'1000 visitors to Prometheus!' greeted me the message in my inbox this morning. In little over 8 months, writing posts about disease and drugs, with no viral campaign or celebrity endorsement and next-to-no respect for deadlines, here we are: a 1000 visits to this humble blog. A milestone of sorts and yet I couldn't help but feel guilty about the whole thing. It's been over a month and nearly 120 visits to the site since my last post and I feel that I've somehow been neglectful not only of this blog but the loyal readers who have been with me in one way or another since the start of this experience. I’d like to apologise for that and try to offer the following as a way of explanation.
I mentioned in my last post that I was waiting to hear from my doctor as the treatment didn't seem to be working for me. When I received the phone call, it was indeed the news I didn’t want to hear. The viral load in my body had gone back to the pre-treatment levels which effectively meant my treatment was just not working at all and I was adivised to comlo off the treatment straight away. Not the best piece of news as you can imagine! I found all of this out over the phone [much to the chagrin of my loved ones] and I haven’t seen the doctor since then. I have an appointment on Friday but regardless of anything they might say, I now know I’ll have to wait at least a couple of years for a stronger version of the treatment to come onto the market. In the meantime, we might try and see what we can do with the Hep B but I’ll find out a lot more on Friday and I’ll be sure to post. Promise!
I've been drug-free for over a month now and needless to say it has been a period of reflection and big changes. I'll be sure to share this with everyone on a future post.
On the marathon front, things are going well and perhaps one of the very few silver linings from this situation is that I can now train without having to cope with the side effects of Interferon. Mind you, the withdrawal effects were quite strong and it's only in the last few days that I’ve felt like I’ve gone back to being pretty much me pre-Interferon. Now I ache and I’m very tired but it’s all down to the running!
Before I leave you let me thank you again for helping me to get this far and even though we didn't get the result we wanted this time around, the battle continues and I don't give up easily!
For the last few months I’ve had a weekly date every Friday with a very cold and piercing individual whom, truth be told, I really hate but whose weekly kiss upon my body is hopefully helping me to rid myself of the horrible viruses that run in my bloodstream. Whenever the needle breaks through my skin, I feel a little prickly sting that then turns into a dull itchy pain when the cold contents of the small syringe enter my body. And then, almost straight away, I feel when the drugs hit my system. My head goes a bit light, I feel my shoulders drop while I sink on whatever chair I happen to be sitting, I stare for a few seconds at whatever is in front of me and then I start to feel my whole body being drained of all the energy I might have had up to that moment. A quite unfortunate situation really because since my weekly datesstarted, ‘energy’ is something I haven’t really had for any period of time. After the first injection, my body has felt like its batteries had been taken out and it hasn’t recovered since. So, when on Fridays my energy is drained again, the drugs are simply taking the little reserves I’ve built up over the week, taking me back to square one, needing to start building my weekly energy for the days ahead.
Regrettably, this lack of energy has slowly but surely taken hold not only of my body but my life too. What started as a tired weekend [I have my injections on Friday nights so they affect my work as little as possible… the bills still have to be paid!] has turned into a daily struggle to remain upbeat, positive and to find the energy to carry on with my life as normally as I can, finding the energy the drugs have denied me in other unlikely sources. A good book, a nice cup of coffee, little personal projects here and there. But more importantly, I’ve found that energy in the love, patience and support of my wonderful partner, my amazing family, my dearest of friends and my understanding workplace who have never allowed my constant cancellations, my lethargic chats, my tendency to just crash on the sofa staring at anything to diminish the amount of energy they inject into my life every day. However, it’s hard sometimes not to allow the tiredness to just take hold and it’s very easy to slip into a vicious circle of tiredness and lethargy and if I cannot find ways to fight it, once it takes hold I might be stuck with it for the next 6 months [or maybe even the next 18]. So, I’ve talked a lot before about trying to fight this but have never taken decisive action. Well, that changes from now and the fight back starts here!
