HEPATITIS B TRUST
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Patient Feedback
Patient Carer User Feedback
Many patients and carers have contacted us and left messages a tiny sample of which is below. It gives a real insight into the many questions and unmet needs of people when diagnosed or when dealing with Hepatitis B in the UK and across the world. Most testimonials have had names and locations removed for data protection.
1 Hiya Paul,
Just wanted to say a huge thank you for the chat earlier. It was really very helpful.
I shared info with my husband when he got home from work, and to be honest, I think he is a bit overwhelmed at the moment. He doesn't particularly want to see the Chinese doctor (at the moment) and is not keen on taking the milk thistle (not happy about taking more medication..... at the moment). A lot of his fears I think are cultural, but i think he is just overwhelmed with all the information he has had in the last few days.
One big help was though, that he is going back to the gym (we actually thought it would do him more harm until I talked to you), so thanks again. And yes, honestly, the viral load is 94 million and ALT is 500, so hopefully the Tenofovir will begin to do its work and attack this disease and stop it in its very big tracks. Will keep in touch Paul, and thanks again for what you are doing,
2. Dear Mr Desmond
Thank you for your letter and for copying me in on the posters that you sent to Martin Lombard. I have been passionately in favour of universal vaccination for decades and worked with Professor Arie Zuckermann when on the Advisory Viral Hepatitis Committee to try an get the UK into line, even at that stage, with many other countries. Now the situation is even more compelling with all the immigration cases coming in and the pool of HBV infection being rapidly increased. However I am not sure from your letter how you would like me to be involved. I always, as I say, make reference to the need for universal vaccination at birth in the UK in any talk I give but I would be happy to join in any activities you have or lend my name to any documents. Do let me know.
Yours Prof Roger Williams
3. Hi,
I'm a medical student so I'm immunized for hep B. After a conversation about this with my girlfriend's father who works in a recycling plant manually sorting rubbish it turns out that he isn't immunized and the employer is being funny about offering it. He routinely has sharps (razor blades and needles on occasion) and general dangerous rubbish (glass, sharp tins etc) on the line. On a number of occasions he has had puncture wounds through his gloves. What is the legal side to this and who is responsible for picking up the costs for immunization etc.?
Many thanks
4. Thank you for all the information you provided via email!
The reason why I am reaching out for advice online is because my father is a very well known doctor and I had these tests done at the hospital where he works. As I didn't have any serious symptoms except for the coloration around the mouth he thought nothing of it and thought of the test as a joke, took it very casually and everything changed after the first test results arrived. I believe he went to the lab himself and took the results and only spoke to the lab technician or microbiologist and never consulted a hepatologist or a gastroenterologist. He seemed very worried and at the time, told me that I need to take another test but he was postponing it because he was worried about his reputation he probably didn't want his colleagues to know that his daughter has hepatitis b.
So I had to insist on the second test, made all the possible research on the internet on the markers combinations and everything and I had to write them down on a paper and I guess they used all of the markers the second time only because my father works at the hospital. I don't think other patients get this treatment (which is sad and irresponsible). A few months later again after I was having mental breakdowns at home and convincing my father that I should have a third test or at least talk to a specialist in hepatology he took me to one ( who works as a professor at the medical faculty),
And she suggested anti-Hbs to be tested again to see if I became immune in the meantime. I never took the third test because it had to be done in my father’s hospital and the procedure is very hard if you want to get tested at another hospital which is not your healthcare provider. I live in Macedonia and people here have such small town culture it's sad. I really have to get to the bottom of this because I don't want to get sick and deal with cancer and I want to also know if I am dangerous for other people around me!
Thank you so much for your time and patience! Kind regards
5. I was diagnosed about 5 years ago with Hep B. All i was told was that, I am a carrier and can pass it on to someone; on the other hand I do not need any treatment. I do not know what my test results entail, so reading others people’s makes me wonder. I had to go a series of test and I was told my liver was in good condition and to live my life as normally but my partner will need to be vaccinated.
Now my question is I have met someone and told him I have Hep B, I cannot even answer most of the questions he's asking because apart from the what the doctor told me and my own research I do not fully know what is going on with me.
What do I do, do i just ignore it or what? I even asked him can he tell at what point I was infected he said no, I just have to live with it.
6. Dear Sirs,
At the end of June I will have surgery on my hernia. I was not vaccinated against jaundice before.
Do I need to be vaccinated, and how does it work. I am afraid because nobody mentioned it and I know that is very important to get vaccination before any operation. Even my friend who is a doctor said I should get vaccination before this surgery because there is risk to get hepatitis B.
please answer me
regards
I’ m from Poland where they are honest
7. Hello,
Sorry to bother you, i have spoken to a lady in your office for advice fairly recently..
Can you advise me on the difference between the hep b virus going into remission (is it seroconversion?) and clearing the virus completely? And what should we look out for on the blood test?
My consultant has said that the virus has cleared, because it was below 15ml and the liver test came back normal. He didn’t mention antibodies and couldn’t find the blood test result, in fact got rather annoyed when we queried it. His Registrar had said that there was a chance i was still infectious over the phone following my last test so i am completely confused, as i haven’t had any other bloods done since seeing her.
I have read that these same results could mean chronic remission or cleared.
My Consultant has done another blood test now and said he would write to me with the results, having already made a decision not to see me again.... So i want to be sure of the correct viral status for two reasons. Firstly my wife is not able to receive the vaccine due to 6 wkly igg infusions at hospital and secondly, I believe the virus was contracted through my employment at a University.
(I don’t think that the Consultant is a hep b specialist, but a top gastro man.)
If you think that there may be any reason to get further support or a second opinion is there anyone who you could recommend as a HEP B specialist?
Thanks in advance,
Kind Regards,
8 Hi,
Recently I have come to know that I am positive in Hepatitis B. My liver functions are normal. Since I was negative one year before I think I am an acute infected person. So please let me know whether I could clear the virus and remain as a negative. Thanks
9. hi thanks a lot for yr help, just discovered that I can’t have children normally as my sperm is weak and my wife has both her tubes blocked, we have only the ivf as our only last chance, we are going through the ivf steps our next appointments will be august 12, but if what am reading is right i am also going to be rejected am 32 my wife is 30 and we both are stressed for lack of children especial from my cultural group. Is there any hope for us. Are we going to succeed we’ve got the money ready but will it be possible .is the any alternative centres that patients for ivf. Thanks.
10 Further to our telephone conversation, re St John Ambulance member vaccinations.
Just checking you have my correct email address so you can send me the GP letter and risk assessment
11 Good day.. Big thanks to God for i have found this site. I am simple, healthy looking young man at 22 years of age. i discovered i am a chronic hep b carrier way back 2007 when i was screen for being a nursing student. Luckily our dean wants me to pursue this profession. at present, I am a Philippine registered nurse. i already volunteer for more than 1 year. i come to realize I need to practice my profession to help my parents. But my big problem is my health status. i am afraid for discrimination and being rejected of what i am suffering right now. I really had hard time seeking for job. I know and I believe time will come. Despite of this, I remain strong and persistent. I do not loss hope. i want to see myself working as a nurse taking good care of people who are ill.
i am writing you because i want to clear my mind with many questions which i think can help me a lot with my current status. My questions are 1. Do other countries (like: Dubai, London, US, UAE) accept nurses who are healthy chronic hep b (+)? 2. Can i get rid of this virus in my system using Vit C and Transfer Factor? 3. Can i get work visa from other country and work to their company. admin. plz help me. i badly need help. i want to go abroad and work. i like to go abroad. please more thanks and more power>.
12 I am a medical student in Lausanne, Switzerland, and am doing my master work about the screening of hepatitis B for the migrants. I am therefore interested in knowing what other countries do about that.
I found your contact on the world hepatitis alliance website, and thought you could maybe help me answering a few questions:
- Is there a screening for hepatitis B in the United Kingdom for the migrants arriving in the country?
