One year ago today...

[medicmommy]

A year ago today I committed to doing Hep C treatment...The first few weeks weren't so bad, a bit of fever and aches kind of "fluish"...then came weeks #4...OMG. The med dragon invaded and ERGH for the next 20 weeks...First the rashes...and the brain fog and just feeling pooped all of the time...It took until week #8 for me to figure out I had to pace myself a bit more and, if the floor didn't get vacuumed that day or the dishes stayed in the sink overnight, the world wasn't going to come to an end...then week # 10 hit and so did thyroiditis from the interferon...the anemia was accelerated by the hyperthyroidism and I had the lovely experience of a "thyroid storm" ...My heartbeat hit 170 beats, my temp went to 101' and my blood pressure shot up...thank goodness it was easy to treat...The anemia hung out at 9.0 HGB and 26 for HCT...I couldn't have fought my way out of a paper bag at that point! My Dr seemed to think that I had stabilized and rescue meds weren't needed...I was grateful my tx was only 24 weeks...
Well, it's a year later...I'm SVR, my thyroid is happy again, and my liver enzymes are ALT 17 and AST 15...And I feel wonderful..I didn't realize how bad I was feeling before starting treatment, and that the low blood sugars, the short term memory problems and the constant fatigue were all from the Hep C chewing on my liver...Now and then I get a pang over my liver area and freak out for a moment, and then it goes away...the liver labs never bobble when this happens...I still have to take a B complex vitamins because my iron stores have a tendency to run slightly low, but it's no big deal...I have a life again...For those going through treatment, or preparing to, I want you to know, if you clear, its worth all of the miserable days you suffer while fighting this dragon...(((((HUGZ)))))) ~Melinda

[GSDgirl]

Great story.  We are on the same time frame, you might have tx'ed a little before me but I go this month for my 1 year pcr.  I get the liver pangs that you described, not often but a little twinge.  I ended up on metroplol a beta blocker which I am still on.  One thing that didn't happen to me was the thyroid issues.

I am really glad that you feel great!

Denise

[portann]

Dear Melinda,

Thank you for your insights. I love when you share you experience - it's so nicely balanced.

My husband is getting impatient. He's subtly pressuring me to bounce back the day after my last ribavirin, so we can go on a major hike!! He has one idea after another, so I just let him fantasize.

You reminded and prepared me for 'withdrawal', even if I have a rapid recovery, like you. Sleep problems, shakiness, b-itchiness, gee, I guess he can take another week or two but it's wearing him down!  

I think I know what you mean about the 'loss of security blanket'. I am feeling it already and it's a little scary.

Health and happiness to you and thank you,
xoxo
Port

[medicmommy]

I almost forgot to respond to your question! Sorry! It felt really weird when I finished treatment...because of the thyroid problems my Dr wanted me to stop 2 weeks early, but I didn't want any doubts that I'd done everything in my power to kill this dragon...soooo, I halved my riba to 400 mg and took the last two Peg shots...(Typical health care worker, huh?) Anyhow, when I finished it felt odd, like I'd lost my security blanket....Then, after I'd been off tx for a week, I began to feel different..better...the aches went away along with the brain fog...It seemed like it took forever for the anemia and my neutrophils (white blood cells that fight off infections) to get back to normal levels (about 3-4 months)...I did have shakiness and a bit of sleep problems for about a week or so, and definately had some serious emotionally unstable days (B*tchiness) but it was all replaced by the exhilarating freedom of not having to revolve my life around meds and the sensation of feeling lighter and getting have my life back...So, yes, there was a short withdrawel time for me while my body was celebrating not being poisoned any longer, but certainly nothing worse than enduring treatment at its worst...(((((((((((HUGZ))))))))) Health and happiness to you! ~Melinda

[IMstacie]

Melinda - great post - thanks for summarizing all the details.  It's actually one of the most positve I've read after reaching SVR.  -Stacie

P.S.  Luv your sense of humor!

[Kathy73]

Thank you so much for dispensing "hope".

[annieCinMD]

Your story echos what my friend who treated and cleared several years ago has always told me. The end result is worth it!  We talked on the phone last night, as I got my first results the other day and they were pretty good.  She told me it took her about 3 months to get back in the gym, post TX. She started out slowly, but it did come back.  Getting good news on your results makes it easier to take, too!

[portann]

Melinda, it's super that you never reached the 'well-done' point with your thyroid. Trish, I'm keeping my fingers crossed that you will recover in every way, if you haven't already.

