Author Topic: Staring at S/O bottles and start tomorrow (Read 35161 times)

BattleTheBeast · « **on:** October 10, 2014, 08:59:24 pm »

Hi all, newbie here. Recently diagnosed after months of tests and feeling horrible. I'm a mid-50 Grandma raising a special needs teen grandchild alone. Don't know how long I've had it; probably many many years. Was married to an addict when I was a kid, had no clue and it didn't last long. Anyway I'm where I am, I've got this beast inside me, feel crappy, achy, lethargic, just all around crappy. Working full time and some days don't know how. Now I have the combo and starting tomorrow am. Blessed to have it, scared to death, I'm 1a, load at 8 mill. Worn out mentally and trying to be strong once again on this journey...

jberlin · « **Reply #1 on:** October 10, 2014, 09:20:21 pm »

Welcome! Always sorry anyone is going through this, but so happy you are being treated at a time when treatment is so successful and much easier to tolerate. Please update us from time to time on how you are doing, and I can't wait to hear 3 months post treatment that you are still undetectable! Time will pass really quickly. Get yourself well! Best wishes, jack

badbradley · « **Reply #2 on:** October 10, 2014, 10:49:21 pm »

Hi Battle TheBeast -
I like the name. Sounds like your set to kick the crap out of this hep c, - Nice attitude!! Once you start swallowing these meds it doesn't take long before it becomes habit...like taking vitamins. I was nervous the night before too.
We are very fortunate to have this treatment in our hands and I hope all goes well with you. Almost finished w/ wk. 8 - undetected at wk.4; 4 more wks. to go.
Keep posting your progress. Best of luck.
badbradley

BattleTheBeast · « **Reply #3 on:** October 11, 2014, 08:37:34 am »

Thanks for the welcome and encouragement. Trying to figure out what I can make myself eat and take my first dose... Here goes

jberlin · « **Reply #4 on:** October 11, 2014, 09:16:19 am »

Countdown to the cure! Congrats on taking the 1st step, of what I hope is a quick and easy journey. Do report back how you feel, side-effects, and anything that helped you cope. Also make sure to keep hydrated and get plenty of rest. Best wishes, jack

BattleTheBeast · « **Reply #5 on:** October 11, 2014, 06:00:55 pm »

Thanks Jack,

Day 1: Spent most of the rainy day just watching TV, napping (no sleep again last night), and trying to make myself eat. No difference in my current symptoms with the Meds onboard today. Managed a yogurt, 3 bottles of water, and a mango fruitbar so far. Nothing tastes good these days but fruit, hope that changes soon!

I'll check back in if/when there are any updates in symptoms, viral load, etc.

I will beat this beast and have a life again!

Mel

jberlin · « **Reply #6 on:** October 11, 2014, 09:53:30 pm »

Go Mel go! I am so happy to share this time with you and so many others getting rid of this awful beast! We are here for support, and your posts will also support others as well. Keep posting! Best wishes, jack

HepC53 · « **Reply #7 on:** October 11, 2014, 10:55:59 pm »

Hey Tess, happy to hear your doing well. Please post when you get clarification on what some of your diagnosis means. I just ordered hard copy of all my labs. Following he lead of a few others I do want more info.
Welcome to the Beast, you must eat so you can take the meds and get vitamins in you. Despite my efforts for clean living some days ice cream is all that feels good on my stomach so I eat what I want and tolerate. Exercise is my saving grace oh and those vitamins. Even so, they just lowered mg meds because my hemoglobin wasn't good, I guess. Well, I've had yellow eyes, anemia so all I know is I do feel better with the lower dose. Still getting dizzy a lot but my fatigue isn't as severe. One week left on the meds

BattleTheBeast · « **Reply #8 on:** October 13, 2014, 03:41:22 am »

Day 2 over; headache earlier that faded away. I drank a ton of water today and out of nowhere I was so hungry; I haven't been hungry in months! I am still hungry at 3:25 am but holding off. Still very achy today, not sleeping well at all. Night before I started about 3 hours because I was nervous,
Night 1 -10/11 about 3-4 hours but kept waking, very restless sleep, achy,
10/12/14 - Meds in am, 24 hours since previous dose. Minor headache, a little nausea, but then about 6 hours later I am so hungry, cooked something with a ton of veggies, ate a decent meal for the first time in months, two hours later, still hungry, ate some more, caved in to an ice cream crave! Now it's 3:35 am and I'm still awake, body achy but still hungry! Hoping I get some sleep or work is going to be brutal.
Observation is that when the teenager starts arguing and stressing me symptoms kick up so symptoms may be more due to stress than Meds. I'm going to try and sleep but feel wide awake. I will keep updating as I go along so maybe my story will help someone else as they progress through treatment to slay this beast. Happy Columbus Day to all!
~Mel~

jberlin · « **Reply #9 on:** October 13, 2014, 09:03:24 am »

Mel,
Thanks for the detail, it is really helpful to get play-by-play I think, as meds are changing rapidly, and others may learn from your experience, so keep us updated. It is my hope that after a few days your body will adjust and you will tolerate the meds better and get back to a better rhythm, but we will let you inform us. Keep going and keep reporting! -jack

