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443974 tn?1224589328

Today I realized how frightened I really am!

In one fleeting moment the mask of "hey don't worry about me I'll be fine" disintergrated.   And I keep asking myself.... and now I put these questions out to you  and anyone kind enough to share....    How sick will I get when I start Tx?  
I know everyone is different but  will I be able to do simple things... play with my nieces and nephews, take them to the movies, run and romp with a puppy, have an intelligent conversation... play tennis on a good day?? Work in my garden?
Or will I be glued to a lounge chair with a big ugly straw hat covering my head,  as my beautiful thick hair falls out in clumps?????

Sorry to start the day off with a gloom and doom Question... I think I am  finally awaking to the reality of it all the closer tx day gets!   I am still praying it is all a dream and I will wake up.
10 Responses
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475300 tn?1312423126
Hi, I am new here but have read a lot of the archives.  I also had geno type 2, did 24 wks tx and am at 4 wks post tx.  Will know in June after another blood test if I am still clear.

My hair did not really start falling out till the end but I did cut it short back in Nov.  It is very thin but not bald.  

Very active lifestyle here also----train gsd's the German way (lots of work)  Have 3 horses and 2 ponies, 2 businesses of which I do the paperwork---payroll, billing, banking, invoicing, ect.  We also have a very large koi pond.  I have 3 of my dogs in an indoor / outdoor kennel and 2 in the house.  Very large flowerbeds that I care for also.  I also have 2 grandkids.

Please understand that I am not at all bragging about what we HAVE but trying to give an idea of what I have DONE before tx.  I don't know how things are taken on this forum but I wanted to clarify  

Before I got diagnosed I went to the doc for water filled blisters on my hands in may of
last year.  In the early Spring I am always glad to get outside, get my hands dirty, ride the quad around the fields and spray the burr bushes so they don't get caught in the horses manes & tails.  I found a new trainer for my youngest dog ( great trainer).  Got my cheapie pool up, Sold an awful witchie mare and got a great paint gelding.  My step daughter hubby and kids moved in............... drained the hottub, scrubbed and refilled, got in the koi pond to remove dead leaves & fix plants.  Cleand up my flower beds planted some annuals.  All of this is in april may june, and in the sun.................No more sun, no pool, no riding my horse, no dog training, for me no life.............Then comes 5 phlebotomies, once every 2 weeks.  Major anemia, major depression by now I want the step dau OUT OF MY house, I got no help with anything from her.  

I started my interferon/riba in Oct but I was anemic in the beginning tired, muscles sore and everything else that goes with tx.  Hubby ended up feeding my dogs and cleaning my kennel, feeding the chickens, collecting eggs and throwing hay for the horses.  He is still doing the feeding but I am getting outside and getting myself back in the swing of things. There were times that I had good days for a week in a row but there were times that I was down for 3 or 4 days.  I did sleep in, in the am b/c I couldn't sleep at night.  I did Christmas, Thanksgiving, a week over new years OK.  THose were important to me and I did cook & cleanup and all.  

I also warned a lot of people close to me what was going to happen to me.  With some it is just easier to call treatment chemo because a few people think interferon = AIDS & I don't have AIDS.  Not sure how I got hepc & people associate that with IV drug use, I have done tons of explaining and educating. I would rather do that than have the small town mentality speculate.

I guess the moral of my story is that it is doable even starting tx with not everything in ones favor.  

I am so sorry that this was so very long but I had so much to get off my chest with people who understand. I am not giving advice just telling what seemed to work for me.

Denise



Helpful - 0
443974 tn?1224589328
But most of all, if hugs were transferable to Florida and around the globe like Vermont Teddie Bears, you would ALL be getting  big snuggly New England Bear hugs in the mail tomorrow! :)   Nothing like New England for bear hugs.... sorry I am a tad prejudice there ;)
Of course intellectually I know you are all so right. It is the the  bloody emotions that get us ey? (when I say bloody I mean it in a British way, I lived in London for some time) just got the jist.... probably not the best adjective to use in our case. Sorry.

