Author Topic: New S/0 Diary of Treatment (Read 34349 times)

BattleTheBeast · « **on:** October 31, 2014, 07:55:46 am »

Day 21:

I took day 21 S/O after forcing down some oatmeal and an 16 oz water bottle
1. Itch - This itch is miserable and may cause the doctor to pull me off this and move to Harvoni but I am now 3 weeks in and only 9 to go. I do not want to have to start over (Got a two week VL =20 basically UD) and don't want to ruin using Harvoni as a second option if the S/O fails. Started with Atarax and it helps a bit. Looking into some other possible options. FYI: if anyone gets the heat rash try EMU OiL, it's what is used to help skin during and after radiation.
2. Lack of sleep; Due to symptom #1 and the inner turmoil my body is in fighting I am not sleeping very well. A couple of hours here or there and then I go into the collapse which lasts about 48 hours then I am back to the couple here, couple there. It's miserable but I can handle it and do not want additional medication for sleep.
3. Pain and aching: seems to be getting more severe, could be due to the lack of sleep but it's pretty severe. If I wasn't already on pain medication for Interstitial Cystitis I would be in an ER. Even with the medication I do have a couple of times I have been tempted to go to the ER anyway but made it through.
4. Bouts of Super Energy, inability to focus, multitasking: I think I feel like a person with ADD does. I am bouncing from one thing to another. Not finishing the first and starting on the 2nd and 3rd and 4th. So tired forgetting what I started and didn't finish yet. Crazy motivation to want to organize and clean every nook and cranny.This is all very different for me and I wonder if it is the brain fog lifting after 34 years. I have always been someone who could easily multi-task and complete each item without an issues. No my brain is moving faster than the rest of me.
5. Nausea, Acid Reflux, Gut issues: Using Prilosec for gut issues per Dr's ok and trying to keep the stress level as low as possible. Number 2 is not working too great so trying a softener to help because it could be contributing to the pain,

That's the gist of it for now, maybe more tomorrow or later. Hope everyone has a great day. /color]

Bucky · « **Reply #1 on:** October 31, 2014, 09:21:14 am »

Mel
Yes your fog is lifting. You need to eat something with more good fat when you take your meds. A bowel of oatmeal isn't enough. Fat slows down the absorption and allows the Olysio to get out of your stomach and into your gut. That is one reason I took my meds after a full evening meal. This could help your gastro issues.
Bucky

BattleTheBeast · « **Reply #2 on:** October 31, 2014, 01:17:12 pm »

Bucky,

Thank you so much for the advice but I am a little confused. You said to eat something with more "good fat" what fat is good? Do I want to slow down the absorption? what's the difference between stomach or gut? Sorry but my brain is not behaving and I can't quite comprehend what you explained to me.

Thanks,

~Mel~

Doluska · « **Reply #3 on:** October 31, 2014, 01:29:12 pm »

Good fat is in avocado and peanut butter. Put it on cracker and eat eat it before taking the pills.

Bucky · « **Reply #4 on:** October 31, 2014, 03:56:50 pm »

Quote from: BattleTheBeast on October 31, 2014, 01:17:12 pm

Bucky,

Thank you so much for the advice but I am a little confused. You said to eat something with more "good fat" what fat is good? Do I want to slow down the absorption? what's the difference between stomach or gut? Sorry but my brain is not behaving and I can't quite comprehend what you explained to me.

Thanks,

~Mel~

Hello Mel,
http://www.webmd.com/diet/features/skinny-fat-good-fats-bad-fats

Yes you want to slow down the absorption in your stomach so the meds get into your gut. By having a full stomach the Oylsio is mostly processed in the small intestines away from the concentrated gastric acids of the stomach. When you see the warning about "take with food" it is either because it helps with stomach upset or the med works better in the gut (intestines).
I wonder how many of the people who have relapsed after using S&O failed to followed prescribing information concerning food. The one thing my IDS kept saying was take it on a fairly full stomach and I did to the tune of gaining 10 lbs while on treatment.
Bucky

BattleTheBeast · « **Reply #5 on:** October 31, 2014, 10:38:15 pm »

Thanks Bucky and Doluska,

I think part of why this is so challenging for me to take on a full stomach is that I was never a breakfast person. My doctor really wanted me to take in the morning because I have so many sleep issues to begin with. He didn't want me to throw something in the mix in the evening. Honestly I feel awful but I felt awful before starting this so I can't blame the S/O. What I am going to try and do is slowly move this to after lunch when I can eat a healthy meal a little easier than first thing in the morning when I am trying to get the Grandson out the door and off to school. He's a challenge all on his own. Tomorrow I will move to 10:00 am and make sure I ingest some healthy fat before taking the medications. Sunday I will move to 11:30 am and then by Monday I can do 12:30 - 1:30 PM and keep it there to see if that helps.

Meanwhile I feel like I have been run over by a truck, my entire body hurts by just the slightest touch. The fibromyalgia like symptoms I have been fighting for years are more intense than ever and to be honest I want to crawl into a hole and just cry.

