Hep C Discussion Forum

lamassu · Senior Member

RE: Health Updates - Among Friends

Tig · Admin

Forgive me, I’m a spelling freak. The company is GILEAD

That is all... School’s out for Summer! wink

Cheddy · Moderator

Lam,

Somewhere in my adult life I was diagnosed with Exercise Induced Asthma. No allergies, but sensitive bronchia. Be sure to cover that possibility too. My shortness of breath is treated with inhalers - one for maintenance and one for emergencies. Just guessing.

I'm eager to hear what you find out. I'm glad you din't need a stent, but as Tig says, it's one of the better/easier heart issues to deal with.

Please keep up posted.

Harry,

Yes, it's confusing to discern what is treatment related and what is not. I've heard more complaints from Harvoni users, but I don't know the facts or the causes. Perhaps Gilliad has looked into it and maybe part of why treatment options keep changing. It's looking like the new treatments are more trouble free, even long term. I'm sure sorry to hear that you are still having these problems.

Canuck,

OMG!! You need a break!!!

Harry · Senior Member

Also neuropathy and numbness I never had these symptoms pre treatment if gilliard could just explain,after all there the experts.

Harry · Senior Member

Hi Lamassu,why are these problems happening,?Think it's about time gilliard maybe explained a few things regarding poste treatment side effects breathlessnes especially with people over 50yrs old.

lamassu · Senior Member

No allergies non-smoker. Everything was fine until suddenly two months ago I started having shortness of breath on exertion. I'll ask my cardiologist if he is sure this problem is heart related or if I should see a pulmonologist.

Tig · Admin

Good news, Lam! Better they didn't find any pathology and no extra parts added to your pumper. If something had to be done, a stent is far easier than a bypass, and then another. They seem to come in two's and three's. Might be a good idea, after the Cardiologist visit, to see a Pulmonologist. Could be some underlying issues there, that aren't allowing you to ventilate properly. Have you ever smoked? My Dad smoked for 40 years and quit around 1980. It wasn't until the last 10 years of his life did he start having shortness of breath occasionally. They discovered he was developing emphysema. Environmental issues can sometimes be the culprit, too. I know you, you'll find out and get things right!

5-1-18 · Guru

lam, i'm glad to hear your procedure was easier than you imagined.....now to get the rest of this addressed.

do you have allergies?

lamassu · Senior Member

Thanks everyone for the kind words.

I just got back from my left heart cath. They have improved the procedure, there is a new way of closing the femoral puncture that only requires you to lay flat for 2 hours rather than 6 for a clot to form, called Suture Mediated Closure using Perclose ProGlide.

The cath lab I went to looks like something you would see on Star Trek Enterprise. All white and very high tech. Took a half hour. Good news is I have no coronary artery blockages, no need for stents. Bad news is the interventional cardiologist can't explain my shortness of breath. I have an appointment with my regular cardiologist tomorrow to explore next steps. At least I don't have a stent to worry about, that means more drugs to take and increased risk of stroke. To be continued ...

-- Edited by lamassu on Monday 1st of July 2019 04:07:45 PM

Cheddy · Moderator

Geez you guys. I get swamped for a few days and look all of these health updates. So much going on. When my current guests leave, I have a lot of questions about what's going on. The one I know best is fatigue, seems to go with sleep issues. I'm sooo sorry so many of us are in serious discomfort. We came here to get better, and we did, but still we stumble of the other landmines. More later. Please find your happy places where you can and take time for your own comforts.

xoxo

Cheddy

Iris Dragonfly · Guru

Hey, will be sending you good energy Lammasu!!! hope all goes swiftly and with the best possible outcome! I was in cath lab in 2005, and it was pretty neat watching the procedure on the monitor. I didn't have a stint though, it was a radio ablation for an electrical haywire.

@5, I really glad to hear that you and hubs are feeling some improvements, as I am at about 9 months post and really ready and waiting for this too. Oh and thanks for the reminder on the magnet therapy :) I'm going to go dig my bracelet out and give it a go.

@Harry I've been trying to find info on the nerve disruptions and any correlation to Harvoni and so far nadda. My left toes are in and out of numbness, some days worst than others, it's really my back right now, just doesn't seem to have the strength to hold me up, and it's painful as ****!

