hrsetrdr wrote:

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rotting to the core wrote:

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Tim (Rotting to the Core) need to change that. No longer fits the new and improved me.

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 I'm not sure  if a user/member's name can be changed with this forum's software; you might want to contact Jill.

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 Hi Tim, just to say that I can change your user name for you if you like, as you`re no longer `rotting to the core`!  ~ Jill

When I read of other's posts who have just become UND or have passed their SVR target date, I get an inward and outward smile.     A warm sensation, no doubt most here have experienced.  As others have noted, this disease has a way of binding us together.  Those who have experienced failed or prematurely ended treatments, understand the disappointment, and frustration of that failure.  Unfortunately, most here are also intimate with the debilitating effects of this virus.  Many here have friends or acquaintances that have died from related comorbidities.  

While the never ending journey of SVR and renewed health is a common goal, our paths may differ.  It is a good and remarkable thing we do, to feed and nurture each other along the way.  A true blessing.

PW,

Another tale of progress:  As I progressed through the 48 week treatment, I got weaker and weaker.  A short hike (3.5 miles) which is one of my favorites first became a challenge to get through, then impossible to finish, to where I was only able to go about a mile or so by giving it all the effort I could muster.  Yesterday, I did the whole thing - no problem.  Now am into the 24th week of post treatment, and my final PCR test is this Friday.

Yes, it does take a while, but you will be fine.  Take note of what is better, what is improving, and the rest will happen in its own time - some sooner some later.  Our healings are linked with all those who have borne the same burden.  Thanks for all your efforts and help for me and all of us.

Bill

PW,   another bit of testimony: just today I planned to modify an outside project that I did six months ago.  I recalled the brain fog, and how marginal I felt about completing the task.  My confidence in doing this same task today is 100+ percent...a real good feeling. 

rotting to the core wrote:

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Tim (Rotting to the Core) need to change that. No longer fits the new and improved me.

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 I'm not sure  if a user/member's name can be changed with this forum's software; you might want to contact Jill.

P.W.,

As you have read the side effects of treatment and the length of time vary greatly. All I would add is a resounding YES!!! We do get better. I honestly did not think the day would come I could say that. I too was ready to through in the towel, told my son I wanted a   Viking burial, being of Norwegian descent and after all didn't I just slay the beastly beast of a Dragon.

  Anyway as of today I am 28 weeks post treatment, 48 weeks of Interferon-alpha2a & Ribavirin.  

  My Dr. (primary care physician) told me the lingering side effects could last up to two years, that floored me. My biggest problems have been fatigue as well as joint pain, I really notice the joint issue because I used to play guitar, today not so much. A little flat picking now and again but no scales, maybe someday but not yet.

As far as the brain fog...it has all but virtually gone away, sad part about that so too come the memories of the things I said while on treatment. For that I apologize to my friends and mentors here as well.  

   Things do get better, as has been said it varies from person to person. I have found sometimes I need to be firm with myself and go the extra mile, and some times I need to give in and listen to my body.

 Well that's enough of my ramble, I believe congratulations is in order.

God Bless

Tim (Rotting to the Core) need to change that. No longer fits the new and improved me.

PW,

Yes, we all have felt as you do - this disease and treatment options are real buggers.  The mental and physical toll is great and it does cause one to think in terms of the end of life and our mortality.  Believe me, most of us have been there, or are there or will be there at one time or another.  It is a challenge to take the long term view and know we will work through it and come out the other side stronger and with a greater appreciation for life and those we love and who love us.

The question as to whether your feelings are primarily mental or a result if your physical disease may be unanswerable, but they do go together.  Feeling so bad physically does play havoc with your mind and it is hard to clear your mind and think positively when your body is hurting.  Spiritually, everyone has their own way of connecting with their inner/outer being.  Knowing the love you see in your son's smile brings that reality to the forefront and gives an inner calmness and strength to meet the physical and mental challenges you face with this disease and the journey to healing.

You will get through this, you will be healed and it will be better.  You are not alone here, we struggle for ourselves and for everyone in our situation; healing for one is healing for all.

