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Author Topic: LucindaPorter..........Post treatment Update please  (Read 17075 times)

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Offline Mr. Bob

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LucindaPorter..........Post treatment Update please
« on: June 24, 2015, 08:15:31 pm »
Hi,Lucinda
I am finishing up a 12 week Harvoni treatment and at week 11.
I am starting to get concerned about long term fatigue..........as a few people I know are months out and still more fatigued than before their treatment.  I get a kick out of a lot of the typical posts  " I am really fatigued, headaches, dizziness, joint pain, and vision problems...BUT  so grateful I am on Harvoni"  hehe   Is seems  we have traded the Interferon / wheelchair  for the Harvoni / cane and walker.
I don't see or hear much about your after treatment health updates from your posts  and tried to find some on your blog but it was too difficult to sift thru.  I like seeing your picture when you post...but it looks  sad and reminds me of pre treatment blues.., as I believe this picture was before your  cure? I do see more current pictures where you look vibrant an smiley..   so all that said... how was your fatigue after treatment and how did it recover..... brain fog... stiffness , vision etc etc.....  It is comforting when we see old timers like you giving advice and still around  babying us along...lol...I have been following you for a long time as a ex treatment failure person.... was waiting  and waiting  and when you went on the trials and got cured I figured if it's good enough for her I  might as well jump in... but am now wondering If I should have waited awhile longer for a shorter or better option with less possible permanent side effects.....just thinking  but to late now....I will hope and pray for the best... respectfully  Robert

Offline lporterrn

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Re: LucindaPorter..........Post treatment Update please
« Reply #1 on: June 24, 2015, 10:40:34 pm »
I feel great. (Thanks for the photo comment - I'll take it under consideration)

One thing that I ponder on is this: when older adults (over 50) take time off from activity, they have a hard time regaining strength and vitality. Studies bear this out, but we've never seen it tested in hep C patients. I'd love to see a study of individuals who aren't active (hep C and non-hep C), and compare those on treatment to those who don't have hep C but cut back on activity.

I say this because I really worked at staying active during treatment, and I worked very hard after treatment. Perhaps this is why I did well.

The other thing we have to be careful about is making generalizations. Yes, some people have a hard time, but we probably don't hear about those who are doing well, since they have no incentive to join a forum such as this, or to post.

The other thing to keep in mind is that since insurance companies and Medicaid programs are denying treatment to people in the early stages, we are likely seeing more people with cirrhosis or late stage fibrosis on treatment. People may be having a hard time because of the drugs, but if they still have cirrhosis, they are likely still going to have a hard time. Without data, it is hard to know who really is worse off because of the drugs, or who feels worse off because they expected to be feeling much better. Our minds are poor historians. We need data.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Mr. Bob

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Re: LucindaPorter..........Post treatment Update please
« Reply #2 on: June 24, 2015, 10:49:03 pm »
Hi, so you are saying you did well. What does well mean? 
Are you saying you did not have fatigue  after treatment to recover from?
That is what I am asking?   

Offline lporterrn

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Re: LucindaPorter..........Post treatment Update please
« Reply #3 on: June 24, 2015, 11:03:41 pm »
I was in a clinical trial, and thus had ribavirin's side effects to contend with. I was anemic, fatigued, had a rash, insomnia, and was irritable. It took about a month to begin to turn that around, 2 to completely turn everything around - the sleep took the longest to restore since sleep disruption is always tricky to reverse - regardless of the cause.

Does that answer your question?
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Mr. Bob

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Re: LucindaPorter..........Post treatment Update please
« Reply #4 on: June 24, 2015, 11:17:09 pm »
Hi, more detailed response....hard to read minds when people say they are well,  I know people dying from cancer and when you ask them how they are doing they say I am fine............It helps to know the battle story as the part I am interested in is how long it may take people to rebuild after the battle....I don't take pleasure in the battle but it lets me know they have been there.  And for us not to worry about the current side effects as they may not be permanent..........
and by the way the picture is great, it does show empathy/ compassion and beauty..but am I right the picture was before Harvoni...but as they say a Picture say a thousand words.....

sincerely,  Robert

Offline Mr. Bob

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Re: LucindaPorter..........Post treatment Update please
« Reply #5 on: June 24, 2015, 11:23:56 pm »
I forgot to say yes that answered my question............. for the most part..
Thank you.....

