Hep C Discussion Forum

Hey SF,

I am brain dead tonight ... eyes are crossing. You wrote *SVR* at bottom, with updated labs above it .... but what does last line ... "C TBD" mean?

You posted your (EOT+24 weeks) labs of OCT 18, but said you won't get your C PCR back for a couple weeks?? So ... just to straighten me out .... you are not quite  EOT+24weeks SVR yet? Right? 

Too bad about the sleep thing, I was kinda hoping maybe things would change for the good some, after the HCV was gone, but maybe things still will change for the good in the future in the sleep dept. For now, take advantage of the zombie-like sleep you might be getting from new meds??

Glad your BP is cooperating. C.

Greetings SF.

I am becoming well convinced that EOT = many adjustments. I think each of us experience different things as we enter both EOT and SVR.

After so many years of living with a Dragon, none of us really know what to expect outside of the hope of SVR. Exactly what that entails is an individual thing.

I have come to the conclusion my Liver simply does not know how to act now that it is normal. It will take some time and I believe and expect the process of repair to be just as gradual as the damage done was.

Y'all are doing great my friend!

JimmyK

Hey SF,

I concur with Canuck, we don't want to risk blowing a gasket! I'm so glad to know you're doing and feeling better. You gave us a bit of a scare with your report of the incident. Lets not have anymore of that, okay? I'm taking a few of those bright colored pills myself and few plain old white round ones too. Whatever it takes to make life more rewarding! Big Pharma, we can love em and hate em, but we need them!!  

It's good to have you back enriching our community...

Ah,

THERE you are SF!! Thought you had gone into stealth mode! Been missin' ya 'round here.

Is the vascular system being a good boy now! I sure hope so. What have your daily BP's been running at? What kind of animals are these "new" drugs they have loaded you up with. 

How did the turkey for 15 go?

Don't go stealth too long, or I will think the worst!  C.

Still here!  Ha

SF

Hey SF,

So glad to hear your details on the event. Relieved to hear, and lucky indeed, there was no infarcted tissues. A hypertensive crisis and resultant systemic and cardiac response, insufficiency?, angina?, is more than enough for anyone to have to experience and prevent from happening again! They call it a crisis for good reason! Yuk, trip to the cath lab. Well, at least you got a little further ahead on the why's, and what happened, and status of the patency of 2 arteries. Last thing we need is for you to be blowing a gasket now! Weird this is tho (understatement) as to why your BP has decided to become so uncooperative, and only at times, and causing all this grief, I expect they have changed up the prior drugs you were on to (as you said) a cornucopia of other things to try to make sure your BP stays at an unperturbed level?

Listen BP! - don't you make us all come over there and have a stern talk with you, or else! Mind now, I've warned ya, you behave!, and leave SF alone!, or boy, are you ever gunna get it! 

Maybe that will help SF. Sleep tight, rest, treat yourself good, stay nice and quiet. Lick your wounds, we be right here waiting for you.  C.

Thank you sincerely for everyone's warm regards and well wishes.

To try and answer some of the questions, No I did not see this coming and it was sudden even though I waited 12 hours before I went to the ER. I was in denial. Don't do what I did. 

To the best of my knowledge, I have no damage to my heart and I am probably so lucky this is the case and we did find this out now rather than later when things could have been much worse.  My echo was fine as well although I do not have the official report. ** I know I am lucky since the ER doctor said with a BP that high I could stroke out. I suppose 185 / 118 is just a tad high. It's looking really good now for the most part.

I am feeling tired and still sore and swollen where I had the angiogram but hoping it will subside shorty as it was one week ago today. I am doing everything I am supposed to of course and will see the cardiologist in 4 weeks and my family Dr. Thursday who is going to be a bit surprised. Moving forward, I have my next Ultra sound set up for Oct 17 and I will have my EOT + 24 blood work done inc. VL .   Good luck finding a vein I am thinking my Dr. will send me for blood work or I will ask Thurs since I want to know how all of these meds are affecting me and my liver.

I am sorry I have not been able to be of much help to our warriors here that are busy winning their HVC battles but I will bbs to do that.

Everybody keep well, keep fighting the dragon and posting your successes. I will continue to read.

Thank you again for your support and well wishes

SF

Sorry to hear about your news SF.  It sounds like you dodged the bullet this time. Now the Dr"s have a base line on your heart and its plumbing, you can avoid the big one!!  Consider yourself  lucky.  Last week I had a heart stress test on the treadmill with a heart echo resting before the treadmill and the same echo (set of pictures) right after the treadmill.  My Dr told me I had no blockage or constrictions.  It's good to have a base line on your heart, I'm sorry You had to have a infarction to get the ball rolling. Sounds like your on the mend.   RC

Oh no... I`m so shocked to read this, SF, but also very thankful that you`re out of hospital and well enough to get in touch with us.  Really, really sorry you`ve had to go through this, I can`t begin to imagine what a traumatic experience it must have been for you... and just when you thought, we all thought, you were finally in the clear, health-wise.

