Medicmommy, Imr28, Wassup...others

[Lady Lauri]

Haven't seen several on here (some sort of newbies, older newbies:).
A few on tx. Just wondering where, how you guys (gals) are??

LL

[Wassup]

Hi Cutems, The Butt Kicken was supposed to be US- doin the kickin, Right??? I just thought I'd check, since most of us seem to be gettin our own hineys kicked, instead. OK:  Here are a few good things about being bed bound:  
1. You don't have to make the bed.
2. Should the opportunity for a quicky arise, there ya go.
3. No big decisions about what to wear: (clean? comfortable? done).
4. It's always a soft landing, if you fall down.
5. It's a little easier to keep track of yer stuff, (how far away could it get?)
I have more, but my head is starting to pound.  Be well.  Give hubby another hug from me. and an attaboy.  What a gem you have there.  LOZZA Hugaroos to you too.  I'm soooo glad you're nearing the end of Tx.  Your poor little frame as taken so much pain and grief, you deserve the rest of your life pain free.  If only I could make it so by prayer or good wishes, it would already be that way.  Luv, Bevy    

[Mikkimoe]

Hey girlfriend...when did you start tx?  Where have I been?....oh yea lala land........good news with me - still UND bad news sx are kicking my tiny hinny totally....feel like I'm in quick sand with in the sahara desert with the sun baking my brain....nice descriptive huh...oh no don't cry it's OK, I'm almost getting use to it  :-)

The best news is I'll be done in a few months and can come take care of you.

((((((((((((HUGS))))))))))))))))))

mikkimoe

[pKinCA]

Hi BV!!

Hey, no worries... I know firsthand how difficult it is to keep track of things when on tx!  "Fluff" is such a perfect description :-)  I would never want anyone to feel obligated or pressured to communicate, especially while on tx -- it's so weird how just keeping in touch can become so complicated!!

The emotional thing is strange too, isn't it?  I understand!!  

How are you managing so far?  Sounds like you are definitely having some sides, but because you're humor is still well intact, I'm thinking you're mostly doing "ok" -- hope so anyway!

Thanks for thinking of me!!  Keep in touch when you can... I read the forum every day still...

Your pal, pK

[Wassup]

Hey Sweetums, I'm soo sorry you've had such a rough go of it.  When I read about some of you poor Darlins' and your SX, I want to cry for you.  When did I turn into a crybaby? I can hang in there for me, no sniveling, then some stupid commercial will catch me off guard, and I'm whimpering like a snubbed teenage girl. Whoah horses.  I can't believe I never answered your not til now, But since it was 'blue' not'purple', I knew I'd missed you.  Sorry about that!! My brain did some flatulating BEFORE I started TX, so I have nothing to blame but my own 'brain fluff'.. Love an hugs , BV

[fuzzy1dar]

I was on Vicodin when I had my accidnet and crushed my ankle....I don't much care for it either....makes me cranky and with riba rage oh boy look out!  lol  Tramodol (Ultram) is a synthetic pain killer much like V but no narcotics. It takes the edge off but need something stronger for when the pain gets too bad!
I also smoke even though I've had pheunomia twice....not very healthy but can't seem to stop.
Yeah it's getting close to the end of the line....8 more wks to go!  I think I'll make it! I think I'll make it!  lol  Like the little choo choo in the kids storybook goes.

take care....Darla

[Lady Lauri]

  I also , many do, had the 'Riba cough'. tho when they'd do a pulmonary test, I'd rate over 100% ?( 110% and I smoke!)
  I'm going to have to check out the Tamadol, or something else for pain, I've used Vicodin or 'Vicoprophen (sp) thru tx but won't do many as their narcotics, plus I don't like them, how I feel. Just takes the edge off when bad-my son gave me h*ll yesterday as I won't take as prescribed to be out of pain, suffer instead, lol.
   Don't let my post issue's scare you! Everyone is different. Some feel better right away and keep in mind I had to reduce also, etc. These drugs affect all differently.
  You hang in there, it'll be over soon and YOU'LL be UND :)

LL

[fuzzy1dar]

Thanks for the encouraging words...I have been quiting off on on thru tx but when its time to take meds I do it.  I will most likely make it to the end....I'm taking Tramadol for pain but I think I need something stronger. I see the doc on tuesday to discuss this and get the results of my chest xray.  Been having allot of congestion lately.  Sorry to here you're having post tx issues....and I thought when its over all the sx are over too!  Oh and congrats to you for making it to the end and remaining UND!  

best wishes.......

