User

Welcome, Guest. Please login or register.
December 27, 2024, 09:25:31 pm

Login with username, password and session length


Search

Forums Index

Stats

Members
  • Total Members: 6315
  • Latest: DRG
Stats
  • Total Posts: 55137
  • Total Topics: 4855
  • Online Today: 256
  • Online Ever: 3061
  • (September 25, 2024, 11:40:40 pm)
Users Online
Users: 0
Guests: 230
Total: 230

Welcome

Welcome to the Hep Forums, a round-the-clock discussion area for people who have Fatty Liver Disease, Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
  • Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the Hep Forum Moderators.
Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.
« previous next »
Pages: [1]   Go Down

Author Topic: Tips for Surviving Treatment  (Read 10426 times)

0 Members and 1 Guest are viewing this topic.

Offline Bituman

  • Member
  • Posts: 157
Tips for Surviving Treatment
« on: March 22, 2015, 04:04:53 pm »
I've been thinking about starting this thread for a long time.  If you scan all the threads, there are LOTS of great tips or other words of wisdom.  You guys have some real gems that have helped me.  Problem is, all that good advice is scattered all over the place.  So my idea is to have a thread devoted to just that good advice.  No tip is too simple.  It can be something involving nutrition, mitigating side effects, role of exercise, psychology of treatment, etc.  Perhaps this thread will help some of the treatment newbies or those considering treatment.  Mods if this has been done before, feel free to lock this and post link to where the tips are located. 

So I'll get this started.  Here is my tip for surviving treatment. 

One of the first things everyone learns is to stay well hydrated.  The often quoted rule of thumb is divide your body weight in pounds by 2, and that should be your daily water intake in fluid ounces.  For me that's a lot of water.  I live in Arizona and hydration is a cultural thing here.  Many people, including me, get behind on intake because water gets old and boring.  I am not one of those people that can walk around all day sucking on a water bottle.  So what I have learned is that water enhancers are an ideal product to help you stay hydrated.  You have seen these around.  Here's an example:  http://www.bevreview.com/2013/10/09/coming-soon-aquafina-flavorsplash-liquid-enhancers-sparkling-water/

I like these because they are easy to use and make water so much more palatable.  You can vary the amount you use, try different flavors, and even mix them.  I like mixing Vitamin Water Lemonade with Aquafina Strawberry to make strawberry lemonade.  Cautionary note, I recently discovered that some of these contain caffeine.  So read the label just to be sure there isn't something in there you don't want.  And yes, my hepatologist approved! 

Bob

Logged
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline sapphire101

  • Member
  • Posts: 238
  • "Stop worrying and start living"
Re: Tips for Surviving Treatment
« Reply #1 on: March 22, 2015, 06:13:37 pm »
Thank you Bituman for this great post that will help many.
Yes to water. I was not a water drinker before treatment and cannot come anywhere near your recommendations or I will float away! I now drink a bottle morning, noon, with dinner, and before bed.


Nutrition: The day I started treatment I also started saying no to sugar, no to white flour, yes to vegetables, yes to fruit, yes to fiber, yes to protein. I read labels and I stick to it with very rare exceptions. Sugar is as hard on our livers as alcohol and if you just pick one nutritional change I would suggest it is to remove sugar while on treatment. It was only hard for the first two weeks- really. Now it is a habit.


Exercise: Daily exercise and this is whatever is comfortable for you. It is as much about your head as it is your body. Yoga and light weights are my go to.


Spiritual: Figure out what this means to you and make a promise to yourself to be in spiritual balance and take care of all of you.


Side effects: Call you support lines. All pharmacies and insurance companies have them. Talk to your doctor. Talk to your forum friends. No one has to suffer in silence and I have learned much from the conversations here. One tip I had no clue about was that I should be avoiding sun. I did not learn this until about two weeks on treatment and sun+ meds = skin problems. I am already itchy and now I cover up or sit in the shade.

