Will I ever feel better? 48 weeks seems like too long.

[Sandcastle808]

Aloha, I'm new here, but I've been reading the message boards all day, I don't feel so alone.  The main thing I'm struggling with is the fatigue, and depression.  I lost my job 4 weeks ago, which I'm trying to look at as a blessing, I can devote the time to taking care of myself, but self pity sneaks in ...

I'm at week 11, triple therapy with incivik.  Can't wait till this last week is over, food has become my enemy. I've list 12 pounds so far, but somehow have more flab around the middle, go figure.

I have compensated cirrhosis, so I will do 48 weeks, I was UNDETECTIBLE at 6 weeks, at 4 <43 detectable

I'm on procrit, my hcb is not that low, so why do I feel so tired?  Is it the depression or is it physical?  Should I be able to just push through? I'm a single mom with 5 kids, and just keeping the house in order and feeding them is overwhelming sometimes.  I can't actually do much cleaning, I just sort of supervise, lol.


Component Your result Standard range Units
WBC, AUTO 2.1 4.8 - 10.8 K/ul
CONSISTENT WITH PREVIOUS DATA
RBC, AUTO 3.38 3.80 - 5.40 M/ul
HGB, AUTO 10.9 11.4 - 16.0 gm/dl
HCT, AUTO 32.7 34.2 - 47.0 %
MCV 96.9 80 - 99 FL
MCHC 33.4 32 - 36 gm/dl
RDW, RBC 13.8 11.5 - 14.5 %
PLATELETS, AUTO 62 130 - 440 K/uL
Results consistent with previous count. A smear estimate to rule out an
erroneous
count secondary to, e.g., clumping has been performed on a previous specimen.
BANDS, MAN 0.2 / 9% 0 - 0.50 K/ul
SEGS NEUTROPHILS, MAN 0.9 / 45% 1.8 - 7.0 K/ul
LYMPHOCYTES, MAN 0.7 / 33% 1.0 - 6.0 K/ul
MONOCYTES, MAN 0.2 / 9% 0 - 0.80 K/ul
EOSINOPHILS, MAN 0.1 / 4% 0 - 0.65 K/ul
WBC/RBC COMMENTS NORMAL  
DIFF METHOD MANUAL  

[crossroadsec]

Well, you've heard from a lot of the experts and old timers. This is do-able for someone like you. You sound like you have a positive outlook and a lot of inner strength. You may really need to draw on that in the next year.
I hope you do have medical coverage and a Dr who will listen. Sounds like yours is good if you're already on Procrit w/ a hgb of 10. I'm really happy you found this forum. You'll find good support and advice.
My very best to you as you finish that Incivik! Now the endurace part of the tx begins. BTW- I was stage 4 cirhossis w hep c - now und 2 mos post tx. Yeah. Life is gonna be good for you and your children too!
Karen :)

[BoceprevirGal]

Yeah, maybe it should be "One pill at a time", and "2 shots a week" for us, then : )
   I am thawing out my Procrit as we speak.  It does get frustrating, when the daily chores we have done for years now, (laundry, dishes, meal prep/shop) are now tiring us out.
   Good luck on getting your children to help out: I have pre-teen sons, and not much luck yet. I find myself doing this kind of shabby style house-keeping:
I have the dirty clothes pile located in a convenient spot, and find myself kicking the dirty socks into the pile, so I dont have to bend over too much, which even gets me huffing and puffing.  

[Sandcastle808]

Thanks BoceprevirGal, I know what you mean, I get out of breath making my bed, it's crazy!  You're right, I do have a little more energy in the mornings, I should take advantage of that time, duh!  Yeah, one say at a time, I shouldn't focus on 48 weeks, I know this stuff, LOL, but sometimes tge simplest concepts can elude me.

[BoceprevirGal]

  Hi SandCastle, I wish you good luck.  I find it hard to deal with triple Tx, and I only have two children.  I dont do too much house-work either. I have anemia also, and do weekly Procrit, but still get out of breath and over tired, so I try to pace myself.
  I do most of the hard stuff from 7 a.m, to 2 pm, before I start getting worn out. I am on week 22 now, and I have found it goes very fast.  The One Day at a Time out-look helps me alot, and my weeks have just whizzed by.
   Congrats on almost finishing your Incivek!