But I will promise that WHEN I am finished and have truley tamed the dragon... (I need to think of a sweet name for him/her after all it is really not his fault! And please no Puffs! ;)  Let's start a new post for the dragon's names, for those so inclined to be silly and take control at the same time! We will have a democratic vote! Unlike others in the past ;( (Before November)))))) And as a democractic vote if Puff wins he wins!!!!

Any way  after reading many people, who clear do not write any longer..... saddened me...I promise I will continue to write with as much support and inspiration and homour, I have in my little body!!!! I think that is crucial for those of us who have tamed (perhaps not slain).... (sorry I try to be Buddhist so I can't actually Kill  anything (except ticks and mosquitoes oh and and those disgusting flies....and ahhh  oh yhea  ok ok ok ....so I am really a psuedo Buddhist when it comes to certain bugs sorry....)  ... ;)  I know many of you understand!  Hey we are trying!

I do believe that everything has its purpose.... even this.... I am coming to grips with it day by day.  I just wish I was one of those old maid looking teachers with greyhair and swedish buns on each side....that the kids didn't care about or made fun of anyway!!!....Thankfully my kids love me and think I am actually "cool" which is huge!!
At their  age I had a nun named Gertrude who looked like one of the gargoils on the top of the Notre Dam , when I was 10 I decided I would alwys at least keep fashion forefront! ....times have change thankfully! I Now have a 4th grader who invited me to his 10th birthday party next year.......in Bermuda cause then he will be in the 5th grade and maybe I will be more his age!!! He thinks I'm 22,,,, God bless his soul and bad eyes!!!!    He is so funny the kind of kid you would adopt in a second if he had no parents or they were abusing him....

And mind you.... I am not just cool because he thinks I'm cute..... I like and have picked up reptiles too!!!!   Beat that other 4th grade teachers!!!!   LOLOLOLOL :)

I had Dr appt yesterday.... I was exhausted but  I came in today and felt like a rock star again....   Ms........where were you? are you sick.... what happened don't leave us again the sub was *****( That is my boy I'm talking about, we have decided which words are swears and ones that are not..... *****.... he was reprimande for!    "Suck" is one of those i don't know how to fight it cause it's on TV all the time...so that is their argument!!!!    so any one with kids.....help me on ths one!!!!  I always say it is not a NICE word to choose,,,,,,

Any way   It will tear my heart out and bring them to tears  to see me emaciated and balding....although I will still have my good fashion sense right!!!!! :)    Humour all about Humour!!!  You are right!!!!  Bless you and your sweet dogs!!!!!!!

Still debating that one.... just saw "Nims Island"....cute flick for those with younger kids 8-12   after seeing  that..... I am thinking bearded dragon!!!!
hmmmmm anyone see that connection! I know a 10 year old who would be thrilled but not understand why!!!


Sorry for bending your ears...I have little time to actually sit and write and be with you wonderful people and you all do comfort me greatly! I wish we could all get together sometime and enjoy friut smoothies alcohol free tropical drinks in the tropics one day!!!!   Maybe we will be the new lost series!!!!!     You know I am being a bit cheecky but need to be...  this week will be busy for me so I wanted to get back to all of you who were so gracious to share your experience and faith with me!

Love and Light to All!!!
Dragon Tamer....   (the almost Buddhist)
Helpful - 0
250084 tn?1303307435
....Now I measure my day by what I did accomplish, not what I didn't......
Medicmommy, I love that. Perfect for tx and every day life!

Dragontamer..... love the 'handle' also.
As Missy said, I just can't stress enough to those pre-tx to not dwell on, stress on the starting tx day, 1st dose and how it was such a relief to be started, in the fight, virus is going down! I'm a also 2b, for me tx was rough, but doable and just had to adjust my lifestyle and schedule as this was more important than anything else I 'needed' to do.
Even on the roughest days, playing with my MANY animals was soothing (helped a dog birth NINE pups on one of my shot nights!)  a friend sitting in my room 'hanging out', making me laugh was enjoyable. You'll get thru it, hopefully with little sides, tolerable tx. The anticipation is just hell, please don't let it absorb you. It's hard reading here, not having a clue which way it'll go with each of us, but as Meki said-the ones breezing thru probably don't post much. You could be one of those.