- If one is positive for hepatitis B, can he be treated?
Would he anyway be sent back to his country, or may he stay in the United Kingdom because of his disease?
- Is there a vaccination plan for hepatitis B? I thank you in advance,
13. Hi there, I’m just after a bit of advice really.
> I while back i had a blood test at a local GU clinic. I was told in my results that my body had come into contact with the Hep b infection but had fought it off and that I now have natural immunity. During this time I was receiving hep b inoculations for a trip to south africa. I explained this but the doctor was still insistent that i had come into contact with the virus at some point.
> I am just wondering what this means for me, i understand that the infection has gone and im not contagious. but do i need to inform my gp of this? and do i need to declare it on job applications if asked have i been infected with blood borne viruses? > Thanks very much
14. dear sir/ma'am,
good day to you!
i am a staff nurse here in UAE and a Filipino. My husband is inflicted with hepatitis b and we found about it after our marriage when he underwent medical exam for his job as a seaman. Unfortunately he didn't pass the exam and wasn't able to get job after that. i decided to apply overseas to support our family. Almost 2 years now we are separated physically. Do you know any agency who would hire someone with this disease? I really want him to work and we really in need of earning to support our family. I hope this organization will somehow help us in small way. Thank you so much! Regards,
15. Thanks a lot for the reply.
i am really nervous about this whole issue because it is affecting my job. At the moment I have no job because my company said they cannot send me to ship and they cannot help in the treatment.
i met a doctor and he told me to go for the viral load and the e antigen. Unfortunately it is done only in one place in Nigeria, some place in Lagos. I am preparing to go for the test.
But, if i may ask, I hope this can be treated? Without me having traces of it in my blood.
Secondly, my wife does not have it .the doctor told me that if she gets the vaccination she will never get it even if I am sleeping with her. Please is that true? At the moment, my wife is taking the vaccination.
pls i need more information from you.
thanks a lot
16. By the way of introduction, I am the founder/president of the Theobald Hepatitis B Foundation in Ghana and also I am the regional board member of the World Hepatitis Alliance representing Africa. I would like to propose a partnership or collabration between your organisation and Theobald Hepatitis B Foundation.
theobald2003@yahoo.com
17. Hi doctor
I have been detected as Hepatitis B Carrier a year back i.e. HBeAg-negative , Anti HBeAb positive, HBVDNA- 925IU/ml, On no antivirals as per my DOC. Wife has Anti (HB Surface Antigen) Antibody( she has concentration of 0.00IU/ML. Can we plan to expand our family without any risk. What are the chances that kid will be Hep b Carrier and its safe for having a kid in our situation My wife must have had her vaccines about 7-8 years back. Even though she is producing antibodies, should she go again for a booster dose of vaccine after some time. If yes, after how much time
Thanks and Regards
18. I am a service manager within West Lancashire BC. I have been trying to arrange a Hepatitis B vaccination for a member of our Dog Control staff for some time. The staff members own GP does not perform the vaccination and I have been unsuccessful in sourcing the vaccination from a number of organisations, including the ones on your website. There appears to be a reluctance to issue the vaccination, if the person is not a patient of the particular surgery. I would be grateful for any assistance you could provide as to a suitable contact/organisation that could perform the vaccination.
Regards
19. Dear Paul,
I have been meaning to write to you since we spoke last Wednesday as I wanted to let you know how grateful I am to you for your phone call. You really did give me the reassurance I needed the day after being told that I have had exposure to Hepatitis B. You made me feel so much calmer; that there is hope and that all is not lost. After speaking with you, your advice helped me to reassure my husband and explain things in a much more qualified way and I am deeply grateful for that. You are doing an excellent job and I'm sure you must help many more people out there who feel like me every single day and I really admire you for that. Thank you so much.
I am still waiting for my detailed results (it's very difficult waiting!) but expect to get them in the next day or two. I will certainly be in touch again over email once I get these so that I can get your perspective on them and ask for your advice.
Many thanks again
20. Hi,
My name is Tom Hayden and I work for Summit House support a charity that supports people living with HIV, there carers, partners, lovers and children in the Dudley and Sandwell areas.
I am currently setting up a Hepatitis support group in Dudley and Sandwell and possibly in Walsall and Wolverhampton as well. The aim is to have a support group that offers peer support and practical advice for people living with Hepatitis. We are also planning to link with local PCT nurses to offer and encourage testing and vaccinations in those areas.
Could you possibly recommend any literature or information that may be beneficial for the group? Also would it be possible to use the Hepatitis B Positive on our flyers if we include your contact details on the leaflets?
I have also been looking into training for our volunteers that will be helping to run the support group. Could you direct me to any agencies that deliver training in this area? I will be approaching the local PCTs for training but thought you may be able to recommend an organisation.
I look forward to your reply and hope this finds you well.
Tom Hayden
21.Hi Paul,
After your recent response to my message board post/request and our lengthy conversation I wanted to say a massive THANK YOU for all of the fantastic help, support and reassurance you have given me.
From the very beginning of my diagnosis (2 years ago) I have searched for that support and reassurance from the many various medical professional I have come into contact with but unfortunately have only received the necessary medical care covering blood tests and scans and the subsequent results but I received no in depth advice or detailed information and explanation about the virus or living a relatively normal life after the shock of the initial diagnosis.
But from the instant I logged onto your web site I seemed to have 'turned a corner' (So thank god for you and the Foundation) and have been given all of those things and so much more.
So a MASSIVE Thank you to you personally Paul and the Hepatitis B Positive for all your invaluable work and kindness - without it my life would be very very different.
Warmest Regards
22. Thanks Paul,
I really appreciate the feedback and indeed will look at taking the scan as well as taking care. I should live to blow 100 candles. I was shocked when i was diagnosed to have HBV and kept wondering how on earth i acquired it .I have recently come to terms with accepting this fact. My spouse and kids are taking the vaccination. They have so far taken 2. My spouse is very supportive and good at sharing literature around it. I shall also change my diet and watch my health.
Regards
23.Hi Paul
I m calling from Hong Kong so am unable to ring free phone numbers from abroad. My dilemma is whether to give my baby the hep b vaccine. We are UK residents but now live in HK. At home they don't give the hep b vaccine but here all newborns have it before they leave hospital. The hospital are keen to give it to my little boy (now 4 weeks old). I really am unsure what to do for the best.
Thank you very much for your informative response. I have to say I was completely unaware of much of what you told me. I really appreciate you taking the time to email me. Jacob vaccination is due tomorrow and I will say yes.
Many thanks again
24. message:
Dear Sir/Madam,
My name is Moses Tetteh, I live in Ghana and i desperately will like to set up a foundation like yours in Ghana to help my people. Over 4million people were said to have hepatitis b as at 16th of May 2010 out of the 20 million people living in the country, most of these people were children.
I will be grateful if you can help me with the necessary direction and support to make this a reality. Currently we run an office which is ill resourced office and we move from one junior high school to the other to educate them on the disease. My dream is to expand this to cover all senior high school, universities and the working and non working class of the country and to go a step feather to test them and support them where it will be deem necessary.
I will be glad to partner or receive support or direction from your organization to spread the news about hepatitis b to help save lives. I hope this letter will be given the earnest consideration that its needs.
