Back in hospital 😢

[bushburywolf]

Hi,I don't post very often but always watch and read, it's amazing all the support you all give.

I started this journey around 3 years ago, I have cirrhosis of the liver, keep getting told I'm decompensated,then compensated, now decompensated again 😢,I was admitted 5 days ago, In severe stomach pain, plus horrendous pain around my double hernia , extremely swollen legs, ankles and swelling in my stomach, slight blood on paper, so I was rushed in by my GP, scans, blood tests, camera down, pumped full of furesmide, magnesium and iron on a drip, the swelling has started to be reduced, samples taken from stomach, lots of pain relief,

They were going to operate on my hernias but stopped after a late CT scan,then back to the ward, to get the news we won't operate as you may not wake up from the surgery, so pretty much said that I have to live with them in severe pain, because of my liver condition and state,

I have done everything that they asked of me,diet, exercise, lost weight and they were extremely happy but all of a sudden everything changed,

They have mentioned that I will need a transplant, but no mention of any list, feeling rather lost after trying so hard, never been a drinker, tablets for other conditions and diabetes are my major reason, anyone else going through similar

[Yellowsydney]

Hi, sorry to hear all that you are going through. Many people have hernia that cannot be operated on due to cirrhosis as it would be very dangerous. Before you can be out on the transplant list you need to be referred to your nearest liver transplant hospital, there are only 6 in the country, go through a tough assessment process to make sure you are ill enough to need a transplant but for enough to survive one of the most complicated surgery there is, you are not just put on the list. I'm sure your doctors are working hard for you, you just don't always know it.Good luck

Hilary x

[bushburywolf in reply to Yellowsydney]

Thank you for your reply, never dreamt I'd be in this position, I will talk with the liver nurse at the Manor hospital,I know that the QE in Brum is the closest one to me, doesn't make much sense to me, they know that eventually in this situation your liver is going one way, but you have to be really ill to get a transplant but not ill enough to survive it,Hope you are well Hilary and thank you for replying Kevin x

[BigJimmy45]

Good luck to you brother. I feel your pain and hope you get better la 👍

[BigJimmy45]

we are all fuck ups with something wrong in our brains which makes us addicts! I have cirrhosis, TIPPS stent, HE etc etc but earlier went to shop and got 12 cans, just listening to fat boy slim on the tele and feel great. What is life all about, feeling good or feeling unhappy and anxious? I bang my head against the wall trying to knock some sense into it but it never works. I have just been on website to join crown green bowls in Bangor. Hope they accept me 🤪😬

[J4ck1369 in reply to BigJimmy45]

I don’t think posts like this are helpful to anyone who is reaching out in the group for help. I’m sorry you are going through a tough time but if you need help then just ask in your own post

[J4ck1369]

bushburywolf, I cannot offer any experience re your own circumstances but am sure others have and will offer constructed help. I did go from de-cmpensated to compensated. Its not easy but all you can do is more of what you are doing and I’m sure you will benefit in the end. Keep reaching out for help. Good luck 👍

[bushburywolf in reply to J4ck1369]

Thank you for your reply, it's hard to get through each day,I kinda of understand what he says just get on with it, but it isn't that easy, hope you are having more good days than bad

[J4ck1369]

it took a while (please read my prev posts) and I didn’t have as many other medical issues as you, which I why I can’t really help much with that. However when you start looking after your internal organs then things must surely improve. Trust me I know exactly how hard it is day to day, but please just carry on doing your best and you WILL improve. Sometimes (& I’ve been there) when you don’t see much progress, its tempting to think ‘whats the point? But there is a point and once you feel better, you will be glad you put the effort in 😀

[bushburywolf in reply to J4ck1369]

Thank you 🙏, I love how you have turned things around, well done and that is a massive credit to you,Plus it gives me hope,I thought I'd turned a corner but then dragged back down, but I will get back out and try harder again, keep up your amazing work x

[J4ck1369]

i know it sounds silly, but I find fresh air really helps. If i have a day when I feel sluggish or a bit down, then its usually a day whenI havent been outside. I don’t have a garden and sometimes it feels like too much effort to bother to go out. But, when I do make the effort, It really makes a difference. Just a 30 minute walk is all it takes or even sitting on a bench people watching, having a coffee or reading a book,

[bushburywolf in reply to J4ck1369]

Thank you, that makes a lot of sense,I walk around 10 to 12 miles each day at work, love going out for walks with my dog, it's been hard to get motivated for the last few weeks but I will be back at it when I'm back home, just feel a bit deflated that I have tried to do the right things but my liver still doesn't seem to want to play along