HepC53 · « **Reply #10 on:** October 13, 2014, 09:09:48 am »

Hi Mel-The Beast, the meds do make your joints hurt, Tylenol is good, I've been living on antihistamines, Benadryl at night and lorrtadine in the day yet my body itches all the time. Ive used melatonin to help me sleep, still wake up at all hours. The "RIBA - Rage" and lack of sleep will definitely make you want to kill a mouthy teen. I ended up getting an anti-Depressant because I was a bomb ticking. When I wasn't taking the antidepressant I must say that my sales were peaking and I loved the high problem is I might have committed hairy Cary if I didn't do something. Now I am kind if just going in late, leaving early and 2 minutes before I'd normally be at work I'm still in my Jammie's drinking coffee and typing to you on my phone. Take your meds as perscribed and if you need some leveling out call your doc and take something. I didn't want to either but this Friday I will take my last doses and I'm glad I've forged through. Oh Willie, I saw Cher & Pat Benetar this year in Indy. I've always been a fan, met Pat personally once when I worked at an Oregon in Marketing. Anyway, Cher skipped across the stage without a single jiggle in her ass. I guess all her clean living paid off. I have to say though she was so much prettier before she started cutting on her face.

BattleTheBeast · « **Reply #11 on:** October 13, 2014, 09:17:59 am »

Just on s/o combo here; joints hurting before started and seems like the less sleep I get the more I hurt. Lower back aches if I stand too long, blurry vision, over all hot mess with a mouthy sloppy teenage boy with ADHD, ODD and somewhat bipolar. Today he won the battle about not going to school; first time I caved this year so far and it's an every morning fight. Just trying to take it a day at a time and know at least now there is a path and hopefully a light at the end of 2014. So happy to have found all of you, nice to have someone to talk to who isn't judging so thank you everyone

HepC53 · « **Reply #12 on:** October 13, 2014, 10:58:28 am »

My daughter does on line school, she is ADD and I'm trying to work so she ends up unsupervised but my office is close to home so I pop in for lunch etc. She's been doing K12.com and even though I constantly have to refocus her I think it works well with attention deficit disorders simply because if she feels that she can only do English one day or Matt the next day she can just do that one subject for several lessons and then when she loses her focus she can jump to the next thing. Now back to the HepC, I have been on the Solvadi/Ribavarin and it's my last week! The treatment makes me feel like crap but my 3.2mllion viral load and liver enzymes were so high and I hadn't been drinking often because months earlier I learned
I had Colitis and ended up with my first 911 ride of my life. I'm 53, had hair down to my waist, I like to garden so a braid or pony seemed to be the easiest. Anyway my hair was falling out my hearing was going my vision was blurred and I just kept thinking that all of this was because I was going downhill and over 50. The worst part was mentally I was in some kind of fog I couldn't finish my sentences my daughter was trying to coax my words out of me and secretly I thought I was getting dementia or Alzeimers. So now Three months later I have a short pixie haircut I've been exercising doing Zumba, my kid even comes with me, I think that really helps move the toxins out too. My vision has improved although I still need glasses, moments of clarity and my ability to communicate effectively have increased. And when I get done with these meds I'm going to focus on eating better too, right now if my stomach needs ice cream that's what I give it. I was sober for 20 years before and then for the last six not so much but at least it wasn't doing drugs. So I'm coming to terms with the fact that I'm going to have to lead a different lifestyle and that sucks since I'm married to an Italian master chef and we definitely enjoy red wine. You are doing everything right taking it one data time right now I'm just looking for the light hoping the after effects of the meds arent too awful. I'm glad you found this site.

lporterrn · « **Reply #13 on:** October 13, 2014, 12:07:00 pm »

HepC53 - you brought the biggest smile to my face. Thank you!

BattleTheBeast · « **Reply #14 on:** October 16, 2014, 11:41:43 pm »

Hi Everyone -

First off, HepC53, thanks for sharing! Everyone's thoughts and stories are helping me on my journey more than you know!

End of Day 6 report:

1. Sleep is a huge issue , had lack of sleep before starting and way way worse. Even more troubling is that the more exhausted I get the worse the symptoms below get. My body doesn't have strength to fight this battle without sleep however I can't sleep for more than 1-2 hours at a stretch and that's if I am lucky. I have a concern now that if I really go into a deep sleep it's going to last for 2 days and no one to deal with teenager issues. I'd love to take a benedryl for itch but that always knocks me out - maybe this weekend I will cave and take one.
2. Skin issues, had before starting, I get these random itchy sores that pop up, mostly on my upper arms elbows and above, sometimes on upper back. Seemed to flare on and off, my doctor before I was diagnosed along with a dermatologist said it was Psoriasis, I think it's that stupid beast inside that my body is battling against. So now on top of being in a flare with my little itch spots my entire body is incredibly itchy no additional rash and it comes and goes
3. Appetite: issue before meds was no appetite at all. At this point, am getting hungry in spurts and pushing myself to eat healthy as possible but at least eat
4. Bloating - didn't notice it too much before but now feel so bloating like the giant bottle of water I guzzle all day long
5. Lower body ache, wow this one is sucks, My legs just ache pretty badly and on and off lower back pain in the kidney area, pretty intense and need to sit when it hits. Pre starting meds - had this but only when super tired. Post meds - all the time BUT i am barely getting any sleep.
6. Hair falling out - no major changes here
7. Nausea - there for a few hours in the morning, seems to be better if I have oatmeal in the am. its hard for me to get down but it is heavy so I don't need a ton to coat my insides before the meds. Seems to be the easiest for me to get myself to eat in the am so I am. I have never been an early morning eater.
8. Constipation - for years I had IBS, the past 6 months is constipation. Going to find the mild stuff to take and see if that helps because it could be causing the kidney area pain and the bloat. No normally natural food items have helped so far, time to take action.

