hi all, I will apologise in advance because I am having a wobble 😥 …..I don’t expect anyone to reply as you have all told me the same thing over and over, you prob think I ignore your advice and reassurances, but I truly don’t, I just feel upset and scared , I have been good all week but tonight it has hit me…. I still have not heard from the hep people, I have phoned twice because I just want to know how to go forward regarding my meds etc, but still not heard a thing from them, I realise it’s only been about three weeks, but for someone like me that seems like forever 😥 ….. I stupidly googled severe liver impairment again and everythnig reads as liver failure , it made me realise that it’s too late, no matter what I do I can not cure myself 😥…. My bloods were not up to date , they were done six months before the scan and only basic liver ones, how can they tell it’s severely impaired, is it because of the high 21.5 kpa alone , or does the scan show pictures of damage as well, im scared I will die before they even give me an appointment 😥 I had heart issues last year with spiking blood pressure and fast pulse over 180 , I now think this was the liver problem causing it , im due to have echo cardio gram next month ( waited a year) but im so scared to go, what if they find a heart problem as well 😥 also I’m under the glaucoma clinic as a high risk due to narrow angles, and have had to phone them twice for my recent results , again no one is getting back to me, im at guys on Tuesday to discuss my WDEIA allergy , I just feel so drained , I feel like giving up , sometimes enough is enough, I find this all so mentally torturing because I can’t speak to anyone, apart from my saviours, you lovely peole on here xx
struggling today : hi all, I will... - British Liver Trust
struggling today
Sophia, I haven't been on the site as I've been wobbling too just lately. I suppose you have to go through the bad days to appreciate the good days. I know though all sorts of things go though my mind and it sounds like you are the same. I am on my own and all I wish for is that my ex husband and I were still together. I love him still after 12 years. He would have given me strength. It's terrible that you can't get answers especially as you are so so upset about it all. I wish I could make you feel better and make you smile. I'll go look for my magic wand and make us all well again. (If only 💕) I think of you every day and always wonder how you are. Please take care. Jilly.
oh sweetie, bless your heart I am so sad to hear that you also feel like this, I totally get how you miss your ex husband. Having strength from another really helps, I lost my partner a few years ago, he was my soul mate and I kvow his support would have got me through this, We will just have to look after each other, message me anytime you need a shoulder and I will be there…. Promise xx
Oh sweetie you're allowed a wobble.Trust me, you won't die. They will come back to you I promise. If you struggle then contact your local PALS office at the hospital and they should be able to kick things up the bum for you.
Do NOT Google anything!! It causes unnecessary worry. If I believed everything Google said about me then I'd be dead by now, I'm absolutely far from it and actually kicking arse at the moment!!
I would suggest having a chat with your GP about help with your anxiety because it's not helping your frame of mind really is it. That can be one of the biggest barriers to feeling well, or at least not catastrophising because that it so easy to do.
At least you know we're here for you, we've all been there got the t shirt, and will continue to be there for you xx
thanks hun, I did consider pals, but I also appreciate how stretched the nhs is and should perhaps wait a little longer, the thing that worries me is what if my high kpa was due to cancer, it could be in my liver and I don’t know, especially as I keep letting back pain right hand side where the bottom of the bra sits, I really should not google as you say, funny thing is I’m always telling others not to 🙄, thank you for replying to me hun, I really appreciate it xx
They do check for cancer markers in liver bloods so honestly don't worry. They will fix you.Some good advice here regarding yoga and meditation. I was properly cynical but have it a go and honestly it's got me through the absolute worst.
Keep going, you can do this x
hi Sophia, I go to yoga classes a few days a week. The message I hear in class over and over is to remember that you are exactly where you are supposed to be in your life right now.
I try to do one positive thing for myself every day, even if it is just making a good healthy meal, going for a walk, or growing a plant.
Everyone on this planet has times of doubt and fear. Make a list, do what you can, and give it a rest. Don’t dwell on what “could be”….anything “could” be for anyone. It’s not helpful in solving your problem
Spend time on yourself. Small positive steps and daily gratitude is the way to success Create new healthy habits for yourself. You feel better and then feel more better 😀
You can do it.
I'm a yoga bum too, it's helped me a lot 🙏
Great to hear 🙏🧘♀️
I think I'm going to give it a go. What do you wear in classes these days. Haven't got a clue, but if it helps my mind body and soul I'm in.
Hey FPal, No shoes or socks.
Women wear your normal yoga pants or shorts and tank top or tshirt.
The guys usually wear shorts and a t shirt.
After going to many classes you get pretty buff. In advanced classes some of the guys choose to take their shirts off the latter part of the class (which I don’t mind at all 😉😅).
