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Author Topic: Week 5 Update  (Read 13108 times)

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Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Week 5 Update
« on: November 12, 2014, 11:55:12 am »
I am almost at 5 weeks on S/0 and just left the doctors office. I had a full list of questions for him and got some good news and some confusing news.

Today I have a fever, not sure why but I do so need to take it easy.

Today I am Undetected, that means that the S/O is working as expected and I should be thrilled but feel horrible so hard to be thrilled

Today my Ammonia levels are very very high, he is prescribing something for me and hopes that helps with my brain fog

Today he isn't sure if we should ask for 24 weeks because I am having such a hard time but we aren't sure what's causing all the issues so for now we will stay at 12 weeks and cross that bridge as we get closer to 9 weeks.

Today AST ALT and Bili all are normal - that is excellent news

Today the Ultrasound results can back with nothing to report, no ascities, more excellent news.

Today I am grateful but I feel really yucky and wonder when I am going to feel better...

~Mel~

~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Doluska

  • Member
  • Posts: 86
Re: Week 5 Update
« Reply #1 on: November 12, 2014, 03:52:19 pm »
Dear Mel! I am so glad for your results! This is the main thing! You did it! I am scared of 4 weeks result! And You did it! We are all feeling not so grate. My blood pressure is 200/90, nausea, anxiety and depression, you name it! Probably it is this damn Ribaverin... but I must remind to myself that we all so lucky to get this treatment, chance for life and cure! Wait a little bit, and it will change to better. You should celebrate today!!! 4 weeks undetected - it means the biggest chance of cure! Good luck! D

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Week 5 Update
« Reply #2 on: November 12, 2014, 04:19:57 pm »
Thanks so much Doluska,

I am trying so hard to be happy and positive but I feel so yucky that it's raining on my UD parade. I am beyond grateful that the S/O is working. I just need to focus on that right? My BP was decent today, 132/85 so no big complaint there. Wondering if my elevated ammonia level is what's causing this total yuck I feel inside. It's so weird because all other numbers look good but the ammonia is really high....

Stay tuned, pharmacy just called and I can pick it up. Now need to get the energy to go and get it.

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Rubye

  • Member
  • Posts: 130
Re: Week 5 Update
« Reply #3 on: November 12, 2014, 06:33:06 pm »
I'm starting week 8 on Sovaldi and Olysio today and a couple of weeks ago I remember feeling absolutely terrible and was thinking of quitting because in general I felt like I had the flu - exhausted, very nauseaous, and disoriented. I went to my pcp for something else and my BP was 180/90. I finally was able to get some Zofran for the nausea and then started feeling better. I felt good for about a week and now am feeling crummy again. Last night I was in bed with aching and chills for a couple of hours and then felt better.

However, at week 4, I was undetected and had excellent labs, better than they have been in 40 years since I was first diagnosed with non-A and non-B. It seems like everyone else on S/O is doing great with no side effects so it is good for me to hear someone else is having a hard time. I'm sorry it is you and wish you weren't having a hard time but I suppose it is good to know I'm not so alone in this. My prescribing doctor is never available but I am seeing another Hep doctor on Monday who I am hope can give me some reassurance.

Oh btw, I have not had my ammonia level checked. I also have cirrhosis but since my labs are all so good, I cannot figure out why I am having such a hard time if my liver and kidneys are fine.

Offline Mike

  • Member
  • Posts: 999
Re: Week 5 Update
« Reply #4 on: November 12, 2014, 06:39:35 pm »
Congrats, Mel!! ♪♫♪♫

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Week 5 Update
« Reply #5 on: November 12, 2014, 06:40:16 pm »
Hi Rubye,

Sorry you are having a crappy time but this infection and the toll it takes on our bodies isn't a joke. My numbers seem all good except ammonia but I feel awful. I'm in no way blaming the treatment, felt like crap before I started. This is a marathon that I'm in and ridding my body of the infection is step one, you'd have to kill me to get me to stop the S/O not matter how bad I feel. What's 12 weeks compared to what other have been through for 48 weeks, this is a walk in the park!

Just keep on going, find doctors who will help and support you. We will all beat this beast and then we can start to really get better.
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Week 5 Update
« Reply #6 on: November 12, 2014, 06:41:47 pm »
Congrats, Mel!! ♪♫♪♫

Best wishes, Mike

Thanks so much Mike,,,, walking the walk a day at a time! 
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Mike

  • Member
  • Posts: 999
Re: Week 5 Update
« Reply #7 on: November 12, 2014, 07:05:30 pm »
That's what I did. And by the time I knew it, I was taking my last pill (I actually got on a bent knee and kissed that pill, before chugging it down with a big glass of water).