Euclides is running from Hepatitis
I don’t give up easily and I’ve never been one to run away from my troubles. In fact, I’ve never been a runner in any sense of the word, occasionally mocking the courageous winter joggers in Hampstead Heath whilst I slowly strolled in search of a good cappuccino. But I’m making an exception this time and I’m running from hepatitis, or rather, I’m racing it! I’ve decided that the best way to fight the constant state of drug-induced slumber my life has become is to run the Edinburgh Marathon on behalf of a charity. ‘Erm… how’s that the best way Euclides?’ I hear you ask. Well, here’s how.
Firstly, it is a way for me to start wrestling control of my life and my health away from my treatment. This isn’t a reckless, spur-of-the-moment decision and I’ve discussed it with my doctor. I’m aware it is going to be very hard to train up to 5 times a week whilst the interferon is working its magic on my body but the fact that my training will help me get fitter to deal with the drugs and the even healthier lifestyle I’ll have to adopt will increase the chances of my treatment working should hopefully offset the nastiness of very cold 6 AM runs in the months to come.
Secondly, and more importantly, there are two worthy causes that will benefit from my efforts. The first one is the issue of raising awareness of hepatitis in our society. When 1 in 12 of us is suffering from hepatitis and as a society we don’t seem to offer the levels of awareness needed to prevent and raise the standard of treatment of such an ailment, it is important for individuals to make as much noise as possible to draw attention to the issue. That was initially the purpose of this blog but somehow along the way, I never actually came out of the Hep closet. I opened its doors wide open for anyone who would want to make the effort and take a peek but I truly remained perched on the floor of the closet. Not anymore. By taking this decision, I’m effectively coming out of the closet and because I need to raise as much money as possible, I will have to make all the noise I possibly can, hopefully raising awareness about these illnesses along the way.
The other cause is the charity that will benefit from the funds I raise during my training. As I mentioned above, the situation I’m going through at the moment would have been unimaginably worse without the love, support and encouragement of my close network of loved ones who have been there willing me on in one way or another. However, there are millions of people around the planet who are going through situations many times worse than mine and who lack the help they so badly need to continue. Amnesty International is one of the few charities whose unflinching commitment to provide a word of hope for those people while at the same trying to raise awareness of these issues worldwide has never wavered. Their work is very important, especially right now, and it’s essential that we try and help them whichever way we can. That’s why I’ve decided to do my bit.
Over the next few months I’ll talk a bit more about these things but this is a very long post as it is and I think I’ve bored you enough for one week. Incidentally, if you’ve just been sent here by a link in an email/forum/fundraising page, please stick around and have a look at the blog, there’s a lot more about me, hepatitis and other things. And if you’re one of the loyal readers of the blog, thanks for helping me get this far!
Last [but most certainly not least!] please go to my fundraising page here to be effectively mugged by me!
Remember when I merrily mentioned during the first week of my treatment that I was just feeling a little bit tired? And then when I worriedly mentioned last week that the tiredness and achiness remained? Well, three weeks in, I'm physically and emotionally drained! As a very active 25-year-old, suddenly facing waking up in the mornings being just as tired as I was when I went to bed and knowing that I've got a long day in front of me, it's e-x-h-a-u-s-t-i-n-g! It's pretty much like taking the juice away from the duracell bunny! Mean!
Anyway, it just means that by Friday evenings [the night of the injection] I'm ready for a wild weekend of crashing on my sofa looking like your stereotypical dope-head without the aid of recreational drugs! A barrel of laughs as you can imagine... Thankfully, my partner is an angel and life is not as bad as it could be.
Having got that off my chest, everything else is alright. The tiredness is an annoying side effect but one that relaxing under the sun will sort out nicely. I'm still very positive and I'm feeling healthy. I'm eating more than normal [I've gained a couple of kilos] and even my sleeping patterns are starting to resemble a normal person's fare.