So a week from today I will see my ID doctor and probably get a blood test. I will see where the current symptoms stand and take it from there. I don't think anything going on is unexpected and I hope it's all intensified because I am beating the crap our of this beast with S/O help.

Question for everyone: how far along in your treatment did you start to feel better?[/font]

HepC53 · « **Reply #15 on:** October 17, 2014, 08:07:39 am »

Thanks for the update Beast! I remember the first days I could barely walk around the block. I haven't slept more than a few hours at a time for years. perhaps your could try Zyrtec or the generic for itching, i do it all but I've been seeing an allergist since we moved to IN 3 years ago. I also take clear lax/MiraLAX daily for the IBS/Colitis, "what a drag it is getting old." LOL. Today is my last day of meds

BattleTheBeast · « **Reply #16 on:** October 17, 2014, 10:17:15 am »

HepC, that is so exciting to have your last day today, today is day 7 for me. Regarding sleep, honestly I could handle getting a few hours but it's been a week, and my body is really freaking out due to being so tired but yet I still can't sleep for more than 1-2 hours then I am awake. I just needed to make it to through work today and then I will cave and take a Benedryl after I drink a gallon of water

When do you go back for your next blood work?

~Mel~

Please call me Mel if you don't mind, the User name refers to this nasty thing inside me that I am battling like all of you! Still too paranoid to have my real name out there on the WWW talking about Hep C (yes I am a chicken)

lporterrn · « **Reply #17 on:** October 17, 2014, 11:04:46 am »

Mel - I am not sure why taking benadryl is considered caving - it is safe, and not sleeping sufficient hours is unsafe. These are extraordinary times, and may require extraordinary interventions. I relied on Rx hydroxyzine (Atarax) during my treatment - helped with sleep, rash, and anxiety. But, I started at very low doses, because if I get groggy, I am the kind of person who won't touch the med again that made me groggy. (Yes, I know this irrational, but I don't like taking drugs unless there is a clear benefit.)

Hope you sleep well tonight.

fredder · « **Reply #18 on:** October 17, 2014, 01:52:52 pm »

Today is day 2 for me on S/O treatment and No real side effects to speak of yet. So far so good. Hope your problems subside and you can get some sleep. and you v

badbradley · « **Reply #19 on:** October 18, 2014, 11:38:22 am »

Hi Mel, Had same sleep issues from start of treatment. Gradually improved wks. 2 - 4. I'm sleeping about 6 hrs. now. I turn into Mr. Hyde about 3 - 6 hrs. after dose. Lack of sleep heightened that personality. 9 hrs.- back to Dr. Jeckyl! Hope your symptoms improve as time goes on. Battle on!
Bad Brad

BattleTheBeast · « **Reply #20 on:** October 20, 2014, 10:54:53 am »

Hi all,

Crazy rough weekend for me. Exhaustion took over and I went into sleep coma almost. Got up a few times to hydrate, take Meds and drag myself to restroom. Last night back to 3 hours of sleep. I'm fighting a ton of lower back pain that goes down legs. Not too sure except maybe my body is in a huge battle and this is how it's going to be until we can get the upper hand on this beast. I just have felt so bad for the last few months and I'm exhausted trying to work full time and function when I just want to crawl in a hole.

Day 10 Meds on board; nothing new and exciting to report this morning. Normal nausea snd body aches.

bwelsh · « **Reply #21 on:** October 20, 2014, 11:30:43 am »

Please be careful on this medicine. My Mother was so sick 6 weeks into the treatment, we just assumed it was the side affects and she would get better after the treatment ended. She did not.

Please see your doctor. I see that some people are responding well to this medicine, and some are not. For those that are not, please be so careful. My mother trusted the doctors and trusted the medicine, but it compromised her system so she never got better and died.

Please be so careful. Send me a private message if you would like to discuss more with me about this drug and the affects that it had on my mother who has since passed due to this horrible drug.

BattleTheBeast · « **Reply #22 on:** October 20, 2014, 01:39:14 pm »

So very sorry you lost your Mom bwelsh.

