Really bad day today after feeling semi human yesterday. Is it normal?..

[Hey___]

Hi everyone, I and still learning about my condition which is why I have posted a couple of times recently. I did get some positive feedback after my transplant assessment last week. I am no longer Decompensated and do not need to be on the list at this moment in time. I am really thankful of that!..I don't know what the future holds which is still unsettling but was told to carry on doing what I am doing. Only time will tell I guess. I am still learning about my own capabilities but the ailments I do have are unpredictable from one day to the next. Today being a particularly rough one.

I do hit 'brick walls' with my fatigue and keeping mentally assertive. This is frustrating and find myself agreeing to doing stuff that I can't manage. I think people want the old me back which is coming in dribs and drabs but not every day. My mind wanted to have a BBQ with friends in our beautiful weather yesterday but my body feels really rough today and I feel mentally strained because of this.

I knew the news from the assessment team was not a 'green card' to live a completely normal life but wonder if feeling good and bad erratically are to be expected.

Thanks as always for reading my post and for the knowledge and support that you give.

Take care of yourselves.

Mark

[Tia2021]

Hi Mark it is good news that for now you don't need to be on the transplant for now, sadly we do seem to have really good days, then feel so fatigued on others. As you say it is so hard to commit to doing things even socialising because you never know what kind of day you are going to have. I'm presently just focusing on healthy eating, drinking plenty of water but not too much and trying to build my stamina up to excercise. I have bought a fit bit and along with the support of my family I try and build my muscle wastage, my mobility isstill poor but feel little steps are better than none. You are doing so well to not need to be on the transplant list for now, we have to hold onto the positives however small they are.

Take care

Debbie x

[Hey___ in reply to Tia2021]

Hi Debbie, thanks for your reply. You are doing the right thing and eating healthy, drinking water and exercise. I will be trying that today.I would love to go with the flow with life and put this behind me but it never will be behind me.

So, I guess I need to be flexible with arrangements and begin to know my limits.I got 3 trains and a cab the other day and thought I was going to pass out..😶🙃...

I think most people around me think I am alright now and have suggested really strenuous days and weekends out. I hate saying no but need to at this moment in time.

I don't feel sorry for myself as it is my journey but thankful for your reply. Its good chatting with people who understand.

Take care of yourself.

Mark x

[Tommy62]

When your having a good day enjoy it and do what you enjoy doing and if you think your not having such a good day just take it easy hopefully the good days outnumber the not so good enjoy your good news and goodluck 👍

[Hey___ in reply to Tommy62]

Hi Tommy, thank you. I will take your advice 👍...the good and the bad...the ugly is that organ inside me!!..😁..All the best , Mark

[AyrshireK]

Unfortunately that is the nature of the beast, my hubby generally feels tired all the time. A good day is mere tiredness which he can still push through and do stuff (like his recent hill walking exploits) other days it's complete and utter physical and mental exhaustion where he's perhaps in and out of bed all day.

Planning ahead is nigh on impossible because like you say you don't know how you'll be from one day to the next.

You just have to make the most of those better days - even if you feel tired, push yourself to do some exercise. You need to keep your muscles, heart and lungs healthy because if the need for transplant does arise you'll be in a fit state that way to get through it.

Hubbies consultant rang recently about his MRI result and we were able to tell her of his hill/mountain walking exploits of late and she was delighted and said "It is to be encouraged!".

Getting out of doors even for a short stroll is amazing for both your physical and mental health.

All the best, Katie

[Hey___ in reply to AyrshireK]

Hi Katie, thanks as always. You are right, planning ahead is nigh on impossible. I find this really difficult to express to others. Although I nearly passed away in February, they look at all of my improvements and think I am alright. Truth is, I am not. In time I am hoping things further improve but nothing is for certain with this condition.

Loved to hear news about your husband's mountain walking. That's really positive and gives me hope.

I will take your advice and rest and go for a walk later. Thanks Katie, all the best to you and your husband.

Mark

[Chris-harris]

When were you diagnosed, what symptoms have you had? Im only asking as it has taken me roughly 2.5 years to feel somewhat "normal", chris

[Hey___ in reply to Chris-harris]

Hi Chris, I did have a Decompensated liver, which began in December and was rushed to hospital in February. I have ascites which is under control with diuretics, portal hypertension, varices and mild HE. I mainly suffer with fluctuating fatigue, dizziness, shortness of breath and concentration/memory problems. To honest Chris, I feel far from normal and sorry to hear about your lengthy journey to feel 'somewhat normal'. Best wishes, Mark.

[Liverandlife]

As others have said the variation is "normal". We plan ahead as far as it is possible in these Covid days, but always have a Plan B. In my experience I sometimes get very little warning of a problem and can quite suddenly suffer a major drop in energy etc.. I also have PSC which can randomly flare up so I need to know I have a bolt hole where I can sit it out. But it is worth trying to carry on as normal and not allow the disease to define your life. Good luck and all the best.

[Hey___ in reply to Liverandlife]

Thank you Liverandlife😊, I do try to not let this disease define my existence. But I do find that fighting to live a normal life sometimes becomes overwhelming and really draining. I guess I am a 'yes man' by nature and it has caused me to agree to things I struggle with constantly. Coming from where I was a few months ago, I should be grateful for where I am today and hold onto that. The thing is, if you have a broken leg then you know where you are at.. with cirrhosis you don't. Anyway, I will moan no more!😁 I think I will find that 'bolt hole' you mentioned... Good luck back to yourself and all the best. Mark

[Sunflower2021]

Hi Mark, It's great news that you are no longer at the decompensated stage. I was the same last year. I spent most of September to January in and out of hospital. I was also diagnosed with decompensated cirrhosis and nearly died. I am now compensated and have narrowly escaped being put on a transplant list. I relate to your feelings of normality. It is frustrating when you want to do so many things but your body has been taken over by a demon and you cant. But think how far you have got and how things will gradually start looking up. Stay positive, enjoy life, do things that you can do and when you can.

I get frustrated that my legs ache, some days they are fine other days I struggle. The other day I closed the curtains and thought I broke my arm in the process (not that I have ever broken my arm) but the pain was unbearable. Things like that get me down, but I just carry on.

The weather is nice now something we have all been longing for and now we can have friends and family around. Enjoy the sunshine lots of natural vitamin D, I am sure your friends/family will understand if you feel the thought of going to a bbq is exhausting, you can chill let them do the cooking, then go out for a stroll with them stay strong 💪and enjoy your day 👍😀

[Hey___ in reply to Sunflower2021]

Hi Sunflower, I hope you have been 'alright'? Its good news about your progress!! By the sound of it you have come from a similar condition to my own. Well done you for coming so far!... Its tough eh?!.. but you are doing it which is amazing for someone who nearly died. I was the same on the 7th of February and was told I wouldn't make it through the night..that was then and here I am..... very wonky but alive and also compensated.

You stay positive too!...I know that frustration that things don't work like they used to. Do what you can and getting down sometimes is understandable... your body and mind have been through turmoil but keep going!...

I was taking vitamin D tablets btw....yuk!.. they made me nauseous so I am getting some sunshine!.🌞 Let me know how you are getting on!... stay positive, you are going to be alright!..Mark