[Lady Lauri]

Sallyo. I remember you also, from this past year.
Sounds like you've had a rough road, sorry for you in that. Between TP, treating, re-treating, I'm sure it's been awfully hard on you. The long term effects are a worry, even for me with 'only' 24 weeks on these meds.. 11 wks. post and the muscle pain, fatigue is still qoing strong, so those thoughts are seeping in more. In all my researching, I stayed away from the long term effects a bit, didn't want to know as I wouldn't have tx'd probably. I like your plaque from your friend, very true. Hope you have many feel good days ahead.

Fuzzy, hang on, a few more weeks, I was 'quitting' at 16 wks., than 18, than 20,lol.
Made it tho! The leg pain , for those that have that, is pretty bad. It'd switch thru out my body but always the worst in the legs. Can you take anything to help it?
8 more weeks to go, you'll get there. The end is so close!

MikeS......"I didn't feel much better than I felt when I was on full doses."
Scary that is! Me either in reducing thru tx, felt very little difference. Made me wonder just how would I have been on the full dose's the whole time. Even half the Peg kicked my a*s.

Best to all, LL

[mikesimon]

I remember you quite well Sallyo. As for me,I am doing well. I am still undetectable and I feel pretty good. There is always something going on with me it seems but overall, I am doing fine.
I sympathize with your maintenance routine. I was on half dose Peg and very low dose ribavirin for 6 months and, aside from not having hemolytic anemia, I didn't feel much better than I felt when I was on full doses. I wish you the very best. Good luck, Mike

[sallyo]

The maintenence drugs I referred to are for the hep c.  I have not cleared but once and then it came back.  With the Peg and riba my enysmes stay normal.  The anti rejection meds of course are for life. Hope you are well

[IAmTheWalrus]

" I am told that I may be on maintenence drugs for the rest of my life as I am post transplant"

I am curious if you are referring to the anti-rejection drugs for the transplant, or maintenance drugs of some kind for HEP C?  I was under the impression that all transplant patients were on AR drugs for life?

Hope you are well and getting better all the time.

Brent

[fuzzy1dar]

I'm still here....been having a rough ride the last month so haven't been posting much.  Glad to here you're all hanging in there!  Going on my 16th shot tomorrow...2/3 of the way to the end of the line.  Hope I can hang on to the end...somedays the pain in my neck and legs is just too much to take.  I'm so glad I found this forum....all of you have a special place in my heart!

[sallyo]

Thanks, I was afraid no one here would remember me. How are you doing?  Any problems? My fears have changed to the long term affects of the drugs.  I think they include lupus, arthitis and various cancers.  I try to put all of that out of mind but it resurfaces especially when I'm having a down day
  My friend gave me a wall plaque that I try to read everydau
     Yesterday is history, tomoroow is a mystery, today is a gift.  Pretty good !!

[mikesimon]

It's nice to see your name. I think about you and wonder how you're doing. I am happy to hear that it's getting easier for you. Good luck to you, Mike

[sallyo]

I don't post often I I have been watching everyones progress as well as their problems.  I have been taking riba (low dose)and Peg with several dosage changes and a couple of complete halts for over 3 years. Takes a long time to fine tune and know your body.  As long as my H&H stays above 10, I can function pretty well.  The difference between 9 and 10 is like night and day.
  For me it is the Peg that causes the shortness of breath and the digestive upset.  Riba I don't feel but it will drop my red count very quickly.  I am told that I may be on maintenence drugs for the rest of my life as I am post transplant.  It really has gotten easier.  My best to all of you.  Keep fighting

[Lady Lauri]

How are YOU doing with tx? Haven't seen too many post, so hopefully ok.

LL

[Trish77]

Good to hear from you.  I'm sorry you had to go off treatment and that things hit you so hard.  Here's hoping that UND holds!!  I'm not RVR but close enough .. I was still detectable at 4 weeks and UND at 6, so who knows...could have cleared anywhere from 4 weeks and 1 day to that 6 week mark, eh?  Do stay in touch from time to time and keep getting better.  :)  Let us know how the labs go as you get them, if you don't mind.

Take good care, pK.