While I appreciate your feedback and take everything people post into consideration I am in charge of my medical situation. I have taken full ownership of what is going on with my body both before starting S/O and now during the treatment. I have a team of specialists who did not know each other before working with me to help me along the way. I am fortunate enough to have health insurance coverage that allows me to get multiple opinions and specialists engaged as I deem necessary. I am working with world class specialists in the ID field along with a couple other amazing physicians. Because I was dealing with another chronic issue before being diagnosed I am very adept at reading, researching and understanding my condition, my test results and my medications. I am in charge of me and I question anything I am not comfortable with until I am or we find an alternate path. I am not standing idly by and just taking these very strong antiviral medications without researching them myself. I can pick up the phone day or night and call one of my amazing doctors for help if I need to. They are all working together and I have more bloodwork and a checkup later this week. If I feel so bad that I can't wait that long then I will pick up the phone and go sooner, if I feel so bad that I need to get to a hospital for help then I will do that.

I appreciate your concern and would advise anyone who is going to take newly approved medications to do their own research, figure out what you are ok with. Don't blindly go into anything without reading every piece of paper you can find and work with your doctors to figure out the best path for you.

My symptoms are not new ones due to the treatment. My symptoms are not classic Hep C symptoms but I have been scanned from head to toe over the last 5 months, not to mention biopsies and blood work and more blood work. When I am not sleeping well, I feel worse, doesn't everyone? I just don't want to medicate myself to sleep and I prefer to stay away from things that make me incoherent. Perhaps that's silly on my part but that's me. So I am sure if I wanted I could take some other meds that might help a little but I am choosing to fight wide awake for now. I have responsibilities and need to function the best I can.

Again, I am truly sorry for your loss and hope that this makes others take ownership into their treatments and do what's best for them.

BattleTheBeast · « **Reply #23 on:** October 23, 2014, 04:34:52 am »

Day 13: I'm having a horrendous time with the itching. When I do finally fall asleep it's the itching that wakes me. Going to ID doc today so hope to get something for it to use as needed. Benedryl is not a good medication for me so hoping for another option. Before S/O I was about 8 Mill, 1a, and stage 4 cirrhosis. Just diagnosed and its probably been in my body for over 30 years. Will update on progress soon.

~Mel~

HepC53 · « **Reply #24 on:** October 23, 2014, 07:42:42 am »

Hi Mel, sorry your having such an Itch of a time. I'm glad you're taking the meds, it'll be worth it. My post treatment appointment went pretty well, still undetected. My Viral load was 3.2mllion and by the end if the first month it was considered undetected. Doc said in a few weeks I will be brimming with energy. I already feel better than I have in years. Thoughts are still mentally disjointed at times, still itchy but less. I guess we'll know more at labs in 2 more weeks, then at 12 and again at 24. Please know I am thinking of you, sending you strength to get through this. By the way my name is Patsy but there is another lady with the same name. Blessings.

BattleTheBeast · « **Reply #25 on:** October 23, 2014, 10:29:43 pm »

Hi Patsy, thanks for your response! My day 13 was productive; I actually left the house instead of working from home all day and never breathing the air outside. It's weird not to care what the weather. My awesome dr and I talked about how I'm feeling and he started me on Atarax, he said if it's not better or gets worse with the next two weeks he is moving me to Harvoni. He wants me sleeping well to help allow my body to fight better so itching has to get until control. Bloodwork was done as well and will here early next week the current numbers. That's about all for now; going to get into going to sleep at 11 PM mode.

Together we all are stronger than we are alone and I've found it so helpful to have this forum to share my journey with, for me the emotional support and release is priceless. thank you Moderators and Admins.

~Mel~

jberlin · « **Reply #26 on:** October 23, 2014, 11:22:16 pm »

Mel,

All I can say is thanks... Your posts are so helpful, and should inspire many readers to understand while not easy or fun, treatment is manageable and beats the alternative. I am waiting to hear your treatment tolerance improves, or at least that is my hope. Also, all should note the good communication between Mel and Doctor, that is really important. In my treatment case at LifeLink, my PA responded to questions quickly, and was so very helpful. Make sure medical staff are on your team and available for questions. They, plus your friends & family, and this forum are all helpful support during treatment.
Best wishes Mel! When will we see your first viral load blood work, 2 weeks or 4 weeks?
jack

BattleTheBeast · « **Reply #27 on:** October 24, 2014, 08:24:09 am »

Hi Jack,

Blood draw taken yesterday; results expected next Tuesday or Wednesday so actually I'm at day 13 for blood draw. Going back again in 2 weeks or sooner if needed.

Today is Day 14 and I slept last night thanks to the Atarax controlling the itch. Still feeling very groggy but trying to move. Have to work so ita not an option. Hope that the itch stays under control tonight and I'll sleep for 16 hours if I can. Lots of deep sleep time missed that I think will help me fight this. Right now just grateful to have slept all night and working on waking up enough to eat something so I can take medication. Will add more later if anything changes.