[Sandcastle808]

Hi Orphan,  

That's Waipio Valley? Right?  Beautiful down there!

I'm an addict in recovery, so the pacololo is probably not a good idea, but thanks, lol.

Your right, today was a great day, but I have to take my shot tonight, boo.

[orphanedhawk]

Hey, howzit in Hilo town ?
I used to live on the other side of the island, down Na'poo'poo.

The trick to making it through tx, is to think one day at a time. Make it through today. Some days are better than others.
One day at a time, one week at a time.
Surround yourself with beauty and good music, not hard to do there~ right ?
Keep drinking lots and lots of water and do get some exercise every day that you can, walking is fine.

And when you're feeling really blue, remember it won't last.

BTW: I used pocololo to help me through it:)
Brownies worked best for muscle pain.

[Advocate1955]

Oops, sorry 1swimmer, I meant the above reply for the original poster, Sandcastle808.
Advocate1955

[Advocate1955]

Yes, 48 weeks is a long time, but the good news is you can treat, the success rate for those treating with triple tx with Incivek is quite high, and you're almost done with Incivek.  I think that as soon as you finish Incivek you will begin to feel better, not symptom free of course as you will still be on Interferon and Ribavirin, but you will feel significantly better within a few days of finishing Incivek.  You will have made it through the toughest part.  As your body readjusts to just being on SOC, there is a good possibility that you will become more accustomed to the side effects and it will get easier as time passes.  My husband hasn't been lucky enough to make it past week 12 (first two treatments) or week 24 (third treatment), so we are always happy to hear of someone who has the blessing to be able to continue treatment while their liver is still compensated and can handle the medications.  Hang in there!  You're doing great!  Turn to this forum whenever you have a question or you need support.  There are very knowledgeable and caring people on this forum.
Advocate1955

[HectorSF]

Aloha!

I am glad you are feeling better. You have a good head on your shoulders to be doing all you are doing. Realizing that it is better to focus on your treatment and children rather then working is a big step and show how serious you are. As the MasterCard's "Priceless" campaign says “SVR?…PRICELESS”. For a person with compensated cirrhosis SRV is truly priceless.

Keep coming back here and posting about any issues you may have. People here have a lot of knowledge and experience and they can provide you with options that you may not know you have should you run into difficulty with aspects of treatment.

As Will says your labs look normal for someone treating and hopefully you will feel better when the Incivek treatment is over.

Unfortunately sometimes we have to suffer in the near term, to reap the rewards for a lifetime. Nothing really worthwhile ever comes easy. But the price we pay is truly worth it. Believe me, to be able to cure your hep C and stop the chronic injury to your liver is truly priceless. I know from personal experience what happens when that can’t be done and cirrhosis progresses to decompensated End-Stage Liver Disease and Liver Cancer where the only option is a liver transplant. I don’t want to see what has happened to myself and many others, happen to you if there is any way possible to avoid it.

So hang in there. You are doing great. Feeling ill is part of treatment, unfortunately. But don’t let it shake your resolve. Think about it as if you are climbing a challenging mountain. One foot step after another. Don’t think about how far it is to the top. That is too overwhelming for most of us mortals. Just keep moving forward. There will be sudden storms and setbacks along the way and you may feel lost and start despairing at times. But you get yourself back up and put your boots and keep pushing onward, one step at a time. And I promise you one day you will make it to the top of the mountain and be able to look around and see how far you have come. That you have done what at times seemed impossible. Our inner rewards in life are based on how much we have overcome. It is our most difficult life challenges that are the most rewarding and valuable experiences we can have.

From the guide "A Guide to Help You Stay on Treatment"…
-----------------------------------------------------------------------------------
“Foreword
If you have already started HCV treatment, congratulations. It takes courage to undertake treatment. One of the hardest parts is making the decision to start, so you are already over one of the biggest hurdles. The majority of patients who start HCV treatment also finish it.

This does not mean that the rest is easy. You may have some rough times
ahead. In the over 10 years of working with HCV patients, combined with
our personal experiences, we have come to believe this generality: if you
are brave enough to begin treatment, then barring major problems, you will
likely make it to the end.
Your chances of eliminating HCV are directly related to your ability to complete the entire course of treatment at the maximum prescribed dose.

