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Author Topic: EOT Conundrum  (Read 14226 times)

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Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
EOT Conundrum
« on: December 01, 2015, 01:46:44 pm »
Not a new subject I know.  When I was a newbie there was a thread ongoing whereby, some individuals were toward the end of EOT still undetected and some folks post SVR that were struggling with their emotions and a sort of let down or, weltschmerz.  I had commented at the time objectively and intuitively.  Oddly, I had hit the mark for some of those members with my comment, however, I was only a few weeks into tx.  I had just responded following my heart and gut.
Now I am where they were.   I am 7.5 weeks into EOT undetected, so looking good, but suddenly find  recurrent states of notable fragility, insecurity, vulnerability and a feeling of being unnecessary, unimportant and the odd man out…and yes, a bit melancholy. 
I feel like I am surfacing from one of those continuum type dreams that seem to go on all night.  Not nightmares, but those dreams where you are never able to reach a nagging objective.  You are unable to run and feel like you are moving in water when you must get somewhere.  Or, you have a flight that you have to make and end up in a labyrinth, of miscues, lost documents, missing time and unlikely obstacles.  Never being able to get from point A to point B.  Upon awakening, the dream feeling is cast into the fabric of your typical day.
All those years (too much of the time) just living enough to perform my duties to meet commitments, always a little bit dissociative.  I am waking up and looking around now.  This feeling I have is not one of disappointment (I am so very grateful) rather, “well here I am, who am I really, where am I to go now, am I really necessary”…
“Weltschmerz (from the German, meaning world-pain or world-weariness, pronounced [ˈvɛltʃmɛɐ̯ts]) is a term coined by the German author Jean Paul and denotes the kind of feeling experienced by someone who understands that physical reality can never satisfy the demands of the mind. “
Perhaps all those years living with others and keeping a secret (even when disclosing the manipulated and qualified truth).  Always feeling tainted, infected, and somehow dirty.  Using all of my energy to not give in to those perceptions…am I in a sense paying the piper now?  Are these the feelings that I detached from?  Or, am I just an infant again?
Anyway, this is a rehash of past threads and perhaps not one to give too much time.  However, the psychological impact of struggling with a disease that every day for decades is dwelled upon in mostly negative ways and sometimes life threatening perceptions.  A symptom of Hep C that is considered fairly universal and ubiquitous is mental depression and cognitive difficulties.  That would tend to affect our observation of our condition.  You couple this with the real-time issues that manifest physically with the disease and you have an emotional stew.
When things happen in life that take us beyond our ability to cope they are considered traumatic by many therapists.  For some, I imagine that hep C  may have been a bit of a sustained trauma that has required dissociation to get through.  Just a thought…perhaps we are all kind of waking up.  Most hepper folks I have talked to never expected to see a day when cure was on the menu.  I feel like I have come out of a lockdown.  Like I hunkered down for the long haul which required a skill set that no longer applies.
Truly all…hope I am not coming off as a downer.  The fact remains that I am extremely lucky to get these meds in the nick of time.  Just being honest and curious how many have had a similar EOT experience, even if fleetingly.  It is OK to go through changes and they are not always pleasant.  I was once told the best way out, was through…I am blessed.
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Philadelphia

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  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: EOT Conundrum
« Reply #1 on: December 01, 2015, 02:48:44 pm »
Amen to that. You are not along. I blogged about it, with the thread you refer to being the inspiration for that blog post. As I have moved through the post treatment period it has become better, but I still feel what you are referring to from time to time. I'll be interested to see if making SRV12 changes it - two more days and I should know.

http://blogs.hepmag.com/gracecampbell/2015/09/hepatitis_c_who_are.html
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: EOT Conundrum
« Reply #2 on: December 01, 2015, 04:12:38 pm »
Beto, the part of this broad subject that I'm most aware of is that a very handy excuse is no longer available. The fatigue factor was useful when someone was asking me to take on some project that I sensed wasn't a good fit. It was much easier to say that I couldn't because of illness. Now I have to decline in a grown-up fashion.
     As I adapt to having increased energy, I use as my compass a quotation by Howard Thurman: "Don't ask what the world needs. Ask what makes you come alive, and go do it. Because what the world needs is people who have come alive."

