Week 4 and counting

Hi All;  I haven't been on here to say anything in awhile, so thought I'd not only make an inquiry or two and also share whats been going on with me.

I have my 4th week behind me and I tell you its been nothing like I expected.  I have numerous sides and so tired I have been really struggling to make it through the days.Today is being a pretty good day as I am able to get some laundry done in between lots of rest periods! LOL

I'm still trying to work and my co-worker is really understanding and "helps" me some, but the travel time, getting up soooooo early, and the walking....wow!  I've never been so weak in my entire life!  I just try to stay focused and postive and think of the meds killing this ugly bug thats invaded my body and changed my life forever.

I know quite well after reading numerous posts on this site that I am luckier than a lot of folks in that I am a genotype 2 (test report said "cannot be further subtyped") and am looking at a shorter med time and for that I am truly grateful.  I took your advice and got copies of all my tests so that I am able to 'cipher' some of it and be able to ask questions.  One report said viral load result for HCV RNA is 105,000 IU/ML

I never hesitated one bit to get on treatment, I want rid of this!  When I went in last week to see my Dr I was whining and telling him how bad I felt and he turned to me and asked "Are you going to be able to continue?"  Yes, ****  yes, I went from being super woman to hitting a brick wall face first and I want my life back!

I read where some people moved during treatment....wow, I can hardly move me let alone anything else.  

My Dr said that my white blood count was very low, red blood cell low, sugar way down and potassium depleted....no wonder I can hardly stand up let alone walk!  I'm to go in and have another blood test Monday after work complete with the virial count test and then go see him Wed.  He is concerned about my white more I think.  He said he won't have the result of the viral count by Wed but we need to see about the regular hematology figures.  He wasn't his usual self that day last week and I don't know why, however he said something about putting me in hospital.  Anyone know what he might be entending on doing concerning my white count?

I know this is long and sorta rambling so I apologize.

Thanks for listening,
anniejo

[wyntre9]

Don't ever worry about rambling, here!

That's what this place does best.  :)

Week 4 and feeling lousy sounds about right to me.  Except I felt that way from the first week.

If it's any consolation, I'm at week 32 of 72 and compared to how i feel NOW, week 24 was a breeze!  But I wasn't (couldn't) work.

I've had low WBC from the beginning.  The first PCR at week 3 showed a 75% drop in WBC and ANC.  At the time I didn't understand the significance but my Dr. did call me at home several times and made me go see a hematologist for a shot of neupogen, which I believe is supposed to keep the WBC from dropping further.

As I understand it, the risk of low WBC and ANC has to do with contracting infections that could become so severe THAT could land you in the hospital!

What are those numbers?

The fatigue, weakness, the trouble walking, not being able to carry on 'normal' activities has a lot to do with RBC as well as the pegasys itself.  (Again, I'm posting the little I know on the subject).

So, you;re not going crazy, you're not imagining the SX, you can make it through another 5 months but, IMO, you may have to plan for some time off either through medical leave, personal/vacation days, etc.

Another thing to keep in mind is that dropping HgB sometimes causes severe anemia and if the RBC gets too low a transfusion is sometimes indicated.

Keep track of your SX, be sure to contact your Dr. if you feel worse, and try to take it easy.  i know just how hard that is, especially with working.

i have to keep telling myself the same thing and I'm on leave.  it's so hard to come to terms with these sudden limitations but they are real and unfortunately, a lot of people on TX have the same SX.

Hang in there,

Wyntre

[anniejo]

Hey thanks for the info, all very helpful.  Much obliged for your taking time to encourage and support.

I do have long term disability at work and then theres medical leave I'm sure I could get, no pay on med leave and only 75% of my normal pay on disability. In my case I'm alone and no back up money from other sources, soooooo, whats one to do?  What I had planned since I've always been super woman( lol) was to work thro taking the meds and stay focused on one day at a time.  But since I have lost my super woman status these meds and this disease thinks I'm easy prey! lol

Rght before this all happened to me I had transferred to another department and my job is a lot easier than it was before and for that I thank the God who must be looking after me!  I got the transfer the week after I put in for it, which usually doesn't happen.