~Mel~

2 weeks down, only 10 to go

BattleTheBeast · « **Reply #28 on:** October 27, 2014, 08:55:10 am »

Lucky Day 17: So it's day 17 down the hatch. I had a tough weekend and spent most of it sleeping. The Atarax I was given to help with the Olysio itch worked but it worked so well it knocked me out big time. It was nice to get straight sleep which I desperately needed but boy was it hard to get moving again. So instead of taking the dosage as prescribed I have chosen to cut it in 1/2 and only take before bed. That seemed to work better for me last night and although I was up all night it wasn't because of the itch, it was because I just sleep almost 2-1/2 days non-stop. Today or tomorrow I expect my week 2 results and will also be very interested in my Bilirubin level and will compare it with my previous tests. My doctor has already mentioned switching me to Harvoni if we can't get this itch under control but I would sure hate to stop and have to start from the beginning. So I am choosing to call this lucky day 17 and hoping for the best on all fronts. Keeping my spirits up, drinking water like crazy to make up for those sleep days and hoping my aches start to go away along with that fog that needs to be lifted.

I hope you all have a happy day today and you are on your way to demolishing this nasty beast we are battling.

~Mel~

lporterrn · « **Reply #29 on:** October 27, 2014, 10:42:22 am »

Mel - In addition to cutting the atarax in half, the other thing that helped me was taking it early in the evening, rather than just at bedtime.

I assume you are on a 25 mg atarax?

BattleTheBeast · « **Reply #30 on:** October 27, 2014, 12:16:17 pm »

Yes I have the 25 mg but the doctor told me to take 50 mg every 8 hours, I would be a zombie if I did that! I am taking it around 9 PM once things settle with the grandson. It's not a good thing for me if I fall asleep and he wakes me up 30 minutes later. Usually when that happens I am up all night, not good

BattleTheBeast · « **Reply #31 on:** October 27, 2014, 05:53:45 pm »

Hi Everyone,
I just realized that I have been suffering from pretty intense indigestion since I started my treatment, nothing that Prilosec can't manage but I am curious if anyone else has had this challenge as well. Also my taste buds seem to be way off, nothing really tastes good right now and I seem to favor an icy fruit smoothie or natural fruit bar over anything else.

Anyway just curious and thought I would add this to the thread. I am sure this will be HUGE by the time I get through the treatment. Seems like writing is a way for me to get out all this stuff cooped up in me! It's so funny because I would never share all of this in person with anyone except my very very closest 2 friends and maybe my sister but I can get on here and just type away! Please forgive me if I make you crazy with my rambling!Today is neurotic day waiting to get two week results, still waiting; maybe tomorrow I will get some good news.

Thank you all so much for listening to this crazy girl and keeping me grounded.

~Mel~

lporterrn · « **Reply #32 on:** October 27, 2014, 07:26:14 pm »

Hi Mel,
Just using your post to remind people not to take a medication or herb without clearing it with their docs and pharmacists. Prilosec is OK, but other drugs can be a problem. Here is a resource: http://www.hep-druginteractions.org/
Thanks for giving me an opportunity to say this.

Here is something I hope will help you Mel: http://www.hep-druginteractions.org/

sunrise · « **Reply #33 on:** October 27, 2014, 08:43:03 pm »

Hi Mel
I am on day 29 of S/O treatment. Just started my 2nd bottle. I hear ya when you say you were scares just before you startes. I actually got on my knees and prayed the evening I started. I was at my aon and his girlfriend's home. They prayed right along with me. I have been taking 5mg. of ambien since my diagnosis in June, as I was walming around in a living nightmare and couldn't sleep. It really worked. As for the itching, im sorry to hear that you had so much. I have occasional pricklies on my skin, but nothing a good natural lotion doesnt cure. Best wishes on your recovery. I got my 1st quantitative test today, and am very anxious to see whats up. I started at 5 million so we shall see. Keep up the good fight Mel! We are in your corner! Sunrise♥

willie g · « **Reply #34 on:** October 28, 2014, 01:23:01 am »

HI SUNRISE, I was wondering where you were at . I figured you were on day 20 something. good for you and its real nice to hear from you ''just'' willie g

willie g · « **Reply #35 on:** October 28, 2014, 01:36:06 am »

battle the beast,, oh man as you mentioned about heartburn I had it previously due to other throat related issues,but when I started treatment it went to a whole different level,, I really had to be careful slouching in bed eating. I was doing a lot of slouching. my med for heartburn is a strange name but its like nexium which I use to take before treatment. now that it has been a couple of weeks off of treatment it seems to be getting back to that old normal heartburn. I too never shared much in life but this forum took me to a whole different level. it has been good but I see now as an old gentleman told me once ''Willie you need to harness your strength''.boy have I lately seen what he meant. you keep sharing though because you help me. take care and don't do any SHOTS of jalapenos,,''just''willie g

sunrise · « **Reply #36 on:** October 28, 2014, 01:59:20 am »

Hey Willie!
Hows the post treatment going? Hope still UD. Yes I have indigestion in the afternoon. Think its due to esophagus and acid reflux.. I just take my ambien in evening and it goes away. I stay away from PPIs as they alter my stomach acid pumps, and I dont want that. I want to keep it as organic as I can. Get my test results for vl next week Willie! 4 week one I took today. My Birthday.. glad to see you here. Mel sure can use our support, as she is figuring it all out. You go girl!!! Just know we are so blessed that we are able to be cured without horrible side effects!!!!

