A major significant day in my long and convoluted journey. A Specialist Nurse Practitioner was really nice and kind to me and was FIRST medic who actually understood what I have been through for these past few years. I was so emotional because of her kindness that the things she told me, didn’t seem to matter anymore.
She confirmed that I am on Palliative Care as I have only months left to live. She confirmed the diagnosis of Hughes Syndrome (APS) as the cause of my bleeding problem. She bipassed her surgery protocol so my GP can talk to me quickly. The Receptionist wouldn’t help. My husband came up trumps and got that ball rolling. There is no longer anything they can do for the Cirrhosis or anything else, including the Metabolic Syndrome, or Diabetes or any of the myriad of other problems my body throws up at me now.
Remember how my journey began, 2002/2003 I was diagnosed with Diabetes and, shortly thereafter with NASH. Several years later my Liver Consultant discharges me on the grounds my liver enzymes are stable despite being higher than many others with NASH. Ie. My GGTs are in the thousands. Everyone I’ve seen since, on seeing those results has used the same dreadful and naive word - “stable”. They never considered doing a Fibroscan. I had to push for that right up to 2019 when I learned my liver had gone beyond Fibrosis and I was in full Cirrhosis mode. The constant bleeding was a subject that I could not let go of. So, I managed to persuade my GP to send me to one more Haematologist (the3rd). I managed to persuade him to test for Hughes Disease. Today I learned from this wonderful lady (who deserves a medal) for “Duty of Care” that I have indeed got Hughes Disease which has caused all the bleeding. Today my lovely, worried daughter asked me - “How do you feel about all this?” Mum xxx
I’m ecstatic . I now know I wasn’t deserving of the awful treatment I have had, where medics have put my bleeding and other problems down to my history of mental health. I feel vindicated by this alone. I feel grateful to that one specific Nurse Practitioner who has gone out of her way on my behalf. I am totally appreciative of my husband and 2 great, grown up kids who have suffered through my deteriorating symptoms. Now and only now can I get on with the rest of whatever time I have left. I don’t care if it is weeks, months or years. Now I know, before I move on that I wasn’t lying about my symptoms or suffering and they will now know it as well. Thank you all for your wonderful support. You have no idea how valuable this has been to me !!!!!
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Splodge60
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Wow! Your attitude to all this is so positive, we can only hope they have the life expectancy wrong, like so many things beforehand. It's such a shame that it has taken so long to get the answers you needed and confirm what you knew all along( in Spike Milligan's words, I told you I was ill).
I hope that your positive approach sustains you for what lies ahead and I hope that your future treatment ( that you receive) is kind and caring. All the very best⚘⚘
I feel your pain. I have this constant battle all my life as I suffered both mental and physical health problems snd as soon ad the know you have a mental health condition all proper care goes out the window snd you are treated ‘time waster’. . I have personally suffered kidney damage ‘basically lost function of a kidney. Because they wouldn’t believe i was having ‘urine problems’. I nearly had suffered sepsis but was hospitalised last year for peritonitis because I kept ringing my GP telling them of extrem stomach pain’ on the Friday he prescribed Fibrogel for ‘constipation. The Monday I was blue lighted in with the peritonitis.
You are treated like a third class citizen and even though they can undeniably see the results they brush it aside cause don’t want to touch you with a barge pole. THEN you get one kind person who will take your case on and won’t let them say no. Hopefully I have found that person in my GP too. I’m glad you have too. it is such a joy because you feel vindicated. I tell you what though you will not get any apologies from those who misdiagnosed. Just know and believe you know you’re own body (we live in it). THEY DON’T. There are beautiful souls out there you just have to catch them and hold on to them when you can.
• in reply to
Hi
I'm so pleased that you have found such a good, caring GP. This must have been a huge relief to you. All GPs should be like this and not the odd one or two!!! It is absolutely disgusting 😠. As you can see I have replied to Splodge. One consultant thought mine was muscular and brushed it under the carpet. I don't know where I would be now if it hadn't been for that one kind, caring GP at our surgery.
Take care and stay safe Lynne
Good morning Splodge60,
I am glad that you can come on this forum and share your story.
Hopefully it brings you comfort, and I am sure others will be inspired by your words.
Take care,
Trust9
Hi
As you know I'm so so pleased that your appointment was with this wonderful Nurse Practitioner who was so kind to you. With some of these do called consultants make you feel like you are lying. 6 years in August I had been referred to a particular consultant who was supposed to be one of the top consultants, he said your pain is muscular!! It wasn't until 2years later that I was told I had fatty liver caused by meds from my drs over the years, then Nash and then February this year compensated cirrhosis. As you know I have many conditions which cause me pain but this is nothing compared to what you have been through. It was one gp at our surgery who finally got the ball rolling, she was and still is absolutely fantastic with a lovely bedside manner. It's absolutely disgusting that you have been made to suffer by these so called DRS for so long it must have been such a huge relief that you saw that very nice, amazing nurse practitioner who is worth her weight in gold. I am just so pleased that someone has finally listened to you and actually believed you!! With all my love Lynne xxxx ❤️🤗🌈💜
We are so pleased you found a supportive nurse to help and listen to you.
Keep talking on the forum as well, you are a valued member and not alone.
Thank you so much. The Forum members and admin people (who keep us all in line), have been wonderful to me. Without the kindness shown to me on here, I would have given up (my quest to know the truth) long ago. All my health problems have undoubtedly affected me from a mental health point of view, especially anxiety, which controlled me, for a while. However, it was that same anxiety which spurred me to keep on fighting on my own even though it affected me depression wise as well. There is a real conundrum here which I t and they put ALL your physical stuff down to your mental symptoms. They will then not always take notice of what is really going on. They’ve already made their mind up that the problem is in your head. How do I know this? Because I worked as a Research Psychologist in the field of Health and Medicine. I saw it occurring time and time again It is a major issue in all medicine. It is worsened by liver related symptoms and this I know from personal experience as a sufferer of both mental and physical health problems. Everything I have been through, others may be able to learn something from. I’m afraid to say this but if you need to see a GP or Liver Consultant, please try your hardest not to make a big thing of your anxiety or depression and just concentrate on your physical stuff. Why do I say this? Because it is all over my medical record. They put it in every letter that is written about me and it becomes their justification to ignore you or anyone else with such a history.
It is a poor indictment of the medical profession that I find it necessary to say this, but I do know it to be true, based purely on my own experience.
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