I haven't told any of powers that be at work, however, some of my coworkers know and are very sympathic.  Then I find there are 4 people that work there that have or have had Hep c.  There's most likely more, just haven't found out yet and may not.

My wbc was 2.1, rbc 3.49, Hemoglobin 10.2, hematocrit 29.9.

The big thing that is a total downer is that no one seems to think I need anything.  Thats sounds soooo pitiful, don't it?  I'm speaking of those individuals who are my family.  Whats up with that?
I have a gentleman friend who I have been dating for quite awhile and hes been helping me as he can but he can't do a lot because he is diabetic, has a heart condition and is still working full time.  Hes been acting like he doesn't want to come around here this last week!  

Focus, focus, focus!

Thanks again, anniejo

[Andiamo1]

It is possible that you will reach a steady state with the drugs and actually start to feel better.  I am on triple therapy ( Vertex Prove 3 trial) and felt my worst at week 4.  I am still anemic, but as long as I move slowly, I am able to do some things - nothing aerobic though.

Good luck and hang in there.  Between you, your doctor and this forum, you will get through this and might even feel better in the near future.

[FullOfHope77]

I relate to your professional experiences as I too did all the hands on operations, software development, programming /architecting systems for a long time and then when I lost the edge I went in to senior mgmt :)

i'm on the triple as well and felt very anemic this past week but hoping I will pull out of it like normal tx and feel a little more energy. I'm in week 7 now and will do blood work at end of 8 again and see how I'm doing. Are you trying to do anything to boost your counts on your own? Seems they don't want us to do anything and know if I could do a couple small things that I would feel better. I did the INT only in 90's, then relapsed after clearing on SOC tx and think I would have SVR'ed if I stayed on longer than the 48 but now think I need to continue with Infregen or consensus after this just to make sure I got it but not sure it's allowed? Do you have plans for after tx? I'm stage 4 and you're in better shape than me but not sure what my options are after this attempt.

[meki]

The family can't see the disease... They can't feel the way you feel - and you probably have been "tough" through your whole life.

You've also been slowly sliding into the "fatigue" area for a long time (with HCV most of us seem to have had that part first - before DX).

Anyhow - my family were like totally ignorant of how I felt...

I think it's because they don't want to know how bad it is -- and if they keep acting normal - then it must not be there. LOL!

Or - because you're acting tougher than you really are - and they don't know what to do.

Some people don't think you're sick because you can still stand up or get out of bed. Or, if you're like me --- you got up - put on your make up and you look almost normal.

Well - here's a little trick... TELL THEM how you feel.

The only way I got my family to have some sympathy --- LOL --- was to say: I need you to help me out when you see I'm not doing well. If I can't get out of bed - or if you see me not thinking clearly. Don't be overbearing - but could you maybe get me a glass of water - or check in on me? I'm a little scared.

My family was awesome - but they just don't know what is going on inside you.

Or how it feels.

Hugs,

Meki

[anniejo]

I guess you are right, but I feel like I've been sniveling about not feeling good for soooo long and now its so much worse.  Before we found out what the problem really was and I was going pretty regularly for lab tests I was speaking with my brother and he said, "well, you're going to keep on having tests until they find something wrong with you!"!  I was stunned and became silent because I didn't know how to respond.  when he realized I was hurt he started saying he was just making a joke.

Our Mama is in the nursing home and has been for 6 years, shes equal to an 18 month old toddler and I miss her.  Our Dad died Dec 28, 2005, so its just my brother and I and Dads younger brother who will be 70 this Oct.  My brother and I have 3 kids each.

