Living Without HepC

Today I came across the draft of a short article from a series I wrote for Roche pharmaceuticals two years ago to include in their newlsetters to patients on treatment.

It stood out for me because I recently replied to an email from someone whose partner is struggling with keeping up the treatment.

It is so important to keep a positive outlook to achieve any successful outcome in life. And that applies to going through treatment as well.

Not long into treatment I noticed I was having trouble keeping pace with everyone else in my family as we walked along the street – I was short of breath while walking.

When I complained to my wife that my pace had slowed everybody else down she pointed out that not everyone who had injected interferon that day would have been able to participate in a family get-together, travel into central London and go out for a meal in a restaurant – “so you are fortunate to have done this much”. There – my complaint positively re-framed!

On treatment I found it was essential to see the positives, otherwise I could slip into a downward spiral to depression and the need for more medications. Regularly picking up on these small instances helped me to, well, re-frame my perspective and keep up the positive attitude necessary to support this treatment. It would be so easy to slip into feeling “sorry for myself” and next into being a “professionally ill person” or an invalid. I think after that comes “victim” mentality. Then probably a depression.

To help me over the long haul of 48 weeks I went to see a counsellor therapist. A professional who helped me stand back and look at each week, to see the positives; who monitored for any depression; who helped me feel on top of the challenges that living inside a treatment regime brought.

Ask your GP or Clinic Nurse about counsellor therapist resources to help support you if you are really struggling.

And here’s another email – this one – well, I feel somewhat ambivalent about what I’m reading:

Dear Ron,

You have received this letter because we think that you might be able to help with some market research that we are conducting in the area of Hepatitis C.

…….alright so far

We conduct research for pharmaceutical companies on a range of different topics. Pharmaceutical companies are always trying to improve their treatments and make them easier to take.

………hmm, and make bigger profits in the market place

Therefore in any type of research, the opinions of the people who actually take the medications are very important.

……. So not a new medication then, just research about current medication.

In this case, we are very interested to talk people who are living with Hepatitis C.

…..somehow missing the point that this blog is called Living Without Hepatitis C and I no longer have the virus

What we would like to explore is their experiences with their condition and the challenges that they currently face. We’d also like to gain some feedback on what they think could be done to make taking their medication easier.

…… hmm, that could be TCM for all I know – reminds me of all those snake-oil salesmen who used to show up on my Forum with products to make living with Hepatitis C easier.

We would like to run the research in two parts. The first part will concentrate on the patients’ day-to-day experiences.
We will supply them with a diary, which we would like them to complete each day for a week. The diary will only take about 10 minutes per day to complete.

The second part requires their participation in a group telephone discussion about Hepatitis C.
We would like to hold these discussions in groups of three (plus a researcher), where they will be able to interact with other people who may have had similar experiences to theirs, and they will be given the opportunity to point out how their experiences may differ.
These discussions will last approximately 90 minutes and because they will be over the phone, the participants will not be required to travel anywhere / leave their home.
These discussions will be held by an experienced researcher, with an interest in finding out what is important to the patients.
If, during the discussion, they feel uncomfortable with anything at all, they are encouraged to make this known to the researcher. The participants will not be forced to say or share anything that they are not 100% happy with.

The very nature of market research is that there are no right or wrong answers, as everybody’s experiences are unique.
What we would like from the participants is their honest opinions and thoughts. We will of course reward them for their time with a payment of $200, payable upon completion of the research.

…….. that’s $200 for a 90 minute discussion and seven 10 minute entries in a diary. Not a bad rate of pay for 2 1/2 hours work. Fairer than some of the other “rent-a-patient” research projects I’ve been approached about. Quite why it is in dollars when the contact person is in the UK with a UK company logo is unclear. But the way the current exchange rate is going I guess that’s advantageous.

Market research also requires us to protect the identities of anybody involved.
For this reason, we will not pass their details onto anybody, and they will not be contacted as a result of anything that they may have said during the discussion.
All responses will be kept 100% confidential. We would really appreciate if you could pass on this invitation to some patients and make them aware about this current study, in case they may be interested in taking part.

If you decide that you would like to be involved in this research, then please contact our recruiter…..

……hmm, well I doubt I’m really in their target group now. Regardless of that, I am very ambivalent about this type of research.

How would you respond to such an invitation?

Another email I recently received:

This is very useful information. I completed my treatment in January 2005 but I’m still battling the affects. I am very thankful for the treatment I am just not able to find anyone knowledgeable about transitioning out to help with this overwhelming fatigue. I’ve worked full time throughout & find myself barely existing to care for my wonderful pets & pay bills. I have not even dated since the biopsy prior to treatment in 2003 & have become an exhausted & total recluse. There were so many things I wanted to do when the treatment was complete that I have no energy to do. I have only now been able to reduce my sleep requirement from a minimum of 13 hours to 9 but still find it an enormous struggle. My work is stressful, it is in the oil field & something at present I can’t negotiate as it is the only thing I have enough skills to do to bring in the money & maintain the insurance necessary for all of this.
I write to ask if you have any suggestions for this transition, it seems to have gone on entirely to long. Doctors have no answers & even less interest after documenting the success. I would greatly appreciate any advice you might share with me & thank you for taking the time to read this.
s

Hi s

I was really touched as I read about your post treatment experience. 3 ½ years of fatigue – on top of the HepC treatment is a long, long haul. You must be a very strong woman to have withstood all this with such grace, and still keep going with everyday life.