sunrise · « **Reply #37 on:** October 28, 2014, 02:09:26 am »

Oh and hi Lucinda!
Hope you are well and getting ready for Halloween muaah! Thank you again for all your support and kind words. I cannot believe I am on my 2nd of 3 legs of my treatment! So far so good. Only crimp in my style is I have a 3rd followup with mri on left side. 2 mammograms and ultrasound not conclusive. They just cant see this one spot. So far no abnormal tissue, so they need a contrast. My son says its protocol, but Im still stressing. Have it on 31st. Wish me luck...I wish everyone here a full recovery. UD forever!!!! Much Love

BattleTheBeast · « **Reply #38 on:** October 28, 2014, 03:07:32 am »

Lucinda, Willie, Sunrise,

Good morning, well it's actually 2:50 AM right now, day 2 no sleep only itching. It makes me crazy well crazier that it's either I can't sleep or I can stay awake. My body is definitely battling this beast!

Lucinda, Thank you so much. I don't even take anything right now without checking with the doctor even after looking at the lookup tool. I am in such upheaval the last thing I need is another issue cropping up. I love that tool, it's really super helpful!

Sunrise, so exciting day 29! Pretty soon that will be me or the doctor decided to switch me over to Harvoni, I guess in a way I am lucky to be SO sick in their eyes that I can get whatever medications without too much grief, it also helps that I have an amazing ID team behind me who knows exactly what to do to get them approved. I also have pretty decent insurance. What stinks about mine right now is that I am almost at the point where everything is 100% covered and by the time I hit the number the new year starts and I have to start the count all over again. I think the IRS should reconsider how much we can put into our FSA plans because insurance CO-pays and max out of pockets have been rising annually but we are still at a max of 2500.00 annually. Perhaps I need to draft one of my long drawn out posts to our President.

Willie, Nice to know I am not the only one fighting this acid reflux issue although I certainly wouldn't wish it on anyone. It's not a fun thing to deal with on a good day let alone a bad one. I appreciate you sharing more than you know. It keeps me going to know I am not alone and this is one of those things that can be really isolating.

Lucinda a question you can probably help me with, if we test UD during treatment does that mean we aren't contagious? I think even if I get "cured" I am going to be super cautious forever. Just really curious what the official word is on when we are no longer contagious.

Sweet dreams,

~Mel~

Can someone please help me be patient waiting for my two week results, that may be the cause of this round of no sleep. Blood drawn last Thursday am, tick tock tick tock......

sunrise · « **Reply #39 on:** October 28, 2014, 05:07:33 am »

Dear Mel
So sorry to hear you aren't sleeping. Did you ask doc about ambien? I take it right before bed and lights out! Sometimes I wake for a half hr or so, but go right back to sleep. I wake up around 6am refreshed and work for around 5 hrs. I wonder if you are more itchy because of the chirosiss? Have you had you bilirubin tested? Do you get those rashes? Cool wet towels have helped me . In the past I would get itchy swelling rashes on legs. Didnt inow I had hep c so I didnt . I didnt know what the heck they were. It was after I had a night of drinking. The cool rags and drank alot of water, used a good aloe gel really helped. Hope you feel better.

BattleTheBeast · « **Reply #40 on:** October 28, 2014, 07:46:53 am »

Hi Sunrise, it's actually Day 18: But a continuation from day 17. Another sleepless night, I am totally exhausted but every time I try and sleep the itching gets more intense. If there was a gel, cream, plant, spray, soap to try I have. Was getting those funny rashes before I was diagnosed and actually had 2 different dermatologists and a few other doctors tell me it was psoriasis however not one ointment or treatment for psoriasis tried for it helped in any way. I agree that the itch/rash is from the cirrhosis however the Olysio has made it so much worse.

Previous bilirubin tests are all fine, but we will see what the labs from my 2 week mark show when I get them. Previous test was .6 with normal being 0.0-1.2

Sleeping pills are not for me at all, I have horrible nightmares when I take them and wake up completely unsettled multiple times during the night completely discombobulated!

Bottom line is that I am single, almost 57 and raising my grandson alone who is a little challenged and 13. I have to work to support us and I have to be somewhat conscientious to make sure he is fed and doesn't burn the house down. Not to mention pay the bills, get groceries, get to the doctors, him to shrink, do the laundry, blah blah blah! Then we have my job which is incredibly demanding working for a Financial Company in Information Technology. Of course there is always the option to go on STD but after 5 weeks it's a pay cut while disabled and right now with all the doctor bills and co-pays I am just pushing through some how. There are more options for me, Harvoni would be the next thing to try if I have to switch. If somehow it is less expensive than the S/O combo, I am sure the Insurance Company would be happy to have me switch.