Hi again PW:

Well, it turns out I had more than a couple of on topic books, more like an entire shelf of a bookcase.  I began reading "self-help" books shortly after I learned my tx had failed.   I had gone to see a new Hepatologist who advised me that not only was the virus alive and well but I probably had cirrhosis too.  I wasn't surprised that the virus hadn't permanently departed, since my tx ended at week 10, but the cirrhosis came as a tremendous blow considering my pre-tx biopsy showed a 2/2.  Just to give you some idea of my thought processes during this time, I found a book on my shelf entitled "Dying Well."  That is not the book I am going to recommend to you.  

The best book I read is called "The Anatomy of Hope, How People Prevail in the Face of Illness," by Jerome Groopman, M.D.   This book was on the New York Times Bestseller list and it isn't your typical Chicken Soup for the Soul type book (not that there is anything wrong with those but I wanted something a bit more substantial).   Dr. Groopman practiced oncology/hematology for 30 years before writing this inspiring book.  I think you might like it. 

Hi PW:

What you are feeling is perfectly normal and I'll bet there is not a person among us who has not had these thoughts.  Chronic illness is difficult for everyone; it effects us physically, mentally, and spiritually.  Nobody can suffer a chronic illness without being impacted mentally; illness can create chemical changes in our brains. Add to that the trauma (yes, trauma) of a debilitating treatment that was unsuccessful and even Superman would be questioning his strength.  

If your own mortality issues were not enough to deal with you also have the responsibility of another human being who is dependent on you.  Frankly, the only thing that surprises me is that we have not all gone stark, raving, mad.  Human beings are resilient in body and mind; that is why we can survive so much.  You are young and will be dancing at your son's wedding.  Believe it.

Unfortunately, having too many dark thoughts can also negatively effect our brains and bodies.  So, we do need to keep from falling too low.  I"m going to look for the title of a good book or two that might help you to deal with this.  I have a couple already and I will also check at Amazon.  

Make sure you are eating well, exercising (as your body allows) and getting plenty of sleep.  I have found that walks, especially in good weather and in nature filled surroundings, are very beneficial.  If you need to talk to a therapist do that too.  There are therapists who deal specifically with people who are experiencing health problems.  Hang in there; you are going to be fine.  

hrsetrdr wrote:

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 I have had similar thoughts and feelings, primarily during post tx, so don't think that you are alone in having "unusual" or "morbid" views.   I think that it's normal to feel concern over one's future wellness especially after having invested large amounts of "blood-sweat & tears" during such difficult medical treatment.

Dont' feel guilty about not feeling good even though you "have plenty to be happy about".  You will work through it, and you will regain your joy,  I promise.  

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 Thanks Tim.  I'll take it one step at a time.  For now I'm hoping things will improve.  If it doesn't I'll cross that bridge when I get there.

Hi Bill, thanks for the verbal analysis of the way that acupuncture works, I like the 'unified' overview of the body/mind function, as well as the tying together of all living beings, and how it all comes together...sure makes a lot of sense.

patiently_waiting wrote:

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I'm really hoping there's improvement after SVR. I have been feeling worse and worse the past few years, to the point that I spend quite a bit of time worrying about how well off I'm leaving my son when I'm gone. I don't have any scary test results or anything to make me think I'm going anywhere soon, but just based on the way I've been feeling I subconsciously have gotten the notion I'm not long for this world. I'm sorry for being morbid but this is just honestly the way I've been feeling. I shouldn't be thinking about end of life issues so much at 42. I've been very hopeful that if I can clear this virus that my liver would heal and all would good again, but that may be at least partly wishful thinking. I suppose if I'm not feeling better after treatment I will know at least I have some other problem that needs to be addressed.

This whole train of thought leads me to another question I kick around in my head. Are my issues primarily mental? Am I exhausted because I'm depressed? Or am I depressed because I'm exhausted? There's a chicken or the egg situation going on here. I know logically how powerful your mind is over your body. I know that you feel better when you're happy and you feel worse when you're not. It's not strictly physical. But why am I still tired even when things are going great and I have plenty to be happy about? It can't be just mental. Sometimes I don't know though.

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 I have had similar thoughts and feelings, primarily during post tx, so don't think that you are alone in having "unusual" or "morbid" views.   I think that it's normal to feel concern over one's future wellness especially after having invested large amounts of "blood-sweat & tears" during such difficult medical treatment.