Thank you both for alerting me to the possibility of hyperthyroidism. I'll be sure to get tested again. The last time was at Week 35, when the panel was fine, but I know how quickly things change.  

My rocket seems to be sleeping right now but wow, when it takes off, it's impressive.

Best regards to you both and thank you again,

Port

[medicmommy]

That would be a big "yepparoo!". My thyroid is fully functional...5 weeks before I finished treatment it "flipped" to hypothyroid and I was on Synthroid for about 12 weeks...I went artificially hyper again, but only because my endo forgot to mention stopping the synthroid when I finished treatment...If it weren't for a couple of really good Drs, I think their kind may be the death of me someday!LOL Anyhow, all my levels are normal again...Apparently my thyroid didn't reach the "well done" point and I had very little lasting damage...(No nodules either!)
-and a big "thanks" Trish!                   Take care!  ((((((((((HUGZ)))))))))~Melinda

[Trish77]

Melinda, what do you mean when you say your thyroid is happy again?  Are you off thyroid meds completely now?  Did your thyroid turn out to be Hashimoto's?  Mine did / is and I'm waiting to see if mine will normalize as well, just had an ultrasound done because he can feel nodules on my thyroid.

Portann, first thing I thought about when I read your post was hyperthyroid.  When I was in that mode, I felt like I was a jet trying not to take off in flight.  Not saying this is what is going on with you however thyroid issues can flare up due to the interferon and it's worth getting your TSH checked if your doc isn't monitoring this so that this can be taken care of if it's an issue.  Hang in there, portann...almost there.

Melinda, congrats on the excellent recovery.

Trish

[CMcH]

Thank you for sharing that it gets better. I am getting close to end of TX 41/48 and it is hard. I do worry that some of these sides won't go away and that I will never be the same again. I have read that the first month is tough when you withdraw from all the meds and that you get crazy hungry. Did any of that happen to you?
It is nice to hear that you feel better than ever that is the goal with this TX. So it is good to hear that is possible.
Thank you again,
Connie

[medicmommy]

Hello!
My thyroid labs were tested and showed that I was hyperthyroid (TSH is low, Free T-3 and T-4 were high) because of thyroiditis (an inflamed thyroid)...I was given a "beta blocker" medicine called Inderal (10 mg X3 per day) . It just holds down the heart rate and blood pressure while the thyroiditis runs its course (about 6-10 weeks)..I thought it was just the anemia causing the fast heart rate and the interferon causing the temp increase, but I couldn't explain the suffocating chest aching and short of air feeling when I was just laying in bed...If you get it, it will accelerate the anemia...Check your heart rate at rest. It should not be above 90 beats per minute. If it is, get your thyroid levels checked (another blood test!). If it isn't, you may be still adjusting to the rapid drop in your hemoglobin from the hemolytic anemia that treatment causes....(Iron won't help boost your blood levels up, but I was put on 800 mg of folic acid per day which did seem to make the anemia stabilize)...If you think you may have thyroiditis, don't put off getting it checked. A thyroid storm -a sudden surge of thyroid hormones- can result in a stroke or heart attack and is a true emergency and can come on in minutes...Lovely, huh? Hang in there! You'll make it...((((((HUGZ)))))))~Melinda

[Deb_c430]

thank you for sharing!

[portann]

Dear Melinda,

Great to hear from you and congratulations again.

I'm wishing and hoping that I can one day post such wonderful news. It's getting scary for me these days as I inch toward the end of tx, wondering not only about my prospects for SVR but whether I'll recover.

And here you are, living proof that you can feel better than before! I'm so happy for you that you came out the other side of tx with victory in every way.

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Melinda: "My heartbeat hit 170 beats, my temp went to 101' and my blood pressure shot up...thank goodness it was easy to treat."

Lately, my heart feels like it's taking off like a rocket in a white streak, with a very rapid pulse. Do you think it's the interferon?  How did you specifically treat your 170 heartbeat and high blood pressure or was it just transient?

Port

[AnotherJourney]

Thanks for sharing your story. I took shot 7 on Friday and I have become anemic. And describing it as barely being able to fight my way out of a paperbag is so appropriate. But you are an example that it is worth it.

[charm27]

It must be wonderful to look back and be SVR! I truly cant imagine the feeling...You have been blessed!

Thanks for sharing your story as well.
Charm27

[Isobella]

~Hep C chewing on my liver...~~ Well, there's a new visual--never thought of it that way but it sounds about right, lol!

Very nice.....thanks for sharing your story and thanks for posting hope.

Wishing you the best,

Isobella