For those of you who know me, I’ve been ten steps ahead of my Consultant through my whole story. Thank you so much to kind and caring Forum members, plus the extremely wonderful nurses who man the Help Phone-line.
My Liver and I have been gradually worsening over a three year period. 2003 I was diagnosed with NASH, which did not cause too many problems at that time. I saw the Consultant till 2008 when he discharged me, despite my LFTs still in the extremely high range between 1000-2000 (GGTs). All medics from that point on, when they checked, just kept saying my LFTs were stable!!!!! No they were definitely not!!!!! They were lurking inside my body doing who knows what harm?????
Started worrying seriously about end of 2017 as symptoms of liver disorder began to creep up out in the open as I struggled to cope with each new day. I can only compare it to a wide open field which has lots and lots of struggling little moles popping up for AIR wherever they can get it. That air is something they struggle to grasp. Like these precious little creatures are akin to the bits of my body, struggling to cope with what seems a hostile environment.and leaving me with many significant health difficulties and challenges.
In January 2018 I asked my GP for referral back to liver man. I got my appointment in November that year. I pressed him to let me have a Fibroscan. He did not want to !!! Sequence then went like this:
28th Jan 2019 had the scan. Saw result of nearly 30kpa but Tech nurse not allowed to tell me.
6th Feb 2019 saw result of scan on Patient Access. I was expecting Fibrosis, but no, it was definitely Cirrhosis. I knew this wasn’t good but not why, and, being scared witless, tried to see my GP ASAP as she was only one I knew in the practice, but was told had to wait 3 weeks, so, I put the phone down on Receptionist in frustration. Bean angry with myself for doing this!!!!!
Complained about GP practice, for putting such a diagnosis online and no-one talking to me. I also complained about Consultant for not ringing me, at the very least. This assertive ‘new me’ was a challenge borne out of Ammonia toxins building up in my blood. It is not the ‘normal me’. HE has a lot to answer for.
About 24th April 2019, (3 months almost since the scan), I finally saw the Liver man (a Consultant Gastroenterologist). in Clinic with someone there overseeing, because of my complaints.
27th April 2019, he rang me at home to tell me I also had HE as well as Cirrhosis. That explained a lot of my symptoms!!! He prescribed Lactulose.as a solution but it was not enough.
The moles were now sticking up for air, more and more frequently as number of symptoms increased.on a daily basis.
July 2019 saw him again.and he added Rifamixin to the pot in an effort to be more helpful to me. It is still not solving things or being helpful but felt I couldn’t complain about him anymore!!!
From that date to today 18th March 2020 I have not seen him. Rang his Secretary for the umpteenth time, but she has learned the art of fobbing me off with excuses. I swear my Consultant has been on more holidays than days in the year!!!!!
5th Feb 2020 those little upstart moles are surrounding me and overwhelming me. My QoL has deteriorated so much and I have no professional liver ‘expert’ with whom I can Share my worries and concerns EXCEPT those lovely BLT nurses who gave solid advice and help.
Only 2 friends know a quarter of my story and Lynne (bless her) has been more than anyone could ask of her.
Now, today though, I have most of the symptoms of HCC. Only jaundice hasn’t got me yet. I finally saw my GP today for first time in a year. She now has got the message but very little knowledge of what I have been through. She examined my tummy well and knows the signs and symptoms as well as I do.. She said she would try and contact the Consultant or his Secretary to see me quicker in Clinic as she doesn’t want me in hospital at the moment and nor do I want or intend to go!!!
Once I get the diagnosis of HCC confirmed, (and because of my current health problems and severe limitations), I can then plan things for end of life care. I have already asked her for a referral to Palliative Care but my GP is procrastinating on that one. And, that is another subject perhaps we can all discuss at some point?????
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Lastly, for anyone who has any interest or advice, can I just say, that, before I leave this mortal coil, I wish my story to be of use and help in the Liver world. I have typed copious notes on the whole story and it comprises a mountain of pages. Not sure what or how to deal with it yet as my story has not quite ended.
