hi all:
i’m about to start 1/7/08 . so, i’m very interested in what others have experienced. if you’re inclined to share please feel free to respond.
thank you in advance.
peace
KM
Hello again~
I believe I gave you this info before, but I can’t be for sure. It could be that I’ve told it often so I genuinely just don’t remember, but with the frequency of this, the inability to recall once prompted and of course the Dr’s statements that I have brain fog or chemo fog due to treatment. I’ve been off treatment since the first of August, and we ( dr.s and I) are HOPING it will go away.I have to go right now…I’ll get back to you when I return…smile~
Hi there, I came upon your post this morning. I’ll tell you a bit about my experience to date. I lost my sister 3-16-07 to a related HCV event. I was never aware that she had been infected with hepatitis C even though we were very close. In the midst of my grief, 2 weeks later I was also tested in her honor. One month after I had her memorial, I received the call that I also was infected with HCV. I was shocked, as over the years due to past risky behaviour I had been routinely tested. Later I would find out that a positive test in 1998 had fallen through the cracks and the health care providers never notified me of the positive test.
After my diagnosis, I immeiately took action, shopped for the correct Dr.s, had tons of bloodworks done, ultra sound and biopsy. I was told I was “lucky” being a 3a, with only 1/1 in staging and grading on my biopsy.
I could go either way, treat or not treat…that the HCV would probably outlive me. Yet I am in my fifties, very active and didn’t like the prospect of possibly having to treat later when I could perhaps be older and sicker. They had no idea how long I had been infected but guessed 25 to 30 yrs.My intentio was to treat. I took an aggressive stance, had a great Summer and planned my treatment to start beeginning 9-3-07. I researched in the meantime, found a support group on line, learned as much as I could about the virus and the side effects from the treatment, stocked up on all the helpful hints that could make my treatment easier. i was advised I would be in treatenent on peg and riba for 6 months.
Presently I am to do my 15 shot on Monday as I am halfway through the orderal. I cleared the virus according to my 12 wk pcr test and my chances are very good at remaining clear (SVR) My sides have been minimal and well worth being free of this insidious virous. I haven’t used any anti d’s but have been fortunate enought to be out on disability. I drink a gallon of water a day, get as much rest as I can, eat healthier than i ever have in life
and I believe all of this has helped me defeat this virus and have virtually no side effects from the medication. My treatment will be over In March. If you have any questions, please feel free to contact me. Thanks DonnaH
Hey all,
I’ve shared my treatment story to many individuals and will continue if it helps anyone to realize and squelch any fears of tx.
I am on my 2nd round of pegintrom and riba, due to the fact that I have type 1A. My first tx failed when I was 2/3 through due to body rejecting , I started that tx with a viral load of 9 million . Was i shot a week , pill every day for 18 months. Due to type, success rate is only about 20%-30%.
Three years later its time to try again. Viral load at 11 million . Now I must see a major specialist for more aggressive tx. Which was to be shot every day and pill for 18 months !!
Did not feel right about this drs. tx . Well it never happened anyway since they never filed paperwork. ( Actually I believe that God had other plans . And thats Whos hands I left it with ) Saw new Major infectious dr ( I’m also co-infected with HIV) . My newest lab work by some UNKNOWN reason ( but I know-God ) my viral load went from 11 million down to 4.050 without any treatment ! Drs can’t explain why my immune system kicked in, lol . Well now I’m back on original treatment ., And with these new numbers I just look at it as my tx being almost over even before its even began. lol. I 'm still scheduled to stay on for 18 months but who knows if I’ll even have to? God only knows and what ever is to be is just fine with me. I’ve had no side effects at all other than being a bit tired. I’m scheduled for next apointment on the 11 th of March. I am actually excited to see what is going to be the out come of all this. No matter what, I will just continue to give glory honor and praise to the One Who has me in the palm of His hand.
IS THERE A NEW AIDS DRUG THAT THEY PUT YOU ON / ADDED SINCE YOUR LAST TX ? WHAT ALSO IS YOUR DIET SPECIFICS ? ,AND YES GOD CAN HEAL !,HUGS DAN
I have my next Dr. appt on tues . I’m curious to see whatif anything is happening , after all it’s only the initial bloodwork after re-starting. I will probably get a better picture with my next lab work. But I will keep you posted. What its gonna be its gonna be. No stres , no sweat ! lol
Wellness Mental and Emotional Attitude
Introduction
Positive attitude
Developing and maintaining a positive mental attitude is perhaps the single most important thing a person with hepatitis C can do for themselves. The messages we tell ourselves dictate not only our moods and behaviour but can also have a powerful impact on our physical condition.
