SVR! I did it!

Rose » Mon Aug 31, 2009 9:13 pm
As I stand at the podium receiving my award of SVR there are many people I’d like to thank.

To all those heroic people that have gone before me and ventured into the land of the unknown by doing drug testing and trials for Hepatitis C, I thank each and every one of you. You paved the way for me and it has been truly appreciated.

I thank my family for their love and support as it was a long tiring journey for them.

I am the last of three forum members who started treatment the same week of September 2007. Sadie, Patsy and I all started the same week and each of us had very different experiences with treatment. Patsy treated for 24 weeks, Sadie treated for 48 weeks and I did 72 weeks. We all cleared the virus.

However, most of all I thank my many friends here on the online forum for their relentless support through my diagnosis and treatment. I’d like to give Pixie, JB, MYS, Ross, KitKat, Linda, Spack & Ralph acknowledgement for their continued support.

24 Week Post-Tx Blood Draw

I am currently working on my 25th week of post-tx and early this morning I went to have my 24 week post-tx PCR done. I was reluctant to do this as I know I now give up the control of my battle with Hepatitis C. Once I give up the blood and put it in someone else’s hands it ends my battle and I know it will be the luck of the draw with the nasty little b@stard.

Being newly diagnosed and pushing myself into a whirlwind of aggressive treatment and being left the shell of the person I was following the treatment puts an ending to what I could do to try and take control back.

I gave up the blood and it’s now in someone/something else’s control.

I got up very early and sat with my coffee and watched a beautiful sunrise. I had every green traffic light getting to the lab. That never happens on the stretch of road to the hospital. Smallville lab technicians quizzed me to death in depth about what a HCV PCR was and what type of treatment it entailed. They had to refer to two different reference books to determine what test to order, what vile to use...I was irritated, annoyed and worried at the same time thinking that they’d screw up and I’d have to come back in seven to eight weeks of waiting only to find out that they did something wrong and I have to be retested to wait another seven to eight weeks for those results. Hey! It’s happened to others! They were clueless.

Working on week 24 post treatment

This is not a whining post. This is a post to keep track of how I feel 24 weeks past treatment.

I still get the infamous “non existent” liver ache. Yesterday it was noticeable and the throb was vague to OUCH a good part of the day. This throb is not consistently there day in and day out, but it’s there and always in the background of my recovery days.

I struggle with my joints and I am not as spry as I was prior to tx. My knees seem to be the worst only because I need them the most. I struggle with mobility and every action I make I notice a bone ache somewhere within the action. If I inadvertently tap a joint (knuckle, elbow) the ache will throb with the minor touch to the joint. Opening a new jar of goodies is excruciating as my wrists only have so much mobility until the pain sets in to let me know who’s in control.

I struggle to get myself up out of a chair. Getting up off the floor is a major struggle and something I can barely do if I don’t have help. My legs and hips do not have the strength recovery to support my body weight so I know I’m not ready for any structured exercise. I just don’t get up out of a chair gracefully.

I was taking Tylenol every morning to get going and since I have started a new vitamin plan suggested by KK on the forum I have noticed an improvement. It’s not gone, but I do not take the Tylenol in the morning as the extreme stiffness works itself out through the morning.

I try to be proactive with moving and digging into daily work and procedure, but it’s slow going with recovery regarding the joint pain. I do wonder if I’ll ever get back to being my old self.

Contacted the nurse practitioner through email several weeks ago and she indicated that my joint pain was not normal and to contact my doc. Blood tests were done the 19th week of tx and I am happy to have received the results that I don’t have rheumatoid arthritis. I am thankful.

My ALT was 17 and my AST was 33. I cannot read too much into it as I didn’t have high readings prior to tx. However, they were much higher than this (my ALTs seemed to run high 30’s and my AST was around 58 to 108)

My thyroid is on the edge of being high 5.05, but I am hopeful that it will level out as the month’s progress. I did gain back all my weight and I do look healthy compared to what I looked like last year this time. However, this might explain my lack of energy and endurance. I am good, but I should be much better 24 weeks post tx.

White blood cells are still a tad low 3.7 and I am hopeful this won’t be an issue when the swine flu makes its second and third waves of destruction.

I am currently reducing my antidepressant, citalopram. I am taking .5 mg a night and I seem to be getting along very well on this dose. I have been blessed with an increased tinnitus and the howl/buzz is louder than ever. I do hope it's from the decrease in anti-d.

I am also taking ¼ of a sleeping pill which does the trick. I’ll wean off them once I wean of the citalopram. I’ll continue on this dose of citalopram until I get the results of my six months post tx PCR. If I don’t clear, I’ll probably have to stay on it for a longer period of time.

Ironically, I should be going for my six month post PCR this morning before 9 a.m. (Smallville hospital rules) and for some reason I’m not going. I have it planned for next Wednesday morning July 29. Somehow I think that it gives me control of the unknown for another week. Once I “give up” the blood it’s all in someone else’s hands.

Working on week 23 post treatment

I am surprised how quickly the time has passed since I stopped tx. This week I celebrate my 54th birthday and I cannot help reflecting back to my last two birthdays. My 52 birthday arrived and I was dealing with being newly diagnosed, recovering from a liver biopsy and facing treatment. I can remember the uncertainty and thinking “maybe by this time next year I’ll be finished tx.” The days dragged until I had the biopsy results and dragged more until I was given an exact date to start tx. September 21, 2007.

