels were “unhelpful”.
I find this rather insulting, I have a letter confirming the diagnosis from a top immunology Professor at the University of Stellenbosch, of which I attach plus blood results. If this is a reason why these attacks are occurring surely it is important?
Nothing was said or done anyway and a follow up appointment was made for 3rd July. This was the last time I was fully mobile and as well as I could be. Since that appointment I have been bedridden and wish to highlight from hereon in the severity of my condition. During this appointment Dr Patch was so rude! My mother was with me this time and can bear witness to his behaviour.
The computer systems were down and he came storming out of his office with a face like thunder and when we were eventually called in, he was cursing the computer and paid little attention to his patient. He was also angry that he had not managed to get my MRCP results from UCH – so he had basically made the appointment on the crux of that scan and therefore dragged me all the way up to London for nothing. The logical thing to do would surely, given my symptoms, done another MRCP but no. I believe he wanted to schedule an Ultrasound at the Royal Free.
The day after seeing Dr Patch, on 4th July, I collapsed with the worst attack to date. I vomited bile for an entire week, I was shaking and trembling and could barely stand and was in agony. Dr Patch was informed and told me to go to my local hospital. I told him that they wouldn’t help me and explained what happened after my gallbladder operation * see footnote. My G.P arranged an emergency ultrasound on 11th July which revealed four large masses on the liver and a dilated bile duct.
After three weeks on Septrin the attack slowly subsided and I went for a CT scan on 29th July which came back with no abnormalities but I was diagnosed with Focal nodular hyperplasia. The CT report highlighted a “suspicious area” which Dr Patch has never told me about to this day.
The attack came back on my birthday, August 24th and was even more deadly and violent than the previous month. I had the rigors, I was sweating and shaking, vomiting for a week again and for the first time I had severe stomach cramps and electric yellow diohrrea which went on for a week, I couldn’t eat, couldn’t keep water down, was dehydrated and severely weak. My mother telephoned Dr Patch and begged him to admit me into the Royal Free which he refused. Given the state I was in I should have been an inpatient under investigation – not to admit someone that ill is barbaric and in my eyes, negligent. My local hospital won’t touch a patient if they are under a London consultant. That’s just the way it is. My mother wrote to Dr Patch on in July trying to get him to understand how ill I had become so quickly and we never received a response. We kept ringing and ringing his secretary but still he never replied to that letter which is just bad manners, no matter how busy a doctor may be.
I’m unsure how I got from August 24th to the present date – a combination of septrin and ceflclor.
In November the Septrin stopped working and I had the worst attack I’ve had to date and I was rushed into my local hospital. The doctors there listened to me thoroughly but because I had no notes or care plan, they did not give me antibiotics despite my CRP and liver enzymes being raised.
I was sicker than I had ever been before, I could not even stand to wash myself, I couldn’t hold a fork to eat, I was so weak and the rigors were horrific and took over my whole body, trembling from head to toe and the sweat was pouring off of me. I didn’t eat for over a week and by now had lost over a stone in weight since July. The upper right quadrant pain was so bad I was in tears and screaming, I couldn’t lie on my right side at all. I increased the dose of septrin but it wasn’t working. I was extremely drowsy as well, lethargic and very confused, I didn’t know what day of the week it was.
I remembered that when we were in New York one of the doctors gave my mum when she had an attack – Rifaximin. I asked my GP to prescribe some and it worked and within 24 hours the rigors had stopped. After a week I felt strong enough to shower again and was getting up. If Dr Patch isn’t convinced these attacks are cholangitis related, WHY DOES IT RESPOND TO THE RIGHT ANTIBIOTIC?!!!
I had been so ill I had to cancel Dr Patch a few times and finally saw him in clinic on 27th November and he was the rudest he has ever been to me, completely dismissive.
When I walked into the room he didn’t shake my hand, didn’t look up to acknowledge my presence, you could instantly tell that he wasn’t interested.
I immediately told him about the attacks I’d been having since July and he just barked “symptoms”, no sympathy, nothing. I started to describe the attacks when the phone rang and he spoke to the person on the other end for about 3 minutes and when he had finished he never bothered to ask about the attacks and just told me to get on the bed to examine me. He then left the room, then started to phone someone to cover him as he had to leave clinic, he seemed more concerned with getting out of there than seeing his patients! He then came back and told me that the tumours are harmless which is fine, I was happy with that. I then queried as to why when I had an attack, the common bile duct was dilated. My G.P told me, and you can confirm with him, that if the bile gets blocked, then it clears itself, it’s going to be VERY HARD to pick up on a scan. I told Dr Patch that my G.P said this and he said your bile ducts are fine, there is no evidence that there are any duct problem and we haven’t seen the inside of the ducts because we haven’t done an MRCP.