I hope to see the Consultant soon if only for a definitive diagnosis and referral letter to Palliative care. I have had an appointment for 2nd April although asked to see him in January 2020. That was 6 months after last visit. It will be 9 months if and when I shall ever see him. Surely he has a team to cover his absences?????
Some of you may also be wondering how do I keep going. Truth is -I am truly blessed to have a strong faith. So I know. Where I am going when I pass over. My gratitude for such knowledge far exceeds the trials and tribulations of this part of our eternal journey.which I know will soon end and I will be able to move on to something better and brighter and ultimately more joyful. In
I honestly hope this story helps some of you out there who are struggling with questions but getting no answers????? Also, every time you see a mole hill, just be grateful and thankful just because you can see it. Xxxxx
Written by
Splodge60
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I'm so so sorry you have been and are still going through this awful situation you find yourself in.
You are such an inspiration to us all. I don't know how you have coped with everything that has been thrown at you. Now your GP us in your case, I feel you will see someone very soon. If you need to talk I'm here for you. With all my love and hugs Lynne xxxx
Splodge, that all sounds very sad and, to say as a massive understatement, frustrating. HE is one of the worst effects - imho - of cirrhosis. Even when you think you are in an OK stage others around you will tell you later what a “funny” person you have been - “funny” includes being short tempered with anyone and everyone - yes I have had my run-ins too especially at the pharmacy....
Your analogy with moles is very apt, very understandable to me in retrospect. When I was ill I always used to count the number of molehills on my daughters garden when I cut the grass! Why?!
You may have said before, if so I do apologise, but do you take anyone with you when you see the GP or Consultant, rare though that may be? I found it was only when my wife (but it can be anyone really) came with me that I seemed to get treated - what I would call - seriously.
I really hope you get some much better treatment and more answers on the 2nd April.
To answer your question, I have a friend who was willing to go with me but who now is concerned about going near any hospital. I do understand her worries. Add to the mix the huge problem with the Coronavirus, my 2nd April Appt may well be cancelled anyway. Actually, I may get a phone call from the Consultant or, going on past experience, I may get nothing! My thoughts are a bit like the toilet rolls fiasco!!!!!
On the one hand it seems selfish to even consider bothering busy medics, hence, perhaps we should learn to make do with cut out newspapers (I kid you not, I remember that period of my life vividly). I know the ultimate outcome so why bother over-tired and over-stretched and busy NHS Consultants. On the other hand, I have had to make do for so long with scrappy bits of newspapers, (hardly any support and information), I just feel a need to want some strong but soft tissue and hang the rest of you!!!!
Well, I guess I’m not really like the selfish sort who have filled up trolleys with toilet tissue. I Will ‘make do and mend’ as the stoics among us will say. It is all part of life’s rich tapestry. But given my situation, and neglect over the years, lack of toilet paper is going to be the least of my worries. As with every person on this forum, we are not only having to ‘self isolate’ but we are also having to become totally self-reliant, for all our information, and not expect the same help from the medical profession as we have had previously, as all doctors and nurses will be needed elsewhere.
Thank goodness, therefore, that this BLT Forum is still working hard to help us with our queries and questions. Thank them constantly for all their efforts and Forum members, who are a rich and huge source of knowledge and wisdom to keep us going. Don’t get too hung up about the lack of toilet paper (information), throughout the NHS. Don’t expect anything from them and you then will not be disappointed.
I know I will always be enormously grateful to the Forum for all their help, and just hope that they can continue to keep up with us all, during this period of national crisis. Remember, if you keep on ringing up those hardworking nurses with things you could find out from other Forum members, then they too will run out of steam and there will be no toilet rolls left for anyone!!!!!!!
I think the most important thing for you right now is to make sure your consultant follows up your cirrhosis with scans and bloods every 6mth as they are required to do!
At least they would be on top of any new progressive issues that might crop up!
You quite clearly are extremely worried about new symptoms that cause you anxiety plus maybe having the bad luck of getting no real answers from your GP or consultant.
I think your next visit you need to discuss your worries and concerns with them..at least it will reassure you that cirrhosis can be managed in a way to be able to let you deal with your life in a more positive way!
