Hello all, my name is John and I’m freshly diagnosed with cirrhosis of the liver, I’m still going through tests so I don’t know how damaged the liver is, but the prognosis has now been delayed due to two nodules having been found in my liver, I have had one CAT scan and one MRI scan but the nodules still can’t be identified so my Doctor says the results have to go in front of a “liver panel” so they can make a decision.
To give you an insight into how I was diagnosed, I had been in Africa where I picked up malaria I went to a hospital in Nairobi had a blood slide taken and had the malaria confirmed and was given medication.
[I’ve had Malaria at least ten times before]
Following morning I woke with diarrhea and found I was passing blood, shortly after I was physically sick and was Vomiting Blood, as there were no ambulances I took a Taxi to the local Hospital in Nairobi where I was admitted, I don’t remember a lot as I drugged up, but was told that the bleeding was caused from the reaction of my diabetes meds [type2] and the malaria medication, I spent two nights in hospital and was then discharged.
The following morning at my hotel again heavy bleeding, another taxi to the Hospital and I was admitted, this time a liver specialist took a look with a endoscope and confirmed bleeding Varocies, he didn’t have what was needed to fix the problem with him so said he would return in a few days, I was kept in hospital but have little memory of the experience, on the third day [that was the day of my return flight to the UK it was an evening flight.]The specialist turned up in the morning and explained he was going to glue [ not band] the varocies then got on with the procedure. Some hours later I was discharged and given the OK to fly, I returned to my Hotel, after packing I left for the Airport and arrived some 3 hours early to avoid long ques.
My flight was for 8 hours, then one Hour in France in transit then a flight from Paris to Manchester.As I waited in the departure lounge I knew I was still bleeding, but had to get out of Africa, I asked a staff member for a wheel chair explaining I couldn’t walk, the chair came along with the airport Doctor who asked me a few questions then gave me a certificate to fly and I was wheeled onto the aircraft, during the flight the bleeding continued however I managed to keep the blood in my stomach, when I landed in France I couldn’t leave the seat, medics were called and I was admitted to a hospital in France, I immediately had two endoscopes [ without meds] had four pints of blood transfused into me and basically spent 6 days in hospital having tests till the bleeding stopped, when discharged I took the train back to the UK.
Once back in the UK I gave all the notes from the Nairobi Hospital and French Hospital to my Doctor, I was immediately sent for an examination and subsequent Endoscope where two bands were fitted, since then I have had an Ultra sound which picked up the nodules, a Cat and Mri Scan and three more endoscopes which has resulted in 8 bands fitted in total.
Other than in France I have been medicated for all the endoscopes, I now have to wait for two weeks for a decision regarding the Nodules, and have another endoscope booked for the 23rd of Sept, my specialist has told me nothing, I really don’t know how good or bad things are, I only ever used alcohol at weekends although I did drink a lot over the weekend, since my first admission to hospital in Nairobi I haven’t touched alcohol and my liver function test [LFT] has now dropped so that it now shows my liver is operating within a normal livers function level, so I guess that’s good……………by the way I’m 55 and need to lose weight…. So there’s my story and introduction to this forum, please feel free to ask any questions. John
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Hello John, sorry to hear of your terrible journey to date. Hope that now you are back in the UK the medics can run all the tests they need to firm up their diagnosis and get you the appropriate treatment, sadly, like my hubby you've discovered your illness following varices bleeding. I would imagine you'll get hit with a barrage of tests in the coming weeks to firm up the cause of and extent of your illness.
Welcome aboard the forum, hopefully you'll find it a good source of advice and support as your journey continues, everyone is welcoming and supportive and it's interesting to share experiences and knowledge, different hospitals do things differently. Where are you going to be treated? Hopefully at one of the main centres as it looks like you are pretty poorly at present.
My hubby is awaiting transplant after being diagnosed with advanced cirrhosis with varices (42 banded now) in April 2012. His illness being auto-immune caused as he's teetotal.