My 53 birthday was a day of struggling to breath, extreme exhaustion and looking forward to nearly seven more months of tx. The extension of six extra months wasn’t in my plan, but who can plan with Hepatitis C treatment? It’s like rolling dice and you can either be lucky or unlucky.

Turning 54 was a relief! I have completed 72 weeks of tx and on my way to recovery from the scourge of injecting and ingesting anti-viral drugs. My day was normal and I spent it with my immediate family. Chocolate cake was the highlight of my day. Friends called and emailed from near and far with birthday wishes. It was so wonderful to feel loved and to have such a hellish two years behind me.

Getting close to my six month PCR. I intend to go the 29th of July.

Completed Week 21 post treatment

I really believe that my energy is returning. I’m not so licked at the end of most days. The skin problems that were very evident during and following tx are all but a memory. It took a long time for my eyelids to stop flaring up with an itchy red looking rash. It was weird. My lids looked as if they were scalded. It flared up for the longest time following tx.

My hair is starting to thicken and I have many spiky hairs sticking up on the top of my head. It is a relief to see some volume to my hair. Debating on colouring it.

I am back to my “fighting weight” and look much healthier than I did at the end of tx.

Mentally, I’m doing very well. I have reduced my anti-d a tad and I intend to start taking it every other night starting next week. I have a forward attitude and my brain fog is lifting. I do have some moments, but I get through it.

The joint pain is an issue with me these days and I did get to my MD to get my blood work done. I’m waiting on the results and in the meantime I have started taking vitamins that I could be possibly lacking. I am happy to report that they seem to be helping.

It’s slow going to recovery and I’m starting to get near to the date when I can have my long awaited six month post treatment PCR. I intend to go the last week of July.

Completed Week 16 post treatment

Something very significant happened this week when I had an appointment with my dermatologist. He has seen me four times since I was diagnosed and went on treatment. He was the most knowledgeable and supportive and in my heart I believe that someone he knows very well has been diagnosed and has gone through treatment for Hep C. He was uncanny regarding his knowledge and he was always extremely interested in my progress throughout my tx.

Of course, he knew that I would be completed my tx by the time I went for this appointment and he made a comment that really helped me with my uncertainty at this time about treating.

He indicated that I made the right decision to treat this virus. I was shocked he said that and I thanked him for saying that as it helped me reinforce my decision to treat when that support comes from a doctor. He added...”If I had Hep C I would have made the exact same decision as you (to treat)”.

You cannot even imagine the relief I had when he said that to me. At 48 weeks into treatment I did have my days that I doubted as it was so exhausting and gruelling for me. At the end of tx and these last few weeks I also had some wavering doubt because I felt as if I had the cr@p kicked out of me and I were left on the side of the road isolated and alone with my uncertainties. I figure it’s the survival stage of tx causing these worries.

I always use my famous quote ...”I accept I have Hep C, but I cannot accept that my lifestyle contributed to it...” He indicated that I probably picked it up through medical endoscopic procedures or dental.” I don’t want to come off as a snob when I refer to this lifestyle issue I have, because I’m not. I just resent the health department/medical profession being so anxious to pigeon hole me into a reason for having Hep C. They want to make it something I did to myself. It does NOT matter how you or me were infected with Hep C. We have it why try to put us into a lifestyle slot. It just pisses me off!

A friend of mine casually said to me one day that her doctor shockingly admitted that it’s a wonder we all aren’t walking around with Hepatitis C. Interesting comment from a doc, don’t you think?

The joint pain can be restrictive on some days so I pop a Tylenol. It’s a strange thing this joint pain. I like to think that it’s the heinous drugs purging from my body. I wonder if it’s a withdrawal thing.

Energy is slowly returning, but some days are on and many days are off. I push myself to get myself back to where I was prior to tx.

Completed Week 13/Working On week 14 Post Tx

Doing pretty well now that I am 13/14 weeks past treatment. I still have issues with sore joints, espeically my hips and knees to a point of hobbling around when I get up from a sitting position or going upstairs. OUCH! YELP! All my joints ache and I do have a struggle opening things (jars, cookie bags :), treats :) as my wrists and hands are weak.

Some days I am filled with "pi$$ and vinegar" doing housework only to crash by the late afternoon to spend my evenings like a blob watching television. Other days I do moderate normal stuff, but I have done this long enough and I know I need a more structured rehabilitaiton after being dormant so long.

Exercise isn't even an option for me as I find that I'm doing so much trying to get the house back to a cleaner environment that it exhausts me. I am unsure if I should seek physiotherapy, however, knowing my doc he'd have to tell them I just completed 72 weeks of anti-viral treatment for Hepatitis. Living in Smallville that is not an option for me.

Thursday, May 7, was the first day I had an enlightenment that my memory was improving. I did a two step thing by taking stuff to the laundry out back and wanted tin foil from the pantry on the way back. I actually stopped by the pantry door and remembered the tin foil on the way back to the kitchen. Prior to this I'd go do the laundry job and not remember the tin foil at all for a while. I actually stayed on task and completed what I was doing. It was a hopeful feeling that I was actually going to get my memory back. It might not sound like a huge thing, but it is...as I was hopeless. This tells me that the riba I was taking is starting to really purge from my system. The interferon is supposed to be gone in eight weeks following the ending of tx, but the riba stays in the systems for months. I believe this to be true as many sides are still lingering to a degree. They aren't as intense, but some days the fatigue hits me as if I ran into a brick wall.

I think my hair is improving.