By special request…

A group of us early bloggers met up in London last night. I had previously met Ron whilst on treatment but it was the first time I met Wendy, Paul and Martin. The meeting was at BBC in Aldwych, a group of the early blogs are being turned into a radio 4 drama. Not sure when they start casting actors but I have been promised that that Rupert Everitt will play me, that man has it all, fabulous body, great looks and best mates with Madonna.

Anyhow I promised to put an entry in my blog to summarise what life off treatment is like, so here goes.

It has been about 10 months since I finished treatment and 4 months since I had the SVR confirmed. The biggest change has been attitudinal, obviously treatment enhanced my emotions and certainly made me very grumpy. Even before treatment I used to be a grumpy sod, easy to fly off the handle, the word temperamental has been used to describe me by several people. Since finishing treatment and clearing the drugs I have noted a change, I am much more laid back, I hardly ever get stressed and very rarely get angry. Friends and family have even noted the change.

Physically my skin has cleared up, I need far less sleep than I did pre treatment and have far more energy. My 1,000 meter swim time is back to pre treatment levels and my sprint time is better. Weight lifting is was never really about the weight I lifted, and was more about keeping that gym toned body, however I have increased some of the weights though nothing dramatic. I have had to cut back on the food consumption, my weight went up a bit when I came off the treatment, but I was having Ben and Jerry’s withdrawal problems, I now have my B&J habit under control and my weight is back in the six pack range.

Paul and I have moved house, we put the house on the market almost immediately after I finished treatment and completed on the sale on 22 December. We now live in the city in a massive new house on the river which is a rather wonderful treat.

I started back on my MBA in September, it was difficult getting back into the swing after a year out, but what with only one essay left to complete plus my dissertation the end is in sight. Work-wise, everything is going really well, my department continues to grow and I am now working on setting up the corporate IT systems for a new University venture in Suffolk.

Tiffany my Labrador is very well, she has also been on a diet and lost a fair bit of weight, the new house means that she doesn’t have to do stairs which makes her life much better. She is getting old now and spends most of her time asleep on the sofa, quite often she and the daschund will cuddle up with each other.

Perhaps the most dramatic change is the hair cut. I had long hair for 7 years, I started to grow it when I found out I had Hep C, I got myself really stressed about loosing it on treatment, but to be honest didn’t really. Having finished treatment and killed the virus I felt I no longer needed long hair. Also I have been watching repeats of Queer Eye for the Straight Guy on Living TV and felt that with my scruffy long hair I was letting my gay brethren down. Incidentally if you haven’t see Queer Eye UK, you really should, Dane Bailey the designer chap is gorgeous.

Talking of gorgeous, what with the hair cut, the massive wardrobe that I acquired on treatment, the clear skin the chilled attitude and the swimmers body that I worked so hard to maintain I now look absolutely gorgeous. For what it is worth I really love my life now, getting rid of the virus was a scary and difficult thing to do but it was worth it.

Killed the virus

I had confirmation earlier today that I continue to remain "virus undetectable", this the 6 months post treatment follow up. I have achieve the Sustained Viral Response and for all intents and purposes am clear of hepatitis C and cured. I have killed the virus.

Who knows I may even crack open a bottle of Crystal on Christmas day, funny thing is that being sober and not drinking is so much part of who I am that I no longer see booze as a way of celebrating.

14 weeks post treatment and still undetectable

I have some good news, I continue to be virus undetectable.

Last week I arranged to have a PCR blood test done to see whether I was still clear of the virus. It was 14 weeks since I finished treatment so perhaps a little too soon to be the accepted SVR that we all seek, even so the drugs that killed the virus will be well and truly gone from my system and if the virus was going to make a return I think it probably would have done by now. I have my 6 month test scheduled for 2nd December which is the accepted point to confirm an SVR.

I am doing really well, there is a lot of stress at work at the moment though far less than being on treatment - I kind of feel having dealt with that, that anything else is trivial by comparision. Last week there were several people who commented on how well I looked, one even spontaniously said "your treatment has really worked, hasn't it".

I have to admit I wasn't overly concerned about the test as I was pretty certain of the outcome as I feel so well within myself.

Having said thatiIt may help others to hear that over the last couple of weeks I have had occassional pains in the liver area, though I recognised these to be different from the pains I used to get from an overworked virus ridden liver. I put these down to the liver being in repair mode, a bit like the way that scars itch.

This is not a fairy story

This blog is pretty much closed now, for 8 months I used it to chart my daily progress fighting hepatitis C. I underwent 24 weeks of interferon and ribavirin treatment at the onset of treatment I was petrified by the reports I had heard about the treatment. Hopefully this blog will help put the horror stories in context. Don’t get me wrong this blog is not a fairy story (well not quite) but it isn’t a horror story either.

I will keep the blog live in the hope that others on this journey will find it useful and while I have withdrawn a bit from the Hepatitis C community I am more than happy to answer any questions that people may have. Equally if you are in Norfolk and contemplating this treatment and want a chat then do get in touch.