That's my weekly update and if you want to know a bit more, you know the deal, drop me a line!
Second week into my treatment and I haven’t got much to report really which, depending where you’re standing, it’s either good news or bad news. As I mentioned last week , after my injection I just felt tired and my muscles a bit achy but that was it. Regrettably, the tiredness and achiness never went away and it was, needless to say, a long week. However, bearing in mind the long list of side effects I was presented with before I started my treatment, it’s going rather well!
This week I had to give myself the injection and it was a very shaky affair I must confess. I don’t know if it was fear or anticipation but my hands would not stop shaking. Thankfully I managed to do it and it was alright. The tiredness and achiness are still here and they seem to be here to stay but I’m feeling very positive and very happy that no big side effects have really kicked in so, all in all, another good week I’d say!
That’s it for this week really. If you want to find out a bit more, drop me a line as I’d be happy to hear from you.
Thanks for reading.
UPDATE: I forgot to mention something else. I have had two injections so far and I've got two big red spots in my stomach where the injections went in. It is a well-known side effect and nothing to worry about but 12 days after the first injection, the first of the lovely red spots is still going strong. They are the size of a golf ball and a bit tender to touch. Nothing really massive really but I thought I should mention it anyway.
Well, it's not exactly soldiers landing on the beaches of Northern France but D Day is certainly here... And D stands for Drugs!
I picked up my prescription from the hospital’s pharmacy, paid the £14.20 that it will cost me every month and then I sat opposite my very nice consultant, Ms X, who once again listed the side effects I may experience, gave me some goodies to take away [disinfection wipes, booklets and a ‘cool bag’ that will come in handy when I go on holiday as the Interferon injection needs to be kept in a refrigerator] and then we got on with the serious business.
I was shown how to inject 180 micrograms of Peginterferon alfa-2a into my stomach. Apart from a little sting, that was nice, quick and painless. I’ll have to repeat the procedure 48 times in the next year, every Friday.
On top of that, I will have to take 3 200 mg capsules of Rivarin every morning and 2 every night. ‘A bit excessive’ as my mum put it but apparently it’s just as important as the weekly injection. So, I’ll have to get into the habit quite quickly because I will not want to miss any of them.
So, what’s going on then? Well, I’m pleasantly surprised, I must admit. I’ve been trying to be as positive as possible throughout the last week and I think it’s paying off. Apart from a temporary fever, that went as soon as it came after the injection, all I’ve felt so far it’s a bit of tiredness but nothing out of the particular. So far, so good. I’m not going to get overexcited yet because as someone put it [Hi R] there’s 364 days and a few hours to go, so there’s plenty of time for the side effects to kick in but tonight, it’s going very smoothly!
That was a nice post to write! I was expecting to tell you that I was depressed, willing to fight to death with my girlfriend only if I could muster enough energy to get up from the sofa… But then, again, there’s still time! Ha!
I’ll update the blog next week on Friday and hopefully it’ll be an even nicer post.
I promise that this blog won't become just a diary of my experiences but I've just started a new job so time has been a luxury. But the useful links will start rolling in again quite soon. Just bear with me!
Drop us a line if you can’t wait a whole week to hear from me, otherwise see you next Friday!
It's the first time that we have had a truly global World Hepatitis Day and it's your chance to get involved and help us make sure everyone talks about it today!
I hope you registered with the 'Am I number 12?' campaign and now you have an e-mail from the nice people at the World Hepatitis Alliance resting in your inbox![See my earlier post here]
How can you get involved?
Well, there are numerous ways you can get involved that should not affect you on a Monday when you must be eager to get back to work!
The most important thing you can do is help us raise awareness of the issues and the best way to do that is making sure you get more comfortable with what hepatitis is and how it affects millions of people around the world. Try to find out more and share with the world what you learn. I particularly recommend that you check this out. Maybe invite your friends to visit this blog today and hopefully it'll work as a little seed that you can plant and together we can make it grow.