Trish

[medicmommy]

Hey, if you didn't know...it takes 3-6 months to clear the riba from your system...I'm crossing all my fingers and toes that you remain UND forever...My prayers are with you...(((((((((((((((((((((((((((((((((HUGZ))))))))))))))))))))))))))               ~Melinda

[pKinCA]

Hi Everyone...

I'm still here, hangin' around, reading mostly...

I've been off of all meds since the end of March as I had horrific reaction to tx that was unlike anything I've read on the forum.  I'd tried to reduce riba and it seemed to be working for a week or so, but the sx came back worse than ever so I had to stop taking all meds.  It took about 3 weeks for the sx to go away completely and during that time I was really terrified because it seemed like I was getting worse, not better.  Had I not improved, my dr was going to do brain scan next, as most of my sx were neurological in nature.  Fortunately, I did get better and this was not necessary!

To say I'm disappointed is a major understatement because I really really did try hard to get through this... and, my 4-week VL was UND so most likely I would have reached SVR had I been able to hang in there... :-(   Gonna test my VL again at the end of June which will be 3 months since end of tx.

Now, am feeling almost normal, but I do get winded and tire easily still... Trying to re-enter the real world a little bit more each day!

Thanks for asking about me!  I'll keep in touch from time to time...

pK

PS  Everyone who started with me seems to be RVR (great news!) and doing mostly ok... rooting you all on!!

[Mikkimoe]

Isn't that what we called ourselves - gee I guess it's a good name guzz it's kickin our butts!!!!

Well I'm sorry to say - I'm NOT doing better. The hydration was good - helped with the migrain -  but the extreme fatigue and shortness of breath and heart issues worsened. So bad that I can't even stand without almost passing out....so completely bed ridden.

Spoke with Doc again and he say's since my labs are OK -  it's the Peg causing the problems -  With the effects of the Enbrel it's just to much for my massive 101 lb frame. He is going to have me reduce it by about 1/3. He says to stay with the Riba dose for now since it is weight based and if it doesn't get better I'll reduce it as well. The good news is I'm 2B and was UND at 3.5 weeks - bad news is I'm barely 6 weeks in.

Anyone else with the heart issues? Pain, tightness, can't breath, palpatatios, beats out of your chest constantly and horrible Tinnitis.

I also have all the other fun things - mouth sores, rash (like mouth sores) and here's the worst thing - my tounge stuck to the top of my mouth when I sleep and it actually peeled skin off of it when I woke - needless to say the only thing I can consume is liquids (protien drinks and vanilla yougurt) ouuuuchy

Glad you guys are here - it would be a cold lonely bed without you - in a literal sense that is.

PS there is another thread that talks about reduction in meds: http://www.medhelp.org/posts/show/515379

[Lady Lauri]

I'm so glad all are 'getting' together here :)
PKinca is okay, PM'd me back yesterday. She'd had some reduction in tx, and it hasn't gone well but I think it's best to let her post the details. She is ok tho.

Being able to be alone so much thru tx was a blessing for me and your right Trish, no matter how we try to explain how we DO feel, they can't understand without having been there, even tho they may want to.
One thing! On the running.... I also am a non-stop, never sit down until bedtime woman. I suffered bad when I even tried to do that. I also got a lot of advise towards not over doing, your body needs what little it has with these drugs to fight the virus and to just keep going. What 'fuel' we use is not replenished as it normally would be. Just a tip. To quote a friend, it's like an energy savings account, the more you use, the less that is left in bank. Yep, and you soooo pay the 'tx piper'.

Imr......"Believe it or not, (and I'm sure you will!) it almost seems like too much work to stir it up some days".......
Oh I well know what you mean :) Many days I'd lay here, actually hungry, and just not have the energy to get up and make a smoothie! Not even cook, just a smoothie! I was lucky tho, one of my sons was here a lot and always made me something when I wouldn't leave the room all day. Of course, another son would do that too, but he is an AWFUL cook,lol. I'd eat -soon as he wasn't looking, the dog got it,lol! @ week 7-10 ish, I'd have starved if not for them!
I am so amazed by you girls working! I did do some work at home, and also tried to do all the 'keep the brain active' tips, but get up , go to work.....not.

Medicmommy....as a medic :) you know 9.4 Hgb is pretty low. If mine went below 10, in the trial, I'd be taken out of trial (no rescue drugs) so I had to reduce meds. At 10 Hgb I'd lay in bed all day, stare across the room at the bathroom until my bladder was going to burst! Wobble there and wobble back to bed!

