Thinking back on the years before my cirrhosis diagnosis and consequent liver transplant, I used to get regular nosebleeds for as far back as I can remember. I had no other symptoms until it was too late. I would get severe foot cramps too but this was not until the disease changed from compensated to decompensated. A lady I met at the hospital mentioned the foot cramps as well.
Just a thought for anyone who might be having unexplained nosebleeds, you should probably insist on having your liver checked out. I haven't had a single nosebleed since the transplant nearly a year ago so I'm sure it was a sign of liver disease. Shame I never thought much of it before...
How do you know when it changes from compensated? I'm so so scared I'm going to be on my way soon. They don't seem a trifle bothered at the doctors! Tell me more about these foot cramps, I had one in yoga last night...
First of all, please don't be alarmed over a foot cramp, it could be nothing. I fell ill while on holiday and when I saw the consultant hepatologist once I got back, I was told my cirrhosis had changed to decompensated. Until then I felt ok, was even going to the gym 3-5 times a week. By the time, I noticed the foot cramps, I was having several other symptoms like loss of focus (encephalopathy), fatigue, weight loss, no appetite, jaundice, ascites, etc.
What's your situation? If you feel the doctors looking after you are not good enough, demand a referral for a consultant in one of the main transplant centres like king's college, royal free, Queen Elizabeth, etc.
Thank you! I have been having a few foot cramps and a bit of numbness but thats it really. No ascites or anything. I had jaundice 2 years ago but good diet, no drink and propanolol helped!
I have milk thistle and b vits and eat well etc.
My GP has referred me for a fibroscan, about 16 more weeks waiting list for that but she says that will just 'quantify' it or something???
I would request a hepatologist referral. They are a lot more qualified than a GP could ever be. 16 weeks is a long time, once under the care of a hepatologist, they should be able to speed it up a bit. Alternatively you could consider having a few tests done privately. They are much quicker but do cost a fortune.
I initially saw my consultant hepatologist privately, cost £150 for the appointment (which is not too bad I think) and £850 for bloods!! In hindsight I should have asked for the blood tests to be done on the NHS. It was expensive but it meant I had a specialist appointment arranged in a week rather than waiting several months. The rest of the care was provided under the NHS.
Brilliant. My GP said she could write me a letter to 'expidite' my appointment to see a hepatologist sooner than 16 weeks for the fibroscan and other tests etc., but since I am symptom free she thought they wouldn't accept it...
Interesting thing about the nosebleeds. Always had to very careful blowing the nose, even then though it wasn't usually enough, definitely worse in the latter stages. The foot cramps I had from quite early on. They are definitely a pain and you can just do nothing about them except stand/sit there with a grimace on your face.
Yeah it's one of those symptoms that no one seems to talk about. Being a very early symptom (in my case at least), would probably mean many transplants or deaths could be avoided. Everyone talks about liver tests, jaundice, ascites, etc which is great but by the time you notice those, in most cases the damage is already done.
One other thing I noticed was that I could never gain enough muscle mass, no matter how hard I trained and how well I ate.
In my opinion, these are 2 early tell signs everyone should be looking out for.
Even now, I cringe everytime I think of the cramps 🤢
Hi. What was ypur damage of liver when they reffered you to transplant?I have severe fibrosis and I am concerned as my doctor said that I dont need it now.
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