I have one final milestone which is the 6 month post treatment test, this is due on December 2nd and so I should know in good time for Christmas whether the treatment has worked.

Either leave a comment on the blog or email me to get in touch.

Cheers
Jonathan

5 weeks post treatment

I had my annual haematology check up yesterday, as normal full blood work was taken.

My haemaglobin is nicely back into normal ranges in fact a little higher than before I started treatment, now 15.8.

My ALT has finally dropped into normal ranges and is now 32, this is in spite of steadfastly refusing to drop while on treatment. I did wonder whether my exercise regime was keeping the ALT artifically high, however this measurement was taken after a normal weekend of weight training and mornings 1,000 metre swim. I conclude from this that it was the interferon that was keeping my ALT high, so much for the histological benefit of treatment.

All other blood work is back to normal, though to be honest the only three things I really watched were the ALT, Heamaglobin and of course the PCR test. My 6 month post treatment test is due 2 December, I may pay privately for a test towards the end of September but at the moment am fairly happy that this thing is going to work. I do from time to time get the occasional pang of liver pain, but it no longer keeps me up at night, all it does now is hit the paranoia button. I suppose that the next 5-6 months will continue in this low level paranoia vien.

I have been asked about my fitness levels post treatment. I started to notice that swimming and weight training became less arduous on the breathing after 3 weeks. I have knocked 1 minute off my 1,000 metres swim and added 10K to my bench press. More importantly I now exercise for me rather and not to fight the treatment, it is fun again and I am enjoying it rather than having to push myself to do it.

I have lost the 8 pounds that I put on at the start of treatment, I have my 6 pack back, my hair looks great, I have a sun tan and my skin has cleared up. Frankly I look pretty fucking fabulous and whats more I feel it.

International Hepatitis C Awareness Day

Over the next four months Hep C Action want to collect many thousands of signatures from all European countries to take to the EU on October 1st, International Hepatitis C Awareness Day. They need help with this to get as many signatures as possible and ask that you print off the petition and collect signatures from anyone who you think would like to support the campaign, friends, family, healthcare workers, doctors, patients, …the more signatures the better.

There will be a prize of a top of the range vegetable juicer for the person who collects the most signatures.

The petition can be downloaded from here http://hepcaction.org/hepcaction/news6.htm (at the bottom right hand side of the page).

I will be collecting signatures and would hope that other readers of this blog will too. As I already have a top of the range juicer and realise that they are the ultimate in fads I will not be competing for the top prize.

End of treatment PCR results

My nurse phoned my this morning to confirm the result of my end of treatment PCR test - unsurprisingly still negative, just need to keep it that way now.

It is now 2 and half weeks since I finished treatment and it is only really now as the drugs start to clear that I can understand the side effects I suffered during treatment. For me most of the side effects were pretty innocuous, they built up over time and hence I never really noticed. Now as the drugs start to clear I am finding the drop off of the side effects is quicker than the build up.

I know that while on treatment my swimming became slower. I can only swim one stroke, breast stroke, but I have or at least had, quite a powerful stroke. While on treatment I went from 1,000 metres in 21 minutes to something like 23 -24 minutes, I also noticed that a lot of the power had gone from my legs and consequently I lost the push. While I didn't time myself this morning my stroke certainly felt as though it had more power and push to it, consequently my thighs are aching quite nicely from the exertion.

I had some breathlessness during treatment nothing major but I can tell the difference.
I did loose more hair on a day by day basis than I am now, to be honest I can't tell by looking at my head the only give away is the amount that used to come out with brushing.

Sleep, I knew that my sleep was disturbed, but I hadn't realised quite how much, it is perculiar but I was surviving on much less sleep on treatment than I am now.

Emotions - I think that the drugs worked to enhance my emotions, so during treatment they emphasised my anger and fear, now treatment is over the enhancement is still there but the emphasis has changed. I still cry at things I wouldn't have in the past, but now it is rather endearing and in some ways I wouldn't mind continuing with my emotions closer to the surface.

Skin - I certianly noticed the rash on my back, though this cleared very quickly and my skin is starting to get back to normal.


I have modified my supplements and have already cut out the lunch time pills, I am working towards tailing out a lot of the pills I was taking and heading towards a much simpler regime which will look a bit like:

Morning
Chinese Herbs from John Tindall
Vitamin C
Multi Vit
Reishi mushrooms
Flax Seed Oil
Saw Pimento, Biontin, Zinc (To encourage hair growth)

Evening
Chinese Herbs from John TindallVitamin C
Reishi mushrooms
Evening Primrose

I have a trip to London this weekend and have an appointment to see John Tindall for herbs and accupuncture. The last time I saw John he indicated that after this appointment we could cut back to once every three months.

I have just experienced one of the simplest joys in life. The smell when you open a new packet of coffee, the wonderful aroma of Organic Mendaleng Sumatra now permeates my office. Oh well off to put the kettle on.