Take it easy and take some time out while you`re recovering, your health has to be the highest priority at the moment and we`ll be thinking about you and wishing you all the very best.

You`ve come so far and you`ll get through this!  Please do keep in touch when you`re up to it, we`ll be missing you around here...  

Oh bloody h*ll SF! I am just as mad as I can be, that you have had to have had this happen to you, now!  After ALL you have been through and done so well with, then this! You must be so Peed off and it must be a really frightening time as well. This is just NOT fair! You are right, WHAT a year this has been for you! I remember you had some trials with your BP during treatment, but thought (mostly) your BP was up only short periods and was back under "control", lower, subdued?  Did you experience any inklings heralding something wrong? Did you have a sudden, unmistakable event which sent you immediately off to the the doc or ER for assessment, or, was it one of those less clear events which crept up more insidiously and only became apparent with later demanding-attention signs and symptoms? Which ever way, I am sooo wishing this had not happened. Rebel body - BEHAVE!! We have a nice man here deserving of some peace, quiet and cooperation! Do everything, and avoid all, that you need to during this time. WE send you ALL our good thoughts and vibes and wishes, and wait right here for you. Only when you feel like it, let us know how you are feeling and how the injured heart tissue is healing. So sorry for this. When you feel like it, let us know how you are feeling. Sorry for this setback. I don't need to say "be strong", because we already know you, your resolute, practical, methodical, common sense approach to life and dealing with all it throws at you. Hard stuff, again, to have to deal with, but i know you will, and do it well. Just concentrate on you and recovery. Love, C.   

Geez Sf.  I'm sorry to hear this but very glad you are on top of it.  I guess we expect to be free and clear, if not super human, after we achieve SVR, but it turns out we are still human.  I'm so sorry this is happening to you.  The stress doesn't help.

Thanks for checking in and letting us all know. Thanks, even more, for taking care of yourself.  You can do this, too.

Stay in touch.

Cheddy

I have been a little absent and may be for a bit.

185/118 and I suffered a heart attack Sunday Sept 25. I am 6 ft tall and only 155 pounds. I am discharged now with more meds that I could ever imagine and a call into my specialist asking the receptionist to let him know what I am on since none of them are liver friendly but I am still here recuperating hoping my liver will not be hurt. Double edge sword as I need this now to prevent more.  I had a heart catheterisation and the surgeon said, although there is some plaque in two arteries, it is not enough to have stopped blood flow nor is there any need to do anything about it. It was his opinion that this was all because of my BP.

What a year this has been. Cured then this.

Wishing everyone well with their treatments and I am just going to have to take a few steps back for a bit. I will peek in.

SF

Thank you for that link. It is interesting and for sure provides much more information. I did not really think my BP is causing some headaches, rather during that time, I just decided to take it. I am sure it was a coincidence but just the same was nice to see it that low. I have never known it to be that low so I will watch it. My Dr. would be thrilled since the numbers he will see are over the top.

SF

I took mine today, it was 130/80 and a heart rate of 60. I was surprised when the calculator told me the BP was slightly elevated! If I could have regular BP's like that, I'd be a happy camper. I've been on BP meds for 30 years and I'm tickled pink if I can keep it under 140/90. Of course I strive to keep it lower than that, through modern medicine and low sodium pizza and diet coke. I walk to the mailbox twice a day too!

I can't imagine that the BP's you have listed would be responsible for headaches. Those are stellar numbers IMO. Now if it drops too low, you can get light headed. In my experience it's the uncontrolled hypertension that leads to the headaches and certainly increases the risk of cardiac, neurologic and kidney disease. It's a silent killer indeed...

Here's another good calculator that adds some additional factors into the equation and provides some graphics and recommendations.

American Heart Association

I'm not sure what the problem was with your link this morning because I didn't have time to investigate and now I'm going to leave it alone since you have another link in it's place. If it happens again I'll see what I can figure out.

You just keep finding all this great info for us - I'll get everybody linked to it somehow...

 I had tried that link this morning also and it didn't work for me. I tried once to fix it but it still wouldn't work. I was short on time and didn't investigate further but I'm going to link to it here to see if it works.

Blood Pressure Solutions

Supplements or products that increase nitric oxide or widen blood vessels (vasodilators), such as cocoa, coenzyme Q10, L-arginine or garlic

All these health supplements are supposed to make us feel better. I say if "nitric oxide" makes me feel anywhere near as good as the nitrous oxide that my dentist gave me the other day then I'm all in.

Thank you Tig but I cannot get to the page. If I click on it, it will not take me there and if I open it in another tab, it takes me somewhere else.