Thanks for the kind words Katie, I am being treated in North wales at Glan Clwyd Hospital in Denbighshire, my wife is Asian and not allowed into the UK because of immigration rules, we've been married 12 years, and i have to go back and fourth to see her, i'm now concerened that i cant fly again...............who said life was easy lol
Hi john and thanks for posting your story which is pretty scary! Good to hear your liver function seems to be improving. There are many causes of liver disease not just alcohol but you are doing the right thing by stopping drinking. You may find you have something called "non alcoholic steatohepatitis" which means fatty liver, and can be caused by diet or diabetes. I hope you get a diagnosis for the nodules soon but the docs are right in treating the bleeding as a matter of urgency. There are others on here who continue to fly/travel abroad with advanced liver disease but it depends on the person/their doctor whether they are ok to fly or not. Also travel insurance gets tricky with a diagnosis of liver disease.
Thanks Bolly, technically I was bleeding in Nairobi Airport before I even flew, so the flight didn't start the bleed, my Liver function test returned to normal within about 6 weeks, however I'm still enemic and my Doctor [ gp] thinks i'm still bleeding a little, but that was prior to my last banding, my gp has now retired and the liver specialist barley tells me anything, perhaps he's just playing safe and waiting for the full picture including the results of the Nodules. I have decieded that i will fly again I will just try to break up the journey into two shorter flights, and have an endoscope done prior to my flight, in my african adventure I had been bleeding in hospital for about 4 days, then had a gluing of my Varocies on the morning of my flight..................not surprising realy that i bled
Hi John sorry for your story. Not the sort to tell the grandkids about! If I remember my reading on malaria some forty-fifty years ago, the disease can reside in the liver and cause many liver problems including nodular growths. I've not read up on it for many years but this might be why there's some hesitation in diagnosis. Anything that causes resistance to blood flow through the portal vein can cause varices and there are many hospitals in the UK and USA who use glue to seal off the bulging vein so I wouldn't put too much weight on the Nigerian treatment. I would be concerned that they considered you fit to fly after only 24 hours. Pressure differences between the veins and external environment are greater in an aeroplane than on the ground, putting more strain on the system. It may be worth asking for a consultation with an expert in tropical medicine to see if they have any information to help your hepatologist. Good luck Phil
Thanks Phil, the very first thing I said to the UK specialist was about the Malaria, he immeadiatly dismissed it, but your right its the eggs of the mosquito when hatching in your liver is what makes you sick, I was put in Brighton Hospital seven years ago with Malaria they didnt beleve me at first, they thought i had meningietos however the blood tests confirmed Malaria. my next hospital appointment is on the 23rd sept for an endoscopy, I'll mention it again then,
Varices caused by chronic liver disease can be in the oesophagus and in the stomach. As you passed blood before you vomited it there is a possibility you also have varices in your stomach, but hopefully the scans will have clarified that. Although it's the liver disease that caused the bleed, not the flight, as PhDad says, there are things that increase the risk of a further bleed and some doctors, but not all, advise patients not to fly particularly after a recent bleed and treatment. However the final decision is yours unless a doctor specifically says you are not fit to fly.
Sometimes we never find the cause of the liver problem. I was diagnosed with hepatitis after a stay in Kenya but mine turned out to be viral. I have no idea how I got it 30+ years ago but recently found a research paper that said bed bugs can harbour the active virus for 6 months - yuk! I did wonder if I had got it from a mosquito bite but scientists say they can't pass on blood borne viruses. The strange thing is my genotype is precisely the genotype found in East Africa and not in the UK. I assume you have been blood tested for hep B and Hep C.