Non medical drama: Take charge of your destiny. Keep a journal of all calls/contacts with Insurance companies and specialty pharmacies. Have full names if possible, dates, and summary. Always ask for your own copies of labs and any other procedures. This has helped me get out of many jams and yes it adds to my fatigue to have to be my own advocate, but this is the system and to survive it this is what you must do.
Logged
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Bituman

  • Member
  • Posts: 157
Re: Tips for Surviving Treatment
« Reply #2 on: March 25, 2015, 03:22:40 pm »
I'm bumping this thread because I still think it's a good idea.  Hope to see some more participation.  So here's a good tip I picked up in the "considering" section. 

This is from Else, "My two cents would be to start a "treatment notebook". (every visit, every email, every phone call, dated and with names).  You can fill in past info when you're up to It..."  Here is the entire thread: 

http://forums.hepmag.com/index.php?topic=2453.0

Seems to me this is a simple, but very effective way to stay organized thru the whole approval and treatment process. 

Okay, now it's your turn. 

Bob

Logged
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline SIXFOOTFOUR

  • Member
  • Posts: 89
Re: Tips for Surviving Treatment
« Reply #3 on: March 25, 2015, 05:49:58 pm »
I'm a newbie here and only 19 days into tx. But  after reading a lot from this forum and trying some of it for my side effects Id agree
1.  hydrate
2. Tylenol if you have headaches,( I had light ones the first few days)
3. no antiacids 4hr before or after (Im a tums user due to old ulcers)
4. Remember how much easier and greater chance of success we have over previous medications to treat Hep C and be grateful that we have an easy road  when compared to past patients!
Logged
Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Tips for Surviving Treatment
« Reply #4 on: March 25, 2015, 07:41:53 pm »
I'm only a few days in, so feel somewhat silly suggesting anything, but agree that a treatment diary, be it online or on paper, is useful. You often forget things especially with good ol brain fog, so writing things down is important.

I started a secret Facebook group (that's what they're called, secret, I'm not a Russian spy in disguise.  Theoretically they are not searchable and only visible to those who have been invited). I have invited those people I know are supportive no matter what and will keep me focused on the positives. It's a small group of people I trust implicitly. That way I only have to give the information once. It also serves as a bit of a journal for me.

I'm reading the tips though and thank those who are contributing. I'm certainly drinking more water than I did before!
« Last Edit: March 25, 2015, 08:06:35 pm by Philadelphia »
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline atomic dog

  • Member
  • Posts: 160
Re: Tips for Surviving Treatment
« Reply #5 on: March 25, 2015, 10:50:26 pm »
Envious of every one that's sticking to a healthy diet. Mine has gone to hell. Oh, well. I will add, get plenty of sleep. That's been one area that I have managed pretty well, along with cutting back on my work hours (took off today, and I've been taking of the past few Fridays. Highly recommended if you cash pull it off--always good to destress.
Logged
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Tips for Surviving Treatment
« Reply #6 on: March 26, 2015, 12:30:52 am »
Great stuff here - if this had been out before, I wouldn't have had to write 2 books on the subject!
Logged
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline SIXFOOTFOUR

  • Member
  • Posts: 89
Re: Tips for Surviving Treatment
« Reply #7 on: March 26, 2015, 01:52:13 pm »
Lucinda,

I did not put it together, I read your book "Free from Hep C" a couple years ago when I was considering tx with the 3 med combo through UCLA.

Thanks very much for sharing all of your information, it helped me and my wife better understand so much more than what had been eating away at me for 40 years!
Logged
Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Tips for Surviving Treatment
« Reply #8 on: March 26, 2015, 05:01:18 pm »
Sixfootfour, your words made me feel sixfootfour. Thank you!
Logged
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Bituman

  • Member
  • Posts: 157
Re: Tips for Surviving Treatment
« Reply #9 on: March 26, 2015, 10:12:28 pm »
Quote from: lporterrn on March 26, 2015, 12:30:52 am
Great stuff here - if this had been out before, I wouldn't have had to write 2 books on the subject!

Oops, maybe that should have been the first tip, "read Lucinda's book." 
Bob
Logged
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR
Pages: [1]   Go Up
« previous next »
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.