Yours faithfully,
Moses Tetteh email: kirch142@yahoo.comtelephone: +233246031459
25. Hi Dear,
i am a hepatitis b patient and not on any treatment since my virus level is undectable (been inactive) does that mean am not infectious?.. was diagnose in 2008 and get so depressed and sad sometimes..what are chances if any for me to clear the virus naturally? what are chances of my virus been active and replicate again? i have never feel sick from this virus at all..am so worried and had not been in a relationship since because am fear of rejection..please help me
26. Hello my name is C and I write this e-mail because I find myself in a difficult situation and would be grateful for your help if possible. I have a brother who was born with a mental retardation due to incompatibility of blood, he is now 34 years and despite having had a few problems, none were as complicated as this, he did blood tests and discovered he had hepatitis virus b, I know this is bad and I don´t know how he got it because he never had risk behaviours at any level. The main problem is that it does not have antibodies to fight the virus which results in a multiplication of the virus randomly unrelenting and yet according to the doctors my brother's liver is healthy and they do not know what to do because they've never seen anything like it . I really wanted to know what to do because I know that my brother is at risk of dying at any moment. In Portugal the doctors do not give a solution, time is passing and I am afraid to wake up tomorrow and find my brother dead... please with all my heart and calling for your generosity ... help me!
Thank you C
27. Dear,
One of my friend is having Hepatitis B since 2 year and we found no treatment for that..
Kindly please advise me what to do.. As i visited ur website i found so that u have treatment so kindly give me any doctor details or consult us what to do and how to solve the issue. Waiting for your response
regards
28. Hello to you
I was browsing for the community about hepa b, and then I saw this site.
First of all, I want to introduce myself, My name is K from the Philippines, I’m 24 yrs old and Single.
I have chronic hepa B. I'm surprised to know that I am not ALONE in this world that infected with the virus.
I have a long story when and how I get this kind of disease, but the most traumatic experience that I never forget was when I was in DUBAI. Last March 2010, when I've got to have a visa and had to underwent to a medical. There I found out that I've been infected, that was the lowest point of my life. I was depressed and down.=( It's Dubai policy, so they send me back to the Philippines. Now, I'm working here in the Philippines. But I still want to work abroad to earn money and help my family. Why people are so unfair? =(, my Doctor here said that I'm healthy to work, the virus is UNACTIVE just have a clean living and take my maintaining medicine like SYLYMAX for my liver. I always feel this kind of hopeless thingy. Negativity. I always pray for the miracle.
Thanks you for listening. I hope I get the chance to hear your advices.
Thank you and God bless
29. Hi Paul,
Many thanks for taking the time to forward me on this information, much appreciated.
I am going to go ahead with my placement, and I have decided not disclose the information about my HepB to them, I just don't think they need to know, and I feel it might be causing more problems than it's worth. My two co-facilitators both know about it so if anything hypothetically were to happen, I will make sure they know what to do.
Hope you are well!
30. Hello there,
I am sorry i haven’t used my real name, although i have used an email address that i have created.
My partner was recently diagnosed with hep b infection (chronic), with low infectivity rates. I have found this incredibly hard to deal with, is there a support group for partners living with the disease? many thanks
Hello Paul,
Really he has no chance of infecting me? ...nobody has ever told me that before. You have been really informative I really appreciate that , I suppose i worry that if we were to try for a baby again we would obviously not be able to use condoms and I don’t know why but it scares me sometimes, even though i have been vaccinated. We are really trying to get over this and he is trying to keep healthy as he can.
thanks for being so straight to me, all the best
31. Hi.
I would like to work in the UK but found myself infected with the virus. Do you know of organizations, companies, or entities that hire foreign workers despite being a carrier? I am very educated and work hard. I graduated from college with high marks (technicalities prevented me from getting the cum laude award). My college degree is Education - Major in English. Recently, I am working as a online personal assistant.
I hope you could help me out. Thank you for your time
Paul’s Reply....Teachers with hbv are great to have in any school, they up blood hygiene and understand the value of plasters, bleach and hbv vaccination, thay are good for the kids with the bug too.
Only working with blood and wounds is barred, so your qualifications should make the world your opportunity, with only a few nations discriminating Abu Dabi for instance, so it is good to check each, but the EU is fine with hbv. Best Regards
32. I am a student paramedic. Before I am allowed to start my practical training I must be covered against Hepatitis, however after having two sets of vaccine my blood test readings are still less than 10. I am desperate to start my training is there anything I can do to raise this reading immediately or does this mean that I cannot develop an immunity to this disease?
Regards
32. Hi there, I spoke to you this morning about my partner in the military who has been told there may be hep b antigens in his blood.
I would be grateful if you could send me information for him, a better explanation, support for those in his profession and any other advice, I would also appreciate any info for myself, for my health, minimising risks, intimate relations, and ways I can support him really. Thanks for the chat earlier; it really is a brilliant organisation, especially for those who have found it difficult to cope with.
32. Dear Paul,
Thank you for your reply and taking time to read the results so late and all!
And for confirming kind of what I was already hoping you would say!! One more thing if you don’t mind to answer? Would the results suggest he has had Hepb in the past? Or how else does he come to have the anti bodies? Are some people just born with the anti bodies? I am sorry to ask you when i can imagine you have people with bigger problems to help.
I just want to say though how disappointed i am with the medical profession, who sent me away with a belief my husband had chronic hepb! And no one able to even see me to get answers till the end of the week! And if it had not been for my determination to figure it out and your help we still would nt know any more! ( i had to demand the hospital send me his results cos they only wanted to send to the gp!) So thanks again, you do a great job and if u ever send out info for support or fund raising for your organisation keep me on your mailing list, you do a great job and deserve all the support in the world (even if we only needed it for a couple of days) but then i guess that’s the point!
33. We have just contacted you via phone asking about the data we need for the effectiveness of Hepatitis B vaccine for our A level Biology report so I was just wondering if you could help us out by providing us with any data such as graphs, tables or any statistics which could prove the effectiveness of any Hepatitis B vaccine such as Engerix-B . Thank you so much.
Natalia Wee – Raynes Park Sixth Form
Paul,
Many thanks again for that. I guess the one of the reasons for pursuing the PCT is that the strees induced in the first trial of IVF may have affected the negative outcome. We won't be able to afford another 10 cycles so if we can confirm that mistakes were made then there may be a case for another free cycle?
In essence, we have requested a copy of our medical records/correspondence from the PCT and to my mind, we should have the right to see them. I would also like to ask about the effects on the partner of an HepB carrier. I was inoculated but it did not take and was told that the chances of getting an infection were about 3% if I had not been infected in the first year or two. That does not seem to be the same as your presentation. Can you elaborate on this? NB - I should also add that the overall distress with our IVF treatment was not helped by Birmingham Queen Elizabeth Hospital because even though we had informed our GP in August 2009 that my wife was an HepB carrier and also the QEH on our first consultation, they still carried out blood tests first before organising a test by the Liver Unit. This caused an unnecessary delay in my opinion. Why not order the liver test straight away when we informed them of my wife's condition?
Aug 2010 - GP visit, stated wife is Hep B carrier but we wish to start family; GP orders basic blood tests (results were ok for hormone levels)
Dec 2010 - initial QEH consultation; we stated wife is HepB carrier; QEH order series of blood tests and scans; QEH confirm they will not treat HepB with IVF
Mar 2011 - 2nd QEH visit; confirm blood test results for HepB and refer to hepatology unit for further tests (Q - why was this not done in Dec 2010 visit?)
May 2011 - Liver unit check - given all clear
July 2011 - proposed follow up visit to QEH, but wife went to China for family reasons, returned in Aug 2011
Aug 2011 - GP visit; we request direct IVF treatment at Coventry Hosp for Hep B patients to avoid further delay before wife's 35th birthday.
Jan 2012 - Start IVF treatment after delay due to funding
33 G.
Hi Paul,
I spoke to you a few weeks before Christmas, I was looking for information on what prisons I can go into, being a chronic HepB sufferer. I am back onto you now with another query; I have always been interested in studying medicine but never really given it much thought due to my HepB, but now that I am nearing the end of my degree, the thought has come back into my head, and I can't seem to shake it. So i want to do some more research; I know there are specific areas of medicine that a person in my situation wouldn't be able to do, such as surgery, midwifery, possibly A&E (which is a bit shit cos this are the areas I would like to get into) but I was wondering of you have any more specific details about what areas I can and cannot work in, or if you knew where to find out that info.