I have faith from somewhere, somehow that this fog I have been living under for all these years and couldn't explain is going to be lifted. The light is that I know what's wrong with me, it's not all in my head! Do you even know how good it feels to finally have a diagnosis that explains what's been happening to me for so long. The fog is going to lift and maybe, just maybe tomorrow will be that day!

willie g · « **Reply #41 on:** October 28, 2014, 11:23:59 am »

hey beast,GREAT SHARK, he will get the job done. I had a lot of itching on my ankles and occasional on hands and other areas before I discovered I had hep c.. I kept thinking it was a fungus, but the ankles had little bumps. when I started treatment around third week it let up a lot in the ankle area which had drove me nuts too. using opposite toenails to scratch thru the night. sounds like you have your hands full yet its good to hear your plugging along with a positive attitude ''just'' Willie g

DesertGuy · « **Reply #42 on:** October 28, 2014, 02:48:59 pm »

Mel--the cirrhosis part-(I'm there too) put's us out there by ourselves. Riding a beast--yes we are, but I am at the point I can see light at the end of the tunnel( I'm a 24 week guy). Kinda even lost track of the days left. Itching--LOL--sometimes I'm scabs all over from my uncontrolled scratching.
keep posting I'm reading yours now

sunrise · « **Reply #43 on:** October 28, 2014, 04:04:18 pm »

Hey Mel
Sorry to hear that you have so much on your plate. Seems like its alwas something. Hopefully your doc can figure something out for the itching. You need to sleep!
Hey Willie g! Thanks for all your support. You are a good man. Its so great to have this forum for feedback. Only those of us that are going thru this can understand. Day 30 for me. 54 to go.

BattleTheBeast · « **Reply #44 on:** October 28, 2014, 07:29:24 pm »

Quote from: DesertGuy on October 28, 2014, 02:48:59 pm

Mel--the cirrhosis part-(I'm there too) put's us out there by ourselves. Riding a beast--yes we are, but I am at the point I can see light at the end of the tunnel( I'm a 24 week guy). Kinda even lost track of the days left. Itching--LOL--sometimes I'm scabs all over from my uncontrolled scratching.
keep posting I'm reading yours now

Shall I call you DesertGuy, Desert or Guy? Are we really the lone stage 4? That's so comforting isn't it? Funny thing for me is that I never really drank much (unless on a vacation hanging by the pool chilling out)so perhaps that's what has saved me from getting worse sooner. It's kind of crazy because we can't track back where or when I was infected. Not an IV drug user, possible it happened when I was 14 and my appendix ruptured. I was really close to death and not too sure what they had to do to keep me here for a few more years and my parents are gone so I can't ask them. At this point it's doesn't really matter does it? I got some Atarax for the itching, maybe your doctor will prescribe it for you. Now that I am getting used to it I am not comatose after taking it. How far along are you? I am impatently waiting for the results of my 2 week viral load and hoping it's going done from my 8.5 Million, I did find out my Bilirubin went up front .6 to 1.1 so I am going to be watching that like a hawk now. Right now I have been awake since Sunday around 10:00 AM. I am awaiting the collapse that's headed my way. I thought it was going to happen last night but only thing that happened was more itching. I could have taken more atarax but I was concerned about being alert for an 8:00 am meeting.

I think I need to start thinking of happy things more, escape this this craziness so my new thing is going to be to name the place I wish I was at that day. For Day 18 I wish I was in some little remote beach town in Mexico, hanging with some of my best friends and watching the ocean waves and having some guac and fresh salsa and chips lazily watching the wold go round..

~Mel ~

!

BattleTheBeast · « **Reply #45 on:** October 28, 2014, 09:42:54 pm »

Desert Guy, I just went back and read your story or the pieces I could put together. What makes me totally sad is that I keep seeing all these sick people on here struggling to find a decent doctor to work with them. I have been through a ton medically myself over the years and even more so in getting help for my Grandson's challenges. I no longer just go to one doctor and go along with the flow listening to his every word as Gospel. No longer eill I choose an HMO if a PPO is available! You may think it's going to cost you more but if have to go through an HMO you get crappier doctors and have to get a referral to go to the bathroom. You end up spending way more money getting Dr HMO's permission to go to another doctor and then god forbid you don't like the specialist because he's your Doctor HMO's bud and they make it a nightmare and you lose months get trying to get the help you need.

Here's a story for you: This past June before I was actually diagnosed with Hep C my family doctor did the routine annual blood work so the results come back and based upon my symptoms and the blood work he feels it has the potential to be a thyroid issue and immediately his staff gets on the phone and I get an appointment 4 weeks, the soonest they could fit me in. This new specialist I am scheduled to see in 4 weeks is quite a distance away and I felt like crap and was not in the mood to wait. So I bring up the insurance website and start looking for a option that is not only closer but also is affiliated with the hospital I trust. I find a Endocrinologist and BINGO, practice is huge, amazing newly constructed offices from a recent move, seems perfect and they can get me in to see the doctor next Thursday morning and I am thrilled! Meanwhile back at the ranch I find out that my daughter's fiance's Mom works for a renowned Endo about 40 miles from me. I don't hesitate and make an appointment with him. Thursday rolls around and I get up and go see the Endo I found via my insurance company. Office is beautiful, all seems good and I get taken back to a beautiful room. About 10 minutes later the doctor strolls in who looks to be in his mid eighties (the website picture certainly wasn't current