For a variety of reasons, not everyone is able to do this. For some, it may be simply because they do not have enough tools and support to help them.The purpose of this guide is to offer some tips to help you stay the course. We hope this information is useful. Mostly we want you to know what thousands of us have learned – that you can make it through treatment.”

Lucinda K. Porter, RN
Writer, Hepatitis C Support Project and HCV Advocate

Alan Franciscus
Executive Director, Hepatitis C Support Project
Editor-in-Chief, HCV Advocate
---------------------------------------------------------------------------------------
Malama pono.
Hector

[Dee1956]

Hello there!  Wow, Hawaii?  I have a picture of the sunset and it looks so beautiful.  Everyone above has given you some wonderful advice.  They are great
It is a rough tx.  I had to break it down or I would never have been able to make it.  I was advised by others to think of week to week.  One step at a time, one day at a time.  It reminded me of a long commute to work I had earlier, if I did not think of the 2 hours it would take I could get through it.  If I were to think ahead it became overwhelming.  

I am so sorry you lost your job, it seems that even though there is FMLA many do not respect it.  I hope that you are able to concentrate on the very important things you and anything you feel is important.  You might want to check to see if the drug companies could help you with your co pays.  I was able to get help with mine, they paid about $200 a month.

Once you finish the Incivek you should start to feel a little better.  Everyone is different, some feel better right away some take a few days to a week.
I wish you the very best
Dee

[1swimmer]

Hey there, I'm glad you have found this forum and are feeling a little stronger. Sounds like you have a full time job at home and that is commendable. Remember to take a little time to pamper yourself. It may be a short nap, or meditation, a few moments to breathe. You are a David, battleling Goliath and that deserves reward. I have an app on my phone with anti stress quotes. It helps a little.
I tip my cup of coffee to you,
C

[Sandcastle808]

Wow!  Thanks so much for the thoughtful and helpful responses.

Hector, yes I will be sure to take COBRA coverage.  It's over $600 a month, but that's top priority.  I am collecting TDI, it's only about 30% of my salary, but it's something, so financially I'm ok for at least 5 or 6 months.  Still hard not to worry, though ;)

I've come back and read your posts several times tonight, and I'm sure I'll continue to.  You don't know how much that you've all helped me.  I was feeling adrift.  I'm a little stronger right now.

[willbb]

Hi there..

Your blood labs look relatively normal for someone undergoing HCV therapy .
Hopefully you should start to feel somewhat better when you cease taking Incivek.

Your platelets are fairly low (not uncommon for someone treating with cirrhosis)  so a good idea to keep a close eye on them by frequent labs done..

Best of luck with your treatment and welcome to the group...

Will

[flcyclist]

Wonderful and inspiring advice above.  As Hector said, don't underestimate yourself and your inner strength.  We can push through these difficult times.  And YES, it is all worth it.  I just finished 48 tx (SOC), never thought it would end.  Now 3 months post tx and still UND.  Hang in there. You can do this for yourself and your family.  Best wishes.

[HectorSF]

Aloha!

Nice advice from Idyllic. "remember that we are doing something very important for ourselves and our family right now. We are ensuring we have a healthy future with them." So true.

Being cirrhotic and treating means you have a likely chance of more side effects and more servere adverse events from treatment than others with lesser stages of liver disease. That is a given so we cirrhotics must be prepared to deal with them should they arise during treatment.  (See below "A Guide to Help You Stay on Treatment")

Stage 4 liver disease is not one thing. Cirrhosis covers people with early cirrhosis who may have no symptoms that they are ill to those dying of liver failure. Where each person is along that wide spectrum, only a knowledgeable and experienced hepatologist that works on a daily basis with cirrhosis and advanced liver disease can determine.

That you have been able to do what you have is a testament to your inner strength. Don't under estimate your yourself. You are fighting a tough battle and can be difficult but you can do this.

In my opinion you are correct in focusing your energy on treating your diseases now. Now you have the best odds of curing yourself of the virus.

If you are suffering from depression you should seek help with it as soon as possible because the antideppresants can take 4-6 weeks to fully be effective.

Fatigue is a part of treatment. If you are clinically depressed that will add to your fatigue. So it just isn't anemia that makes people feel tired and run down. Remember these are powerful drugs and they don't only effect the virus they can effect you in many ways including mentally.