Dont' feel guilty about not feeling good even though you "have plenty to be happy about".  You will work through it, and you will regain your joy,  I promise.  

Hi Groupergetter, sorry its taken me sooo long to reply. My experience post tx was pretty wild. I had no idea or plan on what to do to get back to "normal" after such a traumatic tx experience. It just unfolded in a nice way.

About a week after tx ended I began studying for a certain exam that included math, science, English and Social Studies.

No kidding....I had to get it done before the years end or I would have had to study all new materials and do the exam on a computer. I could test on the subjects separately, so I really pushed myself hard. I had my study book and gave myself 7 days per category, then i would test the end of the following week the subject I studied. It was brutal. I hadn't studied since the late 70's, but i have to say it really helped me getting my cognitive abilities back. I had terrible headaches during this time too but I continued to push on. I finished testing with flying colors mid Nov  and came down with an acute case of colitis. My Np said that was from the interferon.

During this time I also made an effort to move at least 45 minutes a day, mostly walking and jogging and  I paid special attention to the food I was fueling my body with. It's really made a difference for me. I finally broke out my Champion juicer I bought in 2012 and started using it daily at the beginning of the year.

It's a combo of a whole lot of things, and like I said I didn't have a plan about this or anything. I just set my intention and started walking forward. Having a thankful heart helped too.

I have tons of energy mental and physical, but I did lose my checkbook last week and that was a bummer and I forget words a lot but, it's a far cry from the way I was last year. I'll gladly trade a little brain power for a virus free body. I get sore but I just keep on moving. It seems to go away when I move a bit.

Tazcat, you hang in there. Not much longer for you to go. Interferon and riba sucks! It will be a distant memory in a few months and you'll be glad you did it.

Bill, I loved your post. Nice insight. I too believe we're all interconnected in a sacred mystical way. I have had acupuncture tx's over the years. It's the Chi that needs to flow freely. Funny, that the acupuncturist's were trying to cool the fire in my liver 20 years before I knew I had the virus.

Good going Smuccne - happy days for you.

love ya all bunches

thank u groupergetter. I pray for you & all of us here on treatment & the ones who will be starting treatment.  Shot Friday, then only 9 left. guess I need to count my days. brain fog here. I just know I think I will be done in july sometime.

Taz, I'm praying for you right now. 

First tx for me was interferon/riba for a year, worked the entire time with flu-like symptoms only to fail.  A few years later did the peg interferon/riba for about 3 months before stopping.  Never forget it.  Was so sick around Christmas thought I was gonna die. Was off work sick for nearly 2 weeks. The only time in 25 years I've missed more than a couple days.  There are those here who understand, at least some of what you've been through. 

Taz, you're not whining, you said it.....having a rough day.  We've all been there. In reading other posts on this forum that's pretty clear.  I have CRSS, Can't Remember S Syndrome but in this round of tx I already have two dates etched in my memory that will never be forgotten.  The day I started tx and the day I first found UND.  Really looking forward to the third, which I'm sure you can guess. Even if I don't make SVR and have to start tx again, I'll never forget those dates. 

Keepa-go, when you get your first labs, things will be better.  When you get UND it will be MUCH better.  Only 71 days, but hey who's counting?      It goes quickly.  

Odd, I was editing a previous post to show 71 days instead of 75 but the entire post was saved?  No matter, maybe it's just the brain fog?   Or perhaps I clicked reply rather than edit?
-- Edited by Groupergetter on Wednesday 7th of May 2014 11:20:41 PM

-- Edited by Groupergetter on Wednesday 7th of May 2014 11:24:38 PM

Thanks Bill,  

You did a fine job of explaining your thoughts and experiences. It's interesting to listen to someone else's viewpoint on alternative medicine. I believe many fail to understand that some forms of alternative care, like acupuncture, deals with the mind and "inner self". Those that are quick to deny it's benefits are stuck in the now or the physical. When you expect something physical to occur, you fail to experience the mental aspect of such care. Without the belief and an open pathway, the force of healing energy is prevented from reaching it's destination. When we allow modern and various forms of alternative care, like acupuncture, to work in unison,  the results can be outstanding! Thanks for enlightening me, I appreciate it...

