DAY 25–SOVALDI


download (1)Day 25 dawns with a nagging headache. This is # 7 since beginning the new prophylaxis. Additional noted complaints include itching (yes Leigh, me too) in odd places never mentioned in public, anemia, idiopathic thrombocytopenic purpura on exposed arms, pruritus, dizziness, and RUQP. Mind you, I am not complaining. These represent minor inconveniences on the way to a longer life without the dragon breathing over my shoulder.

In other news, Diane C. remains SVR after a year. Mark (Hepsick) is SVR after 6 weeks and will be coming up on another SVR assessment soon,. My own first checkie-checkie for less bugs per square inch of blood will be next Tuesday. That will mark the one month milestone we all look forward to and dread simultaneously.

 

The reason I am such a prolific author today is because I had a phlebotomy yesterday. The check engine light has been on ever since. Seems when you’re anemic, removing another pint of blood has consequences. Mine is a push. Allow the contaminated AO blood to fester or pump it out. Either way, my Sovaldi minder is going to be in for a rush when she sees next week’s results. They do have a laissez faire attitude about all this and didn’t exactly tell me not to keep getting phlebotomies. What I find interesting is the poster on the wall at the blood bank. It clearly points out that you cannot donate any more frequently that every 57 days. How is it I can do a phlebotomy every 30 days-and have been since November 1992? The little black spots in the corner of my eyes are my constant companions now like my dogs. They follow me everywhere. And for those who wonder, that’s thirty one gallons of blood down the tubes. Well, they claim they’re throwing it away but you know how that works…

My heart goes out to all of you who were subjected to the triple-drug cocktail VA was pushing (VERTEX) when they knew full well that Sovaldi was on the horizon and active trials were in progress. Perhaps it was part of that VA scheduling snafu that’s in the news these days. Damn Vets refused to keep calling back in to keep their desires for treatment current. What’s a VA scheduler to do? Roger that. Create a ‘secret list’ so they don’t lose track of these lazy sons of guns. Some day they’ll want that appointment and it pays to have proof you were just doing your duty trying to keep up with their desires.

P.S. If anyone finds that ten lbs. I lost or misplaced, please send it back. I guarantee the postage.

 

About asknod

VA claims blogger
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10 Responses to DAY 25–SOVALDI

  1. david j murphy says:

    Yes, sir Kinda figured that. My hep doc has tried to perscribe me the gen 3 cocktail back in 2012, took me off tacrolimis and put me on tertracycline because that was the party line that tac was causing interface problems and they still shot her down. Was sitting in her office when she called the pharmacy to order the drugs and they shot her down. Have an excellent relationship with this doc, belive that the pencil pushers are at fault, again

  2. SPrice says:

    SVR means being clear 24 weeks after you finish treatment.

  3. david j murphy says:

    Amen to Mark’s post. Good fortune to all who are SVR, may it continue. Best wishes to NOD. VA will not allow me a ride on the Sovaldi train at this time, they claim it has not been approved to treat transplant patients.

    • asknod says:

      As usual, David, they are funning you. One of our own, Leigh Burch back at the mail-challenged Baltimore RO did the prophylaxis there and she is txplant times several years. She also achieved SVR as well. Seems VA has a different policy depending where you go. Seattle only has 14 active slots. Houston has unlimited ones.Same for Kentucky/Tennessee. there’s no rhyme or reason to the patchwork quilt of rules/availability

  4. Kiedove says:

    If you still feel up for writing I’d really like to know about the HCV anemia link. Although SVR my spouse is still anemic–called mild in the records. The numbers haven’t budged. I think this condition should have resolved by now but I haven’t looked into it. Is this disabling other than adding to general fatigue? He hates red meat but takes senior vitamin/mineral supplements. Anything that would reduce fatigue, like curing anemia, would be a big plus. The doctor isn’t worried about this persistent mild anemia.

  5. Lawrence Gwinn says:

    You are looking for no trace of HVC . Good luck! I had zero side effects in the study and have been Hep C free for over a year and a half.

  6. WGM says:

    Thorne Research MediClear dietary supplement powder mixed with vanilla Ensure and honey helped me gain weight; I was at 132 pounds and I am at 155 pounds currently. I was drinking this cocktail 3 or 4 times a day; but I do one a day currently because now I can eat solid food again. 3 Mirtazapine 15 MG tabs at bedtime helps improve appetite, sleep, less nausea, and fights depression.

  7. mark says:

    Just finished my 3rd bottle of Sovaldi, SVR Test tomorrow, lets see if I am still Bug Free, Side Effects, Very Tired, Head pounding, Heart Pounding if I do more then sit around, some Depression, Not Bad. So I have to give up half a year to may be live longer, I guess I feel less Shitty then I did 3 months ago? hard to tell been down so long I do not know what Normal is anymore, but WE ARE THE TIP OF THE SPEAR, of Vets with Hep C, its reported here first.
    I want to Thank the Us Government for those wonderfull Air Jet Guns THEY used on us, Thank You for 35 years of Sickness and counting, May the flying fickel finger of fate find you all out and crap on your life like you did ours.
    Later Hepsick

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