I'm scared and I'm trying so hard, but I feel so alone in this thing.  Its hard not to get angry at them.  My daughter has her masters in nursing and she could really help me, however she lives in Kentucky and I'm in Texas.  My youngest son lives in SC and called to say he was coming for a visit in June that he was making the arrangements.....ain't seen him yet.  My older son lives 65 miles from me in Dallas and he informed me he was too tired to come up on his day off to help me out.  Oh yes, my brother is only 10 miles from me.

I'm sure its denial as you said and they don't know what to do, but I have told them.  I have a saying "He who does nothing makes no mistakes!"  Another one, "Its not what you become in life, but what you overcome!"

I guess I am just having a pity party for one! lol

Thanks for writing.
anniejo

[anniejo]

Yes, I've been trying so hard to eat the right kinds of foods for anemia and the doctor did prescribe a potassium pill big enough for a horse! lol

I've NEVER been a water drinker, but I drink mostly water these days, nothing else even comes close to tasting good anymore.  I can't eat but a little food or I start feeling sick or start coughing and nearly gag.  I think something sounds good and eat it one time and don't want to even look at it again.

I do hope as andiamo1 said "it will get better".  I entend to "hang in there"!   Best wishes to everyone amd thanks for caring.

Oh yes, could someone supply me with the abreveations?  A few I think I have figured out, but others I haven't a clue.

anniejo

[meki]

Well - here, since you're going to have a pity party - well darn - I'll join you! LOL!

I didn't realize you were literally going through this all alone. That has to be the toughest thing about the treatment...

The feeling of isolation from everyone.

This is a very sad disease --- but you're doing great - and you know what? You going through this alone means you're one heckuva tough person - and that's something to be commended on.

Could you pass the ketchup please?

Ok - so yeah --- (sipping from a cup of tea and taking a bite of these lovely french fries you've made for the party) --- it's kinda hard not to have the family feel like they "owe" you and should come out and take care of you.

I mean - after all - you housed them for 9 months and then raised them - cleaning up after them, paying their bills - getting them set up right... so that they could be who they want to be... And there they are (Darn good fries, by the way) all the way out there, not bothering to help you...

I mean - sheesh - what is it going to take? For you to actually kick the bucket before they care?

Nah... I don't think it's that.

What it is - is that most people have NO CLUE - what is going on inside of you.

Maybe you need to tell them - HEY --- I need some help. I need someone to maybe come and stay with me for a month. Or something.

Yeah their lives are tough - because - honestly - whose isn't?

(Can I have some more cream in my tea please? Oh - thank you.)

Your brother on the other hand - you could go over there and take him some literature and give him an idea of what you're going through.

Your kids should be scolded. Harrumph. I swear - what are they teaching kids these days?

Anyway - your family surely is not making an effort - and I'll drink my tea to THAT!

Maybe send them off some packets about HCV. Maybe they really don't know what the TX is or does to a body.

If they did - they would be making an effort.

Sigh...

But how about local groups? Do you have a local HCV Group? Do you have anyone to help you out? Or friends that can come check on you?

Oh shoot - I'm sorry to have rambled on - but any time you need someone to join you on a pity party that is well deserved - you let me know... I'll bring some ice cream next time!

And you know what? You should just totally indulge yourself into something fun --- or chocolatey!

Oh ohoh and one thing I did to make my water better was to put thin slices of cucumber and lemon in a jug of fresh water in the fridge --- that helped out tremendously and tasted wonderful!

Hugs sweetie!

Meki

[FullOfHope77]

Here's some acronyms I copied from someone that was a 'super list'; hope it helps. hang in there as you are the only one that knows how hard this is and there are a few of us that understand too. We got your back!!! Hang in there and sorry that things are so tough right now... I hope it gets better sooner rather than later. - hope