Tig

Hi Bill, you`ve explained and expressed your thoughts very coherently, and many thanks from me too for such a heartfelt and uplifting post.

This community is proof of how the power of mutual caring and support can go a long way to help people feel connected to one another and I believe that our emotional reaction to living with Hep C and going through treatment can make such a difference to how we cope with it.

I expect you`re right that not everyone will go along with these ideas but I really appreciate you taking the time to share your thoughts with us and for such an inspirational post.  Thank-you!

Hi Bill,

What a beautiful and inspiring post.  It was just what I needed !!!  I had/have become very lost in light of the many losses, both financial and real, in the past few months.  Needed someone to help me re-connect with my own beliefs.  And your words were exactly what I needed.  Yes, when you share your healing. it heals those you touch.  Thank you so very, very much.

SuziQ

Tig,

It took a while to jot down these thoughts and I am not sure what follows is coherent, but it works for me.

I am not an expert or even very knowledgeable concerning acupuncture, however I have been receiving treatments for twenty years or more. As I understand it, acupuncture does recognize the unity of body, mind and spirit and healing involves the total person. There are energy pathways and points in our bodies which can facilitate healing, and if blocked can restrict our ability to heal. The mind, with emotions and thoughts, is better able to aid in healing when the body is better able to function and when healing energy can reach affected areas. Emotions are tied to the flow of energy and will often be represented in specific organs. For instance, traditional Chinese medicine teaches anger resides in the liver and is connected to this organ. I wonder if the famed "riba rage" has more to do with the liver purging itself of the virus than the drug itself.

The sacred interconnectedness of all people and our relationship to the world we inhabit is what we all share in this consciousness. For instance when we look our fellow warriors in this struggle for healing from this disease we recognize how we are all in this same boat together and healing for one represents healing for all. When I work for my own healing, I work for everyone to be healed. For me, connection with nature and the mountains especially brings me to the realization we are all together and one in this grand scheme of things.

Alternative medicine such as acupuncture may not be for everyone, however I find disease and healing to be more than just isolated events they are interconnected with all that exists. A positive attitude and approaching this journey without fear and trepidation and looking at that most powerful force in the universe of love seems to me to be a natural way to approach living in this world and the journey beyond, whatever that may be.

Words limit in describing what is, but these are just a few thoughts.

Just the way I see it.

Bill

Hi Bill,

I'm intrigued by your mention of acupuncture assisting you with your post tx recovery period. Can you elaborate on how it improves everything? Is it an improved blood flow or what? I'd like to know how it might improve some nerve impingement or how it might allow for an improved tx experience. This is an interesting topic. Anything you can add would be appreciated! Thanks....

Tig

Greg,

Am 22 weeks post treatment, 22 months post liver cancer surgery and one month post incisional hernia surgery (caused my Dr. says from the interferon during triple therapy).  One thing which has helped get rid of most of the brain fog and fatigue has been acupuncture treatments.  It has helped with clearing the drugs like the anesthesia for surgery as well as the pain meds taken post-surgery. And I'm sure it has helped clear the interferon, riba and victrellis as well.  I noticed a definite improvement with brain fog, fatigue and general malaise, and though there are still some residual effects, I sure feel a lot better.

I am generally an active person and exercising has helped, though when on tx and right after, it could be a challenge to do anything at times. Most often I wanted to do more than I could, but knowing I was going to recover my previous level of functioning and surpass it now that I am rid of the HCV (knock on wood), was a comforting feeling. 

Recovery from the surgeries has been slower than I wanted, but as we get older the body does not respond and heal like when we were in our 30's or 40's - or even 50's for that matter.  Patience and persistence, take it as it comes and know it will be all right in the end.  If it is not all right, then it is not the end.

Take care,

Bill

Taz, I'm praying for you right now. 

First tx for me was interferon/riba for a year, worked the entire time with flu-like symptoms only to fail.  A few years later did the peg interferon/riba for about 3 months before stopping.  Never forget it.  Was so sick around Christmas thought I was gonna die. Was off work sick for nearly 2 weeks. The only time in 25 years I've missed more than a couple days.  There are those here who understand, at least some of what you've been through. 