I have been in to the GMC about this but you know yourself, to get an answer to this question is so hard, because it's still so uncommon!! So I would be appreciative for any advice you could give me!
Many thanks,
34 L
My name is Dot and I live in Hull. I was born in 1950.
Way back in October 1976 I gave birth to my first and only child. I suffered severe bleeding and after an emergency hysterectomy in January 1977, was diagnosed with Choreo carcinoma. Until this time I had a very healthy life and was an athlete and a Policewoman.
Over the next 5 years I had many courses of radio therapy and chemotherapy at the Weston Park hospital and Jessops hospital in Sheffield and Charing Cross Hospital in London. I have no complaints about the treatment in any of these hospitals – they saved my life.
BUT:-
I had many blood transfusions during this time in all the hospitals. Not long after I started treatment in Charing Cross Hospital (In 1978) I was told that I had a blood disease and would have to be in a single room any time I was admitted to the hospital, which was regularly.
I was shocked and upset as I wasn’t given any details for at least a day. Then I was told that I had Hep B, probably from a blood transfusion I had received before going to Charing Cross. No more information was given. To be honest, I was too ill to be too concerned at the time as I was told that I would have regular blood tests to monitor the Hep B. I did ask about side effects and was told that it wasn’t fatal and as I visited the hospital regularly they would keep an eye on me.
I was nursed in a single room for the rest of that particular stay in the hospital, but after that I was in a ward with other patients.
I did make enquiries with nurses and doctors, none of whom seemed too concerned at the time, apart from wearing gloves during blood letting and transfusions. I was told to be very careful if I had a bleed and my husband and daughter were tested for the virus – with negative results.
I had my last chemotherapy in September 1981. I continued to have regular blood tests for the Hep B at the Kingston General hospital in Hull ( my home town). After few years I was told that the levels had gone down considerably and I wouldn’t need any further tests. I was also told to be still careful of any bleeds and to take precautions if I came into contact with anyone during a bleed. Which I did of course, especially with having a young child.
In the 1980’s I was due to have a mole removed from my back and advised the surgeon of my Hep B. He refused to operate and sent me away feeling distressed and dirty. He told me I was a big risk to anyone coming into contact with me and shouldn’t have operations unless the staff were informed well in advance and they were willing to operate on me ! That is when I started to worry.
I made an appointment and visited a consultant at the Castle Hill Hospital (Hull) Infectious diseases unit. He basically told me that as long I was careful with any bleeds I had and informed medical staff there was not a huge problem. I was not given any other advice or told what the future held !
Years passed by and I must admit I thought I must be clear of any Hep B as I did not seem to have problems and my health was good.
In 1998 I realised that I was continually tired, bloated stomach, just generally run down all the time, with red spots over areas of my face and body, itching on my arms and legs. I knew I must have a problem with my bowels as I was always in the loo and put other symptons down to that. But I put off going to the doctor as I coped and we decided to have a holiday, then sort me out !
After the holiday in the December 1998, when I really wasn’t well, I visited the doctor. My main symptoms seemed to be bowel problems, so off I went to the consultant. It was during his examination that I mentioned the spots. He immediately told me I must have liver problems. I was admitted to hospital the next day (frightening). This was January 1999.
To cut a long story short, I did have bowel problems, but more worrying I had cirrhosis of the liver. The consultant told me this was due to the hepatitis B. I had no idea it could be so bad and that I could be in such danger!
After many in patient stays, tests and biopsies at local hospitals, during which I was told I needed a stoma as my I had strictures in the bowel caused by the radiotherapy in 1977, I was sent to St James in Leeds in December 1999. I was told I had maybe 6 months to live.
In March 2000 I had a successful liver transplant and a stoma. The staff were life savers and I am forever in the debt of the wonderful family who, during their devastation of the death of a loved one, gave me the chance of a life with the donation of my new liver.
I now have a problem with my kidneys due to medication I must take for life.
The shocks, the pain, the devastation, the family upset, the trauma, could all have been avoided had blood transfusions been properly monitored way back at the beginning of my cancer treatment. If I had been better informed at the time and the few years afterwards, maybe I would have been more aware of the problems that could ensue – who knows?
Maybe I am partially to blame as I didn’t seek more advice – but I thought after all the consultants I had seen and tests I had had, that there wasn’t any real danger. I was never offered counselling, never had any hospital appointments for the Hep B, never given any follow up telephone numbers. Maybe those days it was not regarded as dangerous, not enough known about it.
I am now older and definitely wiser! I read, follow stories and look for advice on any illness I have.
To be fair, St James Hospital staff and my GP are very good and offer advice on any subject I ask about.
That’s my story. I know it isn’t really of any help to anyone now, but hopefully times have changed and advice is freely given. Better still blood transfusions ( I am told) now come from safe sources.
35 Dot Wright
Dear Sir or Madam,
I am a journalist working in Beijing. I officially work for China Daily, but also write my own blog on issues concerning China and linking China to the West at http://buchdahlbeijing.wordpress.com. The blog is a mixture of society, culture and current issues articles concerning China as I see it from a non-Chinese point of view. In the past I have written about issues like anorexia, for example, and all my posts are inspired by hearsay from Chinese colleagues of mine.
This is why I am contacting you. I have just been speaking to one colleague, who talked about the terrible Hepititis B problem in China. The statistic he claimed was quoted by most Chinese doctors was that 1 in 10 people in China have the disease. He also mentioned the huge social and employment stigma in China. It has now been banned for employers to test potential employees for the condition as so many people were discriminated against because of it - but of course, this means more cases go undetected.
I wondered whether you could help me get in touch with an organisation working in or linked with China that raises awareness of HBV. Of course, I have the Internet and stories from my colleague, but I was wondering if I could get an expert view for an article I would like to write.
I have contacts with Prospect magazine, how have in the past shown an interest in my blog posts. If the article turned out well, would consider pitching it to them as well.
Many thanks and best wishes,
36 Ellie Buchdahl
Hi Paul
Many thanks for info and the conversation.
I run the clinic for Hep B for prisoners here.
i am looking for formal training and to join the network i can refer to
the current hep b here i offer is the rapid 0 7 21 days immunisation. i offer blood test to determine level after 2months of last injection . advice a booster 12 months after . then once every 5 years.( is this correct)
if you know of any formal training please let me know
37 Mr Paul Ramsamy (BSc Hons)
Hi Paul, thank you again for your advice, the doctors have agreed that it would be best for the boys to be vaccinated, and they start it next week, I think it was your letter that gave the added nudge.
Thanks again for your support.
38 Hazel
Dear Paul,
As advised us I am writing to you to request the following to be sent to me please:
just diagnosed booklet
a vacc schedule
a results explained factsheet
maternity pack
and the number of an expert mum who can befriend you as she has already been through hbv birth process.
I am so glad I have found you and your site and looking forward to receiving the information.
Kind regards,
39 D
Hi Paul,
I'm really confused with this result as obviously not detected does not mean negative, so there's probably some virus particles that can be spread to others, am i right? Or is the testing system just cannot show complete zero, because it is a quantitative not qualitative test?
I contacted the lab but they were not able to answer my questions. I'm also worrying that I may have an occult or mutant form of HBV, as in spite of good results I have great pains in the upper right quadrant where liver is, and my GP cannot explain that because the tests are generally fine. Can I do any tests to find out whether it is a mutant or an occult case and whether it is possible at all after 24 years?
Thank goodness you have helped me understand, I could have wasted my whole life imagining i have hbv!!!!! My ALT's were pretty normal, just 3 points above normal (was dehydrated at the collection time), but I didn't check recently. So maybe that'll be the first thing I'll ask a doctor when i find a good one. Thank you very much for your help. You're doing awesome job. Regards,
40 I
Hi!