Just remember, when the fear, worries set in, this too shall pass. It's a fight worth fighting and from a fellow 24 weeker, you WILL get thru it and be so happy you did it! I am thrilled I have done it, it is behind me. I am on cloud nine ( cloud 10 when I get my 3 and 6 mths. SVR labs :) now that it's over, that worry is past, the illness is past, the meds are long gone. It's a great feeling so concentrate on that, getting it behind you.

You'll be fine, even IF rough, it's doable, if not rough....even better. Either way, all the worry is only hurting you now. I do a 'thing' for years now....if  a test coming up, stressful event, etc. I 'tell' myself....'you can worry the morning of' , why waste this time worrying, and put it aside. Not always easy, but try.

And yes, keep all humor you can, it helps so much and we get to laugh at each other here :)

LL
Helpful - 0
338734 tn?1377160168
Relax! It is really not so bad at all. I am 39 weeks into TX and am still working and travelling as part of my job. I am always able to play with my grandkids, so you'll be able to play with your nieces and nephews. The only time I'm much impaired is on the weekends after my Pegasys shot, when I tend to hibernate a little. But when the grandkids come over, I'm all over it. I have curtailed the "romping" in general, with or without the dog, but I still go out for throwing the tennis ball, her favorite activity.

You are genotype 2, so your treatment will most likely be only 24 weeks. You'll be done before you know it. Since Fibro shows little or no damage, you are correct to assess that you are in no immediate danger. You could have put off TX for a while without problems.

I can't tell you the right thing to do, but I will say that if I were in your shoes, I would start TX. If not now, then soon. You have an excellent chance of beating this disease. Not everyone starts with such good odds.

My advice is DON'T worry and DON'T look for trouble. DO stay on top of the TX and monitoring according to your doctors instructions (labs, etc.). DO ask questions about anything you are unsure of. Most of all, be good to yourself and stay/eat/drink/sleep healthy.

I wish you the best and hope you keep this forum posted on your progress. There are some terrific people here that will make the whole process much easier. Actually, they crack me up with laughter frequently. Laughter is better than a Lortab anyday! Being able to be hopeful and laugh a little is a valuable weapon against our ailments.

God bless you, and hang in there!

Brent
Helpful - 0
217229 tn?1192762404
Just hang in there.

You'll never know until you start...

For some - it's a breeze --- a cake walk.. You don't see those folks posting because they didn't have a problem and they didn't go searching out the clues to all of the side effects.

For some --- it's difficult.

No one --- not a single one of us can tell you what will happen with you.

However - most of us have made it through the TX. Most of us have suggestions or solutions of what to do --- how to help lessen the problems...

And we're always here to understand --- when NO ONE ELSE will be able to --- what you're going through.

Much luck to all of you.

Meki
Helpful - 0
415631 tn?1218247195
Well I suppose I am in the same boat as DragonTamer on this. I will be starting tx this Friday as it was just confirmed today (Monday) that the meds are at my doctor's office. I had to go thru the Commitment to Care program in order to afford the medication as I lack insurance. Unfortunately my doctor's office is a bit slow on the uptake as I should have started 2 weeks ago if they hadn't dragged their heels with this. The waiting anxiety was increased by this, but I have tried to distract myself from thinking about it by doing other stuff.