My days are spent working a full time intense job from home and being overloaded because they were nice enough to let me work from home but of course there is always a price. Then the rest trying to deal with the 13 year old boy who is a walking hormone right now. I have to keep the home running, bills paid, food cooked, homework help and the arguments with the 13 year old because I asked him to do something as simple as brush his teeth. I am not sleeping well, my Interstitial Cystitis is flared from all the stress, my skin is raw from itch and scratching, If I stand too long my kidneys feel like I someone is just rubbing salt into a wound and making it hurt so much it brings tears to my eyes. Do I want to go the hospital? Sure if they would help me but we all know it's a process I have to make it through. Basically there is a perception, you show up in a hospital in pain and need help, you tell them you have Hep C and are in treatment and now you are automatically a drug addict there looking for pain meds and the evil eyes start. Stopping the S/O to try Harvoni or something else won't change how bad I feel.

Can I blame this all on the S/0? No i can't, I have multiple issues that became way worse in May, the specialists spent days, then weeks and then months to diagnose me while I fought all of these symptoms above with the exception of way more extreme itching. I am rambling again and so sorry, just falling apart into many pieces, the pain is incredible tonight, going to close electronics and pray I can sleep some of this away.

~Mel~

BattleTheBeast · « **Reply #6 on:** November 01, 2014, 06:16:08 am »

Still here and up all night again. I looked down at my ankles earlier and basically they are gone due to swelling/water retention. I am a little confused on what's happened with my body right now. I have never had swelling and this constipation has got to go ( I have got to go) so I am snacking on dried cranberries because I have eaten everything else I can think of that might help. I am also taking a mild stool softener.

I feel like my cirrhosis went completely ballistic since I started treatment 3 weeks ago to fight the Hep C. I need to remember I am new to this whole thing. I knew I was sick on and off for a while but it's been blamed on everything a person can possibly think of for the past 20 or more years. I don't know how much of what's been blamed on other things was actually a flare or even from when I initially contracted the disease.

Today is a birthday party for my youngest grandchild and I refuse to miss it. I have to drive an hour each way but I know I can manage this somehow.

Which doctor is in charge right now, I see two regularly, the one treating my IC and my ID doctor.

Right now I can't focus to continuing writing so I am going to close my eyes and maybe get a simple catnap in. I need a nap before the drive over late this morning.

DesertGuy · « **Reply #7 on:** November 01, 2014, 08:29:14 am »

I feel like the things I felt from my cirroisis are coming back. Abdominal swelling and a mild warm feeling in my belly. Have almost tossed my cookies a few times in the past few weeks due to nausea. After starting treatment these went away for months, Dr said they had nothing to due with my disease but they went away after beginning treatment.

Doluska · « **Reply #8 on:** November 01, 2014, 08:40:34 am »

Dear Mel! We all full of fright and hope at the same time. It looks like you will feel better if you will make a scedual l and follow it, side effects could be fixed by taking water pills, sleeping pills and some analgesic. Tell to yourself that it is only for 12 weeks, and after all battle, those helping pills will go away. Live day at a time and be easy on yourself!!!! I am feeling for you and wish your way to recovery will be easier. D.

Bucky · « **Reply #9 on:** November 01, 2014, 09:35:18 am »

Mel,
Your body is in a fight with the dragon. These are powerful meds and that is what it takes to knock it out. You can jump from breakfast to lunch without any problems.
The first weeks of treatment I had the swelling, itch and sleep problems. These subsided and the meds began to make me sleepy so that was another reason I switched to taking them with a late dinner.

Try and stick it out with the S&O since insurance approval for Harvoni seems to be a crap shoot at the moment.

I know that doctors can be hard to reach but if you still have concerns then contact your ID doctor and see if he/she will order blood work to make sure that everything is OK. And by all means, if you feel really bad then go to the ER and get checked out.

Bucky

BattleTheBeast · « **Reply #10 on:** November 01, 2014, 11:02:22 am »

Bucky, Desert, D,

Thanks for your input, I am totally confused by what's happening with these symptoms right now. I have read so much since being diagnosed a couple of months ago and I feel like the more I read the more confused I get.

This morning at 6:30 I pick up the phone and call the Sovaldi Mysupport nurse because they are available 24/7. She informed me that no one during any of the clinical trials had some of the more serious symptoms I am experiencing from her documentation on the S/O combination. She told me I should go to Urgent Care at a minimum this morning but preferably to the ER. She was very concerned about the swelling and the kidney pain. So stubborn me is going to my Grandson's birthday party and when I get back I will call the doctor and take it from there.

The oddest thing is that I get pieces of symptoms, the intense kidney pain, swelling, difficult #2, acid reflux and soreness makes sense with the cirrhosis but then I have perfectly normal urine both output and no smell, no yellowing anywhere.

UGH, I just want to feel better! This last intense flare stated in May and is still going on. I am a recluse and I am so lonely stuck here!