Stay cool everyone, seems tolerating the heat is now the new challenge

html5 [video=https://giphy.com/gifs/FzpNPTpiDpsmk/html5]

https://giphy.com/gifs/FzpNPTpiDpsmk/html5

LoL ok...I give up, I can't figure out how to embed a GIF cry

BB, Iris

Harry · Senior Member

Hi 5,glad to hear you both feeling better,I'm in same boat I'm on wrong side of 60 as well,we are really lucky to get this far plenty of my old friends didn't ,I keep forgetting that getting older means few more aches pains ,I really get a shock when I see the date 2000s wow 50s sound long time ago lol,we sure have seen a lot our generation,couldn't believe it was so hot in Europe few days ago. Hope that's not a sign of what summer is gonna be over here,anyway makes me feel better that you guys are going ok.cheers Harry

5-1-18 · Guru

it's been a year for me and i'm starting to feel pretty good for being 67 as well.

it's been about a year and half for hubs and he is starting to get better now, he's getting his appetite back and that helps so much to be nourished.he has pain but he always did; it was just worse... but at 70 i think hes doing pretty good too.

we are both still looking forward to more better , but yea for sure ..... the mean old virus is g.o.n.e. ;and nothing would be possible without that

Harry · Senior Member

Hi all I wish everyone best of luck with all there medical issues,I don't know about everybody else,I'm really happy to be rid of this terrible virus,but I was really looking forward to feeling a big improvement 8 MTHS after treatment ,I'm really hoping the DAAs haven't had anything to do with neuropathic problems some of us are experiencing,I found it really hard to get a straight answer from the liver people over here, I recall reading somewhere that the virus can be found in lots of different organs besides the liver, it's great that the new meds can wipe the virus out ,

Observer · Guru

Hey Lam,

I hope it goes smoothly and you only need a stent. Im glad you have a good cardio centre and your insurance has preapproved any necessary procedures for you.

catch us up when you can

Tig · Admin

Hey Lam,

Good luck, Brother! I know what you mean about all these things catching up to us in our most knowledgeable years (sounds better than worn out)! Get er Done and let us know as soon as you can, how things went. Better to find out now than when an MI causes some damage. Smart move to go in and have it checked out.

5-1-18 · Guru

lamassu, good luck and i hope it's the easiest of all the choices be well and see you here soon hopefully

lamassu · Senior Member

Hi friends,

I may be away from the forum for a week or so. I have been having shortness of breath and my cardiologist has me scheduled for a left heart cath tomorrow. Now that is an outpatient procedure and if I only need a stent I should be back home same day. On the other hand if imaging shows significant blockage of coronary arteries the rules change and I may be admitted same day for bypass surgery. It depends on the severity of the problem and availability of a surgeon. If I need a CABG or HCR I may just be sent home and have to wait a few days. Shoot you get one problem out of the way and another pops up. It's a **** getting old:)

Good news is I have never had any chest pain so odds are I just need a stent and caught the problem early before I had a heart attack. Also Medicare has already approved whatever I need and where I live we have a nationally recognized heart institute. Will update as I am able.

5-1-18 · Guru

hi C,

i have tons of magnetic braces and spot magnets etc. something for everything except the GB

i have bracelets i wear for work, knee braces that are lined with magnets for my arms and feet

bigger wraps for neck and back.

spot magnets with a special bandaid type patch that sticks for days , that i use on my thumb joint and sometimes my neck. [shhhh, i haven't needed one for a while now ]

i ice my pains religiously to keep the inflamation down and numb it down. heating pad more in the winter months but so far so good on that right now too .

i get my magnets from amazon.com Not everyone is lucky enough to have it work for them, i am so thankful since i can't take meds very well.

so, tuesday i get GB evaluated, but i'm sure he will need new ultra sounds to see where it's at now. i'm bettting it was inflamed due to the passing of a stone that hurt so bad. so far it's pretty quiet... it must know it's going to get evaluated.

i'll let ya'all know how it goes and what the doc says. at any rate i'll be on board with the surgeon in case it needs to go bye bye.

i hope you are recovered from your trip and racking up the walking miles. i'm sure you are sad about the yoga cry , i know how i feel when i have to give something up cos my body just says no .

water arobics and yoga sound easier. take it easy

-- Edited by 5-1-18 on Sunday 30th of June 2019 05:18:45 AM

Canuck · Guru

uumm, we are needing further updates from folks who are sporting broken teeth and own uncooperative GB's. (You know who you are.) : )

5, I know very little about magnetic therapy, heard of it, but that's about it. Saw some magnetic wrist bands once, and supposedly, some kind of magnetic stockings? Can you tell me more please. What do you do and how does it help? Would appreciate the info. C.