Ive'got my Igm anti-hbc results as follows:
Anti hbc IGm = 0.302 ( NON REACTIVE)
AND OTHER earlier results as follows:
HbsAG = REACTIVE
HbsAB =NON-REACTIVE
SGPT =21.5
What does these means?Please advise.Need your help!=(Thank you
Thank you very much for your message,my soul is delighted!=)
In my SGPT results,it showed a normal value.Do I need to undergo other liver function test as of this moment?Or after 6mos,a year?
Sir,I would also like to ask if there is any possibility that I can work abroad and earn for a living?
To be exact,I just passed the Mechanical Engineering exam last March 2012,after a week of getting the good result,then was diagnosed with this silent infection.I'm starting to lose my plans and dreams..=(
Is there any opportunities abroad that will accept me beyond my condition?
As in my country,upon knowing you're having condition like this,they will not accept you,social stigma is very usual.I'm really afraid If I still have a chance to earn for a living and lift up my family's poor status.
Thank you in advance for your response.
Godbless u and More Power!
41 R
Dear Paul
I hope you are well.
I am now 30 weeks pregnant and my blood test showed that I am HBsAg positive and HBeAg Positive. My doctor recommended that I should get another blood test to find out the HBV DNA. It turns out that my viral load is very high. It is 103,014,000 copies/ml
My doctor explained that I should consider taking medication to reduce to viral load. He recommends to take Lamivudine as soon as possible in order to reduce the chance of passing hepatitis B to my baby.
I am very nervous of taking this medication as I have been reading about the risk that could harm my baby. But at the same time, I do not want to pass it to my baby.
Could you please advise what I should do?I am eagerly waiting for your reply.Thank you in advance.
42 S
Hello!
I'm chronic carrier of hepatitis B (from 2years old, I'm 25now). I don't need any treatments, I'm in low risk. I'm pregnant, in 33week. I want to get some information about breastfeeding. My GP from Poland said that breastfeeding in my situation isn't good idea, but my 'liver doctor' said that it's OK. I don't want to give my virus to baby. I know that he will get injection after birth, but I'm not sure about breasfeeding. I scare that baby can bite nipples and get hep B with my blood. But I want to give him my milk, because I know that mother's milk is the best for baby. So can I use breast pump and give him my milk without breastfeeding?What do you think- this is good idea?My milk is clear from virus?Can I get some advices and information about breastfeeding, mothers with hep B etc from you,please?Sorry for my English, isn't perfect, but I hope-you understand me :) Have a nice day.
Best regards,
43 M
Re couple and IVF with hbv partner
Thanks Paul
It was very helpful and calmed me down
We will action all the points and get back to you.
44 M
Thanks paul,
I'm going to print all 3 links out so i can have them to hand.
As for the medication i will request it but on the chance my consultant say i can't have it is there other links i can go through to retrieve the medication?
Jon will be at work/in a meeting so hopefully he will call you back when he's home to discuss everything with you,
I'm losing faith in any healing at the minute a situation i never wanted to be in but thanks for your possitive attuide.
Thanks again for all this info. Later......
He understood I am undetectable and wants to stay with me.
45 A
i am j from philippines, i am 24 years of age i just want to know if i can work abroad despite of having hepa B, like others i inherited it too from my parent, my sister have it too also my younger brother, i really want to work abroad.. please help me..
46 y
HI PAUL,
IM K, fROM PHILIPPINES, 24 YEARS OLD, IM CURRENTLY EMPLOYED HERE IN THE PHILIPPINES AS PROCESS EXECUTIVE AT INFOSYS BPO LIMITED. IM PLANNING TO WORK ABROAD FOR HIGH COMPENSATION, BUT UNFORTUNATELY I HAVE THIS KIND OF HEPA B. I WAS ABOUT TO HAVE A WORK IN MIDDLE EAST IN KUWAIT BUT THEY UNFITTED ME TO WORK EVEN IF ITS ONLY OFFICE JOBS.
DO YOU KNOW ANY COUNTRY WHICH ACCEPTS OR DOES NOT DISCRIMINATE INDIVIDUAL LIKE ME?
I ATTACHED HERE MY CV.THANKS.
47 K
Good morning
Just yesterday I had my doctor run a general test on me to ascertain my current health state. Meanwhile, the night before I had symptoms of Fever and general body weakness; that was what informed my decision to carry out the test upon the advice of my doctor.
When th results came out few hours later I was shocked to be told that I tested positive to the hepatitis B virus. Prior this time, the only major illness I ever had was peptic ulcer; for which I was treated and eventually got better.Apart from that, I have always been very sound and healthy.
My doctor went further to carry out a liver function test. The result, according to him shows that my liver is still normal. Though he said the virus may been in my system for over six months now. Hence, we may be dealing with a Chronic situation. He placed me on some oral medication while he referred me to a specialist (a gastroenterologist) to further carry out a more specialized test on me. He even recommended a liver ultra sound scan.I shall be meeting with the specialist in two days time.
In the meantime, I started checking the internet since yesterday trying to find out as much as I can about the HEP B virus. In the course of doing so, I stumbled on your website.I sincerely require you kind assistance as to the following:
A. The vital questions I need to ask the specialist as regards subsequent tests, treatment procedures, etc.
B. Best ways to manage this conditions personally to ensure I overcome it (where possible), and to ensure I do not pass it to my colleagues, other members of my family; especially my spouse who has been living oversees for over three years now and is billed to return home in a few months time.
C. If my spouse, is not already infected, how possible is it for us to have sexual intercourse without infecting her with the virus?
Your timely and candid advice would be most welcomed and appreciated.
Kind regards.
48 T
Dear Coordinator,
My friend has been recently diagnosed of Hepatitis B and she live in the UK.
Is there a place in the UK to get HBSAg Quatitative test?
Best regards,
49 T
hi there, i am filipino women,living here in the philippines. 2009 when i found out that i am a carrier of hbv. I feel so sad and hopeless , .i dnt knw where to work bcoz all of medcal requirements needs hbsag screening. I feel the discrimination from other people,.i like to talk to other wit my same condition
50 , :'(
Dear Paul,
Thank you for the information that you sent through to me and the phone call. You were there when I was at a total loss.
I did hear from my doctor the following day who told me that I should go to the GUM clinic the following day for an accelerated course of the vaccine and to have a blood test. Speaking to the doctor there and then reading through the information that you sent me has worried though as it says that hep b can be transmitted through oral sex and also through the saliva of someone suffering from hep b entering an open wound on another person. As I mentioned to you I had a cold sore for quite some time when we were going out and this did bleed when he kissed me (silly I know as he could have got that from me but I did warn him!)
I went for the vaccination on Friday and had blood test then but the more reading I do and also as a consequence of the doctors reaction the more worried I am getting. Do you think that there is a chance that I could have been infected through the cuts on my hands or the cold sore?
Unfortunately the fear of all this did cause my boyfriend and I to have a big argument which I am afraid I did not deal with very well and he is not talking to me. I feel that it is my fear and ignorance around the disease that has caused this and feel absolutely terrible. My mother also found out through looking on my I-pad and has also made me ultra paranoid. I am sorry to write to you like this but I am very anxious and really just didn't know where else to turn.
Kind regards
51 K
Thanks Paul,
I'm very grateful for your reply. Thanks so much for your help. Please find results attached.Hopefully I still have a chance of clearing.Best wishes
52 M
Dear Paul,
I am a volunteer at st Johns ambulance and have been trying to get my Hep B jab for over 6 months now. My doctors surgery wants to charge me £90 for the jab which is quite costly. St Johns say they don't have the funds to pay for the jab and my doctors wont give me a cheaper price. I know other people from my unit have had it for free from there doctors but mine say I don't know how they can charge nothing. I looked on your website and saw the attached. I was wondering if you know anywhere I can get it done for free or if you can write a letter to my doctors, or if i can use or edit the attached? I feel its pretty unfair how some people can have it for free and some can't. Im giving up my time and money helping people for a good cause but feel Im putting myself at risk every time I go out and do treatments when I don't have this jab. I love helping out St Johns as a charity but feel reluctant to do duties knowing Im putting my own health at risk.