Doluska · « **Reply #11 on:** November 01, 2014, 03:42:37 pm »

Dear Mel! Go to ER! It will clarify your fears and feelings. I am, personally feeling that this is cirrhosis and nervouse anticipation of complications. You exosted from all this, and clarifying all this will give you power to go forward! Be strong. Don't guess, go to ER! D

sunrise · « **Reply #12 on:** November 01, 2014, 07:42:49 pm »

Hi Mel
Sounds like you're having a tough time. I don't understand one thing. When you tell us your symptoms, and people reach out to you. You seem to dismiss their advice. I hope you feel better. Witb symptoms lime that I would definitely go for professional help...just sayin....

BattleTheBeast · « **Reply #13 on:** November 01, 2014, 10:22:30 pm »

Hi All,

Update for everyone. I listened to all of you and before I went to the birthday celebration I placed a call into my specialist. The On-call doctor called me back within 10 minutes. we had an in depth discussion about my current symptoms as well my medications list. As we were talking he was reviewing my records and saw that the only real change was the Atarax for the itching. He said edema was a rare side effect but it was a possibility. I have to be able to care for my grandson who I am raising alone so, we made a gameplan.

1. No more Atarax - if I itch take a benedryl or a tub with Epsom Salts
2. Monitor for a fever - if I get one, call the office immediately and head to the ER
3. If swelling worsens call the office immediately and head to the ER
4. Any changes in Urine - call the office immediately and head to the ER
5. If pain become intolerable - call the office immediately and head to the ER
5. if not at the ER this weekend then call the office at 9:00 AM Monday and they will fit me in.

I'd like to address your comment Sunrise,

Quote from: sunrise on November 01, 2014, 07:42:49 pm

Hi Mel
Sounds like you're having a tough time. I don't understand one thing. When you tell us your symptoms, and people reach out to you. You seem to dismiss their advice. I hope you feel better. Witb symptoms lime that I would definitely go for professional help...just sayin....

I am not sure why you felt that I was dismissing people. In this thread:

1. Bucky recommended that I move my meds to later in the day. Once I was able to understand what he was explaining to me I wrote back showed how i planned on taking his advice and implementing it so he could let me know if I missed something.
2. Bucky was talking about gut issues and i did not understand so I asked and not only do I get an explanation i am given ideas on how to implement and a great link to on what's good and bad and great advice from Doluska as well.
3. Desertguy also chimed in with some supportive feedback for me

I am really trying to understand this disease I have and how it is impacting me. One minute my head is clear and the next it's it's covered in this gray matter and I can't see through the fog. This morning I wasn't just asking for advice, I was also spewing out the garbage stuck in my head so I could face another day of challenges. Sometimes I need to let my anger and frustration out but I did not direct it towards anyone here nor did I ignore the amazing advice I was given. This forum has been nothing but positive and supportive and I personally am beyond grateful for every tidbit of knowledge that newbies like me as well as the veterans here. I am also trying to do the same for others. I may not have a ton of Hep knowledge but I am always ready to listen and support someone who struggles. So thank you Sunrise for your words of encouragement, they are appreciated and also thank you for understanding that sometime I just need a safe place to let things out without being judged.

DesertGuy · « **Reply #14 on:** November 02, 2014, 06:15:36 am »

Sunrise--we are here because we need to vent--and to get responses, good or bad.
If I didn't find this forum months ago I would be totally lost. I need other screwed up people to bond with, and I'm sure others feel the same.

BattleTheBeast · « **Reply #15 on:** November 02, 2014, 09:21:34 am »

Quote from: DesertGuy on November 02, 2014, 06:15:36 am

Sunrise--we are here because we need to vent--and to get responses, good or bad.
If I didn't find this forum months ago I would be totally lost. I need other screwed up people to bond with, and I'm sure others feel the same.

DesertGuy - Thank you for understanding because I was really starting to feel like my safe place to let out my fogged, crazy and sometimes really angry was this forum. Then one sentence from someone here has me reeling so much that I go back and read every single one of my 53 posts over the last 23 days to make sure I wasn't behaving(writing) in any way I would deem as selfish, mean or inappropriate. I personally found my posts to be just the opposite. I am here posting for feedback and the knowledge shared by this amazing diverse group of people. I am also here to be me and sometimes me needs to let it all out somewhere safe instead of biting my grandson's head off.

So today is my day 23 on S/O and my amazing initial results fighting this beast are being over-shadowed by my thin, feminine, not so ugly feet looking like they belong on Fred Flintstone. I am no more or less swollen than yesterday, I have no fever or any of the other issues the doctor and I spoke about yesterday. For now, its time for me to take a nap and keep the feet elevated.