5-1-18 · Guru

hi friends,

have you guys tried magnetic therapy? i have used it for years and it helps me so much.

Canuck · Guru

Hey Harry,

Thanks for asking. It IS a bummer these physical bugger-up things that happen to us eh? Yours do not sound like any fun AT ALL, mine I am hating. Mind you, I don't end up slamming my fingers in the car door because of them! That sounds terrible/dangerous! as well with dumping hot coffee on yourself. I sure hope they can do something to improve the nerve communication down your arm.

I am still being assessed, but my first (recent) MRI results are back. That and the orignal xray are somewhat informative.

MRI shows no herniation of the disc(s) persay, just "bulging discs" and more arthritic areas show on the MRI than what we saw on the original xray. The MRI shows the bulging discs, where the xray does not, but both xray and MRI conclude some similar things, DDD mostly at L3,4,5. MRI says "mild multi-level DDD" and xray says "severe DDD from L3 down" .

MRI in brief:

- between L2-3 - "annular disc bulge with mild anterior effacement of the dural sac".

- between L3-4 - (same as above as far as bulging disc) except that it says the disc is also "mildly compressing the dural sac", and, "moderate disc space narrowing" is noted. "Mild bilateral facet OA" present.

- between L4-5 - (same as above as far as bulging disc) except that the disc is also "mildly compressing the dural sac", and, this one also shows "moderate disc narrowing". "Mild right facet OA" present.

- between L5 and S1 - "mild disc bulge not affecting the dural sac", and, "mild right facet OA", and some typo I have not been able to decipher yet.

So, MRI says no "nerve root" compression, no "spinal stenosis". I can only assume the L3-4 and L 4-5 are the worse narrowed/bulging areas causing some compression on the dural sac which are causing symptoms for me?

I have had some slight decreases in symptoms, but not much, my trial of gaba and antiinflammatoires did not seem to help that much, avoiding certain postures, movements and exercises I think has helped, as well as just waiting (carefully) "over time" while trying not to aggravate anything. The hands-on chiro and the massage therapist i think is helpful. I stopped yoga for now, I try to go to the pool a bit every week and stretch a bit in the pools sauna, that can't hurt! I might join aquasize for some kind of overall exercise. Mostly I have just been doing walking as much as i can each day, my leg/foot numbness does not bother me as much when I am walking, sitting is bad, bending over is not good, sometimes even laying in bed is not good. I am experimenting in what improves it and what worsens it and going with that as a rule for now. I rigged up a slant board where i can lay upside down and try to open my discs/, dangerous getting on and off that thing!, jury is out on whether it is helpful (it might just be!), I lay there for about 15-20 mins. Chiro wants me to lay on a bolster under the small of my back for 20 mins each day, so, I am trying everything.

So there ya go, my "back" update, I will see a neurologist sometime in the near future - I too have not heard when that will happen Harry. I hope they do not keep you waiting too much longer - Harry did you ask for a copy of your imaging report to be given to you so you can read it for yourself or share it with us for our opinions?

Later, C.

Harry · Senior Member

Hi Canuck, how was your trip, I hope there was some good news for you, I'm still waiting to hear from neurologist for appointment,been thinking about it wondering what they will be able to do about numbness an joint pains ect,every Dr I go to over hear as soon as I mention just finished treatment ,they seem to throw you in the too hard basket ,last Dr I went to cause my fingers an feet were driving me insane offered me aspro,s 1 in morning and 1 at night ,didn't bother cashing script ,anyway hope your going ok.take care.