HCV Acronyms

HCV Hepatitis C Virus
CHC Chronic Hepatitis C
AHC Acute Hepatitis C
G or GT Genotype
GI Gastroenterologist
SOC Standard of Care
ITT Intent to Treat
Tx Treatment, Therapy (can also mean Transplant)
Bx Biopsy
Dx Diagnosis
Sx Symptoms/Side Effects
Rx Prescription
Hx History
RVR Rapid Virological Response (4 Week PCR - UND
EVR Early Virological Response (12 Week PCR - UND or >2 Log Drop)
EOT End of Treatment
SVR Sustained Virological Response (UND 6 Months post TX end)
PCR Polymerase Chain Reaction
RT-PCR Reverse Transcription-Polymerase Chain Reaction.
TMA Transcription Mediated Amplification
BMI Body Mass Index
WHR Waist to Hip Ratio
VL Viral Load
HVL High Viral Load
LVL Low Viral Load
UND Undetectable Viral Load

Drug Acronyms
IFN Interferon (Alpha 2a / Alpha 2b)
NPIA Non-Pegylated Interferon Alpha
PegIFN Pegylated Interferon (Alpha 2a / Alpha 2b)
CIFN Consensus Interferon (Infergen/alphacon)
RBV Ribavirin
Riba Ribavirin
EPO Erythropoietin (Epogen/Procrit)
Neup Neupogen

Blood Test Acronyms
FBC Full Blood Count (same as CBC)
CBC Complete Blood Count (same as FBC)
LFT Liver Function Test
ULN Upper Limit of Normal
LLN Lower Limit of Normal
ALT Alanine Aminotransferase
AST Aspartate Aminotransferase
ALP Alkaline Phosphatase
GGT Gamma Glutamyl Transpeptidase
LDH Lactate Dehydrogenase
SGPT ALT used to be called Serum Glutamic Pyruvic Transaminase.
SGOT AST used to be called Serum Glutamic Oxaloacetic Transaminase
RCC Red Cell Count
HGB Hemoglobin
Hemo Hemoglobin
WCC White Cell Count
MCV Mean Corpuscular Volume
TSH Thyroid stimulating hormone (Also called: Thyrotropin)
TIW Tri Weekly (Three Times a Week, Thrice Weekly).
IU International Unit

[pigeonca]

Six months ago, before the EPO drugs got black box warnings on their labels, when somebody reported extreme fatigue and low hgb, posters would recommend Procrit or Aranest or their equivalent.  Now it seems everyone is being overly cautious.  If properly monitored, these are marvelous helpers for anyone suffering from anemia during tx.  Ask your doctor if you might benefit from something like this.  Docs are so busy they can't think of everything with every patient, so we have to ask if we want something.  You shouldn't have to feel that bad or have hemoglobin that low.  

[anniejo]

thanks y'all for letting me vent and everything you say is sooo true.... just hard to handle when you've always been superwoman and always been there for them.

Its also very hard to lose "superwoman" status!

Thanks for the "list", maybe i can make a little sense of all this information.

Thanks also for the "hugs" they mean a lot.

I think I'll try to go to the barn to see if my horses are available for a hug before it gets too hot, bet they will be.
anniejo

[Lilla]

I am a genotype 2b.   The treatment plan for me is 24 weeks and I finished that last Monday (today are my last riba pills....hip hip hooray).    My hemoglobin  started at 14.9 pre tx. After 3 weeks it was 12.8, at 8 weeks it was 12.2 and at the 24 week time it showed 11.2 (it did a steady, not rapid, decline).   Red blood cells 4.65 pre tx, then 4.12, 3.91 ----- and now 3.43.   My white count was 5.0 pre tx.  Then it went to 2.7, 2.0, 1.8 ---- and now 2.2.    Telling you all this because when my white count fell to 2.0, the NP prescribed Neupogen for me.    I personally did not want to take this, and reason was I just didn't want another drug in me.   Doctor's office then wrote me an order for blood work every 2 weeks to monitor.   They were really keeping an eye on the neutrophils more.  My neutrophils went fro 2630 to 545 (lowest), but at last blood work they went to 726 on their own.    I complained to my doctor about the lack of energy and she indicated that my hemoglobin was staying about 10.0 and if it fell that, she'd consider Procrit, but she was being more cautious on prescribing.