Doluska · « **Reply #16 on:** November 02, 2014, 10:45:45 am »

Good for you, Mel! Keep going, and be strong.!

sunrise · « **Reply #17 on:** November 02, 2014, 11:22:14 am »

Hey Mel
Hey girl I apologize to you. I hope you didn't take offense. I was just reading your story and got concerned as your side effects were so extreme. Glad you went to doctor. Just thought this forum was about being honest and real. Have a blessed day. Hope you feel better.

rainbowray · « **Reply #18 on:** November 02, 2014, 11:22:43 am »

Hi Mel,
I'm on week 19 of sol/rib , without cirrhosis, (I believe). That bloating is something I would hate, but goes with the game. The treatment is clearing the virus, but your liver condition is still what is is for now, and it is processing extra overtime with these drugs. It (the liver) will inflame, but it is part of the process. You are fortunate to have a rep that gave you a great game plan. I think the sunrise is just concerned, and if not on these drugs would have articulated in a not so "sounding" approach.
I drink dandelion root tea, which is a great therapy for the liver and blood, is a mild diuretic and helps with the extra water in the system. It moves bile too, and so does eating a lot of artichokes.
Hey Desertguy,
You are a tough cookie, and no one said it would be easy, except maybe the Doc, lol. I have actually reduced the rib, because it is overloaded in the system anyway, and it has done it's work, being undected since week 3-4. I just took an 18 week blood lab, with Liver Panel, Blood Panel, Lipid panel, Diabetic Panel, Immune system Panel, and AlphaBeta Protein for liver cancer marker. (Because I had concerns of some inflammation, but no doubt the ribavirin is the cause because
all my test came back better than in range, the best I've seen in 40 years. bilibirum
is great, alt-ast-alp=great. Cholesterol =best in years. Glucose panel=better than normal. I tell you, keeping a good diet during this treatment boosts the immune system, and that will kill any remaining virus-(the SOB's). My last day is Dec 17, I bet yours is the same. Keep on trucking.

DesertGuy · « **Reply #19 on:** November 02, 2014, 11:52:35 am »

Blood work wise and viral load wise I think I'm doing okay(last blood and load results I saw were 2 1/2 months ago. But mentally ,I am a wreck, just waiting for the last time I head for my pill container. This forum really has me working on my diet. The times I have felt the worst have been when I put the wrong things in my mouth. As I've stated, Alcohol is not and never has been an issue with me. But am finding that sugar is just as deadly. A slip up of eating ice cream, cola, and a bunch of baked potatoes in the same day had me an inflamed liver for the past few weeks. I don't know if it is a reaction to the drugs, or is this just the condition of my liver and I get to live with it. I have cirroshis and if the treatment works for me, I get to hold my own. The Hep C will be dead, but being very gentle on me liver will be up to what I put in my mouth.-----That's kinda where my head is today!!!

rainbowray · « **Reply #20 on:** November 02, 2014, 12:13:42 pm »

Organic Coconut Sugar is the best, tastes good and digests without the sugar issues.
Try it deserguy. Stay completely away from sodas and fried foods. Cooking with coconut oils actually is helpful for the liver. I have been doing this, and on a very good strict diet, had Quinoa noodles with tuna last night, a great salad topped with a
flax seed, almond nut, sunflower seed combo, grounded up together and sprinkled over the salad with olive oil and vinaigrette. When you see the results of a diet like this it is more than worth the extra effort.

DesertGuy · « **Reply #21 on:** November 02, 2014, 12:49:15 pm »

Rainbo--what's for supper?? I'm coming!!!
Ok--how about honey?? Is how I sweeten my coffee in the mornings.

bepper · « **Reply #22 on:** November 02, 2014, 01:10:48 pm »

I sure hope you are feeling better Mel.

bepper

Bucky · « **Reply #23 on:** November 02, 2014, 03:36:20 pm »

Quote from: rainbowray on November 02, 2014, 12:13:42 pm

Organic Coconut Sugar is the best, tastes good and digests without the sugar issues.
Try it deserguy. Stay completely away from sodas and fried foods. Cooking with coconut oils actually is helpful for the liver. I have been doing this, and on a very good strict diet, had Quinoa noodles with tuna last night, a great salad topped with a
flax seed, almond nut, sunflower seed combo, grounded up together and sprinkled over the salad with olive oil and vinaigrette. When you see the results of a diet like this it is more than worth the extra effort.

Rainbowray,
Where do you purchase Organic Coconut Sugar? I use pure honey that my neighbor provides from her bee hives along with molasses that another friend's family makes.
I have not used white sugar since I saw a documentary about how white sugar was killing us. The ah ha moment was when they discussed the fact that the manufactures used bleach to make it white.
Bucky

rainbowray · « **Reply #24 on:** November 02, 2014, 04:18:09 pm »

Organic local honey has good properties, good for the immune system, but Coconut Sugar doesn't break down like sugars do, so it is even ok for diabetics. Honey is better than most sugars, but still breaks down like a sugar and need to find your limit.

desertguy,
I am meeting someone for dinner tonight so I am eating out,sorry.
I get the coconut sugar mostly from a store out here called Whole Foods. If you can't find a store that sells organic products, go online. More people are discovering it nowadays. If need be PM me, I'll send it to you.

BattleTheBeast · « **Reply #25 on:** November 02, 2014, 05:40:01 pm »

Hi Everyone - Day 23 afternoon check in.