Now that its here, I just want to get it started and be done with it! The quicker I begin, the sooner its over. The rest is just fluff, lol. ;)
Helpful - 0
Avatar universal
How appropriate a handle for waging war on this nasty dragon! Today I start my 7th week of treatment...And my experience so far has been fairly typical of most...The first 24 hours -NOTHING!...Then the next 2-3 days I began to feel increasingly tired with a bit of chills, aches, scratchy throat, and headachy..(You know that feeling when you are coming down with a bug? -It feels like that...) That began to pass by day #5, with a low level of feeling a bit tired...And the cycle started over again with the #2 shot...The second week, I developed a rash from the Ribavirin, which just about drove me crazy from the itching!  The fatigue seemed a bit more persistent, and the "brain fog" (forgetfulness, brief moments of spacing out and difficulty concentrating) set in...Personally, I think the "brain fog" has more to do with fatigue than anything else...Anyhow, weeks #3 and 4, I learned how to minimize the Riba rash, and it was then my blood levels dropped enough to make me anemic...this came with dizziness, weakness, and of course, more fatigue...
In the past 2 weeks, my blood levels have stopped dropping, and though still anemic and a bit fatigued, my body has adjusted, and I am able to carry on at about 75% of what I was able to do before...It's really easy to get depressed the first few weeks because nobody understands how crummy you feel...and you start feeling a bit isolated...My husband even hinted I was becoming lazy!  (I'm having the last laugh there! To keep from getting bored, anything that is left out in the house gets put away immediately -his stuff included! Now he keeps asking,"When are you going back to work?" LOL)
This is a roller coaster ride...it's doable, and you adjust...I'm one of those that rolls out of bed at 6:30 am at a dead run, and doesn't stop til 10:30 PM...Not now...Now I measure my day by what I did accomplish, not what I didn't...A week after you start treatment, you'll be going,"Is this IT?!?" and you'll have a huge weight lifted off you...and you'll be that much closer to slaying this dragon! ((((((((HUGZ))))))))))
Helpful - 0
254544 tn?1310775732
I promise you that the minute you do that first injection there will be this tremendous rellief of the anxiety.  Believe it or not you are going to feel totall relieved to get the show on the road.

I have not had a cold or sinus infection since i've been on this round of treatment and I didn't have one the entire 48 weeks of round 1.  I hear of a lot of people with the same claims as mine.

You probably won't be able to go 110 miles per hour when it comes to anything physical but you are going to find that you can do more than you thought you would be able to.  Maybe at about 60mph instead.

The hair loss is more of a major thinning, it's not that bad and it will grow back.

Good luck to you.

Mouse
Helpful - 0
443974 tn?1224589328
I know it will be worth it...  I want to live!  And by the way your hair does look beautiful!!

Just having one of those days....counting done to the first shot....possibly next week... thinking of my little students and what they will be thinking when they see their favorite happy, healthy teacher start slowing down. I want to avoid that more than anything but Doc thinks I should not wait till June till school gets out.... I'm so torn about that.

Any way thank you!   And Stevie if your out there thank you too! You wont believe this but we actually know eachother from the the old Ratskellar days in Kenmore. And  Joe and I used to Jam in Harold Parker....   Long time ago!   Your open sobriety  has been a great inspiration to many kids starting out!  Wish we all knew then what we know now ey?
Well  my plan is to      "MAKE IT"   !  :)    
Helpful - 0
179856 tn?1333547362
Treatment is doable so stop worrying - the goal is to get rid of this crappy disease and you will do it!

We were all anxious before we started...but time went by and shot after shot we count down to zero - in one way more than another and then voila it's over!  AND you have SVR and are cured!

Make sure during treatment you make time for yourself...that you rest and buy yourself little treats (like ice cream!) for yourself to enjoy.  Do things like "day of rest" where you stay in bed all Saturday long (that was my night after shot night) and other things you will never get the chance to do again in the 'real world'.

I lost about 75% of my hair but guess what - it's all back healthier than ever.  During treatment I bought a whole bunch of wigs and did the best I could to always look happy even when I wasn't. You would be surprised at how mentally you can psych yourself up even though physically you are just so tired!

I had geno1A and geno1B.  I treated for 72 weeks and am now post treatment 15 months and SVR.

Was it worth it? OF COURSE!

Good luck!
Helpful - 0
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