All in all, everyone's sides are different and everyone responds differently to whatever medications.  The only other medication I took while treating was Ibuprofen and Tylenol, and thankfully I did not need that very often.   As I've posted many times, my biggest complaint has been the lack of energy and stamina, and not knowing from one day to the next, when the sides would be the worst.

Hang in there.   Treatment is no piece of cake and each person is different.   The past 24 weeks for me have gone by fast, yet at times it has taken forever.   I am sorry to hear that your family has not pitched in a little.   I have been fortunate and have a wonderful, caring husband who has really gone thru treatment with me in so many ways.  

This treatment has taught me to try and become a more caring and giving person, especially to those going thru life altering times.

Give your horses a hug for me. I love all animals (they love back unconditionally).  

[katerika]

Hugs to you. I know my husband (uncomplaining) noticed when I said, good night and hadn't cooked dinner. Plus it's gets everyones attention when there isn't any food in the house!I I think I get my best support from friends and co-workers.PLUS We are here for you too! A lot of people ask how are you, but it becomes evident they are just saying that for lack of anything else to say. I used to say I feel like s--t, now I just say." all fixed all better," they smile and move on. It gives me a giggle.

Teri

[anniejo]

Thanks to all of you for your advice, encouragement, and support.  I just had a long phone conversation with my brother.  Maybe it will help in that area.  I entend to call my son in Dallas and speak with him also.  I don't need a lot, I just need them to at least offer something....that would be nice.  I've found that if things don't get done, the end of the world isn't coming because of it! lol

I've found that if my yard grows up which it is, I can turn the horses into the yard and they sure like that nice grass!  I haven't figured out how to get them to use the weed eater though. lol  I've found that if my laundry piles up I seem to still have lots of clothes to wear!  If nothing much gets done for these next 20 weeks so be it.  Everything is relevant!

What matters is that I get through this and get well.

Thanks again, anniejo

[hightrekker]

Injection 16 today---
It has been  rough the last weeks--
I have been in bed all day, need some down time--
Geno 2, I'm down to single digits in weeks left--
UD at week 4, could probably stop now, but going for 24.

[Forseegood]

all I can say is that I hope you feel better soon as you hopefully acclimate to the meds...one thing that has me a little concerned is the blood sugar thing...you say your blood sugar is low, were you hypoglycemic going in? is this condition made better if you eat? I guess youre prob not taking you blood sugar on a regular basis, just wondering if you know these things about your case, thanks!!!!!

[Forseegood]

hey thanks for that list! At the risk of sounding pompous (maybe an effect from being at these boards for awhile) I was talking to a new "fellow" ( a new hepatologist who is under my main doc) and I started spouting off some fairly common acronyms and he just looked at me like what??? And told me he wasn't up on all the hep c acronyms...(boy, was it refreshing to meet a person of authority who readily admitted that he didn't know something! he he) I think I might email him this page, cause it is a superlist, and he told me he'd like to know them, thanks!

[Andiamo1]

I am not sure what I will do.  I guess I have to wait to see what arm I am in.  If it's 24 weeks, I will look at the viral load response and decided if I should extend.  I guess we always have that option, although we are not supposed to do that.

If it's 48 weeks, that will probably do it for most of us.  In fact , the studies seem to show that 24 weeks will be enough.

How are you feeling now?  I am getting by, but I would hardly call this fun?

You are stage 4?  Are you fully compensated?

I hope the triple therapy does it for you.

[FullOfHope77]

I am stage 4 and fully compensated and feel pretty good and work full time... all in all I feel pretty good considering all things. I like 48 too just to know that I've finally got it but I feel like we are lucky and have already cleared... all the evidence seems to support that we're going to SVR. Should have bought some stock yesterday as i felt I should have done :)

If we're clear at 4 weeks then go 48 weeks then we should be good to go for SVR is the way I see it... likely we'll be in D but it's a personal choice if one continues to treat to ensure that we're okay...

how are you feeling? (in spite of tx)