Just finished my move to PM S/O instead of AM as someone suggested (wasn't that you Bucky?). Really hoping it helps but I don't think it can hurt. I may push it out a couple more hours tomorrow but with daylight savings being over it's actually 6:30 here and the normal time my Grandson and I have dinner. So I made some grilled chicken with quinoa and baked brussels with a little balsamic for me and he got Grilled chicken, corn and mashed potatoes and applesauce. Then I took my meds. Swelling still hanging with me but will see Endo/Gastro Dr in 10:30 am and get his input in person and he will contact the ID Doctor and they will come up with a game plan for me. Crazy thing is the timing because they will probably be shipping my 2nd bottle of S/O tomorrow and he may want to switch me to Harvoni so I hope me getting the S/O new refill and then being switched doesn't have them make we wait a month before starting it. I am really going to listen to the doctor's advise on this but I am going to everything I can to stay the course with S/O and not have to start all over again. My four week visit with my ID doc is scheduled for 11/5 already. I have to get to a point where I can go back to working in the office all day everyday. My company is not going to let me work from home indefinitely and it's already been since June. Not getting well enough to get back to the office is a huge worry hanging in my head.

I just want to tell you all thank you so much for being so supportive of my craziness and I can only hope to be as supportive to all of you. These meds, my body, the cirrhosis, the Hep C infection, the Interstitial Cystitis, my lack of a great personal support system don't help me to be the best me I can be at times. Honestly this is my first noticeable attack from the Cirrhosis and I am not handling it well. I take the meds to cure the infection and the cirrhosis I didn't even know I had 3 months ago rears it's ugly head. I am not and never was a drinker, I quit smoking almost a year ago to be healthier, I don't know where the Hep came from and probably never will. This is all a lot to process in less than 3 months and I hear you screaming at me Liver! That is not an excuse, it's my reality.

Rainbowray and Desertguy, is there a good diet you are following? I am going to try and reach out to my Insurance Company and the doctors to see about hooking me up with a nutritionist for assistance with this. They do offer specialized programs like that for diabetics and may well have one for Hep and Cirrhosis. I know I was told about good fats vs. bad fats. I am not a soda drinker any more. I have Pelligrino as my soda and maybe throw a lemon or orange slice in if I have them. I drink still water all day long over a gallon normally and in the morning I have one large coffee sometimes two if I haven't slept well. Oh well, I will figure it out and learn, if I can get a good diet to follow I will post it for all of us to use as we deem appropriate. This is going to be a long term battle and I am realizing it that when my Hep C is cured I will spend the rest of my life dealing with the Cirrhosis. This is a serious wake up call.

I am going to try to hit the store tomorrow for Dandelion Tea and organic coconut sugar. I can rearrange my route home to go by a Trader Joes and they have lots of organic and good stuff for me.

~Mel~

P.S. I really really want some ice cream right now so I am going to grab some organic frozen fruits I have and put them into the Ninja with a little water. It's cold and right now anything with fruit tastes so good to me. Should I be limiting my fruit intake as well because of the natural sugars in it?

Doluska · « **Reply #26 on:** November 02, 2014, 07:48:44 pm »

Dear Mel! My case manager told me that I Must eat fruits , but still remember that there is sugar. So, no grapes, no mango. Stop orange juice, it could interact with Olisio, as well as apple and any acid juice. Simple water, no sparkle is your healthy choice. D.
M

Mike · « **Reply #27 on:** November 02, 2014, 08:09:44 pm »

Hi Mel,

I'm sorry you're having the side effects.

These are potent drugs that hype up your immune system, which in turn helps fight the virus.

The Hep-C virus is trying to fight back, which is a losing battle with these drugs.

A good, common sense diet and lots of water are your friends. You should urinate clear at least once a day. Drink water.

The fatigue is what it is and is part of the process of ridding your body of the virus. It will pass.

Make sure you get with the doctor in the morning just to have him/her give you the once over and look at your feet and discuss managing some of the side effects.

It sounds like your employer is working with you. Do you think they will allow you to come back on a graduated schedule? Maybe 2-4 hour shifts with the goal of gradually increasing?

Regardless, keep your chin up and eye on the mark - you're in the process of slaying a dragon, which takes energy and focus.

We're all pulling and praying for you!

Best wishes, Mike

penny · « **Reply #28 on:** November 03, 2014, 12:13:52 am »

Mike
I didn't think these drugs hyped up the immune system. As far as I know, they kill virus/rather stop virus from replicating. I think that's why people with autoimmune illness are able to take this. If I am wrong please correct me.

BattleTheBeast · « **Reply #29 on:** November 03, 2014, 12:28:38 am »

Hi Doluska,

I do favor plain old water over anything at this point. It is nice to change it up once in a while so I'll grab a sparkling water and toss in some berries or whatever I have on hand. I have to keep things low acid for years due to my Interstitial Cystitis anyway, my bladder doesn't like acid at all! I will be more vigilant in what I choose, perhaps some infused plain water as a change will do the trick for me as something "different". Thank you for your advice, its appreciated.