And finally, don't forget that the question we are all asking ourselves today is: Am I number 12?. I know I am... If you're in doubt, get tested!
This will hopefully become the page where we dispel some of the myths surrounding hepatitides in general by asking some of the everyday questions we can have about hepatitis. I've come up with some questions to which I have thoroughly searched the answer and I will keep updating the page regularly. If there are any hepatitis-related questions you would like to have the answer for on this page, feel free to send them to me [mr.euclides.montes@gmail.com] and I will do my best to find the answers for us.
[Disclaimer: All the information presented in this page represents the opinion and findings of the sources quoted in a specific answer. The author of this blog does not claim to possess any authoritative knowledge on the topic and the purpose of this page is to bring together information from different sources. Therefore, this information should only be used as a starting point for your personal research. Remember, if you feel you might have been at risk of contracting any form of hepatitis, get tested.]
Hepatitis means liver inflamation. It is caused by a virus. Around half of all acute cases of hepatitis are due to a viral infection. Several kinds of hepatitis virus can infect the liver, but the most common are the hepatitis A and B viruses.
Hepatitis A is caught through the contamination of food and water with faeces (stools) through poor personal hygiene or sanitation.
Hepatitis B is spread through the exchange of blood and body fluids. It can be caught through unprotected sex, unsterilised needles, needlestick injury (accidental puncture of skin by a used needle), or contaminated blood products.
Hepatitis C is also spread through the exchange of blood or blood products. It is spread through sharing needles and needlestick accidents. It was also spread by blood transfusions before September 1992, when screening for hepatitis C was brought in.
There are four other recognised hepatitis viruses, named from C to G. Hepatitis A and E cause only acute infection, while hepatitis B and C cause chronic (ongoing) illness. Hepatitis D is only present in people infected with hepatitis B. The glandular fever virus can also be a cause of hepatitis.
Hepatitis B transmission occurs when blood from an infected person enters the body of a person who is not infected. As such, transmission can most commonly occur whenever a non infected patient comes into contact with bodily fluids containing blood from an infected patient [as when having rough sex or when semen or vaginal fluid might contain blood], blood tranfussions [this risk has decreased greatly since 1992], sharing drug-taking paraphernalia and some health workers might be also at risk when attending patients who are infected.
• Men who have sex with men • Heterosexual persons with multiple sex partners • Injecting drug users who share or have shared needles • Persons with a history of sexually transmitted infection (STI) • Household contacts of those infected with HBV • Newborns of HBV-infected mothers • Sex partners of those infected with HBV • Inmates of long-term correctional facilities and prisons • Patients undergoing hemodialysis • Healthcare workers and public safety workers with frequent blood contact • Clients and staff at institutions for the developmentally disabled • Recipients of certain blood products and transfusions • Travelers to areas of high HBV endemicity
There is also a very useful and easy to use fact sheet from the Centre For Disease Control and Prevention, which can be foud here:
Hepatitis C is a blood-borne infection occurs when blood from an infected person enters the body of a person who is not infected. The Hepatitis C Virus is spread through sharing needles or "works" when "shooting" drugs, through needlesticks or sharps exposures on the job, or from an infected mother to her baby during birth
Is it true that I can get hepatitis just by kissing someone?
The answer is no. Saliva does carry very minimal amounts of the hepatitis virus when people are infected but not enough to pass it on. However, should one or both kissers have sores in their mouths or suffer from bleeding gums, the risk is relatively higher.
I've heard that Hepatitis C is not actually sexually transmitted, is this true?