I stopped in my tracks. What do you mean you haven’t done an MRCP? With my family history and symptoms, EVERY doctor I’ve ever seen said an MRCP or ERCP is the FIRST THING NEEDED. It turns out the scans that Dr Patch had arranged at my local hospital were just basic MRI scans which took place on 12th September – no wonder it didn’t show up anything. And Dr Patch told a barefaced lie by saying there is no evidence of biliary problems: it was on the ultrasound and it was on the MRCP report from George Webster stating I had a possible pancreatic divism which when I asked, Dr Patch TOTALLY DISMISSED.
It was only when I started to get angry that Dr Patch agreed to a proper MRCP but by then I had totally lost faith in him and I said that I don’t believe you understand how ill I have been.
He then said that PSC sufferers always have a raised alkaline phosphatase and that if I had small duct PSC that can only be confirmed by a biopsy which he was unwilling to do because my Alk phos hadn’t been recently raised although it had been in the past. I think this attitude is terrible – what harm is it to run a biopsy and if I do have fatty liver like he says, surely the level of damage should be assessed?
I tried to explain at my appointment yesterday that two days prior to my mother’s emergency liver resection which had to occur as the left lobe of the liver had completely died from cirrhosis, that her Alkaline Phosphate was not raised – only her GGT which sat at 96. For some reason in both our cases bloods do not give a full picture but Dr Patch would NOT allow me to speak.
I also told him about my electric yellow greasy stools and that I could not eat without it going straight through and he completely ignored it – considering my vitamin D is very low surely malabsorption should be investigated but instead I was ignored and left to suffer.
He then told me that I am trying to chase a diagnosis that I don’t have. I said fine, if it’s not the actual PSC then perhaps, like Steve Pereira said, it’s a bile flow problem due to my EDS – he dismissed this and said it wasn’t his speciality.
I showed Dr Patch some abnormal blood results picked up when I was in hospital, raised complement C3 and C4 which has been shown by researchers to be raised in autoimmune liver disease. He barked at me again “not my field”. Surely it’s his job to find out – anything to deny the fact that I am ill.
On 27th November I received a letter from Dr Patch stating that had requested an MRCP which is UNTRUE as you have read the above. I requested the MRCP – I insisted on it, Dr Patch would never have bothered had I not.
Needless to say, I no longer wish to be Dr Patch’s patient. When I do finally get a diagnosis confirmed, I shall be taking this further.
I was then referred to the best of the best, Dr Hirshfield at Queen Elizabeth Hospital, Birmingham.
Present Day – 23rd March 2015
I walk into Dr Hirshfields office, he shakes my hand and he looks rather baffled to see me, as if I should not be there at all.
He frowns and me and says why have you come all the way up here to see me when you’ve seen the best consultants in London.
Because they never listened to me I replied. Not one has sat me down and gone through how bad my symptoms have become.
Dr Hirsh then proceeds to get my MRCP scan up from 2013 on the screen and says there’s one tiny lesion – nothing to worry about. I said, er, I sent you the CT scan report from July that shows FOUR MASSIVE LESIONS.
He then says there is nothing to worry about. I ask him how he can be 100% sure if they are not cancerous, if there are no cancerous liver cells if they are not biopsied. Oh we won’t do a biopsy.
I ask then about these horrendous attacks and pain and he says to carry on rotating septrin and cefaclor, like it’s totally normal.
I then ask him to write to my GP giving authorisation for IV antibiotics if I am admitted into hospital.
He then looks at me and says, with a look of almost anger on his face, that “nobody gets admitted into hospital anymore.” He muttered something about the Government and said you literally have to be dying of a heart attack or a stroke to be admitted, or be in a car accident. Even transplant patients are turned away because of no beds. So he said no admissions for me.
It’s a good job I have a stash of IM antibiotics at home then isn’t it.
He didn’t want to know about the griping pain, the yellow greasy stools, any of it. When I asked if it could be my pancreas divism, he said no. People with pancreas divism don’t get symptoms, same as people with liver tumours don’t get symptoms but if you scour the internet you’ll find a different picture. Doctors are so out of touch with patients.
By then I started crying and getting fairly hysterical.
He then said he would take me in for one day and do everything, an ultrasound, an MRI and a fibroscan, then call if he finds anything – or I have the option to have all these tests done under George Webster privately. It’s my call.
But just like my mum who was told no she couldn’t have an MRCP – I was told MRI only. It’s the radiologists who decide what scans you should have apparently, mot the doctors – same as it’s the microbiologist who decides if you get antibiotics or not. Doctors don’t actually hold that much power in the hospital.