Sad to read that for some people the anxiety that can be caused through lack of communication from their GP or consultants can cause such distress to patients.
Make sure you get that reassurance at your next meeting and explain how you have been feeling over the last few yrs because of all this!
Hope you can get the answers you need to reassure you that this can be managed with the right support from your consultant .
Oh Dear Splodge, I knew you were having a bad time, but to read your story now, is very alarming. You have been treated treated appallingly by the Dr's, and no words can express my emotion, and frustration at your sad situation.
I'm glad you have your faith to keep you strong, as I do, and I hope and pray that you will finally get the help you so richly deserve.
You are in my thoughts and prayers,
God bless you,
David
Take care, you know where Kirsty and myself are if you need us
You’re so inspirational, and strong making so many of us so thankful.
I wholeheartedly agree with others and there very true and heart felt comments. Just wish there was something else we could do or say during this very difficult time you are having to tolerate now. We’re all here for you regardless, bless you. Always lovingly in our thoughts and prayers 🙏.
I do appreciate the kindnesses expressed by you all. There are a couple of things I would like to say. Firstly, I am 70 years old and a retired Psychologist. As some of you are aware, I also, like you, have a few issues ongoing with my liver.
Secondly, because of my specific liver and mobility issues (which are written about elsewhere on the Forum) I did not feel to have a lot of value to this world in any practical sense. I was, however, blessed with an ability to write fairly articulately. Hence I have written lots and lots of stuff over the years and, almost all of it non-fiction. I’ve also had a number of papers published in academic journals in years gone by but, I have never earned or been given a penny for anything I have written and nor have I asked for anything either. My motivation for every contribution I’ve ever made, has been purely altruistic. There is a minor ulterior motive as well - whilst ever I am using my computer, and my head is full of developing thoughts, all my pains become tolerable for the times when I am thus engaged. There are some occasions when it all gets too much but, I am reluctant to accept that a lifetime of difficulties should not have a purpose, a value, a level of significance and meaning that one can pass onto others. This ‘inspiration’ hit me hard when one2one postulated it earlier today.
I note today, on the Forum, that there are reports of unscrupulous people paying for stories, etc to Forum members and this has upset a lot of us. I would appeal to anyone’s good nature if they are thus approached, to tell them to “get lost” so to speak!
If I do anything at all before I depart this life, it will be to “donate” my story to the BLT, as I am assuming this charitable organisation is bound by helping people, although I am aware that all charities ask for monetary donations simply to keep them afloat.
I do not have much money and I don’t care either. All I care about is helping people. I do not wish to be unkind to anyone who is is motivated largely by money but it is not my way.
However, if all I have ever written about my Liver “dramas” can be used by the Trust to create a meaningful book that will be of benefit to the Liver community financially, and to all patients dying and suffering ini it will be a worthwhile use of my time and efforts.
I wish I had the time to compile and edit the contents and, even better, incorporate some ideas from Forum members to add to it, then it could become a useful and beneficial source of help for all liver disease sufferers!!!!! Of course, it would need official sanction from the Trust who may wish to hold the copyright and it would need also a talented writer or writers from among the Trust or Forum to expedite it and treat the contents with huge respect.
I would personally not wish any individual to gain financially by being engaged in such a project - only the Trust.
It was lovely for me to hear that a Forum member (one2one), considers me to be inspirational. I have spent 80% of my life struggling with self-esteem issues. This, therefore, would be my Legacy to the Trust and also to you Forum members who also are waging your own battles to feel that your suffering has not been in vain.
I would love to hear from anyone who has comments to make on this ‘inspirational’ idea, which was, literally borne out of one2one’s earlier comment to me.
We all have something to offer this tortured and suffering world we are unfortunate and yet blessed to be a part of. Let our stories come together in a meaningful way and thus give some validity to them, as well as have a joint value towards the emotional, physical and mental health needs of all who suffer from the varieties of liver diseases emerging and being treated for serious consequences of multi factorial issues of a similar nature to the many who will come after us.
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