Post Treatment Diaries II

[pete c]

 DEAR FRIENDS

  AS i read this post the one thing i have learn from all of you  is 1 normal is what it is for ones own self,Acceptance is just as important post tx as it is during tx. you all have give me alot of hope that no matter what life will go on.

 poncho &lefty  thanks man for starting this  for it has been a blessing to this hepper.

 Well thanks again to all. stay strong in your journey for to day and to thine ownself be true.


                                                                                  pete

[Corbell]

Hey there - so good to hear from you all...

I've really learned alot in the last few minutes...like the Hatha Yoga class? I use to take the regular one but could not imagine that now - I still do stretches but that's about it.

And the positive comments about Lyrica - I started taking it about a month ago and it is really helping with the leg pain but I thought it was making me tiered and stupid but now i am realizing that many of my symptoms are probably from the tx throwing me into a nasty menopause - may start some hormone replacements...just looking into that. The Consorta has helped some with the chronic fatigue.

Good news though - The Rituxan infusions seem to finally be helping my RA - morning lockup is now only an hour or two instead of all day. YIPPI

I totally agree with you Robin about how this virus can so brutally affect so many of us for the rest of our lives and no one will admit it - can't believe the confrontations I've had with my docs...I hate the way they just keep pawning me off to someone else...I must have 12 docs now - yee gads - like Becky says - the dragon juice wakes up some nasty criters.  And Kira the nerve thing is so true - from what I understand it's even worse when you are thin (I was 100 lbs at one point - am now back to my portly 113) I only treated for 13 weeks but when you start off with autoimune problems or any pre-existings you are a ticking time bomb. The first Doc I saw at Cedars actually told me not to treat...I was stuborn and went to UCI where they gave me the go...I just pray I'm still clear. I've writen a pretty detailed journal that I'm sharing with both of them in January when I find out.

Also love to hear your moving out Max and Becky....I am riding my horses more but the feet still don't want to get me around much - carry my silly stool-cane everywhere - it's amazing how many people ask where I got it (ebay)

To bad the medics can't spend some time on these forums and find out what this freeking tx really does eh Robin?

Anyway I am seeing some light at the end of this rabit hole and just have to keep staying positive.....and I have all of you to thank for that...you are all inspirations

Big Hugs and happy Thanksgiving - Here is a feel-good for you all... http://news.simpletruths.com/servlet/cc6?kpuitLQSSBQAVupsspuhLxHKLtiopHQgLlVaVR

[robin]

Excellent link, Corbi. I wish I was clever enough to be able to put into words something that had such meaning as most of those "pictures". I do hope you continue to respond. You might rethink the hormone replacement or at least discuss it with your doctor. That was the first thing they stopped when they got my biopsy results. Seems like most people with hep have automimmue problems, or at least a significant number of people do. Everyone, stay strong and be good to yourself. You deserve it. Keep your spirits high...robin

[MissyMouse]

Corbi,

I went through surgically induced menapause at the age of 40.  I tried 2 different hormones (Premarin and Estratest).   I didn't get much help from them and did better getting through it without any help.   However, I may have had an easier and quicker time than most do.

Mouse

[Pancho and Lefty]

Hi posters,

Becky, I would begin by getting several yoga books from the library. I began with Indra Devi, Swami Satchidananda, and used Hittleman in a college class. Seems to me like taking classes motivates people for an hour or two a week and. . . yoga/tai chi/qi gong is a daily meditation/practice. A class could be a great way to get started. I would beware of any new age takes on a very ancient practice. Things that've worked for a thousand years may not need to be improved on. Anyway, that's my two cents. 

Corb, hang in there woman. The path is always forward. Like others here, I would be there to help you pull if I could. It does sound like you're getting good counsel from the women here.

Today, my take on post tx general health is that I want to get back to where I was pre tx. . . . first. I wonder if that would be a reasonable goal for anyone post tx??? Yoga postures and movement (Robin, I taught dance/movement/fitness/sports to kids. . . dance and creative movement didn't exist when I was five  ) are useful if I do them everyday. I do tai chi with my 90 year old mom when I can. Everyone is different. Some kids could never pass the "President's Fitness Challenge." But, anytime any of us makes an effort to increase strength, aerobic endurance, or flexibility. .  that is certainly heading in the right direction.