This is not the same as feeling happy - it’s creating a whole new outlook despite how you may feel. Evidence suggests that many people with long-term chronic illness who are able to maintain a positive attitude experience a slower progression of their condition and often show better responses to treatment.
Some people find adopting a positive attitude harder than others and adding hepatitis C into the picture is a further hindrance. Below are some pointers that may be of use:
Remembering you are NOT your disease
Initially a diagnosis of hepatitis C eclipses everything in your life. You may spend hours on the internet researching the virus, talking to other sufferers and explore all the treatment options with doctors and alternative medicine practitioners. In this environment it becomes easy to lose sight of the person you were before your diagnosis and see yourself defined in terms of your disease. This is not only untrue but potentially very destructive. The qualities that make you the person you are, known and loved by your family, friends and colleagues all remain. Should you choose to define yourself in terms of your hepatitis C status over time so will those around you. You do not cease to be a good father, wife, tiddly-winks player or pub quiz master on finding out you have hepatitis C.
Those living most successfully with the virus are those who have reached an accommodation with the virus in terms of treatment, diet and lifestyle but do not let it restrict them from the life they would otherwise choose to live.
Living in the present
Today matters, tomorrow is unknown and yesterday is history. For many hepatitis C sufferers it is difficult to live in the present while haunted by questions from the past like “how did I catch this?” or concerns about the future, “what kind of life will I have with this virus?”. While it is only natural to want to know how you became infected, ultimately it does not change your situation. There may be a temptation to give yourself a hard time about your behaviour if it may have led to infection but that will only result in dragging yourself down further and further.
Those who are able to live in the present, accept their circumstances and embrace what each day has to offer will find it much easier to maintain that important positive attitude.
Being grateful
What are the ten things you are grateful for today? How quickly you can name the ten is a pretty key indicator of your state of mind. In the midst of dealing with hepatitis C it can be easy to lose sight of those things which would otherwise be a great source of joy or support. Seeking out and celebrating those things for which you are grateful is a powerful way of reminding yourself about the positive things in your life. While most people will think of the love and support of family and friends, some psychologists argue its just as important to remember the small stuff. They advocate writing a daily list of the ten things you are grateful for (with no repetition).
At first it might be difficult but it does get easier to recognise the small things worth noting that make life more pleasant - the rain stopped when you had to go out, next doors teenager has given up his heavy metal ambitions or you found a parking meter which still had plenty of time left on it. Setting yourself the exercise of finding things to be grateful for is guaranteed to lift your spirits.
Setting yourself realistic goals
It is part of the of the human condition to want to grow and develop. We do this all the time by setting ourselves goals from learning to cook a new dish to bringing down the golf handicap. Setting and achieving goals is a powerful boost for anyone. For those with hepatitis C, goals may revolve around treatment, how fast you get back to work or how quickly you feel like your old self. While achieving goals is a great tonic, setting unrealistic goals and therefore setting yourself up to fail is destructive. No-one likes to fail, repeated failure means you will only give yourself a hard time at a period in your life when you need to learn to be kind to yourself.
Laughter as medicine
The ultimate physical manifestation of a positive attitude is laughter and for a treatment that is absolutely free the benefits are astonishing. Laughter boosts the bodys level of its own natural painkillers endorphins, it suppresses the stress hormone epinephrine. A good giggle provides a fantastic workout for the bodys immune system it increases to the number of virus-attacking T cells, boosts the blood chemical transmissions in the nervous system and stimulates the production of the antibodies that fight all sorts of infections. And if all that isn’t enough, a good belly laugh is great cardiovascular workout, raising and lowering the heart rate and blood pressure, enhancing alertness and memory and lifting depression.
The best part of all is that this treatment can be practised anywhere, by people in any state of health and immediately makes them the kind of person other people enjoy being around.