Keep up the virus kickboxing ladies :) Wishing you some of those feel good days.

LL

[IAmTheWalrus]

Kimmy and Mikki - Congratulations on the rapid resposnes! Sorry about the side effects, especially the migraines. I get those also. I take Imatrex, which generally works. But it works best if I take a Lortab with it as it helps with relaxing and deals with the muscle aches, etc. I get a fairly good night's sleep and the migraine is gone. Sometimes I have to take a second Imatrex dose (50 mg). - works for me.

Best of luck to all of you with these bad SX.

[lmr28]

I am so pleased to hear how everyone is doing.  Even the hard stuff...
I wonder if my naturally LOW blood pressure intensifies the fatigue, dizziness, HGB sx?  I feel like I should be hunched over an oxygen tank just to get from the parking lot to my classroom!  I'm 38 for the love of Pete!  I used to run 3 miles!!!!  (I agree Trish- that is something that is easy to miss, hard to replace.  My advice, for what it's worth, is WAIT.  Overdoing it is such a risk and paying the piper is just TOO painful!)

I am working 3 days/ week.  I actually set a cot up in my "seclusion/time-out" room!!!  I lie down when the kids are out for PE or lunch, when my para takes over with them.  It feels weird, but gets me through the day on the rough ones.

LL- I have tried Carnation Instant Breakfast, and can usually get it down.  Believe it or not, (and I'm sure you will!) it almost seems like too much work to stir it up some days. PA-THE-TIC!  Animal crackers are also tolerable.  Saltines make me sick, for some reason.  The muscle pain has set in for me, as well.  I was concerned that it was "abnormal" so I'm glad to hear it's not.  Joints are so sore, as well.  Feels like I'm being pulled apart!  I just hurt everywhere, all the time.

Mikki~ I vote for the ebay med exchange!!!!  That would certainly make my life a whole lot easier!

Lastly- I don't know what is typical for the "riba rash", and I lotion/oil/moisturize like a mad woman, but I have a new skin "condition" that is really painful.  I get these little blisters that then split down the middle and become very, very sore.  Mostly on my hands, but now showing up on my legs, and even a couple on my arms.  They remind me of the mouth sores, in a way.  (which, BTW, are still coming and going frequently.  I now have them in my nose and even one ear, just for extra fun!)  Maybe some are more prone to this than others?  I just haven't heard this blister-type thing mentioned before.  (that I remember anyway!)

Pk~ do post and let us all know how things are going for you!  It's just not "the gang" without your input!!!!!

It helps so much to make this connection.  I will do better at staying connected again.  I think I just let it all get me too down.

((((((((((((((((((((((  hugs  to all  ))))))))))))))))))))))
~lorraine

[Trish77]

I know...it's like "hail, hail, the gang's all here!" ... we all started into this about the same time.  

I'm doing okay.  My ANC has stabilized and my HGB floats in the 10.** so it's tolerable.  I've totally adjusted how I do things day to day and for a person who used to run to avoid taking stairs sometimes is a big adjustment but you do what you gots to do.  Having said that, I'm still remarkably busy with many pursuits, all of which require brainpower more than physical energy and my job is analytical, so I think I'm able to hold the brain fog off to a great degree as a result because my brain gets a constant workout.  I miss the running though....and I've been thinking I might just take a test run and see how it goes.  Just maybe.  Scared to death I'll wear myself down too much and the virions will come back though...so I'm not sure what I'm going to do with that, no idea if that's even a rationale thought.

I deal with the fatigue when it hits and I deal with the nausea .. I eat alot of noodles and soda crackers, that's about all I can rely on .. and I eat licorice here and there too but soda crackers seem to work best.  Tomorrow I'm making steak and eggs for breakfast and my son is coming over and I'm going to eat them, dammit!!  :)

lmr..I get what you mean about it being worse AFTER you eat .. I feel like today is a good eating day.. I eat.. and then I pay for it.  Sometimes worse than others.  Not losing much weight though so it can't be all that bad, eh?

We'll all hang in there together and get each other through...

another one missing though... pKinCA... I haven't written to you in awhile, I'm having a harder time keeping up with people as I only have so much time between rest and study periods and trying to make sure I have enough energy to work through the week...just the same...if you're reading this, please let us know how you're doing....and hope you are well.

Take care all.

Trish