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Week 16

Apr 17, 2009 - 6 comments

Just finished shot 16. I finally gave the 270 mcg in ONE shot this time rather than the two last week. It's still incredibly putsy and I wonder just how sterile I'm keeping everything messing between 3 syringes. One a positive note, I called my pharmacy to see if my meds were ready for pick up and they were...2 BOXES !!!! They must have approved the higher dosing when my Dr. ran it through last time...UN believable! Thank goodness my deductible is already met because the 2 boxes came to $6000.00 for the month!

This has been a much better week. Fatigue is still a major player...and I expect always will be to a certain degree. I had trouble with the 20 mg. of Celexa, so tried cuting them in half, and it is MUCH more tolerable...no more nausea a nd headaches. Had to switch to taking it in the morinng because it was starting to keep me up at night instead of tired. And I didn't want to have to add a sleeper on top of it.....

I been walking more each day and getting my strength back from a couple weeks ago. Still a slower pace, but I'm out in the world again and it feels good. I'm going north to hang out with my son tomorrow. When I was feeling so poorly, I didn't want to stray far from home, but I feel better when I can get a change of scenery and and experience life above and beyond tx and work.

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Avatar universal
by Tippyclubb, Apr 17, 2009
I am glad to read you are feeling better and getting out.  It does the soul good to experience a small resemblance of a normal life. Let's us know there is hope we can return to normal.  Yes, I know what you mean about not wanting to stray far from home.  

I was reading some of your prior journals and just wanted to know if the anorexia thing has left you?  Are you eating now?  If now drink Ensure to make sure you get the nutrients you need.

Take Care
Tippy

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by justme53, Apr 17, 2009
Thanks, Tippy.....I am eating much better, still no cooked meats or salads because it's hard to chew with the remaining mouth sores, but I'm off pureed. Did bring out my juicer again to make my green drinks again since the veggies are hard to get down and I think that has really helped. Hopefully some of the sx that you got hit hard with are letting up too. I always wonder which new one will be the "sx of the day". :-) Never a dull moment, eh?

Take care, Pam

Avatar universal
by portann, Apr 18, 2009
So glad to hear you're walking outdoors and that you've gone on a mini-adventure to see your son up north.

I only made a couple of out-of-town trips during tx but overall, they really improved my outlook.

On one, I watched a ski jump competition from a chair at the bottom of the hill and felt overwhelmed by my emotions and the sunny day. The snow looked so fantastic. I actually started to cry.

All my very best wishes. Please take good care.

Port

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by justme53, Apr 18, 2009
Thank you, Portann.....

It was a nice day visiting Mitch and although I'm tired now, it's in a good way. I find myself getting overwhelmed emotionally at gatherings of family and/or friends and getting very teary. Especially when saying goodbyes.

Hope you start feeling better soon after EOT and get your strength back to do the things you love.

Take care..........

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by tracyhopkins7, May 28, 2009
Am I correct when i read that you are stage 4 cirr? and you are tolerating the meds no problem?  My levels have dropped low wbc 2.2/hemo10.6/rbc 3.27/hematocrit 31.4 and platelets 80 - my nurse practitioner has made me come down from 1200 riba to 800/day and disc. my interferon completely until I take procrit and neupogen to bring #'s back up.  I started at 700,000 viral load went to 3600 and at week 12 i am at 99.  she said that because i still have detectable virus (99) that now i only have a 1% chance of EVR - feeling pretty devastated considering going for a 2nd opinion - Can I ask did you really double up on your interferon?  What type do you have? I am geno 1.  thanks for your info. and best wishes.  Tracy

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by justme53, May 28, 2009
Hi Tracy,

Yes, I am stage 4, compensated cirrhosis 1a. Started tx Jan 2, 2009 on 2 shots per week of Pegasys (360 mcg total) and 1400 mg Riba. Tolerated well the first 8 weeks then my numbers started dropping, especially the hemoglobin. They dropped my doses to SOC (stadard of care) for 2-3 weeks because of emotional issues, then upped it to a shot and a half per week and 1200 mg for the duration(72 weeks) as tolerated. No rescue drugs yet except Celexa for mood swings, but my hgb rides in the low 10's now....low but better than in the 9's when you seriously feel like craap!

They said my best chance was to double up because of the cirrhosis and insulin issues. I have off days, to be sure, but I think I can make it another 50 weeks. I'd really rather not have a repeat performance, ya know?

I'm glad to hear you are going for a second opinion. 99 is SO close! A hepatologist will treat you more aggressively which, at a Stage 4, I think gives us our best chance of eradicating the virus from our body. Cirrhosis prognosis used to be so bleak, now we're seeing that we CAN SVR and that our livers can begin healing. That hope keeps me plugging onwards.

Best of luck to you!   Pam

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