Hi Mike,

I couldn't agree more that these are very strong drugs, the more I have ingested, the worse my side effects are. I really feel like they trigger my worst ever Stage 4 cirrhosis flare. It's just so hard to tell what is what with me. All I can say is that I feel worse every day although I still try and bring a "can do" attitude mentally every day. Someone suggested I move the meds to the evening to help with some of the impacts. So today was the the first time I took after dinner. I fell asleep at around 9:30 PM and woke up at 11:30 PM with severe acid reflux in my throat, so much so that it burned for over 30 minutes and it's just now starting to subside after 48 plus ounces of water. I will attempt to go back to sleep soon and keep my head more elevated.

I am excited to see the doctor tomorrow, it's actually not just my feet, it's my whole body, feet are just the thing that stand out for me and easy to show how swollen they are. My doctors are all working together so the Dr I see tomorrow who manages my IC will call my ID doctor while I am there if he feels it's needed. I am scheduled for my week 4 check up with my ID doctor Wednesday morning.

In regards to my employer right now they are saying all or nothing. I have until mid February to get back into the office full time. I continue to be very grateful that I have a job that supports my grandson and I. I have some options I can invoke if needed but presently just happy they have allowed me the leeway they have. It's allowing me to take my mind off this by working from home full time.

Above and beyond all, thank you so much for your prayers and support, they both mean the world to me. I feel so blessed to have found this forum the same time I started my O/S.

~Mel~

badbradley · « **Reply #30 on:** November 03, 2014, 11:30:07 pm »

Hello
I recently viewed a S/O treatment log on you tube. The man has early cirrhosis,geno 1a. After viewing his daily reports I observed two things. For the first two - three wks he reported that he dosed w/olysio at 7am with brkfst., then he dosed w/ sovaldi at 10am with a lt snak. Later reports revealed he had stayed with that dosing schedule throughout treatment - 12 wks. I know for sure you are to take these two medicines together. Secondly, he seemed to have no symptoms throughout his treatment. The person did not achieve svr12.He achieved undetect at wk. 8,12 during treatment. When I viewed that first report I said oh no.I believe he did not svr because of this dosing schedule.
YOU TUBE - hepatitiscsovaldiolysio
It is heartbreaking! Brad

BattleTheBeast · « **Reply #31 on:** November 03, 2014, 11:37:59 pm »

Hi Brad,

So sad he didn't get SVR but there are at least options for him now. I take my together. I figured they needed to work together so they should be taken together. I honestly did not even ask or ever think differently. I was almost UD at 2; went from over 8 mil down to <20 so that's encouraging. Struggles with the internal battles being raged inside of me but working through it a day at a time. Right now the swelling and itching continue to be my major side effects. Hope you are doing well and thanks for sharing this.

~Mel~

Mike · « **Reply #32 on:** November 04, 2014, 12:07:11 pm »

Hi Penny,

My understanding is this:

When a virus enters the body, your immune system responds, releasing antibodies to help fight the viral infection. This fight continues throughout the duration of the infection. When starting Hep-C treatment, your immune system is already responding to the infection (hyped). As the virus dies off, the body's natural defenses continue throughout the process, returning to homeostatic equilibrium once the virus is eliminated.

Some drugs, most notably, Interferon, can really hype the immune system; as interferon is naturally present in the body and is part of the body's immune response. Regardless of the drug's mechanism of action, the same process continues (the body's physiological tendency to maintain homeostasis), which in the case of viral infections results in a hyped immune system.

Best wishes, Mike

melody · « **Reply #33 on:** November 05, 2014, 05:38:15 pm »

Quote from: BattleTheBeast on November 02, 2014, 05:40:01 pm

Hi Everyone - Day 23 afternoon check in.

I take the meds to cure the infection and the cirrhosis I didn't even know I had 3 months ago rears it's ugly head.

this happened to my brother... same thing. I am here to research for him. How are you doing now?

BattleTheBeast · « **Reply #34 on:** November 05, 2014, 09:20:36 pm »

Hi Melody,

Saw my doctors, had some extra bloodwork done and need to get an ultrasound.Looks like portal hypertension. So while the treatment is going well my cirrhosis is going ballistic. If we can clear the virus then hopefully my liver can start to heal. Just feeling crappy right now

Mel

BattleTheBeast · « **Reply #35 on:** November 06, 2014, 11:19:18 am »

Day 27: It's been a tough week but hopefully the worse is behind me. What's going on is not related to the S/O treatment or direct side effects so I want to make that really clear. What's happened to me right around week 3 in my treatment is that the Cirrhosis decided to rear it's really ugly head and bring me to my knees. I had extreme swelling (ascities) possible portal hypertension, horrible acid reflux and back pain. I've never had an attack of cirrhosis before and those who have been reading my posts know that all of this is very recent to me. Test results, diagnosis, treatment all within a 2-3 month timeline but something that has apparently been in my body for many many years. Had I been a drinker or been abusive towards my body in any way I may have found out sooner but I didn't. I really can't say I have any side effects from the treatment right now, I get a little headache and queasy if I don't eat enough or drink enough water but that's my own fault. So today, I feel a little better from my episode, I have seen my ID doc, my IC doc and my personal doc. They have been very supportive, I had new blood work done yesterday and also have an ultrasound scheduled for Monday. Just trying to stay strong and thankful to great doctors and all of you.