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: EOT Conundrum
« Reply #3 on: December 01, 2015, 05:26:44 pm »
a bit long winded on my part and indeed a loaded subject...yea philly I remember you being a big part of that discussion.  Gnatty i feel ya on the end of excuses aspect. 

not whining here.  I just honestly feel that I must have swept a whole lot of stuff under the carpet.  I am not sure I was aware of the mindset I had going...I can't say I had a victim complex for example (course my wife might disagree).  Having hep C was sort of an illegitimate disease as far as "potentially Life threatening" maladies go...know what I mean?  Not one you talk about.  I was that energiser bunny virus...goes on and on and on... :P
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: EOT Conundrum
« Reply #4 on: December 01, 2015, 05:30:18 pm »
I'm starting to talk about hep c in the past tense...don't wanna jinx  :)
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline chino1969

  • Member
  • Posts: 117
Re: EOT Conundrum
« Reply #5 on: December 02, 2015, 11:41:44 am »
beto,
I have gone through all of the feelings you have described. You are not alone in feeling this way.  Many have been living with this disease so long they had to erect emptional barriers to cope.  Always in the back of our psyche was the fact we had a disease that was slowly eating away at a major organ required for health.  We couldn't share our feelings with those unaffected because they could not understand.  After 20, 30 or 40 years of this type of life it takes quite a bit of readjustment to get back to whatever normal is.  Take it light, don't be too hard on yourself and realize you've been given a second chance for a reason.  Many people never get that second chance so make the most of it.  Develop some positive inner qualities that can either provide a light or inspiration for another struggling.
« Last Edit: December 02, 2015, 11:43:31 am by chino1969 »

Offline beto

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  • Posts: 548
  • "no risk it, no biscuit"
Re: EOT Conundrum
« Reply #6 on: December 02, 2015, 03:06:24 pm »
Thanks Chino...good advice.  Funny I look at that post and I have to laugh at myself in one way because admittance of vulnerabilities and negativities feel strange when sharing nonchalantly.  It flies in the face of my good fortune to have the meds and see them working.  Not to mention that "I must always be positive and strong." hehe

Social media is always right there at our fingertips and our inner expressions can become public in a hurry.  The anonymity causes us to push "send" more readily.  But I am OK with sharing my down days on this forum thank god.

We all have been through the mill, some worse than others.  You have had quite a long and harrowing ordeal Chino...and I hear a "spring" in your words currently, which helps me to know that when dark moods strike, "this too will pass."

peace
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Lynn K

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  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: EOT Conundrum
« Reply #7 on: December 03, 2015, 12:05:24 am »
That evil thorn in our side but still somehow we miss it not being around in a weird way. Friends come and go but our old enemy stands every day by our side and now we feel its absence in relief and wondering how to live without the sword on Damocles hanging over our heads.

Whenever I have worked long and hard to accomplish something and finally do get it done I am happy and relieved but also a little sad and wondering what to with this new void in my day and life.

Even though Hep c was not our friend it was always there and I think maybe in some way we are mourning the loss.

I hope you guys get what I am saying I don't want the dragon back just don't know what to do with the empty place it formerly occupied in my psyche.

But more than eager and willing to find out :)
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline beto

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  • Posts: 548
  • "no risk it, no biscuit"
Re: EOT Conundrum
« Reply #8 on: December 03, 2015, 12:36:46 am »
wow lynn...well said.  Heartfelt and beautifully written
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: EOT Conundrum
« Reply #9 on: December 03, 2015, 08:35:31 am »
 Man, You guys have just summed up in a nut shell the very dark cloud that has been floating around in My pea brain for the last week or so. I like Beto am at seven & a half weeks post EOT. The feelings and thoughts can get overwhelming at times. I change My train of thought & go on about the day , but it always comes back. Nothing new to add, But damn I thought I was the lone stranger on this one. I will have to read these replies when I need to change My outlook at times!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline chino1969

  • Member
  • Posts: 117
Re: EOT Conundrum
« Reply #10 on: December 03, 2015, 11:29:34 am »
That evil thorn in our side but still somehow we miss it not being around in a weird way. Friends come and go but our old enemy stands every day by our side and now we feel its absence in relief and wondering how to live without the sword on Damocles hanging over our heads.

Whenever I have worked long and hard to accomplish something and finally do get it done I am happy and relieved but also a little sad and wondering what to with this new void in my day and life.

Even though Hep c was not our friend it was always there and I think maybe in some way we are mourning the loss.

I hope you guys get what I am saying I don't want the dragon back just don't know what to do with the empty place it formerly occupied in my psyche.

