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250084 tn?1303307435

Week 10 post tx & hello to all

  Hi all! Haven't been on much. Trying to get back to work, life after tx, etc.
I have been briefing thru post, checking in on here, keeping in touch with a few posters a bit.
Waiting on a VL test any day now. Did an extra one as I was there for the pneum.  last week.
Shands doing more test on my lungs as pneumonia not clearing, but that’s good news as no signs of anything worse in there in all the test.  More good news is still all free thru trial, except ER. I am, however, feeling MUCH better now, into week 10 post, even with the pneum.!

    To brief newbies….Geno 2b, 24 weeks tx.  80% down thru it, stopped work week 5.
Muscle pain/fatigue was intense the whole tx. My bed and I have a new relationship now, my mattress has had it with me on it full time, lol.  While 24 weeks is the Hep lotto, it still isn’t easy!! But thankful it was shorter!

  Just getting back to work (the physical job) P/T. Did do paperwork area’s of jobs thru tx, not to well tho -deciphering 150 posty notes all over the house got difficult! First 3 weeks off of tx were some of my worst!   Emotions were just all over the board!  All has slowly gotten better. With no sugar coating, I was quite surprised how coming off of these drugs went, has been. Your just chomping at the bit to get out there again, get back to normal. Than it doesn’t happen that way! While geno 2, 24 weeks, UND week 4, all test and chances are great and intensely grateful of all that, it is still frustrating in different ways for each. 3 weeks post, abscess tooth, sick, 8 weeks post got pneumonia, very sick. Muscle pain still bad, tho much better. Dr. insist it can be 6-12 mths, before ‘back to normal’ and to stop trying to go back to my normal pace, which was quite busy, hyper, non-stop. (A friend went with me last week, ‘told’ on me,lol! He said ‘knock it off’!)

  For any coming off of tx….don’t expect to just jump back into routine. Some can, but if you can’t, go with it and heal up!  Over doing kept putting me back to bad shape. I learned! (same as on tx) When your emotions go haywire, it’ll pass. Just don’t get discouraged as our bodies have been thru hell and have a lot of healing, adjusting to do. Be prepared for that and to give it more time.
  All on tx now…..I am soooooooooo rooting for you. Hang in there, hold on, TLC yourself as much as you can and if your ever ready to quit, come here to the forum. They (we) will all push you on. In comfort ways and ‘buck up’ ways. I needed them both!  You’ll get thru this. Your 'last dose day' will come and it’s a great feeling!
All deciding on tx, just starting with bx or the news……ask everything, learn everything and make your choices for YOU after that. All views and opinions on tx are here to help you decide. I wish you the best in however you decide for yourself. It is so devastating, scary at first, the more you learn, ‘talk’ here, trust me, the easier it’ll get to handle all this. There IS life with Hep and after Hep.
  There’s a few that are finished and decided to get back to life, far away from Hep C, tx, the whole ordeal and that’s what they need for themselves. Everyone here whether it be thru tx and gone, or before tx, on tx and here to stay gives a lot to the forum and others in however long they are here.
  And last on this long post …..so much thanks to all you wonderful, caring, knowledgeable, funny, giving people that help sooooo much. All the many different personalities, opinions, even debates makes this a great place to be sick :)

While this sounds like a ‘good bye’ post…it’s not!  All on tx usually post more, on here more. I will continue to lurk within med help!

Best to all, coming, going, lurking, on tx, off tx, thinking about tx and also those here supporting their loved one thru tx,

LL
11 Responses
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190885 tn?1333025891
thanks for keeping us posted...good luck with everything...billy
Helpful - 0
439539 tn?1233465815
I just read your post and your UND !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You Rock ! You've knocked 'em out, now holding your hand high is just around the corner. WINNER- WINNER-WINNER ! That's Awesome. I know all my life I have always worried about others and that's what we are made of.Now besides the family, kids etc., it's time for you. Enjoy it a little.I'm glad your bucket is only half full.Mine runneth over.Enjoy your good news and take care of you.If you don't take time for you, you won't get over pneum., like you should.You've been thru hxxx and back and your body needs rest. Take a shower, put jammies on, get a book, watch a movie, get a soft blanket and RELAX ! You'll sleep better tonight. Nice talking to you but I have to run and pick up kid from soccer. Tammy
Helpful - 0
250084 tn?1303307435
What if you don't feel like your bucket is very full :) ? Like, only 1/2 full.
I get it tho, a hard habit to break is jumping to help, take care of something. (while not really able to even jump yet.)
Learning to say 'no, I can't do it' is getting easier for me. Learning that my bucket is just as important is also new to me.

Thanks, LL
Helpful - 0
439539 tn?1233465815
I sent you a note but I looked at my sent thingy and it said, none. I am a geno1a , 48 wk. weight based treatment.My daughter had pneum. last winter and it takes time to heal.Lauri when your 80 yrs. old and look back and say, "when I was done with tx and wanted to get on with my life and do it all, why? I should have taken the slow road ".Take your time, your body and brain has been through hxxx and back.Here's a short story and I hope it helps you. It did me.If God reached down right now and give you a bucket and proceeded to give everyone on God's green earth a bucket.He put problems woes and worries and filled all the buckets FULL. What would you have?You'd have your very own bucket full of problems woes and worries.Take care of emptying your bucket first.It may not make sense to you now but the next time someone is telling you about their problems , you'll be able to look at them and think your bucket is full but so is mine.Take care of you.Have a SLOW day. Thank you for your kind words.It's so good to know I don't have to lean on my husband every time I have a question.      Tammy
Helpful - 0
250084 tn?1303307435
Forgot my own thread. You'd think I had brain fog still :) As I am so happy with latest UND labs, not complaining onstill  feeling crummy a lot. Just how it's going for me coming off of these lovely drugs! Better by the day, yet still feel that 'toxic' feeling a lot.