I think the blood was in the stomach because I swallowed it during my sleep, I think my stomach was simply full of blood, once under treatment i generaly just vomited blood, except that is in the French Hospital, of course they took me in as an emergency, and carried out two endiscopys the first it seems was simply to invistigate the problem, they then seemed to change the head on the endoscope and i could here a buzzing as if a whisk or similar was fitted to the end of the endoscope of course the language barrier meant I couldnt get to the bottom of the story, however i would like to say that they treated me very well, and i have nothing but praise for them. the following morning I awoke in the Hospital bed wearing nothing but a adult Nappy [ i did wonder if that was a little French, English joke lol ] however i continued to pass blood via my stools for four days. all the banding carried out in the UK seems to have been around the area of the oesophagus. I truly hope it can be linked with the malaria and is not as serious as it seems, all this waiting is taking its toll, I've know idea what to expect next! My liver function tests are now normal, other than i feel tired i function normaly, starting to lose whats left of my hair lol
Hi all, firstly I would like to thank all that replied to my first post and now add an update, I had another endoscope carried out in Glan clwyd Hospital, and the specialist doesent want to see me again for another 6 weeks or so to check on the bandings. he also explained that the two nodules on my liver were still unidentified, I have had CT scan, Ultrasound, MRI and of course many, many bloodtests, my liver function test show everything within normal ranges, the scans show these very small nodules, the Glan Clwyd specialist says that because there so small thats the reason there having difficulties identifying them, he added that all my test results had now been sent to another hospital [ University Hospital Aintree, Fazackerly,Liverpool] where a "liver Panel" made up of experts would assess all results..............yesturday I recieved an appointment letter from Liverpool, I am to attend an outpatient appointment at the HBP PRIORITY THURSDAY AM CLINIC [excuse the caps but that is how the subject title was typed and in bold]
There isnt any further details other than the specialists name, and to bring a list of present medications.
Was just wondering has anyone attended something like this before, what can i expect? do they ever deliver good news [ the bold and cap lettering suggests something serious]
Compared to some months ago, i now feel fine and am looking for work, I'm not so tired anymore and have taken to daily light exercise, in my youth [ British forces] I was prone to binge drinking and have carried that with me, I either dont drink or drink a lot, nothing in the middle, however after the first bleed in Nairobi I havent touched any alcohol which is close to 6 month now. luckily its been no problem for me to stop. I was surprised that the specialist who carried out the banding said I could still have a beer or wine with food, given my feast or famine attitude I will stay away from any alcohol, still cant imagine why he would have even suggested it?
Hi again John, don't start panicking about your appointment - I know that is easier said than done! I take it you are going to be seeing a liver specialist which is for the best.
They will want to discuss your full medical and lifestyle history and will discuss the findings of the various tests you've already had. They will no doubt want (as some matter of priority) to identify the nodules they've found. If the specialists have some idea what they are they will discuss their findings and will no doubt put some plan of action in place to treat your liver. You will probably have even more blood tests and it is likely that more scans and such like will be ordered for coming weeks.
Make a note of all your current symptoms and those you've had - it is easy to forget details when you arrive in the hospital setting. Make a note of all questions you want to ask and make sure you ask them and jot down answers to refer back to later. Don't leave your appointment thinking "I wish i'd asked that!" This is your health and your appointment so make the most of it. Is someone able to go with you? Two pairs of ears are better than one.
All the best with it, you are obviously poorly at present as your symptoms and ongoing treatment show so it is a matter of urgency that you see a proper liver specialist as those at the local hospital where you've been being treated won't be the most appropriate to treat your case and it's good that they have referred you for a priority appointment.