Whatever is comfortable. But you might be sometimes upside down ish so you don’t want a shirt so loose that might get in the way. 😀
It is amazingly helpful in so many ways.
Cheers mmm there sounds like there are other rewards too 😂😂 will look for some classes near me today.
🤣
I just wear leggings and t-shirt. I did buy some yoga socks with a grip underneath but that's just because my feet are always cold 🤣Whatever you feel comfy in basically, remember you don't wanna be hoiking up your pants every two minutes 🤣
really!…. 😆
thank you so much, you make total sense and sound so in control mentally, it’s true not to worry about ifs and buts as even healthy people do not kvow their fate, ifs and buts affect us all, my aunts cancer has just returned so I guess I’m just in a very emotional place right now, but honestly your message really helps thank you xx
🥰
Morning Sophia anxiety is terrible I know..B4 your fibriscan did you fast for 6 yo 8 hours. Did you avoid alcohol 2 weeks b4
Yvonne
hi love, I ate a banana and satsuma at 9 am and then had the scan at 4pm so I would of been ok , im just so scared about my numbers and scared how my bloods will be when they finally check xx
Well it can't be that then..I do understand ..I had so many contradictions in diagnosis..example I was told by digestive specialist that I have cirrhosis but no scarring..that can't be ..been seeing her for 2years aprox my liver has improved no end I got so fed up because no scarring means no cirrhosis. She said its her opinion. I'm in Spain last Dec I paid privately and had a fibroscan 250 euros ouch.
Diagnosis F1 F2.not cirrhosis.
I've not had any wine since Christmas as I want it to improve my reading's and hopefully go away so I'm waiting on my next scan ultrasound..then I'll decide if I get another fibroscan.
The point I'm trying to make all be it in a round about way.
Is once you get all your results speak to your specialist..make a list of questions.
Don't leave until you've had and understand answers. Then you can work on improving your situation..which you can do . After the initial shock 😲 you can always make an improvement..like many on here have done. Wishing you well ..x
thank you so much for your reply, it does seem very contradicting as you say, I will definitely ask all I need to ask, once I get an appointment, then hopefully I will think more rationally xx
Hi Sophia, I’m sorry I didn’t see this post yesterday. I hope you’ll have a better day today. The waiting is really hard, it’s not surprising that it’s getting to you. I know GPS get busy around bank holidays but Tizzy is right, have a chat to them about how you’re feeling. You’re a ‘complex case’ so you are definitely entitled to see them no matter how busy the NHS are, and they may be able to chase up your consultations.
I also found yoga and mediation really helped. Just being in that gentle calm space helps even if you can’t do a lot of the poses! 😂
My friend sent me this one to start with m.youtube.com/watch?v=kFhG-... She insisted that she wasn’t calling me elderly but new I hadn’t excercise for years and this is really gentle. Even if you just watch it you’ll feel better.
Have a good day, do something nice to distract you x
thank you my lovely, you made me smile, my other half always used to call me a complex little thing (because of my thought processes lol) he always said it in a nice fond way, he is no longer here but you brought him to my mind which is lovely, I do think yoga sounds like a good plan, so I will look into it , thank you and for the video xx
Sophia I empathise with you.
When my first US report suggested cirrhosis I was devastated and couldn’t think about anything else.
But fibroscan came in at 3.4 kpa and was so relieved, as I couldn’t do much more for lifestyle adjustments having already lost 10 kgs and given up alcohol.
You can direst your energy now to losing weight, eating healthy and exercising, even researching this rather than the disease.
Give yourself 6 months and you will have improved your liver. A lot
thanks love, I am already losing weight and upping my exercise so I will keep going, is it really possible to improve such a badly damaged liver though, I do hope so, well done for helping yours and for the weight loss xx
Hi Sophia, I’ve just seen this.
You have done absolutely the best thing by reaching out. For too long before I became very poorly with an A.R.L.D I never reached out and for too long after I came out of hospital I couldn’t reach out. The thing is on here and other similar platforms you are able to feel SAFE. People like myself completely understand why you had a wobble and will guide you through this place you find yourself in.
I know it’s a cliche, but take every hour and day as it comes, knowing that you have friends who will help you.