I look forward in hearing from you.
Kind regards
L
Hi Paul, sorry have not hitting back to you sooner, been meaning too. Well good news! I presented my doc with letter and form last week and they gave me my 1st injection there and then for free! Got my next one booked for 1 months time so all good. Thank you so much for all your time and help with this matter, I really appreciate it, I now can do duties knowing I'm protected.
Thanks again for all your support,
53L.
Hi Paul,
My mobile number is and my email is com, I am facing some problem with my landline will have to sort it.
My husband has given the hbv blood test and it seems it will take 10 days for the report to come. And the process will follow from then. I am still waiting for my blood report to understand the level of hbv. It seems neither my GP or mid-wife received it. They have said it will take sometime.
Today I received the reference letter from GP and it appears until 8th Nov there is no appointment with liver specialist. I have called GP today again and highlighted this is too late (as by this time I will be 5 months pregnant) and not acceptable as I want to understand the severity.
I am trying my level best to push this but quite disappointed with the process.
I also want to understand a quick thing, today I had blood in my vomiting in the morning. Is it something to worry and is it related to hbv.I am worried that the process is so slow on hbv.Thanks for all your support Regards
54 L
Good evening
i came across your email address on web site (www.hepb.org.uk). I was diagnosed with with Chronic Hep B and placed on anti viral medication about 5 months ago. We have no idea where or how i got the infection or how long i have had it for, but the virus load or amount of virus has come down from the millions to the thounds since taking my meds.
Me and my husband are very keen on starting a family ASAP. Unfortunate i was sterilised over 11 years ago during my first marriage. We have been told that my liver damage is minimal and that they can not see any reason why i can not carry a pregnancy normal. We are now looking for a IVF clinic that will accept a Hep B+ patient, this it self is proving difficult in this country. Is it
Is it possible to get a copy of the IVF HBV Mums pack that was mentioned on the forum at the above website.
many thanks
55 R
Paul,
Thank you for your helpful response. I have read for information leaflets and printed your letter which she has just read and found helpful. She has got up to watch Television with me tonight and just had some butternut squash and cabbage with a little fish and enjoyed. She amazingly said put me to sleep and wake me in three months so I really know she is finding this scary. Three weeks ago she was in iceland heading on to Alaska and an expedition through the North West Passage and here she is home in boring Glasgow and exhausted at home. Her boyfriend is in Greenland at present however came and visited her was tested and had first Hep B vaccine. He was lovely and supportive and is in contact daily so good.
I think my daughter may contact at some point.
56 Cheers a
Hi good day!
I saw your site www.hepb.org.uk and found your e-mail address. I'm N, 25 years old, from the Philippines. I've been diagnosed with the said disease 10 years ago, when I was in 2nd year high school. I didn't know how I got this disease and I didn't have an idea what this disease is all about - not until I reached college.Now I'm a registered nurse here in the Philippines. Had a 1 year practice in the government hospital and rural health unit in a local town.Honestly, I'm desperate enough to look for a job overseas. Working here in the Philippines is so difficult because nurses are terribly exploited.Is there a way that I can work there in UK? I found http://www.jobs.nhs.uk/ and there are a lot of job openings. Is there a hope in my situation right now? ;( Please help me
57 . :-(
Dear Paul,
I hope you are well. Thanks a lot for the info and the reassurance you gave me when I called.I had my appt today with Dr Alison and he was very reassuring.He did a comprehensive blood test for hep b.so am waiting for results.Thanks
Turns out it was an old resolved infection as you said, why do they worry us so much? And not know negative means negative!
58 K
Good day! Im from the philippines and currently working as a nurse. Im am inffected with hepB since i was a child, i got it from my mother, also my other siblung have this kind of problem. I want to go to UK or Australia, do you think they will allow me to practice my
Profession there? What are the best thing that i should do, so that i can work abroad?
59 R
Hi Paul,
I am incredibly honoured that you let me have a read of this. Its very pacey and I stayed up late on Wednesday and finished it on Thursday morning.
I'd be happy to reread and offer some thoughts on editing. As I mentioned my emotions are a bit up and down at the moment while I'm waiting for my consultant appointment so I don't want to make any promises I can't keep on timelines. Do you have a deadline that you're working to?
Many thanks
60 M
p.s. I hope that you feel very valued for all of the positive work that you do. I get the impression that you are a lot of help to a lot of people.
Hi Paul,
I hope you're well. Thanks once again for all the help and support you gave me. You may remember that I eventually had some good news which is that the hbsag is now undetected so that my status is immune due to a previous infection.
The whole illness took its toll physically but also emotionally and its taking a while for everything to sink in but obviously I'm much happier.
61 S
Hi Paul
Thanks for the E mail but I was unable to download any of the attachments Can you help?
Again many thanks for you great help last evening
Best Regards
62 H
Many thank you, will keep u posted as discussedThank you for the guideline and the advice with support, please if you have any literature that can help my recovery plan kindly forward it to me. Many thanksThank you Paul, from the bottom of my heart your advice has been helpful. Many thank you. I thank you for the advice and ongoing support so far, my wife and children have done the test and the result came fine today. Please help me with any information that you think can be beneficial to me, and my liver specialist apointment has been book too.Thank you for the support and also thank for giving your time to listen to me.
63 Ebenezer
Paul
Thank you for taking the time to talk with me today in regards to a possible cross contamination event that took place at the college. The person described the accident as the patient having a serious cut to his arm caused by falling on to a porcelain urinal divider. The first aider gave urgent first aid treatment and in doing so put on a pair of gloves supplied in the first aid box, the glove consequently split allowing the passage of blood to an unprotected wound under the glove hence the concern about possible cross contamination.
I understand that in your opinion a shot of Immunoglobulin should have been administered within 48hrs of the incident and not as happened a shot of Hep B vaccine?
What we now need to understand is what the actual risk are in relation to this event and also for future occurrences where passage of blood and body fluids are a risk.
From what you say the amount of Hep B in Cambridge students is somewhere between 1 in 50 to 1 in 100 which is actually a staggering amount.
I would be most grateful if you could advise on what we should be telling our first aiders, any information on first aid packs and any further information that may benefit us at the college.
Thanks again
64 B
Hallo, Paul,
Thank you very much for talking with me last night. I felt much better after we had talked, and appreciate the time you gave me.I have not received the e mail from you, yet, and wondered if you had perhaps not got my e mail address properly. Certainly,my name is not an easy one to spell! On the other hand, it is possible you have not yet sent me the e mail with all the info in it. But, in case there has been a mistake in my e mail address, i thought i would send you this, which should have my e mail on it-----This evening, i am going to spend a week with a friend in Brighton (accompanied with my 4 little dogs!) By the time i return, i am hoping i will be able to get my results from the doctor surgery. I will ring you when i have them.I hope to receive the info pack today, before i go, if possible------but if it is not possible, i will see it on my return. I have spoken to my GP about the results of my blood test. As yet, i do not have a copy. My GP said that there were no surface antigens detected. She said that they only tested for acute, active Hep B infection. She said i obviously do not have this. But, when i asked her if i still carried the virus, and also if i was still infectious, she did not know the answer to this.
