How’s Braveheart65 : Hi Braveheart6... - British Liver Trust

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How’s Braveheart65

Dogbot profile image
10 Replies

Hi Braveheart65 just thinking about you wondering if you have any relief from the pain your in 😀.

Stay Safe All

Dogbot 🐶🌈

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10 Replies
Braveheart65 profile image
Braveheart65

Hello Dogbot and thankyou for the post.

Here’s an update I wrote this morning on another thread, this is pretty much where I am:

“I had transplant approx 7 wks ago, followed by aspiration for fluid collection where my gallbladder used to be and associated courses of antibiotics.

I’m just an incredibly stretchy bag of bones. My stomach, well, let’s just say I can’t feel a single muscle and I’ve still got staples in from latest aspirations. I’m using silicon gel but can barely bring myself to look at the scars let alone touch them as they make me feel queasy. But...... I did wonder if I will ever feel like “me” again.

I want to feel the sun on me again, I want to be able to breathe/move without wincing and I want to be able to sit without my tail bone causing such pain.

It’s been 7 weeks already and I’m not much further forward.

My post won’t help you feel any better about yourself and I’m really sorry for that. But I’m really wondering if you ever do feel better?? I’ve never had surgery before so have nothing at all to relate to but after 7 weeks surely I should be making progress. I can’t cough, laugh......this incredible feeling of tightness in my abdomen makes me feel sickly.

God, I’ve just reread my post so far as I’ve written it and it’s so “needy”-it’s just not me at all......but yet here I am still posting it. Maybe I should entitle it “confused.com”.

Sorry folks, normal service will resume......please God tell me when!!!!”

So there you are Dogbot, I’m not doing well physically or mentally. I’m really sad. Sorry I can’t be better company.

jazzjam profile image
jazzjam in reply toBraveheart65

I can’t say anything about your surgery as I have not had it but what you have had done and the infection and you still have staples in! I am not surprised you feel pain, discomfort and are not hungry. Please try to rest as much as you can, your body will be using so much energy helping you heal. Can the dietician give you some more advise?

Dogbot profile image
Dogbot in reply toBraveheart65

Hi Braveheart65 I think you should talk to someone who has had a transplant I had a operation last January and got fitted with a Stoma bag because part of my bowl went septic and closed up was in a lot of pain but after the operation it took about 3 months for the cut to heal, now a liver transplant is a much bigger operation. Maybe you should consider talking to your transplant team or co-ordinator about a bit of counselling because I think you sound like your struggling to come to term with it all it’s a lot to take on board good luck the wife and I are sending our best thoughts.

Stay Safe All

Dogbot 🐶🌈

Braveheart65 profile image
Braveheart65 in reply toDogbot

I’m at the hospital again on Tuesday so will follow advice and let them know. It is overwhelming for sure, my mantra is now “keep breathing.....just not too deeply”!

There are folks much worse off than me, that’s what I say when I feel really miserable....

Thankyou both for taking the time to post.

Kristian profile image
Kristian in reply toBraveheart65

Hang in there Braveheart. It does get better, honest. 🙃🙂🙃

Braveheart65 profile image
Braveheart65 in reply toKristian

I believe you......😇

Ssrk profile image
Ssrk

Hi hope u are in good health. I been in and out of A&E twice now. Got inflammation and infection, but when there they don't seem to think nothing is wrong. Tried telling about the pain I am in all day. Now I having pain but getting loose stools (not just in stoma). Been on antibiotics but still no better.

Braveheart65 profile image
Braveheart65 in reply toSsrk

I’m so sorry to hear this as I know it’s no fun at all what you are suffering.

When I had the transplant and was desperate to get home I recall the surgeon telling me that if he let me go too early I’d end up waiting 6-8 hrs in A&E for re-admission in discomfort with no guarantee of a bed whilst in pain. So you being there twice must be hellish.

It is a double edged sword - reassuring that they are not worried as it’s a common occurrence after surgery, whilst at the same time very distressing for you going thru it in the here and now.

Are you on pain killers? Are they helping in any way?

I sincerely hope you get a sleep tonight for some relief from your situation.

Ssrk profile image
Ssrk in reply toBraveheart65

Thanks for your reply, was given antibiotics which the hospital did not, I had to ring GP but nothings helping. Pain I been on morphine. As soon as u say that the outcome becomes so different.( Can't give u anything). So I continue on but I hate being this person.

Braveheart65 profile image
Braveheart65 in reply toSsrk

I’m really really sorry for you. I always thought if antibiotics didn’t work (ie you didn’t feel better in 2-3days after starting then) that they were not specific enough for the infection. But with this lot if anti biotics it took about 5 days of a 12 day course before my temp etc improved. So do finish the course.

Tell your GP if that’s who is proving more useful at the min that morphine isn’t working well for you, ask them if they can suggest an alternative. Codeine works good for me pain wise but it makes me severely constipated do I don’t take it; morphine takes the edge off my pain but doesn’t tend to make me constipated. There are lots of different painkillers.

I wish there was something more I could suggest but I know from experience that when you are where you are at the min, nothing other than being knocked out/sleep really provides relief.

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