The bad stuff
With all that a positive attitude and a good laugh have going for them why is it often so difficult for people to embrace them? One school of thought is that a negative attitude serves some purpose for certain individuals. It means that others will try to cheer you up or solve your problems. Nothing is ever your fault and you absolve yourself of any responsibility if a course of action doesnt work out the way you planned. It also means that others have no expectations of you. A negative attitude towards your health may mean that you accept that your health will not improve and there is no need to plan for a future where your health has improved.
That kind of negative thinking can become a self-fulfilling prophecy. When the benefits of a positive attitude are so well documented, even if it is difficult to achieve, it must surely be worth the effort.
Taking responsibility
This is your life and your health. Hepatitis C is not a hopeless condition - there is a lot you can do to help yourself. The most important thing is to recognise that you have choices, these are in your hands and choices lead to action. Taking responsibility for your health is a very positive and empowering step.
Before you make any decisions or take any action, try to gather as much information or advice as possible. For example consider what are the advantages or disadvantages of any actions, are they in your best interests. Consider who can help you or support you to consider all your options and where possible involve them in formulating an action plan.
Feeling you are in control and that any decisions and actions are yours and not ones forced upon you will result in you feeling less stressed, angry, helpless and negative.
Understanding emotions
Discovering that you have a long-term condition is likely to challenge how you feel about a lot of things in life and, as a result, provoke all types of emotions. This is normal.
Sometimes we feel our emotional response is not the right one especially when dealing with such a challenging issue as hepatitis C. You may feel you should be putting emotions aside and try to deal with the situation from a logical point of view. It’s important to realise that both your logical and emotional responses are equally important and each has a place. It makes sense to make decisions about treatment from a logical perspective, but accepting that you have a serious illness has to be done on an emotional level too.
In order to come to terms with emotions and deal with them in a constructive way it is very important to recognise them. This is not always as easy as it sounds, particularly if you are subjected to a barrage of several at the same time. Equally one emotion may get lost in another for example anger very often disguises fear. More than this the disease itself causes mood swings.
Some of the most frequently experienced emotions include the following:
Numbness
Feelings of numbness are a common response to a hepatitis C diagnosis. This may be beneficial response, allowing you time to adjust and consider your responses. Feelings of numbness may return at different times, and very often in response to news that is difficult to deal with.
Sadness
This is often a recurrent emotion and should not be confused with simply feeling unhappy. Deep sadness or grief are frequently accompanied with feelings of loss, e.g. loss of good health; loss of a planned or particular future; loss of ability to participate in activities that were important to you. In addition you may experience deep sadness about the past, maybe sadness about past actions, lost opportunities or relationships.
Anger
Feeling angry is a natural response. You may be angry at a specific person, about a specific time in your life or about a past action. You may have feelings of anger towards your doctor or nurse, that they may not be able to cure you of your condition or are sending you for frequent and/or unpleasant tests. You may feel angry towards others who do not appear to be taking your illness seriously, or who may be impatient towards you. Angry that you feel ill or that your life feels restricted.
Blame
You may blame someone else for your infection, possibly someone you feel knowingly exposed you to the virus or should have protected you. You may blame yourself, feeling that you could have prevented the infection or that, in some way, you deserved it.
Guilt
You may feel guilty at not being able to fulfil your usual role and the additional demands this may place on others. Guilty that you need help from others and the time they are spending on caring for you.
Self-pity
This term is often used in a derogatory fashion to describe wallowing behaviour. It is wise to acknowledge and understand that naturally there will be times when you feel sorry for yourself, but it’s important not to get locked into a negative attitude that hinders or stops any positive action.
Anxiety
This is often associated with feelings of loss of control or uncertainty about the physical and psychological changes you may be experiencing or about life in general, the future and how relationships may be affected.
Fear
You may have fear about the future, about how your condition will progress, symptoms you may experience, whether treatment succeeds, whether you will be able to cope, whether your family and friends will stand by you and ultimately fear of death.
Dealing with your emotions
Being able to deal with emotions is about acknowledging them and trying to gain some understanding about why you have them or where they come from. It is important to try not to get overwhelmed because this can easily lead to a feeling of being a victim, out of control or helpless.
By acknowledging your emotions, you are accepting that they are part of dealing with difficult situations, they do not necessarily make you a good or bad person and you should try not to judge yourself because of them.
