Hi everyone just to say hello to everyone who gave me good advice on cirrohiss, and all things that go wi
th it, hope you all doing OK and keeping well, I just am not receiving anything from BLT in my emails on liver disorders can't think why, will just have to keep checking in. Angse
Hi Angse, it could be that this is a new discussion area for HU. For other reasons I also participate in Headway discussions on HU. Perhaps HU can promote this discussion area on the Liver Foundation or Trust website.
HU has just just made massive changes to the whole website, and I was very confused when I came back to it very recently.
I've had a blood disorder for 2+ years and spent all that time being blood tested quarterly and told I had Myleodyspractic Syndrome - but have just been told by a different hematologist no it not that - nor cancer or alcohol, its my liver, and diagnosed with Viral Hepatitis a few weeks ago, after mri's, ecographies, and a camera with biopsy tool, down my oesaphagus, stomach and duodenum. A big blood test followed the morning after. I got copies of results in post last week - 5/6 pages I don't understand, so waiting to hear from the consultant now, when he returns from holiday. He said he would phone me to discuss.
I live in France and my limited french does not allow for understanding all things medical in french. Fortunately most of the consultants I've seen here do speak english - this last one speaks best. The support staff with an occasional rare exception do not speak english and jabber away in french. It all adds to stress!
So I wait! I also had an aneurysm/brain haemorrhage March last year, so of course wonder if there is a connection between the 2.
Hopefully, others will also come to this section of HU if they have liver problems.
How far have you progressed with your treatment?
Hi SAMBS thanks for your reply, will take all on board, I have cirrohiss and portal hypertension with varices, already had one near fatal bleed, last year resulting in 5 pint blood loss, so glad I am hear to be on this site, treatment so far is for gastritas in stomach, iron pills just in case I should bleed again, not intending to at all, propranolol to slow heart rate down so blood doesn't pump fast around the body, and that's about all, apart from regular endoscopys every six months to keep an eye on varices, whether they need banding or not, also regular scans on liver at kings college liver unit every six months, so not doing to bad, my heptologist said my liver is well compensated, so that really pleased me no end, as thought I was finished, but you to have had a time of it as well, so very sorry what you have been going through, you are really a brave woman the brain haemorrage must have been a nightmare for you as well as all your other health issues, so sorry, hope you are keeping as well as possible. Angse
Hello Angse - Are you now getting posts again from the BLT? I know that you and I have similar diagnoses and attend the same unit - so I always look out for what is happening to you! I am not really computer literate, but get by. I also stopped getting BLT posts recently - everything was 'locked' - so I changed my password and am receiving unlocked posts again. I think the last thing I read from you was that you were having another upper endoscopy done locally (? in Kent). How did that go. I started suffering from anaemia and had endoscopies from both ends at the local hospital here, to find out if there was a bleeding point - but nothing found. They decided it was linked to my portal hypertension. My aspirin was stopped (on low dose aspirin because of my diabetes, because of cardiac risk) and hopefully my haemoglobin will rise again now. I have a really good GP so that makes all the difference. However the local district general hospital were surprised that the hepatologist did 6 monthly check endoscopies without any obvious bleeding, not the same as the local policy here - I am pleased I am seen in a specialist liver unit! Did you have a fibroscan as part of your investigations? Mine was 27.5, so rather high! Good luck!
Hi games maker. We are back again I see, oh yes I did have endoscopy done at Medway Hosp my appt: was 3-15 had endoscopy at 7pm can you believe it, the big build up was sitting outside endoscopy room with other patients for hours watching others go in, hearing them chockeing and nurse who was assisting doctor screaming at them, sometimes same nurse running out shouting her head off for other nurses to come and help, nurses running around in pink slippers some of them, so you were not sure if they were a nurse or not, one patient going in not long in running out as he was the wrong one, it went on and on, by the time it was my turn in was so angrynit gave me courage, first of all I was told they were all late in going home, and as I looked brave I really did not need sedation, I looked at the doctor and said I need sedation and refused to have the endoscopy without one, I had it then was given 10 mins to recover and leave, can you believe it, no wonder they want to close the place down, apart from that the procedure went well, I am same as before, no change still grade one varices, then week later went to kings saw professer O'Grady had ultrasound all the same as 6 months ago, and he said liver well compensated and bloods fine, I must have had fibroscan is that the ultrasound if so just the same and he seemed happy, how about you I know you stopped aspirin, I was stopped years ago with low platelets 2 years ago, yes your bloods should rise again now,have the given you any meds for anaemia, I am on ferrous sulphate for life due to that one massive bleed, I have only thought about this recently, would you know if I can have my endoscopy any hospital of my choice, as not going back to Medway, one more thing I forgot to tell you, before endoscopy I was asked by nurse about 1 hour before was I having sedation yes she put iv in and went on to tell me about patient they once had was bleeding from varcies Dr could not stop the bleeding so had to take scope out and let patient bleed to death, she knew I had bleeding issues, can you believe it am not going back there. Oh no how long is it going to take you to read this, I'm exhausted ha ha hear from you soon Angse
Hello Angse
What a terrible experience- no wonder you do not want to go back there again. Please contact PALS at the hospital - so they can investigate on your behalf, but also importantly make sure no one else has the same terrible experience (Like you, I would never want en endoscopy without sedation!). I have just had my blood results done by my GP last week and my Hb is still not rising. I will make an appointment to see her soon (I am going away next week for a break)- she has not wanted me to have iron tabs, but I do not want to have a low Hb either!!
A fibroscan is different from an ultrasound At Kings they are done in a different department, not in the ultrasound department - I had mine in the renal department I think. The results measure the firmness of the liver and is different kind of result from an ultrasound - it is a numeric result - but from the patient's point of view is feels similar to a regular ultrasound. I did have to chase for the result though even though the result was very high and was not seeing my consultant for a few months!
Hi angse,
My symptoms matched yours perfectly before transplant. I was transplanted at Kings. You're in great hands!
Thanks hope your transplant went to plan and everything went well yes I am lucky to be at kings, apprantly now where near transplant stage even with symptoms I have, well compensated liver professer there very happy at present, if you read the post I sent to games maker you will see what an endoscopy experience is like in Medway Kent where I live, but I won't have any more done there hope you are well Angse
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