Firstly thank you Katie for your reply, I attended the Liver Hospital in Aintree liverpool yesturday, it wasnt good news, they feel that both both Nodules are cancer, they also said that the MRI results from my local hospital still wasnt clear, so they want me to go back to Aintree next week for another MRI, they feel that there machines are more powerful and will present a clearer result so a treatment schedule can then be discussed............we did briefly talk about options, but the nurses and Doctor seemed to feel transplant was the only viable option , so at this point I'm just waiting again..............yuk
Aw John, Sorry to hear that your results indicate a cancer, hopefully the better MRI will let them decide their next course of action. Some people have some sort of targeted radio/chemo therapy to shrink the tumours whereas some - like Phildad on here get listed for transplant. Hopefully if that is the case your wait isn't a long one. Everything gets very clearly laid out at transplant assessment and although it is a big scary op so many folk seem to get a great life at the end of it. Depending on the size and location of your tumours will decide the docs next step. With a cancer you'd be a bit more of a priority than just with cirrhosis and all its effects - we've always been warned that cirrhotic liver tissue is treated as pre-cancerous cells - hence the reason cirrhosis patients are meant to have blood tests for tumour markers and US scans regularly.
My hubby is on the list but we've just been told that despite his very poor quality of life at the moment - lethargy and fatigue mainly. His blood results have improved to a level where at the moment he no longer actually matches the criteria for transplant. So, although he remains on the list and will continuously be monitored for signs of deterioration his wait is going to be a long one plus it doesn't help that he's blood group O so he's on the longest waiting list. We just hope and pray if his need becomes greater then he'll get one in time.
Keep in touch, the site is great for support and to just let off steam. All the very best to you and hopefully doctors get on this thing quickly.
Thanks Katie, my blood type is O neg, so its common, yes there are lots of things to consider, I live alone in in North Wales [my wife of 12 years is not allowed a visa to enter the UK], the nearest liver hospital is liverpool, however they do not carry out liver operations they refer the pateints to Birmingham Hospital some 3 hours from here, however I'm originally from the south london area and still have family there, they have suggested i go stay with them, there less than an hour from the liver Hospital, but i would be giving up my independence sharing with them, although there offer is very kind.
Hi John, although you relish your independence you will need to carefully consider your plans should the decision be to list you for transplant. You will need to be able to get to hospital within 3 hours should the call come - although the hospital may organize ambulance transport for you if you are so far away (they don't however transport home if the procedure doesn't go ahead at the time of call).
A lot of mental as well as physical support will be required as you wait plus it will be a difficult recovery process doing it alone too. You won't be able to bend, lift, drive and more for some time post op and although the average stay in hospital is 3 weeks post transplant you will need to attend out patient clinic appointments once per week (sometimes twice) for at least 6 weeks then gradually decreasing - this will be at your transplant centre so independent travel from North Wales to Birmingham might pose an issue. They do prefer people to have support whilst going through this major op.
I don't know the ins and outs of why your wife of 12 years can't access Britain, seems ridiculous in this day and age when so many folks get admittance and being married as long and having your regular exit and entry pattern to Britain / Kenya detailed it's obvious it's not one of these sham marriages. I know it's a hassle when you are already going through so much but would the Home Office not give your wife entry whilst you are suffering from a serious condition and going ahead to further treatment? You will need someones love and support through it all.
I wouldn't worry about your blood group at this time, yes for routine listing blood group O is the most common and has the longest list but in the case of a liver cancer I think (but don't quote me on it) you would be seen as more of a priority. The priority for use of any donor liver is on clinical need, routine cirrhosis type transplant can only happen if the patient scores on the 49+ on the UKELD with those who are the most poorly getting one first. With cancers this scoring isn't so rigidly stuck to and obviously the need for transplant is urgent though depending on the size and location of tumour it may not be possible to transplant before treatment of the cancer.
You've a tough wee time ahead of you and if you've an offer of help and support from friends and family i'd seriously think about it. Plus, if you were in London you'd probably be in the catchment for the top transplant centre at Kings. A trek back and forth to Birmingham to North Wales is going to be tough. My hubby and I have a trek over to Edinburgh (2 1/2 - 3 hours) for our appointments and hubby wouldn't manage it alone.