Oh, after getting back to where I was. .. while carrying the dreaded virus around for 2/3's of my life. . . . I don't think it would be unreasonable to expect to be more healthy if by chance the damn stuff does go away.  Otherwise, what would be the point???  PS Corb. . . have you done a PCR lately?

keep to the high road. . . there's a lot less traffic,

Max

[robin]

Hey Max...I heard the other day that 2/3's of the youth today are OBESE and that this is the first generation that will not have a longer average life span than their parents. This is a direct result of lack of exercise along with fast food. Your Mom is a prime example of what some form of exercise program will do, doing tai chi at 90 years of age. Good for her and for you. I very much hear you and agree on the being healthier after clearing...you "woulda thunk' that would be. keep your spirits high...robin 

[Pancho and Lefty]

Hi Posters,

I read Kerry's posts about eye probs and talked to someone on tx today having eye 'issues.' Mine got very sensitive to lights and rapid movement. The tv would drive me nuts with the rapid scene changes and godawful bright lights. Watching the world series was almost impossible. Headlight from oncoming cars got to be physically painful. My eye doc did a thorough exam during tx and found some interesting stuff. I encourage anyone pre, during, or post tx who hasn't had a good eye exam to get one. There's a lot at stake.

Well, it's 15 wks post now and things are better. The tv can still be distracting, headlights are still not comfortable, but things are greatly improved over what they were during. I noticed I could run stairs two at a time just lately. Almost all the physical problems are much better. One exception is the osteoarthritis. . . it seems to be worse and not improving. Oh well. . . such is life after tx.

I've got an appt to see my GP on Monday. I'm going to ask for a PCR among other things. I've read doing one about now is about 98% percent accurate predictor of SVR.

Life has taken some interesting twist and turn post tx. I expected it all the way. . . but not sure I was prepared for it. I'll post results of the PCR here when I get them.

God Bless Everyone. . .

[MissyMouse]

P&L,

I'm sending good "negative" vibes your way.

Mouse

[wings]

I have been 2 years SVR and liver looks good.  Due to dibilatating fatigue I seen a new specialist,  infectious disease.  She is stating I have post interferon chronic fatigue.  I tested positive for two viirus out of six.  Something most of us have and it reactivated.  It was  HHV6 and EBV.  The numbers had triple along with the IG M (immune system) half of what it should be.  Normal symptoms are migrane joint pain severe fatigue, no sustainment power, glands around the neck swell of course the cognitive problems. (same as during tx)  Ironically no cold or flue since post tx of two years now.     She said she sees a lot from post interferon.    I went in NYC, the local shore doctors just dont listen since all standard blood work is great.  According to Docs here, there is no reason that I should feel this way.  MD and physciatrist took me off all meds a year ago to insure the meds where not adding to it.  Have been fine off the anti d's.  Every possible test was run as heart brain, RA, anemia vascular, everything came back fine.

She said studies have been completed on people with not just the hep C it is whatever might have trigger the fatigue which goes into a broad catagory.  Chemo, flu many many virus.  I had periods of waxing and wanning.  Sometimes could go all day but would pay for the next two weeks on the couch.  I have given up trying to do anything.  She stated that the virus also can reside in the muscle so the more I do it will trigger the body's on immune system which brings you down again.  It would explain why I would do a little bit and just couldnt finish anything.  It is like I reach a plateau after tx and that was as good as it was gonna get.

The Doc treatment will be gammastan to boost immune system and then ampligen has anybody else heard of this or have tried it.  (these are injections also joy joy)

thanks
sheila aka wings

[Corbell]

Hey there,

Glad you enjoyed the link Robin...just wish life would always present such pretty pictures..so few and far between lately. But hey I'm optomistic that all will eventually be bliss....Have to have that cando attitude...but the stress of this season seems to play havack with most of our best made plans and goals....cannot believe how far behind I am...I just have had a history of "Great Expectations" and have done everything from feed the homeless to make X-mas stockings for our entire ranch (125 horses!) as well as throw the family get together and the Ranch holiday party...but I have to try to face the facts that I am not "up to" the challange this year...can't even walk a store - have to shop online...but I am better.... even if it is just 1% per month - that's OK - I'll take it.

