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Post tx update

Aug 21, 2008 06:47AM - 5 comments
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post tx

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update

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sleep



I finally received my EOT test results after waiting 5 long weeks!  The nurse at my doc's office refused to give me a copy or tell me the results of the VL/CBC test until the doc read it. She told me I didn't have a right to my medical records! Well the doc was on vacation and nobody read my labs for over a month.  I think something is wrong with this!  Is this neglect on the doc's part? I wonder if anyone would have read the report if I hadn't ensisted on seeing it.

The only reason I did get my results is that I sent them an official looking certified letter requesting my results under the California Health & Safety Code Sections 123100-123149 which stipulates that they have 15 days after the receipt of the letter to get my results to me. To my surprise the doc's assistant called me two days later with a big fat appology and my results.  

Yay...I'm still UND!  It's been a long rough road on tx but well worth it when I heard that one word!  My WBC/ANC are still low as of 5 weeks ago, however I've been off tx for that long so I suppose those numbers have come back up on their own.  My HGB after taking procrit towards the EOT is the highest its been in 6 months at 11.0

Funny thing, I thought after I was finished with tx I would feel better right away. It's been 5 weeks and I'm still trying to get back to my old (and I do mean old after txing for 6 months) self.  I don't suppose I will ever be or feel the same!  If I could just sleep thru the night or at least some of the night I would probably feel so much better.  The insomnia is driving me crazy. I've had it all thru tx....when will it subside? I'm getting really tired and having problems keeping up.

Some of the other post tx issues I have are: hairloss it's still falling out by the handfuls, terrible pain in my muscles, bones, and joints, the insomnia of course, restless legs, and night sweats. I wonder if tx has sent me into an early menopause.

It's 4:45 am and I have to get up at 7am to go to work,  hopefully I can sleep for a few hours.

Comments
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by Kristina538, Aug 21, 2008 07:05AM
Congrats on the UND - that's FANTASTIC!!!!  

Don't expect overnight miracles with feeling better, but DO expect it eventually.  I believe they make folks wait 6 months before commencing another tx and that it so that their bloods stabilise.    Did your thyroid get affected during tx??  I'm sure everyone expects to feel fantastic straight way and it must certainly be a psychological plus to stop taking the meds;  I understand that folks are made to wait 6 months if they have to tx twice, which probably says something for the length of time it takes to fully stabilise.    It WILL happen - baby steps and BIG congratulations...

by Kristina538, Aug 21, 2008 07:06AM
Fuzzy - I don't know if you understood a word I said above, but I meant "congrats - I'm sure you will eventually feel GREAT". ... I'm off to bed (hehe)

by child24angel, Aug 21, 2008 07:37AM
Congrats Darla !! hopefully everything will get better day by day for you.
Hugs
Elaine

by Deb_c430, Aug 21, 2008 08:53AM
Super Chick!

You rock!  Handled Docs office with awesome sense of legalise, you were perfectly right!

i am so glad you are still UND, YAY!

I think Hep C and family gentics sent me into early menopause, before I started txin. There are some studies, though few and far between, on the effect of  liver disease and hormones.

Hang in there and give it some time,  

So proud of you super chick!

Hugs

Still boxing Deb the destroyer!

by fuzzy1dar, Aug 21, 2008 10:29AM
Ladies, sorry about the whining...I know it will take time to recoup from tx!  I do feel so much better at 5 weeks post.  I guess the insomnia gets the best of me sometimes.  I do try to be optimistic and put on a happy face..one foot in front of the other and trudge onword!

Kristina, no I don't believe my Thyroid was affected from tx.  I had only two monthly cycles thruout tx, I'm thinking the meds are messing with my hormones, I have not yet had a cycle post tx.

I did understand what you were saying and thank you for the congrats!  You will be there soon too!

Elaine, thank you for the note!  I'm sure everyday I will feel better....it's gonna take some time. I hope you are feeling well!

Deb the destroyer,  How the heck are ya?

After being off the meds for a few weeks my mind is starting to come back to me.  Still have my moments though!  Lol
I suppose I should see a gyno and get checked out. I've heard the meds can throw a woman into early memopause.

I hope you all are doing ok....opps off to work I go.

best wishes to you all!

Darla

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