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Doluska

  • Member
  • Posts: 86
Re: Week 5 Update
« Reply #8 on: November 12, 2014, 07:06:58 pm »
Hi Ruby! You are not alone with the side effects. My BP is 180/90, at best 150/90. I am heading tomorrow to my cardiologist and take his advice. I am getting in addition Ribaverin, and this is killer! But with all that - I will be happiest person in the world if I' d be UD on week 4, I am on week 3 now and scared to death to be unresponsive. Be strong! You won half of the battle. D

Offline mikeyman

  • Member
  • Posts: 63
Re: Week 5 Update
« Reply #9 on: November 12, 2014, 10:47:37 pm »
Congrats Mel ! Hang tough girl, it's working!
Blessings
Mikey

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Week 5 Update
« Reply #10 on: November 12, 2014, 11:45:50 pm »
Thanks Mikey, it is working and that's amazing isn't it? I am a walking miracle today!

Just so totally confused by what my body is doing and why it is doing it because the numbers and the tests don't match the lethargy or the swelling or the lower back pain. I am really wondering if the blood ammonia levels being so high are what's causing the major brain fog I have. For the first time in my life I lose words in the middle of a sentence, that is insane to me.

I wish there was a way to make the symptoms match the tests and they just don't line up at all no matter how many times they run them....

~Mel~ 
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Rubye

  • Member
  • Posts: 130
Re: Week 5 Update
« Reply #11 on: November 13, 2014, 12:19:03 am »
Mel, you just pointed out the problem. Why do we have these side effects, btw I also have the lower back pain, when our labs our fine and we show undetected? Especially when so many other people say they have more energy and feel great.

The ammonia can definitely cause HE but I don't think it causes physical problems.

It makes me feel like my sides are psychosomatic but I've never been that way before. Nor, do I feel a lot of emotional stress.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Week 5 Update
« Reply #12 on: November 13, 2014, 07:08:28 am »
Rubye,

I really wish I knew the answer, I am just pushing through and refuse to give up on the S/O because it is actually killing the beast. I only have 7 weeks and 2 days left, I can do this. No matter how bad I have felt these past few weeks I never once considered stopping the treatment and when I my ID Doc mentioned it I about bit his head off!

Unless there is a true medical reason to stop it, I will not stop because if I do then I have to just start all over with something else my insane body may not like even more.

My symptoms are not psychosomatic, you can't make up edema. I have the pictures to prove it.  I still believe my body is waging a war inside, it doesn't have to show in a blood test for me to know that I am in a battle, I am feeling the battle every day. We are fighting a very, very, intense strong infection and for some reason our bodies react to it differently than others.

Whatever it takes because what doesn't kill me will make me stronger! (a little Jersey girl attitude)

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline zeena

  • Member
  • Posts: 114
Re: Week 5 Update
« Reply #13 on: November 13, 2014, 08:22:48 am »
hi everyone!
  this thread is enlightening. I feel validated hearing others also have good labs but are struggling.I am a real fighter, and usually push myself beyond my comfort zone.My hardest area is telling coworkers i am compromised by these meds, need some time off, look healthy, but dont get into details. not being able to be specific , as in breast cancer, etc...i want to be transparent, but fear and prejudice keep me silent.these extra couple of days a week on fmla,, will give me time to rest and stop beating myself up.my most sober time since pregnancy, and when i speak , I seem high.this is a busy time for my business and i want to get back to work full time as soon as possible.thanks for letting me know i am not acting like a baby, when my doc looks at me and says my labs look good, and i tell him its like i have alzeimers, sometimes i dont know how to exit on the highway, or anyones name or definatly how to use the register, so i retreat inside and get myself reved up for my days at work, to be my best and deal with the sideway glances from my coworkers,the worst thing is, management have lied to me lately, so i cant go and actively seek their advice .have a safe and strong day to all of you.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Week 5 Update
« Reply #14 on: November 13, 2014, 09:05:11 am »
Hi Zeena,

You are able to get FMLA to allow you to work three days a week instead of 5? I didn't even know that was a possibility. I guess every employer is different. I have been working from home myself. Fortunately I have a career that allows me to do what I do anywhere I have internet access and my Company has chosen to allow me to work from home without too much trouble.

I agree with you about the stigma, this is a hard one for me because I am such an honest open person it's weird for me to have secrets. It's not like I am ashamed but the public opinion of Hep C needs to change.

The only thing I can tell you is that my Blood Ammonia level is high and that can possibly cause the "fog" I find myself in. I only started the medication to lower the ammonia level last night so I doubt I will see any difference, if at all, for a few days but I will let you know. I forget words here and there but it's a little scary that you don't know how to exit the highway. Are you sure you are ok to drive yourself right now? Your life is more important than anything Zeena so please be very careful. do you have to work for financial reasons right now? If not maybe you can take some more time off and just focus on your health.

~Mel~
« Last Edit: November 13, 2014, 09:07:00 am by BattleTheBeast »
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

 


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