A few practical items.
Since you are no longer working you need to maintain health insurance, first to get through your treatment and pay for all the services and drugs you may need, secondly being a cirrhotic you must have insurance should you develop any complications of cirrhosis. Advanced cirrhosis is a very expensive illness. If you should decompensate the bills can run into the hundreds of thousands of dollars as mine has. Have cirrhosis you should be having scans every 6 months for liver cancer. Doctor appointment's. Lab work. Etc. This can add up quickly. This is in addition to 3 treatment drugs plus Procrit, possible transfusion. None of it is cheap.

So I hope you have a plan in place for yourself over the next few years. Until Jan 1, 2014 when the Affordable Care Act law will make it illegal to be refused insurance because of a pre-existing condition you can be discriminated against, which could make it very difficult to impossible to get or pay for health insurance. So the easiest thing to do is pay your COBRA payments for your health insurance you have through work. While expensive, it is the easiest less hassle way to remain covered. Otherwise you with have to apply for local services, which even if you get them you may not get the best care available. Since you don't have End-Stage Liver Disease you will not be able to receive any disability funds from Social Security for example. I am not sure what is available in Hawaii but you should apply for unemployment unless you weren't fired. File for state disability if you left work on disability. These services will provide you with income so you can support yourself and help pay your insurance costs.

Yes, 48 weeks is a long time. But compared with the many years of life you have left it is just a bump. What you are doing now is the most important thing you can do with your life. If your cirrhosis should progress to decompensation then there will be no going back, and hep C and its resulting liver disease will have changed your life and future life or good. I am not saying it is the end of the world, it isn't but it is not something you ever want to have happen if there is any way to avoid it. You are doing the exact right thing. Trying to stop any further liver damage caused by hepatitis C.

Please get support from those around you. You are undergoing serious medical treatment for 48 weeks no one can do this alone. Have other help you with your children and other tasks. Food shopping, cooking meals etc. Let them help. This is your time of need. Except the help of others. You need to manage the amount of energy you have so you have enough reserves to do the things only you can do.

Let the little things go. Focus on the must dos. Forget about the "nice to dos". There will be plenty of time for that AFTER your treatment.

I would also look for a local hepatitis support group. It will help you to feel not so alone and you can share the ups and downs of treatment with others who are going through similar challenges. Do a search for hepatitis C support groups in Hilo or on your island.

You may find these guides helpful...

"A Guide to Preparing for Hepatitis C Treatment"
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Preparing%20for%20Treatment.pdf

"A Guide to Hepatitis C treatment side effect management"
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Treatment%20Side%20Effect%20Guide.pdf

"A Guide to Help You Stay on Treatment"
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Staying%20on%20Treatment.pdf


I hope you find something among what I have said helpful.
Hang in there!
`Okole maluna.
Hector

[Idyllic]

Week 11 on Incivek is the worst. You will feel so much better within days of being off the Incivek. I'm not saying things will be better but they sure will be different when you get into a routine of the Peg & Riba. I developed many food aversions while on the Incivek and only just now am kind of developing an appetite.

I'm on week 26/48 and every time I think of what life will be like the next few months I feel incredibly discouraged. I went ahead and decided to go on an antidepressant a couple of weeks prior to starting treatment as I knew there would be emotionally turbulent times ahead.

I am on weekly Procrit as well with an Hgb averaging 10 - 10.5 and there is still only so much I can do in one day. It helps to remember that our baseline Hgb is considerably much higher than that.  I see you are at 10.9 on your last week of Incivek.

**Be sure you continue to have frequent labs. For some reason it seems like doctor's think things stabilise after Incivek and I have not found that to be the case. It truly varies for the individual.

The frustration and psychological distress of not being able to perform at 100% while things fall by the wayside can really build up if you let it. And you just can't. There is only so much you can do right now and I am glad you have a few family members you can delegate at least some things to.

We both just have to remember that we are doing something very important for ourselves and our family right now. We are ensuring we have a healthy future with them.

You have my utmost respect for going through treatment with children around. I am sorry you lost your job and I hope you have a way to make ends meet. If you do then I would try to focus on life one day at a time and your treatment.

Hang in there ~ you are not alone.