Well it's two months since a drop of alcohol has passed my lips, might have a drink tonight to celebrate, Elderflower and Rose hip cordial from M&S. Sat in a pub watching football with a glass of coke. It can be done and still can be social able. Joking apart I strong support anyone who has to go down this route,difficult path but worthwhile wish I did it a longtime ago.
LFT seem to be getting better ish, not prefect but stable. Now other tests are playing up, FBC/RBC/WBC. And ANA Hep 2. They have changed methodology of LFT tests which has confused me, no Gamma GT anymore from bloods, that was my worse one. Anyone knows why?
All symptoms still there if not slightly worse, mainly dizziness and itching, kidney seems to be complaining today. Doctors again Monday then specialist week after. Oh Alcohol Support has got involved too, not sure why, do they think I crack a bottle open in the kitchen! guess keeps them in a job. Hope someone can shed some light on the progress and erratic symptoms.
Well hope the community is good and wish all Mums a happy Mother's Day tmr.
Andy
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Bigplanet
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Well done you seems easy enough for you which is good. I sent you a message hope you don't mind. Whats happening with your kidney? Thats just under your liver is that right? Sorry can't help with your questions, sure bolly will be on soon to help. Cheers!
Yes got notification but could not get it....send to bigplanet67@hotmail.com , ps anyone can use that email addy. kidney seems a bit sore and painful, left side only. The kidneys are more to the groin area.
Well it was as the hospital I was admitted to did not have a beer or wine license...so 4 weeks as a starting jump start. Not too sure if I could do that with that. Not recommending going to hospital to stop drinking.
Yes Bolly will give me the detailed analysis of my bloods...good man...
Good Luck Andy,I wish you well. I lost my sister to ALD two years ago so I know what the end result can be. Keep dry everything else will get better too in time.
Which parts of your FBC have gone awol? Is it the immune system part (ie neuts, white blood cells, lymphocytes) or the haemoglobin, red blood cells, haematocrit, platelet part.
Not sure why they keep checking the ANA unless they suspect an autoimmune element.
They dont test my GGT now anymore, I think its often used as an indicator of liver damage by alcohol, so they already have that data for you. With me they do the ALT/ALP/bilirubin and albumin part of the LFT test as these can fluctuate with the hepatitis virus.
You are an inspiration to others who know (but are perhaps trying to pretend they dont) the message that people can still enjoy a social life without alcohol and their liver will thank them for it!
Re your side effects and symptoms. Its unlikely they will go away, but they might get a bit better. Remember your liver is under a two-pronged attack. Its no longer compensating for the damage, so you get side effects from that. And now its trying to filter out toxins from the drugs you take to control the decompensated liver damage. Your kidneys are also part of the route via which the toxins of the drugs are expelled, so they will struggle too. After 30+ years of hepatitis my kidneys only started to take a hit once I was put on medication for the liver. I'm at around 65% now, which isnt brill but is manageable. Are they monitoring your creatinine, urea and eFGR?
Maybe they include alcohol support to ensure that all the drugs/treatment/clinic time going your way are not compromised by a drink here and there. Just a guess.
FBC-yes test was triggered as one test from ANA and immune system query. Below is the out of range items all rest in range although some borderline, WBC 10.9. Platelet 10.2
Haematocrit - .37 low range .43-.53
Red blood cell count - 4.2 low range 4.5-6.5
Mean cell haemoglobin level - 33.5 pg - high range 26-31
Mean cell haemoglobin concentrate - 36 g/d
L high range 30-34
Monocytes - count 1.4 high range .2 - .8
Lymphocyte - 3.7 no range
My LFT seems in range on ALT serum 22 iu/l. Calcium is high 2.65. Bilirubin - 16.5 albumin 45 g/l.
Yes still doing Urea test think monthly - last test seemed in range, sodium 135, pot 4.8, urea 4.2 creatinine 80, but has been below 70.
Inspiration, well I hope but was not easy still is not so don't want to make it sound simple. Holiday in 4 weeks time fully inclusive, first time and can't enjoy the free beer, coke and water then..
Understand about side effect jut have to get used to them....doctors tomorrow to discuss. Take care all
Different labs seem to have different ranges of normal values. Using my lab range for 'normal', all your results are within normal range apart from the platelets and monocytes. (Cant work out the Hb as mine is shown as g/L not g/d)
Calcium is only 0.05 over the top end of my lab's normal range.
I've found results in isolation not too helpful, as usually the specialist says 'your fine, these are all in normal range'. For a couple of years now I've been collecting print-outs and putting the results into a spreadsheet. This way I've built up a picture of what is MY normal rather than a textbook laboratory 'normal'. I can then spot which markers remain stable, which elevate and which drop. For example my ALP rose suddenly but stayed within 'normal' and my hepatologist remained unconcerned even though I said 'this is not normal for me'. Next day I was in hospital with a sudden spike in a different LFT marker!
