re: Life After Successful Treatment
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
January 22nd, 2009 at 4:43 am
hi my name is Ray and have been trying to get answers to all the mental and physical pain I feel day to day 2 1/2 years after being treated and testing negative in the combination interfuron treatment. One of the biggest things that helped me was another shot I did twice a week called procrit used to treat cancer patients while on chemo therapy. I am very sorry about the long stent of side effects but you have somehow made me feel normal about what is going on. I too worked full time during and after my treatment I also have a job that is very physical and find myself feeling the same symptoms as I did with hep c which I called “freckles” due to ignorant people who do not understand what Hep c is. I have the muscle aches and also much more symptoms of depression. It has been tough but I still sleep better at night knowing that if my two children were to get hurt I could be there for them without worrying about passing it. I thankyou so much for your input. Oh and the Hep c clinic that treated me refused my phone calls and questions after 6 mths. of testing not detectable, so I do believe they do not want people to know what happens after. I live with no regrets and thank something each day that I wake. Hope I can help someone like you have all helped me.
Tough but hangin in there Ray, Female, USA, 28 yrs. old
Thank You!!
January 25th, 2009 at 9:23 pm
Hi Ray
Thanks for your email. And thanks for your positive message about being thankful for each day. I am sure you have helped someone along the way during this journey.
As I listen to more and more people talk about post-treatment the more convinced I am about permenent effects, particularly depression.
It is tough hanging in there – but then we’ve all been survivors so we’re used to tough
Wishing you well
Ron
January 29th, 2009 at 4:16 am
Hello, I am doing a presentation for my Medical Terminology class on Hepatitis A, B, and C and I need to find someone that I can do a case study on, but I am not have good luck can you help me?
wilsonbabe17@yahoo.com
February 2nd, 2009 at 1:54 pm
Hi Brittany
I suspect you might have some luck finding a case study if you go to one of the HepC Forums – you will find a number of them on the internet if you do a google.
Wishing you well
Ron
May 15th, 2009 at 9:54 pm
Hello everybody,
Finding these other comments has been like a dream come true. I just wanted to know if anyone else still felt so bad so long after successful treatment. I got the all clear at the end of 2007 but my head is still all over the place and physically i`m still a wreck. I had to give up work before the treatment started and going back doesn’t look anywhere near the horizon. I just wanted to know if i was still getting over the treatment or was there something else wrong with me. In the nicest possible way it’s good to know other people are taking a long while to get over it. I don’t like the thought of another two years of this though. Oh well, i`ll just keep taking the tablets.
April 6th, 2010 at 12:58 pm
i finished the 48weeks treatment 3years ago and still feel drained of energy and also suffer from deppresion and memory loss.when i had hep c i was very active
April 6th, 2010 at 1:15 pm
i still feel very tired and deppressed after 3years of taking the treatment for 48weeks.when i had hep c i was very active and was happy and could lead a normal life and go holidays ect.i wish i never took the treatment i dont even have any short term memory but i was told after 6 months of taking the treatmet i would be back to normal now i feel no one wants to know.can anyone help me.
April 17th, 2010 at 4:42 pm
Hi carol
I am sorry to hear about your experience. You don’t say if you have been back to your doctor. It might be useful to discuss whether anti-depressants or some counselling would help you to feel like you can lift your moods.
Wishing you well
Ron
October 24th, 2011 at 3:50 am
After going through a tortured treatment with many complications and reaching the end 3 years later I am still oppressed with chrinic+ fatigue and body pain. I have nuropthy to both legs and feet. have fallen so many times.
any one I ask either mis informs me or honestly state they have no answers but would referr me to other docs to treat the symptoms paliatively- meaning I will never feel well again. My spose thinks he may catch it from me dispite my having no viral load- so the relationship is in the toilette.I have been a nurse for over 30 years and there are no nursing groups to turn to for assistance or support.
I likely contracted Hep c via a needle stick.
I was a nurse and am now unemployable living on a small disability check. Thank God there is a spose who did not leave yet.So I am not living on the skids.I am not depressed although I suffer severe anxiety and worry 7×24 loosing oout on todays as I worry about tomorrow. If someone has something postive to tell me please feel free to email me jazzy1435@aol.com