Above all, keep looking at the light at the end of the tunnel, it will begin to shine brighter very soon.💙💙💙
aww hun, I love this message, thank you so much, you are right, I do feel safe with you all and I know you understand totally, as for the light at the end of the tunnel, that gives me hope, thank you xx
hi Sophia it is scary I thought I was going to die when I first found out I had a melt down the same day I had arranged a new home for my pets phoned the pension company to withdraw my pension everything I just couldn’t see any future what’s so ever so I came on here and slowly but surely felt 100 times better your left alone while you get appointments and results but people on here know loads of things though experience I was 9 weeks before I had my first hepatology appointment recent scan and up to date blood tests before that they were looking at a scan from 2 years before and it was only picked up by the the person who was doing a endoscopy I had low platlets and low white blood count and my own doctor still didn’t investigate keep your chin up and let’s hope for better days xx
thank you, I know how hard you have found all of this as well, but well done for having the sensible moments in between, it’s those times that we need to hang on to, the positive bits isn’t it xx
I completely understand, you can do this, at the start of my diagnosis I was going mad cause it seemed nobody was doing their job! I ended up burning myself out trying to do everything myself, thinking and telling what my GP needs to do, social services, mental health team nutritionalist the list went on and on. Then I exploded, I told everyone to F***off and leave me alone to die, I just wanted nature to take it course on me. But in a way that did me good it allowed me to take a breath, breath and sleep, so I could get my thoughts together. I needed a care co-ordinatior, which you need to phone the reception at your GP and request to speak to the Social prescriber. They were great chasing info for me and secretary’s and I have 2 people i now only speak to, as I was finding no body was speaking to the other people and I was repeating my self all the time. Ur this was my care-cordindator can keep everyone in the loop. It is a support you should be using. It is so frustrating when someone just simply don’t get back to you and end up taking it personally (well I did) but I found this way works better.
Take a break and and breath clear your mind because your getting caught up in a whirlwind. Take my advice please cause stressing will make you more miserable, things will all fall in place so don’t worry. There might still be a few bumps but they are manageable. Get in touch again if you need to talk xxx
thank you, I really will try not to stress so much, it does not help at all does it, I agree though, sometimes you have to snap to get strong again, I admire all you strong people on here xx
Your not alone and I can tell you from personal experience what you find on the internet can scare a person to insanity but the road your on is not all doom and gloom. My partner was gone and I had to face this alone or so I thought and then I realized God was with me always,. Take a deep breath and make a small plan to do 1 good thing each day for yourself or in your community. try yoga, listen to music, go for a walk, smell the flowers, enjoy nature . God loves you, your liver can heal itself. Even when the out side of the liver is fibrous the inside can still work fine. Smile you can do this. Your in my prayers,
oh bless you, thank you for your message, and for giving me some hope xx
Hi Sophia
Sorrry ti hear you are stressing .
I’m had a high liver function blood test and was referred to Hep. They booked me a fibro scan waited 6 months for that and then another four months for an appointment, which I done bloods for two weeks before. Everything was absolutely fine, and they discharge me. Apparently your blood and fibrous scan can go up and down if you tried to maintain exercise and good diet, they can be dramatic changes in fibroscan results.
during the 10 month, I’ve stuck to healthy diet and exercise, but I was very very stressed all the worry for nothing.
try to keep yourself occupied and not worry too much.
I wish you well xx
oh bless you, sorry you were stressed, but so glad that all was ok for you, my kpa was 21.5 so that is not ok unfortunately, I do hope the fibro score will go down, but I’m just always unlucky , I am doing all I can to get healthy so let’s hope it works even a little bit xx
I thought I was dying too. Breaking hair, heart pain, tired, out of breath, feeling low, etc. This was progressively getting worse over a year. Finally got blood tests and I found out I had a seriously low iron deficiency…not dying. Best not to be a Google Dr, it causes more pain than solutions xx
We all must wobble, occasionally. Instead of looking up what's wrong with me I've been focusing on what I CAN do. Watching a lot of informative videos on diets for liver health, trying to spend at least a few minutes a day doing something in the fresh air, out of doors (when possible), and doing something for others. It seems to make me feel better, sometimes for just a moment...but every little thing matters. I agree, though. It's all so frustrating with the timing and limitations of the medical community. Best of luck to you and keep your chin up.🤗
me too Livaa. Sounds like my approach. 😀
Hi Sophia 1968 I'm a bit late to all the replies, and you might have had your results by now, I think looking at " DR GOOGLE " is probably the worst mistake anyone can make, I'm not that clued up with medical jargon myself and the only person you should listen to is your doctor or the specialist your under, we can worry ourselves off the planet with unnecessary stress with something that's not even happening, and our health conditions can be treated if and when the results are in front of our medical team,some people are already of an anxious type of personality, and if looking at Google has highlighted how you feel, it will put your senses at a heightened sense of alert, it's how some people are, I used to be a " worrier " type person myself, as I had many issues in life, but I had to have counselling to sort out my ptsd and my alcohol problems, some people can jump to conclusions why I ended up as an alcoholic, but that's another story, but I'm sober for 11 years, I hope you find life is calm and you get your positive results in your favour, best of luck
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