Thanks yet again Katie, I'll no more after the Next MRI, reagrds my wife, I left the UK back in 1996 to work as a VSO volunteer, worked in Belize and Papua new guinea, was then recruted to by a Austrian development agentcy and worked in Kenya and Uganda this was up untill 2006, I met my wife in Uganda, she was a volunteer from the Philippines, my wife was refused entry into the UK because i hadnt worked there for so many years, so we married in the Philippines and lived there since, i have to return to the UK ever few months to keep my residency of the UK, but its hard to find work when your only here for a few months and in your fifties plus the flights took up savings, hence i ended up going for a job interview in Kenya which is where this story started, I havent seen my wife since Feb 2014, she cant come to the UK as i have no job to support her, and I'm not entitled to any benefits as i didnt pay for a national insurance stamp in the last two months[ nor did i work i was sick with thsi liver problem] i paid into the system for 35 years, have never drawn any unemployment or sickness benefit, and now i need it i'm refused, if things dont work out with my health, i will be gone before i ever see a pension, my wife wont be entitiled to receiving any of my pension all because the MPs keep moving the goal posts.... the only way my wife can join me is if i secure a full time job paying 18,600 pound a year , then I can start the application process but know garantees, or have a bulk sum of money in a account to cover her costs, I can accept all of these rules if we all had to obey them, but it seems others can just walk in and get all sorts of benefits, a few weeks ago i was considering renting my house out so i can have an income and just live on the streets, but it pained me to think that who ever moves into my house will get full benefits and rent paid while I sleep on the beech, i havent been able to pay my council tax for months, as a young man I was in the British Army next week I'm being visited by a welfare officer from combat stress to see if they can assist................the country is nuts lol
Thanks yet again Katie, I'll no more after the Next MRI, reagrds my wife, I left the UK back in 1996 to work as a VSO volunteer, worked in Belize and Papua new guinea, was then recruted to by a Austrian development agentcy and worked in Kenya and Uganda this was up untill 2006, I met my wife in Uganda, she was a volunteer from the Philippines, my wife was refused entry into the UK because i hadnt worked there for so many years, so we married in the Philippines and lived there since, i have to return to the UK ever few months to keep my residency of the UK, but its hard to find work when your only here for a few months and in your fifties plus the flights took up savings, hence i ended up going for a job interview in Kenya which is where this story started, I havent seen my wife since Feb 2014, she cant come to the UK as i have no job to support her, and I'm not entitled to any benefits as i didnt pay for a national insurance stamp in the last two months[ nor did i work i was sick with thsi liver problem] i paid into the system for 35 years, have never drawn any unemployment or sickness benefit, and now i need it i'm refused, if things dont work out with my health, i will be gone before i ever see a pension, my wife wont be entitiled to receiving any of my pension all because the MPs keep moving the goal posts.... the only way my wife can join me is if i secure a full time job paying 18,600 pound a year , then I can start the application process but know garantees, or have a bulk sum of money in a account to cover her costs, I can accept all of these rules if we all had to obey them, but it seems others can just walk in and get all sorts of benefits, a few weeks ago i was considering renting my house out so i can have an income and just live on the streets, but it pained me to think that who ever moves into my house will get full benefits and rent paid while I sleep on the beech, i havent been able to pay my council tax for months, as a young man I was in the British Army next week I'm being visited by a welfare officer from combat stress to see if they can assist................the country is nuts lol
sorry for the rant.
John, your story had me fixed. Your an incredible guy! What a survivor you are. Being at the mercy of the African health system is something that would have scared the crap out of me, im amazed you made it home! I live near where you are, i cant offer anywhere to stay(i rent a single room) but if I can do anything for you, let me know .
Hi Ralph, I have just returned from Aintree hospital, last time i was there they were talking about the possibilty of a transplant, however having just had another MRI, [few days ago] they have now found a third nodule all cancerous and the last one is large which prohibits me recieving a new liver...... I'm told my condition is uncurable but treatable and may add one year to my life depending on how the treatment works, they gave me an approximate year, with treatment 2 years, if I respond well to the cemotherapy perhaps longer, the chemo is introduced via a cathater in the groin and applied direct to the liver............anyone had this of have any comments?