Taz, you're not whining, you said it.....having a rough day.  We've all been there. In reading other posts on this forum that's pretty clear.  I have CRSS, Can't Remember S Syndrome but in this round of tx I already have two dates etched in my memory that will never be forgotten.  The day I started tx and the day I first found UND.  Really looking forward to the third, which I'm sure you can guess. Even if I don't make SVR and have to start tx again, I'll never forget those dates. 

Keepa-go, when you get your first labs, things will be better.  When you get UND it will be MUCH better.  Only 75 days, but hey who's counting?      It goes quickly.  

congrats smccune..  groupgetter, my co workers suck. they know how hard I have tried to do treatments. they have no freaking compassion & I work for a place that helps ppl with disabilities. go figure. my boss is a smartass to me & others talk. my wish would be to get on disability next yr after car paid for. I am going to (I think) consertativeship (sp ain't good today)  over my dad's stuff cuz sis bilked him out of 1.6 million. & I live like a pauper. it is nuts. if this happens I think my dad will help me a little. but main thing is to get all his money & property back so he can live his last days without all the stress. he is 80, has alzheimers. I cry a lot about that. but we will get her. vulnerable adult act I hope too. but I will make it with co workers. like u I have to have the insurance to get thru treatment. I do all the accounting for our place & yes it can be overwhelming but I am trying so damn hard to get er done. thank god this is only 12 weeks. last time was 32. for the life of me I do not know how I did that. & then relapse. I will beat this along with the rest o fu. we will ALL get this part of our life behind us.. I am a whiner today!!

Almost 2 months post tx and my energy levels and brain fog have improved immensely.  I don't notice day to day, but when I look back to a month ago...I can't believe how much better i feel and the more I can accomplish.  I still have a ways to go, but I am so happy with every little improvement.  It can only get better with time.   CHEERS EVERYONE!!!

Dear folks, thanks for the thoughtful and encouraging responses, I do appreciate it.  I have major changes going on in my job which requires multi-tasking, continual computer use,  and dealing with other people's problems all day.  Could be very stressful, but I have so much to be Thankful for, the work really doesn't bother me.   It is however embarrassing, to have the lack of recall, inability to remember names, and  articulate in an effective manner.  For whatever reason expressing myself in a written format doesn't seem as much a problem?  No doubt, my co-workers, and those I supervise realize I have "health issues".  If it wasn't for health insurance, I would probably retire. 

Having been in tx only 60 days, I notice a slight improvement in muscular problems I've had in my legs.  I've had the fatigue for so many years, unfortunately it just seems normal.  I like the way Isis phrased it, "works in progress"  That seems to be a healthy perspective.  Hoping and praying for SVR and some cognitive improvements.  TGIF  Hope all have a happy, healthy, and safe weekend.

Isiscat2011 wrote:

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JoAnneh:  I just noticed that tomorrow is your birthday (it is listed on the calendar).   HAPPY BIRTHDAY.  

So, which one is it, 29 or 30?  

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Sounds as though it could be 25......all that good energy.       Happy B-day JoAnne

JoAnneh:  I just noticed that tomorrow is your birthday (it is listed on the calendar).   HAPPY BIRTHDAY.  

So, which one is it, 29 or 30?  

Hi Greg:

I'd like to begin with some prefacing comments before I tell you about my personal experiences.  First of all, we are discussing post treatment issues where the tx included Interferon/Riba and often a first generation protease inhibitor.  While we cannot predict the future it seems very likely that people undergoing tx with all oral regimens will have far fewer post treatment issues.

Secondly, it is very difficult to separate the damage done by the tx drugs vs the damage done by the HepC virus, particularly when people are symptomatic going into the tx.  This is a big grey area and it probably always will be.  

I really like what hrsetrdr said about "still working on" it because I also see this as a work in progress.  Regardless of where post treatment issues originated from--the virus or the tx--the best we can do is to make the best of our given situation. There are a number of things we can do do improve both mental and physical post treatment issues.  There are actually "brain exercises" that can improve memory and thinking.  Some very basic ones include reading and writing (as opposed to say watching tv).  You are reading, writing, and exercising your brain right now and that is a good thing.  Eating well and exercising (even moderately) will often improve symptoms like brain fog and fatigue.  