This is, in my opinion, a very misleading statement that can be found in many scientific journals and that some people can take to mean that the risk of contracting the disease through sex is zero. [For example: 'Although HCV is not efficiently transmitted sexually, persons at risk for infection through injection-drug use might seek care in sexually transmitted disease (STD) treatment facilities, human immunodeficiency virus (HIV) counseling and testing facilities, correctional facilities, drug treatment facilities, and other public health settings where STD and HIV prevention and control services are available.' [NGC_report]
Although it is scientifically proven that the chances of passing on the hepatitis c virus through heterosexual intercourse are minimal, it must be pointed out that some sexual activities increase the risk of contracting the disease. As a blood-borne virus, sexual activities where blood might be exchanged [for example, rough anal sex] can still pass on the virus.
So, although considered a low risk level, sexual intercourse might still be an important factor in the spreading of hepatitis C. People with several sexual partners or who practice rough sex should always use a condom to reduce the chances of exchanging blood or having bodily fluids like semen mixed with infected blood.
In the UK, the best way to get tested is by approaching your nearest Sexual Health Clinic where you can either book an appointment or attend one of their drop-in centres. There you can have a confidential chat with a specialist who will be able to answer your questions and get your blood tests underway if deemed necessary. To find your nearest Sexual Health Clinic, click here and select the 'Infection testing (GUM) clinics' option, followed by your post code [UK only].
Alternatively, you can approach your personal practitioner who will be able to advise you.
I haven't been able to find info about other regions of the world but I'm on it. However, if you believe you might have contracted hepatitis, visit your personal/family doctor who will be able to advise you
Prometheus, as Greek mythology would have it, was the valiant titan who stole fire from the gods and brought it back to humankind, pretty much kickstarting civilization. Zeus, however, did not like that even a little bit and gave him one of those punishments of which the Greek gods were so fond. He was tied to a rock where a vulture would visit him everyday and feast upon his regenerating liver, for all eternity.
I felt that Prometheus punishment was akin to the experience that many Hepatitits positive sufferers in the world go through. His pain and frustration being shared by many of the humans he strived to help in his quest against the gods.
So, like the Greek titan, this humble blog will try to recover something that seems to be missing from our general human knowledge: Awareness of hepatitides in our society.
I'll try to put together information about these illnesses from diverse sources [medical, scientific, advisory etc] combined with the many campaigns that, like us, are trying to make sure all of us know more about hepatitides. On top of that, as a Hep B and Hep C sufferer myself, I will bring into the blog all personal experience I can about what it means to live with these two illnesses on a day-to-day basis. Hopefully, raising awareness will help us to understand the issue much better, dispel many of the myths that surround it and help others [and myself!] to lead full lives without the shadow of that general ignorance that can make many [me included for a while] doubt whether sharing a diagnosis with the world is a good idea.
So, like Prometheus, let's go in search of that knowledge together. Whether you're an organisation providing help, a medical association, a Hep. positive patient or an individual who wants to get involved, let me hear from you and let's create a nice, useful portal for everyone.
Finally, because deep down inside I'm a sucker for happy endings, don't forget that Prometheus was finally freed and his vicious vulture slayed! So the name and reference is not ominous but it rather is a little ray of hope from the very beginning.
little over 8 months, writing posts about disease and drugs, with no viral campaign or celebrity endorsement and next-to-no respect for deadlines, here we are: a 1000 visits to this humble blog. A milestone of sorts and yet I couldn't help but feel guilty about the whole thing. It's been over a month and nearly 120 visits to the site since my last post and I feel that I've somehow been neglectful not only of this blog but the loyal readers who have been with me in one way or another since the start of this experience. I’d like to apologise for that and try to offer the following as a way of explanation.
little over 8 months, writing posts about disease and drugs, with no viral campaign or celebrity endorsement and next-to-no respect for deadlines, here we are: a 1000 visits to this humble blog. A milestone of sorts and yet I couldn't help but feel guilty about the whole thing. It's been over a month and nearly 120 visits to the site since my last post and I feel that I've somehow been neglectful not only of this blog but the loyal readers who have been with me in one way or another since the start of this experience. I’d like to apologise for that and try to offer the following as a way of explanation.