Ralph I'm based between Rhyl and Prestatyn if your from this area perhaps we could meet for a coffee
Transarterial embolisation involves giving an injection into the main artery of the liver of a substance containing tiny gel-like beads or pieces of a gelatin sponge. This creates a seal that blocks the supply of blood to the tumour to stop it growing.
Its a form of what they call Chemoembolisation, a type of chemotherapy that directly targets a tumour. I thinks its given under local anaesthetic and may require a stay of up to two days in hospital.
I believe it can be quite painful, yet can be successful at destroying a tumour. Unfortunatly its not a cure and if you now have 3 tumours you are at risk of developing more.
I wish you well but I think the prognosis is probably correct.
Yes Bolly thats exactly what they said, I was only informed today so was trying to digest the information at the same time as ask questions, initailly the first two nodules were very small, its the third one that has changed everything....they also mentioned a trial treatment called TACE 2.
Gutted for you John! I hope you can get some support from the government regarding money etc. I dont really know what to say, the 3rd one has certainly made this alot worse, i think its because they think it will spread to other parts of the body even if you had a new liver? Once im a bit better I would love to have a coffee pal.
You have a lot to absorb and a lot of thinking to do. Sorry you are in this position, you must still be in shock from your earlier trauma and travelling while so ill. I had primary liver cancer diagnosed 4 years ago, due to HBV, and had a liver resection. So far so good. I did a lot of research at the time as to my options, and its not a good place to be I'm afraid, HCC is very aggressive and not many treatment options offer a 'cure'. You could see how you cope with a round of TACE and how effective it is. Maybe balance this with how important it is to you to be with your wife, even if this means not being close to UK treatment options. Obviously your financial situation comes into this evaluation, and we are lucky here that treatment will be free for you on the NHS. Sorry not to be able to find a silver lining for you John, maybe spend some time chewing over the facts and what you want to do for the best.
Yes your right Bolly, to much to absorb however my family although not local to me are rallying around, regards going back to see my wife, the Doctors say because of bleeding varocies they would not support it, I am considering a second opinion from another Hospital and even the possiblitity of a private transplant, i may not meet the requirments for the uk transplant list, but may meet the requirments of another list, one of the nurses suggested that to me as I'm just outside the UK transplant requirments, however bottom line I'm not thinking to straight at the moment.
Hi Ralph, I'm doing fine thanks and you ? I am due to go into hospital for a couple of nights next week for my first TACE treatmeant, then after 4 weeks will have a CT scan to see if the chemo is having any effect, my doctor says it could take two TACE sessions before theres anything shown on the CT.... Did meet up with PCBnPCB, he's also based in this area. we had a nice chat and laughed a lot it was a good afternoon, perhaps when your feeling upto it we could get together
Wow we are all relieved to see a post from you John, and I bet Charlie (PCBnPCB) was relieved to make contact too. Hope the TACE works for you, take it easy.
Incredible! I'm shattered, too fatigued to reply now, I thought I was stoic, but have not thankfully been as tested as far as you have (I do have some stories to swap, but believe yours trumps mine) would be amusing to trade stories I think, I don't know your position (time available wise) nor where you live (without rereading you flew in Manchester? I live just past Chester, if you have time to burn call me on 07834 207 992 / 01745 816 860 stay@cCastleHouseBandB.co.uk Charlie and welcome to \british Liver Trust and PBC on healthnlocked
Have read more about you (these message boards are something I am not familiar with mixed with encephalopathy ...... ) You MUST please call me or mail me with you telephone number, I don't know if I can be of direct help, but I believe there are things that can be achieved, and you are not in a fit place to get these started, if nothing else I can try to get help for you from an advocate....... how come you are in Pestatyn / Rhyl area? anyway PLEASE CALL ME AS SOON AS YOU HAVE THE STRENGTH / Ability / etc.
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