~Mel~

goodbyehepc · « **Reply #36 on:** November 06, 2014, 12:01:46 pm »

Quote from: BattleTheBeast on October 31, 2014, 07:55:46 am

Day 21:

I took day 21 S/O after forcing down some oatmeal and an 16 oz water bottle
1. Itch - This itch is miserable and may cause the doctor to pull me off this and move to Harvoni but I am now 3 weeks in and only 9 to go. I do not want to have to start over (Got a two week VL =20 basically UD) and don't want to ruin using Harvoni as a second option if the S/O fails. Started with Atarax and it helps a bit. Looking into some other possible options. FYI: if anyone gets the heat rash try EMU OiL, it's what is used to help skin during and after radiation.
2. Lack of sleep; Due to symptom #1 and the inner turmoil my body is in fighting I am not sleeping very well. A couple of hours here or there and then I go into the collapse which lasts about 48 hours then I am back to the couple here, couple there. It's miserable but I can handle it and do not want additional medication for sleep.
3. Pain and aching: seems to be getting more severe, could be due to the lack of sleep but it's pretty severe. If I wasn't already on pain medication for Interstitial Cystitis I would be in an ER. Even with the medication I do have a couple of times I have been tempted to go to the ER anyway but made it through.
4. Bouts of Super Energy, inability to focus, multitasking: I think I feel like a person with ADD does. I am bouncing from one thing to another. Not finishing the first and starting on the 2nd and 3rd and 4th. So tired forgetting what I started and didn't finish yet. Crazy motivation to want to organize and clean every nook and cranny.This is all very different for me and I wonder if it is the brain fog lifting after 34 years. I have always been someone who could easily multi-task and complete each item without an issues. No my brain is moving faster than the rest of me.
5. Nausea, Acid Reflux, Gut issues: Using Prilosec for gut issues per Dr's ok and trying to keep the stress level as low as possible. Number 2 is not working too great so trying a softener to help because it could be contributing to the pain,

That's the gist of it for now, maybe more tomorrow or later. Hope everyone has a great day. /color]

For what it's worth, what helped with my itch (and hives) for me was cutting out inflammatory foods like wheat based grains and starches like pasta, breads, I even stopped oatmeal for a while and I cut out pizza which I loved so much and replaced these foods with and increase oof anti-inflammatory foods and I also increased low fat protein - I ate high amounts of green leafy veggies like kale spinach, and collard greens these really helped my body to get rid of toxins. Drank lots of water and cut out caffeine (coffee mostly) coffee maybe good for some purposes but it's highly processed and does more damage than good to us actually/ I also did green juices which helped bring my ALTs almost at normal levels and my viral load went down considerably. I got more energy eating like this, and although I missed my cheese (did I mention to cut out cheese?) the trade off was worth it. Just something to consider if you haven't tried it already....

BattleTheBeast · « **Reply #37 on:** November 07, 2014, 05:23:55 am »

Hi GoodbyeHepC:

Thanks so much for the tips, sounds like you may be on to something so I am going go glutton free and hit up my local farmers marker for the good green stuff. We will see if that helps me a bit, honestly even the thought of a treat to the grocery store isn't happening right now but I think I can handle with the little Produce Market. I was quite the miserable site to see. Doing better, today will be 28, another night of no sleep but what doesn't kill you makes you stronger, right?

Thanks again for taking the time to write to me, it's really appreciated!

~Mel~

goodbyehepc · « **Reply #38 on:** November 07, 2014, 07:15:41 am »

Quote from: BattleTheBeast on November 07, 2014, 05:23:55 am

Hi GoodbyeHepC:

Thanks so much for the tips, sounds like you may be on to something so I am going go glutton free and hit up my local farmers marker for the good green stuff. We will see if that helps me a bit, honestly even the thought of a treat to the grocery store isn't happening right now but I think I can handle with the little Produce Market. I was quite the miserable site to see. Doing better, today will be 28, another night of no sleep but what doesn't kill you makes you stronger, right?

Thanks again for taking the time to write to me, it's really appreciated!

~Mel~

That's the spirit! I was just reading Rainbowray's post about Organic Coconut Sugar and he mentioned Quinoa noodles and other great foods, just so you know alternative's to white flours and wheats are available, it's just a reconfiguration of foods. When I started to think of it like that than I saw that it wasn't about what I wasn't going to eat anymore but about new and other things I was going to eat that my body was going to make better use of. And of course as it has been mentioned, drink plenty of water. Most people don't realize it but lack of water can bring on that back pain, your disks need lots of water so you need to keep them hydrated on a daily level. And walking is the best thing for back pain too.

BattleTheBeast · « **Reply #39 on:** November 07, 2014, 08:55:29 am »

Water is one thing that isn't a problem for me. I already have a fairly modified diet due to the interstitial cystitis and have for years. I allow myself one low acid coffee a day then for me it's all about water and more water. Sometimes sparkly water with some fresh berries in it or even a little mint. It's fun to try new things and see how creative one can be. I am going to see about getting to my favorite Trader Joes this weekend.

