Bombshell

[GrandmaDylan]

Hi I'm Deborah and was told in passing by the locum gp that I have cirrhosis and varices.

I had gone to the gp in February this year for my annual diabetes blood tests. I was called back because I had some issues with the blood tests and was also anaemic. This locum Dr K said that the results suggested that I have myeloma...blood cancer.she then said "are you okay? You look upset" no s*it sherlock! She put me on the 2 week cancer pathway and referred me to a haematologist. A week later I rang the surgery to say that I hadn't heard from the hospital and she just casually said "oh no you don't have blood cancer after all" I waited14 weeks to see the haematologist whe thoroughly examined me and told me to start taking iron tablets 3 times a day. She wrote to the gp and told them to put me back on the 2 week pathway again and arranged a gastroscopy and colonoscopy. I waa told by a nurse at discharge that I had a hiatus hernia and gastritis and they'd taken4 biopsies for H pylori and coeliac. I rang the surgery after a week or so to see if there were any reports from the hospital and after 4 phone calls I was told that the reports had been read but no comment was made by the gp. I had made a non urgent appointment 4 weeks earlier so went to that to see where we go from here.

This doctor K read the blood results out to me then the letter from the hospital. She mentioned in passing that I had cirrhosis and varices at which point I stopped her and asked her if she'd just said cirrhosis. She said oh yes, you do know that you have cirrhosis and varices don't you? At this point I started to shake and cry. She then said that they still didn't know what was causing the anaemia. I pointed out to her that I'd told her last year and again a few weeks ago that I'd had 2 blood transfusions in February1990 and i was covered in spider naevie and had expressed concern about hep c several times.

[GrandmaDylan]

sorry for the long rambling post but heres part 2.

She told me to make an appointment for blood tests in 2 weeks and another appointment to see her in 4 weeks. I left that room in bits but she made no attempt to help me.

I rang the surgery the next day and asked for an urgent referral to a heptologist who had been recommended to me and told them that I'd lost confidence in the hospital which I'd attended as i felt that they'd left me unaware of the cirrhosis and varices. The head doctor at the practice rang me and asked me how I knew that I had varices as there was no evidence on the gastroscopy report. It transpired that dr K had skim read the letter from the haematologist who had expressed concern that varices might be present and that she thought that my liver and spleen were enlarged.

I told the lead doctor at the surgery that I was very unhappy with dr K's lack of empathy and that she had acted unprofessionally. I have also told the practice manager the same.

The head of the practice has agreed to refer me to the heptologist and also the gastroenterologist at the local hospital. I had several blood tests taken on Thursday including one for hep c and hope the results will be back tomorrow.

Any advice or suggestions would be appreciated. Deb

[Hidden in reply to GrandmaDylan]

Hi

So sorry you've had such bad treatment

My advice is to keep mithering them. Have got your consultant's name cos then you can phone his secretary to push them for an appointment otherwise I have found you just get pushed to the bitty of the list,!!! Please take care

Love and hugs Lynne xxxc

[GrandmaDylan in reply to Hidden]

Hi Louise, thanks for your reply. I spoke to the consultants PA on Thursday as I wanted to see him urgently and would pay privately for the initial appointment. Unfortunately he doesn't do private patients but she told me that I should tell my gp to do an electronic referral and she'd look out for it. I got a letter yesterday to confirm they'd received the referral and i should be contacted by thursday this week. My gp said that I should be referred to the gastroenterologist I was under at our local hospital (even though I'd never seen him) I said to refer me to both. I think that once they realise that you are on the ball and won't be fobbed off they will do as you ask. Hope that you are keeping well. Deb

[Hidden in reply to GrandmaDylan]

Thank you. I was due to see my consultant on Thursday but he had to go to an emergency. His secretary is phoning me tomorrow. She has been very good. The pain is awful isn't it? Xxxx

[Hidden]

If I was in your shoes, I'd change doctors urgently. Register with a new practise and when you get the chance explain whats been going on and why you left the last practice. Be polite and don't go saying bad things as this would be very unprofessional. If you explain that you are now bricking it, and need all this to be sorted out for not only for your own peace of mind, but that of your family too. Better still, get someone to go along with you.

The best way to confirm that you have varices is to have a endoscopy. This will also confirm the presents of a hiatus hernia. If they have found that you do indeed have varices, they most certainly shouldn't be just sitting back waiting for these little blood vessels to burst before they decided on a course of treatment. variceal bleeds can be life threatening. Another word of caution is that there is more iron in a damaged liver than in a healthy one. Too much iron can cause even more damage to the liver. The cancer scare was a terrible experience to have to go through and that GP should have a lot more understanding and empathy.

If your in the UK, there maybe an organisation near you called HealthWatch. They have them in most major cities and towns. These are a mediation service when things like this go wrong between doctor/hospital and patient. Just google Healthwatch followed by your town or city. I bet they'd love this story. If you decide to change your mind, just think about those other poor unsuspecting people out there who could be suffering the same fate as yourself at this doctors surgery.

I wish you well, please let us know how you get on.

Best Wishes

Richard

[skay1957]

Hi Bridesmum, your story sounds very similar to mine. Symptoms and what I was told so similar. I also had anemia and low platelets and took iron. I also was sent to a blood oncologist initially. Anemia and low platelets go along in hand with cirrhosis. That person saying that they didn't know what was causing the anemia needs to read about cirrhosis. Finding out that it was cirrhosis was like hitting me with a brick. I know how you feel.

[X19Dave]

Hi there are different levels of cirrhosis so yours might not be too bad but I would push your GP for a liver hospital visit so they can fully check

But if you have Esophageal varices that normally means it is quite advanced if you do have them they band them so they will not cause you problem.

I know it is a bit of a shock but it does happen to a lot of people and lots have a liver transplant and feel much better after it and live for 30 years plus

And we are all here to give you help and support

Dave

[tim90125water]

Hi, if the diagnosis is correct then at least you have the diagnosis that may save your life. I went in with a bleed and came out with cirrhosis, so the bleed was a good thing in a way as without it I was heading towards an un pleasant future.

With reference to the diagnosis I too had been to GP about a year previous with various symptoms that with hindsight are clearly liver related but they were not picked up.

However once diagnosed the brilliant NHS kicked in, transfusion was given rapidly, I survived and now am a year down the line in much better health.

So focus on the future, with the diagnosis at least you know what the issue is and can start to deal with it and make the changes needed to get well.

Good luck, Tim