My treatment with triple therapy ended in January, 2012.  Before tx I was functioning very well mentally but was under a considerable amount of stress after learning that I had HepC.  My HepC diagnosis felt like a life altering event and it proved to be just that.  During treatment I had severe cognitive impairment.  I had difficulty reading, writing, speaking, and even formulating and retaining thoughts.  I couldn't remember words and I even forgot my address and telephone number a few times. I felt disoriented and confused.  I saw a dramatic improvement within days of ending tx; within weeks I was even better and within a few months I felt cognitively back to normal.

I had fatigue and muscle pain before tx but it has gotten worse since tx.  Natural progression of the virus plus age or the tx?  Who knows?  Probably a combination of the two.

I experienced a couple of health issues during tx that I do expect to be dealing with for many years to come if not for life.  Those are low platelets and high glucose, both of which were normal prior to tx.   Before tx my platelets were at 200 or a bit higher.  During tx they dropped well below 50.  They increased almost immediately, but never to where they had been pre-tx.  My platelets are now at about 90 and appear to be slowly dropping.  

My glucose readings were consistently good before tx, always well within normal limits.  During tx my glucose levels became markedly elevated. They have not improved since tx and last month I was diagnosed with type 2 diabetes.  I have never been overweight and have a healthy diet so my PCP put me on Metformin to try to control it.  

We are all works in progress.  It seems more probable than not to me that you will feel more energy, and generally better, post SVR but SVR is not a magic potion that makes all things new again.  If you can view whatever remaining health issues you have as a challenge rather than a curse you will naturally feel better about yourself and your health.  Try not to worry because stress can feel like brain fog.  Keep your mind and body active.  

Greg,
I am 12 months EOT and I go like an
Ever ready battery so any fatigue I feel
Is earned.
I am struggling with my  memory and speaking words

to complete sentences.  It started while on treatment.
I haven't told anyone nor my doctor.
Guess it's scary to admit and don't feel
There is anything I can do about it.
This topic came up about 6 months
Ago and some of us have these problems.
Malcolm is so BRILLITANT he wouldn't notice!
My husband has noticed at times I can't
get my words out to complete sentences.

I am relieved to be SVR and just had my
2nd grandchild. Life is good good.

Hi Greg, I did 24 weeks treatment with peg/riba (for gen 3a) and my experience post tx has been very positive.  I have had a huge improvement in my energy levels and general well being since SVR, although it did take a while, and bear in mind that I had been suffering from severe fatigue for many years beforehand.  

It was about 6 months post tx when I really started recovering from the tx side effects and feeling better, and actually my energy levels and stamina are still increasing, slowly but surely, even 3 years later.  My previous muscle and joint pains have also got a lot better since SVR.  I would say I still have a certain amount of ´brain fog´ and memory issues at times, although I´m doing more in my day to day life than I´ve been able to do for many years.   

For me, doing treatment has given me my life back, although it´s a very individual thing and our experiences of tx and post tx are bound to differ a lot, depending on various factors.

Hi there, my husband did 48 weeks triple therapy (Victrelis).  Brain fog, joint pain were still very evident up to 8-9 months post treatment.  He has felt significantly better in both areas of late, but it's taken time.  Hope this helps.  Caroline

Hello Mallani,

I've had Hep C since the early 70s. Did you notice any improvement in energy levels post treatment?

Hi Greg,

You will probably get a wide range of responses.

I did not really have any symptoms from chronic HepC, but I had it since 1969 so it's hard to tell. I've never had brain fog ( I don't think) and my problems were all due to treatment. The fatigue was anaemia related and subsided rapidly as Riba left my system, and the joint and muscular problems from Interferon have now resolved, over 1 year since EOT.

Having a chronic disease that will impact your life expectancy and quality of life is stressful, so that has gone. I obviously had some pancreas problems from HCV, and this has gone and my blood sugar is now normal.

I was lucky not to have significant symptoms pre-treatment. A month after EOT, my Hepatologist asked me whether I felt better. Ridiculous question, at that stage, as I still felt like garbage.

Sorry not to be of much help.

Could folks please post their experiences with improvement (or lack thereof) in brain fog, fatigue, muscle/joint pain after treatment?  I am curious what tx you did and timeframes for noticed improvement. I have brainfog/memory issues and fatigue.  Trying to get an idea of how long it might take, to see improvements in these areas.  Thanks for all replies.