Hey fellow liver sufferers and carers. I hope life is manageable for you all!
Basically I have Cirrhosis that decompensated liver nearly 2 years ago. Symptoms were jaundice, ascites ,sarcopenia, HE but got through this near death experience. I am now compensated. I went to the Royal Free last year for the transplant assessment and was thankfully told that I didn't need to be on the list for my physical recovery.
However, this wasn't 'a green card' to go and live this happy life without a transplant looming. What can I say...this is tough on my body and mind!
Now I have DVT back which previously caused a clot to go up to my lung (embolism). I am back on temporary blood thinners and I am awaiting an appointment with the anti coagulation team at the hospital which is in about 3 weeks. I have to inject myself with Enoxaparin but was previously on Warfarin.
I had Grade 2 varices before and concerned.! Where is my Gastroenterologist? A letter has been sent by the Emergency Assessment doctor. Its the waiting that is frustrating.
On a positive note, I am sober and have rebuilt my life in positive ways.
Peace and gratitude to you all!
Mark 🙂
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Sorry to read this. To reassure you - you will have a medical record which will record all treatment you have. This may be electronic or it may be paper still, it depends on your hospital. Each doctor that treats you will have recorded your treatment. With drugs like warfarin they will examine contra indications carefully. I also assume you will have raised your liver condition as well, which will have prompted them to check your history. Your specialist treatment at the Royal Free will also be in your medical record through your discharge letters. They go to your GP and your hospital consultant. If you are really worried then either contact your GP or your hospital consultant through their secretary.
Well done, do you still have varicies? If so the injections are much safer ( I know they sting and it’s not nice stabbing yourself lol, think about all the diabetics lol). Keep your focus on healing your liver ( I’m now 8 years since decomp and still I struggle at times) The doctors are all trying their best, I think the country has forgotten that the hospitals are really struggling with Covid and their staff having to isolate and they are incredibly under staffed. My best advice is to get to know the name of your consultant’s secretary and always take them chocolates ( ask what his/her favourite is) . Please be patient with them as you can imagine the numbers of people developing severe liver disease rocketed during lockdown. You are lucky to under a “ gold standard “ liver unit. Good luck keep working on what you can do
Morning Cat-B...🌞 Wow, 8 years after decomp. That's amazing! Whatever you are doing...keep going! I love to hear stories like that. The varices were Grade 2 16 months ago at my previous endoscopy appointment. They wanted to see them in 12 months. This is sorted via my GP now.
And chocolates for the secretary?..I like that! I have a phobia of needles which I need to overcome..but I just aim..and fire!
Glad you liked the chocolate idea, your consultant’s secretary definitely will lol, they get forgotten as they are hidden away! I still just set small goals that I know I can achieve, so I don’t get frustrated lol. My liver function tests have been normal for over 4 years, so there’s light at the end of the tunnel if you keep going slowly forward ( the tortoise always wins over the rabbit in the race)
4 years normal liver function...wow!..go you!! Yeh the chocolate idea is cool if I don't eat them on the way there. 😁And the rabbit and tortoise analogy, lol, explains where I go wrong!
What can I say...I have been a rabbit and burn out on a weekly basis. And resting?...I don't...but I need to...sometimes. My head tells me to do XY and Zed but my body is telling me nah!!
Listen to your body not your head or other bits of anatomy lol. I stuck to my high protein, high calorie and no salt diet and stopped all processed foods ( except chocolate, well life’s too short for that degree of sacrifice lol) I didn’t want a transplant so I was able to switch to zero percent wine and gin, if you want a transplant that’s not an option ( you have to have no alcohol, beware of puddings!) keep up the good work and I hope I have at least made you smile today. Keep me posted ok?
I gave up alcohol in May 2019, after going into hospital with acute hepatitis, where it was also discovered that I had underlying cirrhosis. I haven't touched alcoholic drinks since, but... I ate two large helpings of tiramisu over Christmas, the same year, and only afterwards realised it was swimming in grog - easily done! Haven't touched tiramisu either since.
Mark, I understand your frustration. I had my routine 6 month ultrasound and was told I had portal vein thrombosis, which required a CT. That was 3 weeks ago and I can't even get a scheduler to call me. I'm in much the same boat as you, fairly well compensated after a scare just over a year ago, and now this. I got the impression this condition is pretty time sensitive too. I can't tell you not to worry. I'm worried too.
Let's just keep after them until somebody listens, I guess. Hang in there and keep us posted!!
Hey Vicki, USA...Nice! Thanks for your reply. I am sorry to hear that you are in the same boat and 'fairly well compensated' is where I am at. But rest assured that after your scare a year ago you are getting through..well done you!To live with a liver disease never was going to be easy. But hey, we are still ere! And yeh, keep at them until you get an answer because it will happen but its like how long is a piece of string? Please try not to worry as hard as that is. Hang in there and keep me posted too!
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Hallo! (Haemochromatosis and Transplant - QE, Birmingham)
Desperately trying to save my partner. 
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