So, i do not know if i still carry the virus, or if i am lucky, and it has cleared completely. She said they did not test for anti bodies, but only tested for the surface antigen.She is a nice GP, but she has only known me for 3 years, and did not know me when i was Australian Antigen positive. I did tell her about this, though, and i assume it is in my computerized medical notes?My liver function test was normal.Do you think i am OK, and can now assume that i am completely clear of the virus, and that it will not ever come back? If there is no
detected surface antigen, does that mean i am clear forever?I might write to my GP, and ask her if she could reassure me about this. But, i wondered what your opinion on this is, Paul?
Many thanks for your help and support.
Best wishes,
65 D
Hi. Paul
Thanks for your reply. Because of your information, I have confidence to achieve my dream. I have been depresion about that for long time so that I lost my dream. I have gotten hepatitis b positive,but I do not have any symptom so no treatment now. Should I take ielts or pass 7 score? I really appreciated it for your help. I will try my best to achieve my dream.
Thanks and regard
66 S
Just got call asking me to go tommorrow for a scan. Now I'm worried at how quickly they are getting me sorted. Not like the nhs. Last time I had scan I had cancer. Thank god I had you to talk yo.
67 A
hi paul,
thanks for your reassuring words . they help a lot to calm my nerves.well i haave been living with hbv since i was diagnosed. but since i was lost my job, i have been stress and have depressive feelings and consequently putting on weight.Now am trying hard to lose it but difficult and is affecting my family life and my son.
68 L
Thank you so much Paul, you have been so helpful and reassuring. I will certainly be in contact with you again as I would like your advice on how to manage my liver, and obtain the best care via my GP (i.e. tell him what I want/need).
In the meantime, I will pass your message onto my partner - of particular interest is the risk of transmission during intercourse and also the accelerated vaccination course.
Thank you once again for all of your help. I hope that one day I will be able to help other HBV patients as you have helped me.
Regards,
Hello Paul,
Thank you so much for your help earlier this year and putting my mind at ease about Acute Hepatitis B. Thankfully it seems that I have cleared the virus as my last blood tests showed antibodies and no sigh of the virus.
My question, which I did pose to the specialist, is, does this mean that my blood is no longer a risk to others? For example, would you still advise close family and sexual partners still to be vaccinated? Or does this mean that I have cleared the virus and I am immune, as if I'd have been vaccinated against the virus?
Sufice to say that I always err on the side of caution, so am living as if I my blood still poses a risk to others. It would be a tremendous weight off my mind however if, now that I appear to have cleared the virus, wounds would pose no risk to others.
Thank you in advance for taking the time to read and answer my questions.
Regards
Dear Paul,
Thank you so much for another beautifully worded response. Indeed the human body is an amazing and wonderful thing! I have been incredibly lucky in that I felt so much better so quickly, especially after speaking with you! In addition, happily my partner was not infected and is now fully vaccinated & immune.
Moving forward in my life, I would very much like to help others affected by this illness. If there is anything I can do, for example, any organisations where you think I could offer support, sharing my own experiences (both practical - the NHS is useless - and emotional) and helping others to come to terms with what is happening to them I would very much appreciate that direction.
Once again Paul, your words and reassurance have really meant the world to me and got me through some very difficult and worrying times. I am truely grateful.
I wish you and your wonderful team at the HepB Positive a Merry Christmas and a happy, healthy 2013.
With warmest regards,
69 A
Dear Paul,
Thankyou so much for this information. It is very interesting. I haven't had time to access all links yet,but will get round to it this week. I will let you know what I decide to do.
Kind Regards
70 J
Hi Paul!
Just to check your email. It was very nice speaking to you.
Thank you so much for your advice.
You have made me happy today.
Thanks
71 C
Hello. I was recently diagnosed with hep B infection. Just randomly did the test, not because I was ill or anything. I didn't complete my vaccine shots 2 years ago, so I dont know how long Ive had it for. My liver function tests are normal, but with my liver enzymes a little above the margin, but the doc says that can be normal. I had these tests done in a government clinic in Nigeria, they just said I can go on eating anything and return for a test in 3 months. Please what do you suggest? I hope they know what they're doing. Im kinda scared.
From Ms. M
Hello Paul
Thanks a lot. Feeling at ease :)
I would send the results as soon as I can.
72 M
Thanks Paul
all received. did you ask me to check with mum what blood pressure tablets she's on?
thanks for your time and encouraging words today. it's been most helpful.
best,
73 v
Dear Paul,
I trust you had a wonderful holiday and a great start to the new year.I am fully at your disposal and have already begun requesting a few of the local GP's in Canterbury if they would allow us to place up some fliers in their waiting rooms/receptions.In reference to the short personal story that you mentioned last year,do you still want me to write one up?If so roughly how many words?I also have a few ideas in terms of accessing some of the East African community in London(mainly women and children),and encouraging them to go for Hepatitis testing and increasing awareness.
Look forward to hearing from you,
Regards,
74Almas
Paul
Thank you for so generously giving me your time this morning.
I very much appreciated your reassurance that there still is some hope for me!!
Attached please find three copies of various test results. One is my first liver function test from the time, last August, when I had been feeling unwell and was showing persistent symptoms for some time. One is my most recent liver function test, from blood samples taken in late January 2013 and finally the recent result showing my current Hep B status.
I am sending you this information from my work email address, which is fine for you to use when communicating with me.
I will try to contact you by phone later this afternoon when you may have had a chance to look at these figures and give me your thoughts.
Once again thanks for your help.
75 P
Hi Paul
Thanks so much for doing the research for me. I will take you advise an consider 50 50 with costs.
Many Thanks
76 J
Hi Paul
Thank you so much for your telephone call today. Sorry if I went a bit quiet but a work colleague came in and I couldn't keep on talking.
Kind regards
77 M
Hi Paul,
Firstly, may I thank you for not only the wonderful website that you administer but also your kind and wonderful voice when I use the helpline. You always make me feel at ease and very comfortable talking confidentially in your presence and you should give yourself a big pat on the back for that.
My username on the forum is L and I am writing to you in response to the post I made on the Message Boards about my blood test results. I suppose I am looking to you to provide me with some guidance managing what hopefully will be a bug (I love your use of that term) that I will live with for the rest of my life.
Why hopefully? Well, I currently love my girlfriend and she is a chronic carrier (as are several members of her family) so I kind of hope I am going to be stuck with the bug for several years to come.
Firstly, could you do me a huge favour and change my username on the website. Lim is my girlfriends surname and it was a pretty silly username for me to use. I know she doesn't talk openly about her situation so it was stupid and irresponsible of me to use her surname as my username (twice). Could you possibly change it to Buglover or something like that.
I thought I would just start out by telling you what I would like. Like a Hep B Father Christmas list. You can then tell me how you can help me (if you don't mind that is). I am also a writer and would love to write a no holds barred article about my association and experience with the bug (maybe even split it up into several fortnightly articles if you want)? Anyway let me know if that would be useful for you.
Almost all of my questions involve sex (something I will write about a great deal because I think the power of sex is not to be under-estimated even when the presence of a nasty bug).
I have been married for 15-years (and with my former partner for 20-years). I am currently going through a divorce and during those 20-years I never used a condom ever. My wife used contraception and whenever we wanted sex it just naturally happened.
I met my new girlfriend in June of this year and she told me she had Hep B. I had to start using a condom but after 20-years it seems my little willy doesn't like condoms because I lose my erection during full intercourse. I believe I have foolishly allowed this erection problem to place myself in more risk with my partner. I have to try much harder to please my new girlfriend in other ways. I cannot have oral sex which is so frustrating. I used to constantly worry about getting vaginal fluid on my fingers and then putting them in my mouth. These past few weeks I have been a lot more relaxed about this (maybe foolishly I don't know).
When my girlfriend is having her period she becomes more sexually aroused and her periods last a long time. We assume the presence of blood heightens the risk but we don't always know when blood is going to be present (apart from the heavy periods) so usually at the beginning and end of her period. I am so used to just getting messy that I am finding the whole (not messy) thing rather plastic and it is affecting my libido. Other than sex I feel very positive that I would be extremely safe around this bug in terms of staying away from her blood. So it all boils down to sex!