Odd

SF

My BP went up on the Harvoni. I have always have rather low BP. My primary care doc retired and I cannot stand the person that replaced him. Went back in Sept. to see her about the BP, and she was rude, condescending and would not let me speak. Claims BP is fine. But also offered this recovering alkie/addict drugs so I will not go back there as she clearly did not listen nor read my chart. Sorry I digress. I am going to try reishi herb supplement as I did read about it on one of these threads and did my homework as I am not on BP meds and I want to see if I can lower it that way. I did buy a BP home monitor and it is still high. Keep ya posted.

Hey SF and Canuck, 

so great to hear that you are in the final week of treatment.

I have taken BP medication for some years now. It runs in my family and as long as I go out with one massive heart attack, I think it wouldn't be a bad way to go. Just don't want to linger around after some horrible stroke trying to learn to hold the toilet paper again. I have had extra palpitations on Sofosbuvir but find that the number of things I can stress about, even as a professional hypochondriac, must be in the single digits. Sorry SF, I was trying to cheer you up but just ended up sounding like a smart a$(@ instead. 

Canuck, you are a scarey reminder to me of the sort of brain I think I had once. You know and remember so much!!! 

I really want to find an appropriate song now. 

So big hugs to you both and I'll go have a look on YouTube.

Syd

SF your news sounds better every time you post the latest! This is great!

JimmyK

SF,

How long has you your BP been on the higher side? (I assume that is the main reason you were offered inderol in the first place?? - not just for any discerned arrhythmias/palpitations alone?) How long have you been taking inderol? I have to assume ... a long time? prior to C treatment? How many mgs? Any dosage increases since you started taking inderol? Assume you have had and get ecg's, that he has a good collection of baselines, your profiles, lipids, etc.?

Yes, makes perfect sense (to all I think) to monitor your bp at home for a long time, like you said, weeks/month(s) for better baseline, and feedback, before you and your doc draw conclusions that you might need to try to do something dif. Like being concerned or increasing beta blocker, etc., etc. 

I am sure you already know how and when to take your home bp's, always at "strategically same time intervals" (ie AM/PM) for a good predictable representative sample, also, never back to back or twice in a row (some people will do it once and then almost immediately take it again to record the better or worse reading) - this is all probably very needless for me to say, but I am always surprized by how many people do not know about "small" things that can skew results "slightly"! Also, proper arm and body placement, proper placement of cuff (if you are using the cuff type equipment). Record your pulse along with each BP reading if it is not auto. Following your feedback over the long term will be good info for you and your doc. And, as you likely already know, it is the diastolic that is sometimes more telling, over the long term, than systolic.

It will be interesting to follow your bp post treatment to see if there are any notable changes, one way or t'other, or if you just remain 'tween.

BTW - glad you finally got your C VL requisition!! Yay. Won't be long now!  C.

I wouldn't rule out a little bit of "White Coat" BP elevation, but there is plenty of anecdotal evidence that indicates similar experiences. You have probably heard people, starting with Sovaldi, saying they experienced heart flutters or palpitations while on treatment. I think it's somehow related, but not much professional comment on it. I do see that the symptoms do improve post treatment. 

The half life of Ledipasvir is 47 hours and 0.5 hours for Sofosbuvir. Although Sofosbuvir's (Sovaldi) half life is short, its active metabolite has a half life of 27 hours. So you'll be clear of it within a week. If your HTN is drug related, you should see the changes accordingly. I've been on blood pressure meds for decades. As we age, it seems to slowly elevate anyway. If diet and exercise don't resolve it, I think treating it with an anti hypertensive medication is a reasonable alternative. High blood pressure is another one of those silent killers. 

96tears wrote:

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 one thing i noticed is there are quite a few people that have had to do treatment more than once.. the sovaldi/ribavirin treatment is advertised as having a 92% cure rate (pretty good odds) ..i hope this is accurate.

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 Cure rates vary from each individual to the next. In my case I failed Sov / Riba last year, but consider I am also HIV+ which makes a big difference, and I was badly injured in an accident during my treatment after which I went through several major surgeries causing my immune system to be significantly compromised. So don't let my failure discourage you. And less catastrophic factors can effect success. The main thing we can do to insure success is to take care of our body so our immune system can fight strong. We can't blame failure on the medicine if we abuse our body during the fight.

hi wmlj1960, i do have nausea somewhat but not too bad as long as i have food in my stomach. haven't noticed moodiness or depression at all but only on dat 11 ..i was aware that this might happen so on guard. glad to have found this group, i'm finding out tons. one thing i noticed is there are quite a few people that have had to do treatment more than once.. the sovaldi/ribavirin treatment is advertised as having a 92% cure rate (pretty good odds) ..i hope this is accurate.