~Mel~

zeena · « **Reply #40 on:** November 07, 2014, 09:19:01 am »

Hi Mel.
Glad to hear you are feeling better.I have a 20 year old and remember when those early teen years hit!! ouch !! your health is more important than sweating the small stuff, as a matter of fact give him a little space while your self healing and you might be suprised at his response.You sound wonderful, and he is lucky to have you as his guardian. Think about Mels health now, and EVERYTHING comes second.All my best and support, zeena

BattleTheBeast · « **Reply #41 on:** November 07, 2014, 09:56:57 am »

Hi Zeena,

Thanks for the encouraging words. My grandson is a great kid and he has been doing the best he can with me being the flake these days. When I feel good I cook up some batches of food for him so he can just heat and eat. I am lucky to have him right now because I think if I didn't I'd just crawl into bed. Right now I make myself get up and start working, get him off to school and try to maintain a little bit of normalcy.

~Mel~ 4 weeks down, 8 to go....

goodbyehepc · « **Reply #42 on:** November 07, 2014, 10:39:08 am »

Quote from: BattleTheBeast on November 07, 2014, 08:55:29 am

Water is one thing that isn't a problem for me. I already have a fairly modified diet due to the interstitial cystitis and have for years. I allow myself one low acid coffee a day then for me it's all about water and more water. Sometimes sparkly water with some fresh berries in it or even a little mint. It's fun to try new things and see how creative one can be. I am going to see about getting to my favorite Trader Joes this weekend.

~Mel~

That's great! TJ just got a new pasta made with brown rice and Quinoa, it's not bad, you need to rinse it first to get the starch out but the consistency is pretty nice when it's cooked (just don't over cook it). They also carry a gluten free flour that's nice to make pancakes. I put banana , an egg and mix the flour with flax meal (also at TJs) it's quite good like that - high in Omega and then I use honey for the topping or fresh fruit!

rainbowray · « **Reply #43 on:** November 07, 2014, 10:49:33 am »

Had a great salad, plenty of Avocado, grind ed flax seed, almonds, and sunflower seeds all together sprinkled all over.
Also home made pizza with gluten free whole wheat flour, organic chicken sausage with raw Monterrey jack cheese, bell peppers. A kale, peach, banana smoothie.
Got to help the immune system as we do this.

goodbyehepc · « **Reply #44 on:** November 07, 2014, 11:03:15 am »

Quote from: rainbowray on November 07, 2014, 10:49:33 am

Had a great salad, plenty of Avocado, grind ed flax seed, almonds, and sunflower seeds all together sprinkled all over.
Also home made pizza with gluten free whole wheat flour, organic chicken sausage with raw Monterrey jack cheese, bell peppers. A kale, peach, banana smoothie.
Got to help the immune system as we do this.

Yes indeed, that sounds amazing! Now I'm in the mood for a similar salad, been a while since I've had an avocado Thanks for sharing!!!!!

I'm on day 7 with Harvoni, I feel a lot of strength today even though I was only able to get 6 hours of sleep. Went for a 3 mile power walk and I could of gone further had I not had to come back home to do work. But overall I'm very pleased with Harvoni hardly any side effects today

jberlin · « **Reply #45 on:** November 07, 2014, 11:09:08 am »

All:

What a great and informative thread. Thanks for all of us who read and learn here. I love the resilience and determination. Keep it up! I will be following this, and hoping for great results for all! -jack

BattleTheBeast · « **Reply #46 on:** November 07, 2014, 12:44:24 pm »

Hi Jack! Thanks for jumping in and Ray, do you make house calls? I am so low energy right now because of no sleep (again, I know) and my soon to be XBFF HepC is not happy with his buddy Mr F4th Cirrhosis. So glad my brother is coming up tomorrow so he can drag me to TJ's for some good stuff, for now just going to hang with a smoothie, still have banana, mango, blurberries, spinach, carrot maybe throw some yogurt in to make it a little creamier with a 32 oz side of water.

This awful cirrhosis will not get the best of me, nope not going to happen!

Meanwhile Day 28 meds are in now, I was scared I would fall asleep so I took it a little early today. Of course I can't sleep and work is going ballistic today.

~Mel~

rainbowray · « **Reply #47 on:** November 07, 2014, 01:34:31 pm »

My wife does all the cooking, except for big events, then I mostly cook.
Tonight may be Turkey/Spinach meatballs with Quinoa spaghetti, and a salad.
The diet thing works, it gives the liver relief from processing rough items.
Artichokes and Avocados are great, the liver loves them, and easy for starter items to the diet. They actually help the liver.

goodbyehepc · « **Reply #48 on:** November 07, 2014, 01:52:13 pm »

Quote from: rainbowray on November 07, 2014, 01:34:31 pm

My wife does all the cooking, except for big events, then I mostly cook.
Tonight may be Turkey/Spinach meatballs with Quinoa spaghetti, and a salad.
The diet thing works, it gives the liver relief from processing rough items.
Artichokes and Avocados are great, the liver loves them, and easy for starter items to the diet. They actually help the liver.

I couldn't agree with you more!

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