First some practical help. I know someone who has been through your experience – and wrote a book about how to cope with fatigue. I hope you will find that gives you some sound and helpful advice.

Nadine and I have been HepC “friends” over the years although we have never met. Earlier this year I wrote a blog entry about her recovery from a long bout of post-treatment fatigue. In it I said

By the summer of 2007 Nadine had just finished a book called “The Everything First Aid Book” when she was asked signed up to write and have published a book on fatigue – “The Complete Idiot’s Guide to Fighting Fatigue”.

Just did a check on Amazon – and sure enough, it’s available:
The Complete Idiot’s Guide to Fighting Fatigue

Nadine has recovered well enough to make a number of other achievements – read my blog entry and see. It also says how you can contact her if you wish.

I completely agree that Doctors have no answers and even less interest after documenting treatment success. My doctor is one of the best Consultant Hematologists in the UK but he was keen to discharge me right after my PCR results. I completely understood – he has a whole list of other patients in need of treatment and healing, far too many for me to take up a place on his caseload just because I had post-treatment fatigue. So he probably doesn’t know much about post-treatment recovery.

And of course the drug companies too have no interest in documenting a phenomena that could cast the drug treatment in a bad light. It’s not in their interest to explore the likelihood that a colossal onslaught of such toxic drugs for a sustained period of time (48 weeks in my case) causes a massive reaction which take the body a considerable time to recover from. And possibly permanent damage along the way – who knows?

More disturbing and surprising, I believe I have encountered a bias within Hepatitis C organisations who tend to downplay the post-treatment experience for fear of putting “new patients” off the ribavirin and interferon treatment. It was a kind of “let’s not talk too much about the things that patients experience after the treatment is over”.

So you are not the only one to have a tough post-treatment experience – you are not alone.

By now you have trudged, or more likely dragged yourself, along the same groove for so long that it is difficult to envisage doing anything else or even knowing how to begin making it different. But the toughness and tenacity which have sustained you through Hepatitis C, through treatment and through post-treatment fatigue will also be the factors that enable you to overcome this final hurdle of your journey with hepatitis C.

S, I really wish you well in your transition through this final phase – and I hope what I have written is of some help to you in finding the changes you need to make.

Wishing you well
Ron

Hi Ron,

I’ve just read your blog again. You’ll notice the last time we corresponded below. Congradulations on the complete recovery of hep c. My hep b does spike once in a while and and was only recently considerred chronic. I was wondering, in your recovery from hep C, which drugs were you given and even though I assume that your liver enzyme levels probably went down to a ’safe’ and nornal level, did the hep C virus change from positive to negative? What level did the virus count drop down to?

Thanks and congradulations on your success again.

Ray

http://www.iqexchange.com/site/blog/lei/

Hi Ray
Good to hear from you – and I see you continue with your blog – much more regularly than I do mine!

We last corresponded in January 2005. I was surfing around for Hepatitis blogs and found yours. Not many Hep blogs three years ago, were there? I recall that I read that your work colleague’s mother had some HepC issues and I gave some advice or other. Was in the midst of treatment so my foggy recollections goes no further.

I am impressed by the liveliness and richness of your blog – dealing with so many issues. Not least chocolate.

I hope life overall goes well in Toronto. Did I say that is where I was born and grew up? Probably.

And I am glad to hear that the HepB “spikes up” only occasionally and leaves the rest of your life to be lived to the full. As you have read on my blog, Hepatitis is now something in the past for me – a journey which is all but complete now (I say that as I still occasionally think about it!)

Wishing you well
Ron

hi ron

thanks for your blog am a 40 year old british man here in berlin and have hepititus c for over 6 years now and have just started treatment just ribivan and interferon injections at first they made me feel sick but as my doctor has told me the rest of my body is fine there is a possible cure .just have to see I think staying possitive in the way you do things is a great way to get over it I mean at first I thought this is the end I will say one thing over here german doctors tell you as it is sometimes this is not always a good sign but you cope!! anyway there doesnt seem to be the prejudice about how you got it the one thing about germans is they are very practical its an attitude of yu have caught it now lets see if we can cure it!! although I know I have cronic hepititus c ( which as far as I know is uncurable) I have often just got on with life the tiredness and the colds and aches piss yu off but take a paracetamol and carry on!! anyway seem to be going on!! want to know about the way the treat you here just ask!!!

best of luck and keep healthy

a

Hi
I entirely agree that staying positive is important in getting through treatment and having hepatitis c. It sounds like the German treatment – ribavirin and interferon injections, is the same as here in the UK. Don’t know how long you are on it for – I had to do 48 weeks. And I probably had the virus for about 30 years before I had treatment.

So, I reckon your chances will be very good Andy. You’re younger than me when you started the treatment and you’ve only had the virus six years. (Yeah, I know “only” makes it sound easy and I know it’s not.) So you’ve got good chances to get rid of the virus.

Andy the whole debate about chronic hepatitis is “incurable” is a complicated medical argument about the definition of terms. At the end of the day, clear the virus mate and you’re cured! Just stay positive and focused on doing that. The treatment thing is not easy so keep remembering that commitment to positivity.

Any queries I get about treatment in Germany will be referred to you!

I wish you well
Ron