Once you have acknowledged that you feel angry, sad, guilty, etc you may want to explore why you feel this way; sometimes feelings are closely linked with people or events that have occurred in the past, or are currently occurring.
It may help to consider if you have felt this way in the past and whether the feelings passed or changed over time and whether you want to do something to address the feeling.
It isn’t always necessary to deal with feelings. Sometimes it is much better to allow yourself to feel angry or sad etc, as this can be part of the process of coming to terms with things. Remember there is no right or wrong way to feel, and no specific time for how long you should feel that way.
Sometimes new or strange emotions can be worrying and overwhelming and can lead to unfamiliar behaviour. This may be evident to you as well as to others. If you feel concerned or distressed about your feelings or how they are making you behave, you may find it useful to find someone to talk to.
Perhaps it is other peoples responses to your feelings or behaviour that is distressing? Maybe they seem impatient, distant or judgemental. Don’t assume that others will know how you are feeling. Wherever possible it is best to communicate to others exactly how you feel, and, in return, consider how they feel. Try to explain, if you can, why you feel this way and understand that it will pass.
If an emotion is persistent, recurring or distressing you might want to consider formulating ways to deal with it. For example, on days when you feel very low but know from experience that you will probably feel better the next day then you could try making a pact with yourself, such as I will allow myself to be sad today/this morning on the understanding that tomorrow will be a better day. You may be pleasantly surprised how effective this technique can be.
Some emotions, especially those that relate to a deep-rooted issue or past experience may be very difficult to deal with or circumvent. In these instances it may be best to allow yourself to feel this way, try to reduce the impact it has on you by devising an action plan. This could involve organising support and perhaps professional help. See Support.
Dealing with bad days
On a spectrum including really awful days and really good days you are likely to have a few at either end with the rest falling somewhere in the middle. But the relentless nature of hepatitis C can, unfortunately, challenge you with some pretty awful days, both physically and mentally.
It is worth considering the number of ways you could deal with bad days. A word of caution here; try to be vigilant and consider whether they are just the odd bad day, or whether it is possible that there may be developments in your condition that require some professional advice. Keeping a symptom and/or side effect diary can help you to keep a check on how often you experience bad days and whether the feelings or symptoms associated with them are becoming worse or more frequent.
If you find the bad days increasing in frequency or intensity you should let the person responsible for your care know, this could be your consultant or GP. Hepatitis C infection and the treatment for hepatitis C can take an enormous toll on you both mentally and physically. Some symptoms will simply not respond to any efforts you make to try to combat them and may require professional intervention.
For example depression is a recognised symptom of hepatitis C and also the treatment. If sad or depressing days are frequent, dont suffer in silence, speak to your doctor, who may be able to prescribe something that will really help. Equally treatment is available to combat or alleviate some physical symptoms such as fatigue and pain.
Physically bad days may be easier to deal with in some ways. Feeling too tired or too sick to do what you wanted to do, or planned to do, can be frustrating. Try to have a contingency plan that requires little energy for those days, perhaps a video or good book stored away for such days. Maybe you could keep a ready prepared meal in the freezer or plenty of tinned food in the cupboard for when you don’t feel up to cooking. Having a plan of action that means you are able to get through the day, ready to fight the next, will make you feel more in control of things. You could perhaps use these days for planning how you will spend you next good day, that way they do not feel wasted.
If your bad day is because you feel less able to cope or are feeling depressed then there are still a number of things you can do. Firstly, try to accept that some days will be better than others and take one day at a time, give yourself some space and allow yourself to feel down or fed-up on occasions. Give some thought as to why this may be, whether there was a trigger or a pattern and if there is anything you could have done to prevent it. It is most likely that you will not have all the answers to these questions, but they are worth considering.
Sometimes simple things can make a difference. For example physical exercise, if you feel up to it, is known to boost brain chemicals that have a positive impact on mood, taking a walk or a gentle swim may help, but be careful not to tire yourself out.
Consider whether it is possible that a pattern of negative thinking may have developed, which may not be your fault. For example, is this your usual response when things become too difficult? Maybe it is something you have learnt over a long period of time, possibly from others. If this is possible and you feel that you want to address it, you could ask yourself what you are likely to gain from this way of thinking? Is it beneficial to you in the long term?