Offline lporterrn

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Re: LucindaPorter..........Post treatment Update please
« Reply #6 on: June 25, 2015, 02:17:02 pm »
You are correct about the photo
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline amocuatli

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Did you say dizzy?
« Reply #7 on: June 26, 2015, 01:31:19 pm »
I have dizziness, shortness of breath nausea and I'm hungry all the time. I finished OLYSIO/SOVALDI  August of last year. Blood tests show completely undetectable I was just yesterday informed that I have steatosis -damn! Lifestyle changes in order...
But still no answer why am I dizzy? ::)

Offline lporterrn

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Re: LucindaPorter..........Post treatment Update please
« Reply #8 on: June 26, 2015, 02:24:26 pm »
Have you gone to your regular doctor? These may be non-liver-related
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Mr. Bob

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Re: LucindaPorter..........Post treatment Update please
« Reply #9 on: June 26, 2015, 05:27:57 pm »
amocuatli
Did you have these issues prior to treatment................

RJ

Offline amocuatli

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Re: LucindaPorter..........Post treatment Update please
« Reply #10 on: June 26, 2015, 08:30:19 pm »
I had the nausea night sweats but never never dizzy. Yes I'm seeing my doctor they thought it may be due to polycythemia blood test don't bear that out...
Dizzyness is new and not a component of anything we've been looking attempt only thing they have found so far is the high hematocrit hemoglobin and steatosisim not dizzy all the time but when it hits it almost knocks me off my feet one time I was just crossing the road walking with my bicycle and I had to stop in the middle of the road I was so afraid a car would come I was willing my head to stop moving  and I was afraid I was going to fall on my bicycle. Then it went away but I haven't ridden my bike since that day

Offline lporterrn

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Re: LucindaPorter..........Post treatment Update please
« Reply #11 on: June 26, 2015, 08:33:56 pm »
Yes, mostly brain fog, sleep problems and flu-like symptoms. I had horrendous issues for the first 10 years following contraction of hep C - terrible joint and muscle aches, intense fatigue, etc, but I focused on diet, exercise, sleep, and meditation, and these issues faded away. Don't know if they were hep C related or not - perhaps a bit of both.

(oops - saw that you weren't asking me) Perhaps the brain fog isn't gone  :)
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Mr. Bob

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Re: LucindaPorter..........Post treatment Update please
« Reply #12 on: June 27, 2015, 10:29:53 am »
Hi,  I am sorry  if anyone took this all wrong  and where it is going...
My only intention was to find out how Lucina's treatment was during, and after and not to sugar coat anything  . I was not sure if she was involved with any  pharmaceutical companies or not. Which I now know she was not if I understand correctly...... I understand people have to make a living ..  I did not have the time or  brain energy to read all her books and go back and sort thru posts..... I am fatigued from the medicine and sometimes  "irritable" needless to say...... so I apologize...  I was not accusing others of anything only asking Lucinda's experience.. Because I am still concerned about any long term issues.... that no one seems to have the answer for YET.       sincerely Robert....
11 weeks Harvoni     lets get back to   Lucinda Post treatment.....  he he
This would all be  done if I could just have a cup of coffee with her...... lol and give her a HUG

Offline lporterrn

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Re: LucindaPorter..........Post treatment Update please
« Reply #13 on: June 27, 2015, 10:33:27 am »
Thanks Robert - I was just moving the posts to "Off Topic" when you weighed in - I appreciate your apology, and this looks like a great place to leave this conversation. For those who want to connect Robert's last comments to the topic he started, go to http://forums.hepmag.com/index.php?topic=2959.msg24160#msg24160 I don't know how to move this comment to the other board, but didn't want Robert's words to seem out of context to readers.
« Last Edit: June 27, 2015, 02:06:30 pm by lporterrn »
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

 


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