But more than eager and willing to find out :)

I get exactly what you are saying.  it's good to discuss these thoughts & feelings.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: EOT Conundrum
« Reply #11 on: December 04, 2015, 09:22:23 am »
beto, Philly, chino, Lynn, Tommy --

You've all been so eloquent in describing the fragility, insecurity, vulnerability, melancholy, etc. you've been feeling that it caused me to examine every nook and cranny of my psyche to try to figure out why I am not experiencing similar feelings. In case there's anyone else reading this thread who is feeling odd man out because of not having such feelings, please know that it might not necessarily mean that you are repressing your emotions -- your brain may simply be wired differently.

Some of my happiest childhood memories revolve around my big old second-hand desk with seven drawers, and the portable file box that held a dozen file folders. I loved keeping my projects organized. When the file box got too jam-packed, it was time to re-sort, toss what was no longer germane, and leave room to add new clippings more relevant to how my interests were evolving. The desk drawers were much more flexible containers, and at two different times during the tween-teen years, I had a delicious intuition that a new hobby would be coming my way, even though I didn't have a clue as to what it would be. I knew only that it was time to reorganize my desk so that there would be an entirely empty drawer available to receive the new interest when it began to materialize. The wait was exciting.

During this 14+-week lull between labs, I've been happily busy. If the December 23 labs come back SVR12, then that'll mean far fewer doctor's appointments in the future (more room in the file box). If not, well, then I can't cross HCV off my to-do list, but thanks to these forums, I know the drill: start with resistance testing. Death sometimes seems remote and at other times quite close, but I've experienced so many diagnoses by now that these oscillations simply don't have much impact.

Again, no disrespect meant. The world needs all the various brain wirings there are. I'm putting this out there just in case someone reading this thread was feeling weird.

Gnatty
« Last Edit: December 04, 2015, 09:24:20 am by gnatcatcher »
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: EOT Conundrum
« Reply #12 on: December 04, 2015, 12:14:41 pm »
Per usual Gnatty a wonderful and insightful post.  indeed we are all wired differently.  Funny my spell check converted "wired to "weird"  hehe.  I am sure that many folks might look at the above and think "huh?"  Nice that we can all be different.  However, I think that it includes how one "wires" themselves and how recently they have done so.  You have probably done a lot of work in that direction.

The post feelings are a loaded question.  There are so many variables and fingerprints.  I have found it fairly easy to post my emotional shifts on this forum.  I have times when my heart truly soars as well.  Finding my way home. 
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: EOT Conundrum
« Reply #13 on: December 04, 2015, 02:49:52 pm »
 Not quite able to put My finger on it. A form of unquantified PTSD? Closure? Coming to terms? Strange form of grieving? Rewiring the thought process? The thoughts are there floating around in My head, yet not quite making it to My fingertips to key. The walls have been built so as not to tumble easily, yet the feelings of fragility and being unnecessary can be overwhelming. Those around Me are used to the big strong macho person that takes charge and gets everyone into shape and headed in the right direction when things fall apart. The Rock of Gibraltar, the dependable one, the one You go to get You out of a bind. Now it seems I have done too good of a job and put Myself out of business.  The question is?? Who do I turn to when I need help???? Everyone just shrugs their shoulders and says " Everything will be all right " . No one has ever been in this situation before and all seem to be unable to think outside of the box , because neither have I!!! Having the good fortune to have received the Meds. as well as a second chance at life , I know that I must adjust to the situation. As I morph into the new mind set and way of life I seem to be some how distant and unable to handle not having some thing to fix besides Myself! No one seems to be able to grasp the change in Me. Feeling like a stranger in a strange land. Onward through the fog , to meet the sunshine on the other side. Come what may , I will still be Me. Adapt, adjust, making do with what I have. If not for the people here on the I would surely be much crazier than I am already thought to be. No matter the path I choose or the people that choose to allow Me the ability to be what comes , whether alone or with the crowd , I will make the best of My second chance regardless of the outcome. Strange that as I key this last line or two there is a lump in My throat and a tear in My Eye. 
 Here comes the Sun, Little darling------Here come the Sun, and I say----It's allright!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: EOT Conundrum
« Reply #14 on: December 04, 2015, 03:02:13 pm »
OMG Tommy...WORD.  I am just not used to the waves of brutal insecurity.  I feel silly admitting these bouts of "lost nerve".  Again this too shall pass.  A part of some process I may never understand...walking the tiger.  I love the way you express yourself Tommy...even if it may feel weird to you to do so.  ;)
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Rick369

  • Member
  • Posts: 19
Re: EOT Conundrum
« Reply #15 on: December 05, 2015, 09:35:11 pm »
Beto    Nice post, I have been in a similar state of mind lately (now 14wks EOT) and you captured my feelings exactly.             Rick

 


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