Changing patterns of thought and behaviour can be extremely difficult. Most of our habits and behaviours have developed over long periods of time and very often are unconscious. As a consequence we may be unaware of them or if we are aware and want to change them this often requires a great deal of unlearning, commitment and perseverance. Firstly, be vigilant; look out for signs that negative thoughts are creeping in. Secondly, remind yourself why you do not want this to occur. Thirdly, devise a plan of action: This may seem a simplistic example but its amazing how a different kind of response can actually make a significant difference:
Let’s say you wake up one morning and can’t be bothered to get washed and dressed. This is not a good sign. You remember last time this happened you didnt get washed or dressed and only ate crisps for five days. By the end of the five days you were so depressed and it took three weeks before you were back to normal again. So perhaps this time you accept that you dont feel great but you immediately turn on the bath and make yourself a hot drink. Whilst relaxing in the bath you make a mental list of things you could do that day, that are positive but not too taxing. This could include making contact with someone, a visit or a phone call, taking a walk and doing one thing that is practical and one thing that is pleasurable. Allow plenty of time to do each thing so that you are not rushed or putting pressure on yourself.
Make a mental note of what you have achieved at the end of the day and you can see that you changed the way you responded to a negative start to the day. Once you get the start to the day sorted out, the rest often follows. If you are able to achieve this on most occasions, then eventually you may learn a new response to habitual negative thinking .
The danger of being isolated
Feeling isolated alone or depressed is a very common reaction to any illness and one that relates not so much to being alone but rather to feeling alone despite having others around you. Loneliness can stem from feeling that nobody understands what you are going through, or that you are somehow different from others or abnormal.
Sometimes it is important and necessary to be on your own, this allows you time to think and reflect. But choosing to be on your own and feeling isolated are two very different things. The danger of isolating yourself is that negativity can build with no-one to counteract it. Then you may feel worse and, as a consequence, get worse and so a vicious circle can develop.
It is important to be aware of this downward spiral and if you find it happening, to seek contact with someone rather than cut yourself off. If you find yourself feeling isolated and don’t have anyone you feel able to contact, please see our Support section.
Wherever possible, try to maintain your usual contacts. You may need to make adjustments if you have less energy, less money or feel less active. But, as far as possible keep in contact with those people who have been important to you. Sometimes it is enough to have just one or two close friends who are there for you.
Another important feature of being isolated is that it can cut you off from essential information about the disease, about treatment and about places to get help. Stay in touch with healthcare professionals and hepatitis C related organisations and support groups so that you can stay informed.
New Relationships
If you don’t have people who are able to understand how you are affected by hepatitis C, then you may need to look for support in new relationships. For example, if you are fortunate to have a hepatitis C support or self help group in your area you may consider contacting them. Very often they facilitate drop-ins or meetings where you can meet others with hepatitis C. Sharing information and concerns can alleviate some of the loneliness and isolation.
Dealing with other people
Hepatitis C can make dealing with other people particularly challenging in a number of ways. Commonly those with hepatitis C experience mood swings, feel very irritated and short tempered, self-absorbed, intolerant, tired, depressed and worn down. If you are aware of this and the fact that often your reactions are being provoked by the disease itself, it becomes easier to react less to people. The problem of failing to temper your reactions is that it pushes people away, in particular those closest to you and these are exactly the people whose support is the most valuable. Understanding the nature of hepatitis C, mood swings, depression etc. helps to create the possibility of not taking your emotional state so personally.
Emotional inconsistency can make people nervous of you. Ensuring that others understand that your behaviour is often provoked by the virus will mean that they are less likely to take things personally. This is not to say that these mood swings are an excuse for being inconsiderate or badly behaved. Being aware of your vulnerability to mood swings and the impact they can have on you and others close to you is key to enabling you to take some control over them.
http://www.hepctrus t.org.uk/ Wellness/ mental-and- emotional- attitude/
Thank you for that email. I got a lot out of it. I hope you get everything
back on track with the transplant. Good luck and get well.
Thanks Again
Bernie
----- Original Message -----
From: “vew459” hepatitis-c-cpt6989@lists.careplace.com
To: eaglerus@cavtel.net
Sent: Friday, April 04, 2008 4:02 PM
Subject: Re: [hepatitis-c] please share your treatment stories.