Your ALT looks wonderfully low. A gastro guy told me (dont know if this is 100% correct) that its only the healthy part of the liver that excretes enzymes, so if hypothetically someones liver is 50% damaged, the ALT result needs to be doubled to get a more accurate picture. In other words with cirrhosis or decompensated cirrhosis some of the liver markers are artificially low.
Low platelets are common with cirrhosis. Apparently what happens is the spleen catches the platelets giving an enlarged spleen and a low blood serum platelet count. They dont seem drastically low. Have you had your clotting factor/time tested (shown as INR or PT).
Any more Hep B results back? Do you know your viral load yet, might be shown as HBV DNA or HBV PCR.
Just a thought re your holiday. As its an 'all inclusive' does this mean you are flying abroad somewhere? Have you investigated travel insurance or had you taken it out before your diagnosis. Will you be checking with your medical team that you are ok to travel - thought you were still on weekly testing/clinic appointments?
Well spotted....I have a yearly insurance, and unfortunatly expired March this year. I have gone back to them them have insured me with total full disclosures. I am not covered for any medical claims considered part of the underlining condition. Not too sure the extent of their wiggle room. Stagely my annual charge went down.
I have spoken to my doctor and specialist as long as I am seen the week before to validate and on my return. It's only 1 week, so partner will wrap me up in cotton wool, and will not be able to do diving as I normally do.
It's a break, rest relaxation, and determined to try and carry on as possible a normal life.
But a very good point I considered.
I reply to your main message later as just off to Dr now....thanks again, your a great source of knowledge and support for everyone. I do my research, but helps to have a second opinion.
Congratulations on your two months without alcohol, your life will change for the better now.
I just thought I would share my experience with you.
I too had ALD and I'm at present . covering from a liver transplant.
Before the transplant I also had to have weekly bloods which were up and down everytime. My problem was I looked so well on the outside as I hid my pain and the tiredness from others. I tried everything from changing my diet to going to the gym. I've been sober now for 3yrs & 6mnths. I joined a group for people with alcohol problems and I now help others. I understand the group is not for everyone but for me it has saved my life. It's been 5 weeks since my transplant and though I'm still in pain and very tired the surgeon told my husband my liver was the worst he had ever seen and I was lucky to have survived to be able to have the transplant. I have to see a alcohol worker as part of the transplant agreement, though she is a bit dippy I can put up with the 30 mins she takes of my time because I can't thank the people who chose to save my life enough. I also have to have random blood tests to check if I've had any alcohol. I love the feeling of it coming back negative and when I'm picking my daughter and her friends up from a nightclub at 3.00am (purely because I can now) I almost feel disappointed that I wasn't stopped by the police!!! lol
On christmas mas eve last year I lost my brother to ARLD, unfortuantely he was unable to stop drinking though he did try.
I wish you all the very best in your health and sobriety and I hope you have a lovely holiday.
Please feel free to ask me any questions if you wish. xx
Good news that your liver transplant is going well, hope everything will improve and the pain subside.
I too look okay on the outside, but pain, aches, tidiness and the other symptons are still there.
Yes I am a typical man and don't like the counselling type of meetings, if I see one more improvement star. But I go as to show improvement to them and my doctors. I have another 5 x 1 hour sessions god only knows what I am going to talk about.
What I do find important and supportive are these type of forums talking sharing information and similar stories, it makes you realise it's not just you with this disease and the symptoms and side effects it brings. What continues to annoy me, but no ones fact, is the lack of facts and black and white answers. Ie when I get a positive result or bad bloods back then leads to another possible list of things, change in drugs or routines. I know we all live with it, embarrassing the doctors reception staff know me before I walk in, pharmacist on first name terms. !!!
I am really sorry to hear about your brother it is a tough thing to do.
I strongly advise and support anyone to go down this path. I also found it helpful to be honest with people about it. My local pub, I still go and have a coke, old friends asking if I want a beer, and me telling them no sorry got cirrhosis, the looks I got.
i was in exactly the same boat mate i was diagnosed two years ago and stopped drinking straight away. emotions all over the place,looking on the internet at symptoms etc.withdrawing from alchohol wasn,t easy for me as i did it without help.you don,t know whether your coming or going with it.i took one day at a time don,t know about going down the pub(people who drink annoy me now with their drinktalk lol).i have been told i can have a transplant when needed,ilast had a scan 6 months ago(i dont know the results because i was never given them,i was just told to goback in another six months.doctors can be very vague
Hi Bulmer. You should have had a letter from the specialist/doctor who ordered the scan telling you the result. Certainly your GP should have had a letter with the results, and if the GP has a letter then all you need to do is ask to have a copy or at least be shown it.
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