So the Doctor has told me that I have not developed enough antibodies after my third immunisation to remove me from risk (2%). He has told me that I have to wait one year to have a booster injection and until then I will always remain at risk. I have no symptoms whatsoever and a great frame of mind. I just have to get used to the fact that I am always going to be exposed to this bug.
My main question concerns immunisation. Do I wait for a year? Can I take more immunisations immediately (i.e., another course of three). Am I just one of these unlucky people in the world who will never develop immunity? How will I know? Can everyone develop immunity but it just takes time? Should I start wearing an all over body suit just to have sex!
Thanks in advance
77 L S top Talking - Start Acting - One Life
Thanks so much Paul. I will forward this info to my son and daughter in law and get back to you when they respond to let you know which way they want to go with this offer of help.
I have not yet had a response since sending my son and daughter in law your (very helpful) pamplets earlier this evening but I guess that they are still trying to come to terms with what is going on in their lives.
It can't be easy for them and I guess that it will take a little time for them to come to terms with what is going on. Being pregnant and with this infection
Many thanks again for your support at his strangely unfamiliar and unexpected point in our lives.
78 J
Hi Paul
Many thanks for your reply and I will forward this onto my health and safety buddy.
Regards
79 Pete Fireman unvacc
Hi Paul,
Please please can you help with me private labs/Clinic (which are not too expensive) to have a HepB test with the complete breakdown (like Viral load, Alt etc).
My NHS consultant is just a waste of space! He just ordered another test (after messing up the first one) but its going to take around 3 weeks. I want my own test and second opinion before I see the consultant next (that will probably be in a month's time)...They are bloody time useless!!
Please please Paul help me with a list of places I can get this extensive test done.
Cheers
80 N
Paul
I don't want to put you through the hassle when you have mobility issue now. I can wait a bit longer to see and speak to you in person. I am grateful to have found someone who can understand me even when I have never seen you in person. I thank god letting me know you.
I am also in a lot of fibro pain and my body is like an infernal being heated up like an oven and cannot understand this heat. I think my body is fighting real hard at the viral. If you are free sometime next week we can meet up when you are better at walking. Please let me know when you can. Thank you so much
81 C
Dear Paul
You have saved my sanity so many times over the years may I name my first born after you?
82 K
I am trying to contact paul desmond my uncle who was a haemophiliac has passed away last week ,he was infected with hep c through his factor 8 treatment in the 70s ,the undertaker is refusing to embalm him or dress him can you help my contact number is ,thank you
83 F
Hi Paul, Sorry for delay but thanks again for information below. I managed to get in right at the last minute with Nomad Travel Clinic and having the 3rd injection on the 3rd May (day that I fly).
84 I h
Hi Paul Just had a phone call from son abroad and he is IMMUNE!!!!!! What a relief - just as you said he would be! Thank you! We will do our best to support our youngest son to stay in a good place
85 L
Hi L
This is all too common, the liver units say low risk and not detectable in bloods and therefore impossible in other fluids, patients are told this and act accordingly and all hell breaks out and rings the helpline every week! If there is ever a worry better to air burst under me first, what i'm for so to speak. I think I'm on hot coals worrying about the emotions of patients this month there's a suicidal chinese and a we have had to go to anti depressants Ghanian, it is hard on students alone overseas, and a pregnant mum yesterday with two envelopes one her hbv pos result and one for her hubby. It comes in waves. besto
86 Paul
Thank you ever so much.
87 Evans
Paul this is a superb illustration of targeted patient focused research. I'll email tomorrow as travelling at present.
I contacted Paul about the possibility of gaining the patient, carer and public perspective view through lay reviewing of applications for research funding. The applications are coming in to the Policy Research programme Call for research on Hepatitis B and C management. The adminstration and peer and lay review for the Call are handled here in the central commissioning facility.
Having heard Paul describe what he and his network of colleagues are undertaking for public benefit, it is obvious that I should not be diverting this valuable work with the request for a lay perspective. But I will talk to policy research team about what else is possible and come back.
Best regards
Yours sincerely
88 J
hi hi thanks for helping him, he is alone in prison with his vaccine reaction
89 K
Hi Paul
Well the GP does not have any record of me being hep b how nice ha? He never knew lost it from the maternity unit and wants to test me instead of vaccinate my baby, he ask do I use drugs or am unfaithful. I have to get the blood test done again and get the referral.
Thank you so much for trying hard to find something for my child to get him vaccinated and respond after 2 failed courses, But we can study a intradermal process for my child as you suggest? I promise I wont talk about suicide again but they said I would infect my baby and I would rather die.
Thank goodness you are there to talk to and explain how to avoid all these risks.
90 G
Thanks paul,
Got the hep b results reactive and hbeag antibody level is reactive, just was a note stating, consistent with recent infection. Heard nothing from the specialist will push a little tomorrow. My girlfriend came back with negative but has antibodies, which is baffling how I got this I guess . Thanks for all your advice. Lets hope I clear
Regards
91 C
Hi Paul,
I spoke to GP and they requested the info that you provided and see the email below as reference what I send to them.
They will call me back and I will let you know the outcome.
Your support is much appriciated on this issue.
Best wishes,
92 F
Hi Paul
Without you I don’t think I would ever have got vaccinated
93 S
Hi Paul
Thanks for the vaccination information, why do GP’s not say/know where workers can get them?
94 W
Hi Paul
Every time I read your e-mails I just burst into tears,you are the most strong headed person that I ever met.....Just let me speechless when you telling me what you are going through and I just moan about something that did not happened.I feel like I might loose the emotional batlle with this that is my fear.Maybe start to take councelling time with someone might help.Sometimes it gets stuck into my mind that I can start a treatment that can help me to get rid of this virus.I will try to stay strong and fight of all the negative thoughts that goes trough my mind and you dear friend I just feel so stupid when I coming and tell you all this ...when you might have a difficult times.I should take example from you and take every day as it comes and try to enjoying it.Thank you for the powerful words that you have told me,it helps me alot and I hope to stay positive,not falling back.Thank you being so kind to me and for the fact that you gave me a wake up bell with your reality.I wish I could have someone to hug and burst into tears without saying a word...just let it out...but unfortunately the emotional side of this I hav to take it on my own and deal with it,that is why I find people like you....
95 F
Hi Paul
I am very upset, I am from Turkey and have been diagnosed with hbv. My father has recently died from liver disease and other family members have hbv. Why my GP say to my wife does she trust with with sex he start such pain in my life. Then the practice nurse whrn vaccinating my wife, she did not get it in 9 years marriage ask have you left that man yet. So painful and then they start asking am i heroin addict why??
Thankyou so much for explaining to my wife about all this.
96 S
Hi Paul
I am gay can I have sex with a hbv carrier if I am vaccinated? I said Yes. Thankyou and voice in background saying told you so and hung up fast.
97 G
Dear Paul
Thankyou so much for answering all my questions I have decided hbv is no reason not to marry my boyfriend . From the bottom of my heart thankyou.
98 C
Dear Paul
Thanks for the information on hbv, my girlfriend has stopped eating mcdonalds every day, (she works there) and all the liver pains, tiredness and sleepless nights have gone away. It’s funny she knew she had this for 18 years yet no-one ever explained anything to her. I am getting 2nd vaccination next week and once again thankyou for the long long phone calls.
99 B
Dear Paul
Thankyou so much for ringing back I am sorry I got scared and hung up without talking first time, it really helped you explaining cleaning blood as a caretaker is a high risk. I was so horrible to my husband and he swore he was faithful. Why do the NHS insist everywhere that its a sex disease? Everywhere I looked and the GP all said sex, when I read your information it all made so much sense, he has cleaned up in a boxing club for years, why don’t they talk more about this risk?