Elaine...just remembered I forgot to reply,lol. (the ride!)
And thank you. How is Nick doing?

Beamish.... where you been ?? You said I would, I had to! (kick virus butt!)
Feeling better daily, Thanks

Susan, we're on for after your app. , I have to know how it goes and I'm no more -heavy-brain fog this time! (just the normal left:)

Wyntre....8belles was soooooo sad :(, BUT....I slept thru that race! Kind of glad as I'd have been bawling (I cry tooo easy). The guy I ship horse's with-he's huge in racing , training , breeding....trained the rider of Afleet Alex (Jeremy?) to ride years ago, kept calling me over and over and I slept thru it all! It's just awful :(
  You have MUCH more tx to get over, heal from than me! Hoping it goes well for you. I gained weight on tx, a little, but lost 10 lbs. since and yep, it's more muscle loss and the gain was fat...dammit! We'll build back up, right now I'm feeling like jiggling jello!
(and a whole 128 lbs) And ladies, that wonderful side (ONLY wonderful side!) of breast increase, it's gone now, with that 10lbs. That just isn't right :(

GSD....I just replied on your thread. I'm mad at your husband for not understanding what this put's you thru more! It's hard!! I also still have 1 good day, 1 down, etc. It'll pass and getting better. I'm (we're all) just so ready to get up and go when we're done! Tell the tax lady to google Riba rage....she'll leave you alone :)

TeeVee....WOW! Happy your done soon! That's great! Your a tougher cookie than me, I'd have dropped out in 48 weeks. You did good :) Be waiting for all your UND post too!
In that trial I drew the SOC, not the Albumin-trial drug-and glad as they are having some serious lung issue's with it (as I have pneumonia still, had my 3rd xray, pulmonary testing today! Also a CT 2 weeks ago!) But they are really paying attention to any lung problems. Did she do the Albumin or the SOC? And nope, no rescue drugs, tho hearing about them, not so upset on that now. I'll be happy to PM her, talk to her anytime. Good luck coming off of tx, go slow!
Peace and love back at you.

On to healing, which means I really should be sleeping at 1:45 AM!
I just never even make it over to the medical side of this forum!

Thanks all, happy healing, LL









Helpful - 0
250084 tn?1303307435
I have replies to each of you!! Gotta run for an app. with a GP.

Feel sickly today (over did it AGAIN) but don't give a sheeeeeet as still not detected :) :) :)

Back later!!

LL
Helpful - 0
Avatar universal
I am so happy for you as you have endured so much while on tx and post tx.  You are one 'tough cookie' lady!  I really enjoyed ready your post and caring words or wisdom.  I will be finished my tx on Friday (48 wks) and am so excited my mind is ahead of my body.  It is as if I am off tx now and just want to get everything done around the house etc.  It's all thoughts and no action right now.  I will try to chill out and take it slow.

A friend of mine was on the same trial as you and it is very good news knowing how successful the meds have been thus far.  I told her to contact you when I read your profile and saw that you were on the Albumen trial.  It has been difficult for her as she wasn't allowed rescue drugs.  Did you take any rescue drugs?

Please keep us posted ;-)

Peace and Love to you!

Trish

Helpful - 0
475300 tn?1312423126
I am 7 - 8 weeks post tx and still have 3 - 4 awful days a week and the other days are playing catch up with my work so I'm not really getting ahead in the scheme of things. Hubby is having a hard time beleiving that it is lasting this long.  The good times I am a moving machine and don't stop, like yesterday I put an asparagus bet (lots of work) I'm paying today.  It is hard when one's job is for themselfe. paperwork, taxes, payroll taxes and dealing with customers.  I pup paperwork in the right spot and then I can't find it, boy does he get mad which makes matters worse.  I try really hard to act like I remember everything but I don't.  I need this to go away, the tax lady is getting irratable.  In 15 years I have never been in this position with the business.  Brain fog just sounds like a cop out to someone who does not know, or memory loss sounds like an excuse.  But it is the truth.  Hopefully it goes away soon.

Denise
Helpful - 0
173975 tn?1216257775
Laurie,
I read your post about still not being back to normal physically and how frustrating it is.  Thanks for posting.  i need a reality check, too.  While I am MUCH better, 13 days post meds;  energy levels much higher, mood much brighter, tolerance level increased, I can FEEl the back thigh flab, which I NEVER had before, and can actually pinch the skin between two fingers.  UGHHHHHH!!!!
Funny thing is i weigh LESS than before TX, dropped a size or two, and still feel the excess flabbies.   So I'm planning on joining a gym within the next two months and try to slowly build muscle again.  (And i HATE the gym!!!!!)

Other than that, I have my fingers crossed for my 4 week, May 26 post TX PCR..
Keep us posted and drop a note now and then to let me know how you're feeling.

PS - the 8belles tragedy had me in tears for days.  i will never follow horse racing again.  :-(
Helpful - 0
Avatar universal
Hi there.  I'm proud of you for hanging in there and not giving up!  That's the key to all of this cr*p, you know?   Just putting one foot in front of the other, not looking back and questioning yourself and looking forward to the day of wellness.  That's all I've been able to do.  I'm still in there, pushing forward to that day.  I hope you're feeling back up to par soon.  If you're up to it, I'll connect with you in about a little over 2 weeks when I come through your town on the way back from my appt.  I'll keep in touch.

Susan400
Helpful - 0
Avatar universal
Hello lady, i am v happy to see that you are done with the nasty meds..sorry 'bout yr ongoing post-trx traumas...this too shall pass..take care of yurself,easy does it and CONGRATS.!...yu kicked virus BUTT
Helpful - 0
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