No - I have not got a PCR since post month 2 - didn't want to ruin my holidays - will get one first thing in the New Year - it will be the 6 month mark...say a prayer for me.

I am going to start back with Yoga again...it has always helped me in the past - thank you all for the advice and well wishes.

XOXO - corbi

[robin]

Corbi...before I got my new liver, I "gave" the holidays to my daughter and also ordered everything online since I couldn't drive. This year, I am doing the holidays again but still ordered online...it's easier. I'm sending out warm thoughts that you will continue to get stronger.
Wings...on the EBV testing you had, does the infectious doctor think that it will be chronic? I mean the pain and fatigue? Since it is seen post treatment, does she think it will eventually resolve? It's crazy how we find that we have been exposed to these weird viruses in the past and never knew it. When they did my testing for my liver...I had several they tested for that were postive, including the EBV. Don't remember the others.
Lee...can you believe it is almost over for you? You have done so well and kept such a great attitude the whole time. It is kind of neat that you and Pete have been there for each other this whole crazy ride.
Our Sweet Pete...you amaze me. Your sense of humor has not only carried you through treatment but it has helped those who are either on it, thinking about it or completed it. What a guy you are.
Max...hoping that everything eventually mellows and the weird sides disappear soon. It's a long hard trip...that treatment is.
Beckers...how are things going? Did your hubby get back to work? How's the new house going with the decorating?
Mongo...You are da man. I think you win all honors in the keeping things light category, even when things are not going so for you.
MissyMouse...what an inspiration you are. Don't think I have ever met a more determined person in my life. You have overcome more challenges than most and you remain the most supportive and caring person around.
Keep your spirits high...robin

[Pancho and Lefty]

Yah Ussssss,

I just got a printout of my labs (minus PCR). My cholesterol is higher than it has been in over twenty years       I'm at 177 and Oct of '07 it was 138. I'm happy to say my triglycerides are sky high at 237. I haven't had a lipid panel like this since about 1986. I take it as an indication that hep C is not controlling my metabolism. . . at least for the moment.

My ALT is still high at 41 although that's lower than I ever recall it being.  Chloride on the met panel is high: 108. I don't have a clue what that means.

CBC is all back in normal range.  I'll post more complete numbers later tonight. I'm going to ride my bike now in the optimistic expectation that cholesterol is my most serious health problem. 

I'll get the PCR next week. I'll let you all know the results, and I'll try to be honest about my feelings if the news isn't undie.

peace

[robin]

Max...was your albumin ever low while you were positive for hep? That kind of goes with liver damage and since your cholesterol and triglycerides are getting back to pre-treatment levels, I was just curious. Keep your spirits high...robin

[wings]

Robin

Yes the EBV is active not latent.  We all have it at least 95% but it went active that combined with the IG M low which is the immune system  I did the Gamma shot today.  It was a frigin mess, on the couch nerves SHOT!!! 

I wrote a detail post and just lost it what else is new.

Do you have the EBV labs  I also had the IGA prior to tx the IGA antigen test.  My A and G test was fine not the M also the Human Herpes Virus number 6 was active.

sheila

[Pancho and Lefty]

Max...was your albumin ever low while you were positive for hep? That kind of goes with liver damage and since your cholesterol and triglycerides are getting back to pre-treatment levels, I was just curious. Keep your spirits high...robin

No, it got down as low as 4 only. My cholesterol has been 167 and lower for twenty years. I got it down from 267 with diet and exercise.

By far the most radical changes are triglyceride: pre tx  55    15  wks post  237 
                                                 LDL                           67                                  112
                                                 HDL                          46                                    34
                                       total cholesterol                  138                                  177   

Looks like a renewed commitment to better diet and more exercise is in order. Or, does the hep C virus promote good health in some strange way???

Today I realized: the difficulty of my accepting a relapse will depend on how self-centered I am when I get the news. And how self-centered I will be at any time in the future    

peace