, The Dr takes one look at me and didn't even touch my throat or check my thyroid before announcing to me and his nurse that I have thyroid disease and need to immediately get on thyroid medications. Next he sends me upstairs to their in house lab for more bloodwork to confirm his diagnosis that he has already prescribed medication for. I practically run out of the door after the bloodwork is completed (7 sticks to draw blood later)

Later that day I head out to see the Endo from the family connection. I walk in and he sits me down in his office and actually listens to me. He then walks to an exam room and does a thorough exam with a nurse present. He looks me straight in the eye after and says do NOT take the Thyroid meds and you do NOT need them and they will make you even worse than you feel now. He says he has a hunch based upon my symptoms and needs to draw blood for the tests, He takes one look at the butcher job from the last doctor's office and says before we draw any blood from you we need you to hydrate so he puts me in the employee little lounge and says drink! After about 30-45 minutes of just relaxing and chugging down water his Phlebotomist is successfully able to draw the blood needed for the tests he wanted to run. We talked about them and he was going to run Hepatitis A B and C as well as HIV and the standard mix. I am finally on the road to a diagnosis and hopefully a cure.

Moral of this story for me was go with your gut regarding your doctors, do what you think is best after doing as much research as you can. Ask questions and keep asking until you understand the answers. Also for me I learned along the way that no one else is going to have the urgency I do and no one is going to advocate for me like I will.

Totally off topic, in my craziness after been up for way too long I just spent an hour cleaning and organizing things in my kitchen. I am in so much pain I can barely stand now and I still didn't stop! Meanwhile I have to work in the morning and need something to make me slow down and sleep! I really really think I am losing it!!!

DesertGuy · « **Reply #46 on:** October 28, 2014, 10:39:25 pm »

Desert Guy===old Hippie living in the desert
I end treatment Dec 19th--you ask how far along--I'm gone
Never drank much either--I have a multiple choice of possible causes, but because of the stage 4 I figure it was new blood from a compound fracture in 1964
I'm at the point of treatment--I think I'm just riding it out--no new stuff happening
keep posting--I'll add a few

BattleTheBeast · « **Reply #47 on:** October 29, 2014, 08:10:04 am »

Morning Desert Guy - December 19th is an awesome day; many years ago I gave birth to a special person on that day and in 2013 I gave my lungs a huge break when I quite smoking, So cosmic intervention be that as it may I have to say you will get amazing news on 12/19 that will bring back your smile!

More to follow in a bit; need to get grumpy grandson organized and a smile back on his not so happy face.

~Mel~

DesertGuy · « **Reply #48 on:** October 29, 2014, 10:31:14 am »

Well December is a good month--was born on the 7TH myself

BattleTheBeast · « **Reply #49 on:** October 29, 2014, 02:43:25 pm »

Day 19 and got my results from my 2 week blood draw.

Drumroll.....

Load was 8,238,340 - Test on 8/1/2014
AST was 60
ALT was 57

Load is - 20 (She said that is UD) - tested on 10/23
AST is 27
ALT is 27

So the excellent news is that I am going in the right direction and won't make the cirrhosis any worse than it already is at least while I am taking the meds. Now we continue to battle, hope I can start sleeping, praying for the itch to lighten up. I probably don't sound thrilled at the initial results, I am ecstatic but barely any sleep is taking it's toll on my enthusiasm. That's all I've got for today, need to finish up from work day and try and get some rest before I collapse. Peace and strength to all of you!

lporterrn · « **Reply #50 on:** October 30, 2014, 12:44:41 am »

Yippee!!!!!

BattleTheBeast · « **Reply #51 on:** October 30, 2014, 03:21:40 am »

Thank you! I feel cautiously optimistic, It would be pretty cool for us to draft a table we can put our test results. I'm nervous but hopeful.

trapper · « **Reply #52 on:** October 31, 2014, 03:48:51 pm »

mel hope you are doing better. Im on 10 day of s/o and no side effects and hope it stays that way. going in 2 weeks to get labs done. will know more by then. Don't eat grapefruits. optium phar. told me that grapefruits slow the absorbsation of osylo. take care and i'll keep posting. trap

BattleTheBeast · « **Reply #53 on:** October 31, 2014, 04:45:17 pm »

Hey Trap, I am so grateful you aren't having side effects. With my slightly lifted fog, I mean every so slightly after I occasionally sleep I can tell you I had each and every one of the problems now that I had before I was diagnosed after many years of misery but they always went away mysteriously and would come back, Sometimes worse than others, WELL DUH!! I was fighting the virus, my load went berserk and by the grace of someone up there I don't have cancer before they found the route cause. I have Hepatitis C, Stage 4 cirrhosis and now it's in a war which I will win. Every symptom I have had before, just not all together and not nearly as intense or painful. The thing is that I am winning so I can't give up, just need to swallow the pills and somehow keep going
~Mel~

Forums Index

Welcome

Author Topic: Staring at S/O bottles and start tomorrow (Read 35161 times)