Tig · Admin

Hey Chuck,

My friend, I wish you the very best and a safe journey to the big city. I'm sorry you're having such a rough time with all these different issues. I know you'll at least figure out what's going on and will be able to make a plan that takes you closer to a more comfortable conclusion. I need to do something similar, but have had about enough of this nonsense. My brain is tired, my body is tired, everything is tired. Good luck and if they have one of their happy ah-ha moments, grab it and run for the hills! Tell your Chauffeur to take it easy on those mountain roads! We want you back in good shape wink xo

Harry · Senior Member

Hi Canuck, good luck with your adventures hope it all works out for you ,I'm still waiting to hear when I can get into see specialist about my neck problem s an numb fingers and toes ,jambed my dam fingers in car door this morning ,cold weather didn't help don't know if fingers being numb made it better or worse, have safe trip mate good luck with everything ,not too many Mac's hopefully,and watch those sleazy motels. cheers

5-1-18 · Guru

have a nice trip C

i go to GB surgeon on 7-1 ; the past few weeks i have had only a few very mild symptoms so i'll def ask for a new ultrasound to see if it stopped being inflamed.

i might have been passing a stone over the period that was so bad.

Canuck · Guru

New day, same ole shat ... rollin on down the road tomorrow, going to the next big town (2 hours over) to have my pictures taken, a repeat Abd CAT (deluxe? - would you like that with dye or without?), "I'll have the side of dye please, and a great big glass of water with that" ... then, the next day, the second course, I get a MRI of my spine to see what's what with my foot numbness and this lack of discs they see on my lumbar xray.

So, we shall see what kind of calcified crispy critter crustaceans the CAT finds in my kidneys, pancreas, aorta and who know what else this time!

I am dreading but also looking forward to getting more info on my spine with the MRI though - if that makes sense, and IF it does shed any helpful info on my back issue!

We'll see.

I get to go to Macs, DQ and Wallys and overnight at my fav sleazy cheap motel to soak in the hot soup of shed skin cells of millions (their hot tub). Yes, please, I'll have some bleach with that, thanks.

I didn't get to your fatigue topic yet Iris, but fatigue has taken on a strange new nasty ironic twist for me, basically a "new kind" of fatigue or "new reason/cause" for fatigue, just happening more this year - hated insomnia periods, it is really weird, unpleasant and very much not wanted! - how cruel is this! after all the profound fatigue problems I (and so many others) have had in the past, or, for those who still struggle with their energy levels now for various reasons. I have become the owner of many different kinds of ear plugs, brother!

Here's best wishes for a good rest to everyone tonight!

I'll let ya's know how the photos turn out.

Man, I hope every meal I do out of town doesn't end up being junk food. C.

Canuck · Guru

The "old" days (and the old days were NOT that long ago!), were tough times for treatment, the drugs so cruel. I thank my lucky stars, everyday, I am ever so grateful, that even though i packed the hep unknowingly/undiagnosed for many decades, that I did NOT get diagnosed sooner, otherwise the drug choices that would have been offered to me (prior) would have been far less than the ideal drugs I ultimately ended up getting in 2016. And lucky, lucky, lucky, after my cure on the easy drugs, my fscore reversed itself. So grateful indeed.

Tig, keep us posted on what you will do about the broken teeth.

That story you told us about your friends funeral/death - OMG, I can't stop thinking about him and his parents.

Such hard stuff we have to deal with in life.

Hey to everyone else too, and nice to see you too Scruf. C.

5-1-18 · Guru

i agree sruffy, it was that treatment or death cry . at the time my fibrosis wasn't too bad so they opted me out of the tx since i didn't respond in the trial period. they didn't even try a cocktail, just "wait for something that will work".

wish it had come along before i got to f3 , but i'm thankful to be cured.

Scruffy · Guru

Tig...Sorry for your loss.

I clicked that link on the interferon WOW, but that was only one med in the three drug treatment and the other two were just as bad. All in all I'm still thankful for getting it even though I had one foot in the grave for 48 weeks as a lot of us did.

Way back when Observer hepc and its complications were like a death sentence and a lot of us already saws deaths associated to it. We had nothing to lose.

Observer · Guru

Holy crapatoly Tig,

thats quite the list! I mean I knew about most of those issues but seeing it all listed with the dire warnings

I was moderating on a big HCV forum in the early or mid 2000s and saw/met a lot of people suffering through those sides and the on-going after effects of it.

I was one of the few that had opted not to treat....I figured all my heath issues came from the western medical mindset and it just seemed a bit ....experimental....and to suffer like that for a 30-50% chance... I had a hard time trusting it and many signs in my life seemed to point to the universe wanting me to wait....But I certainly empathized and cared about a great many people suffering from it as well as from the HCV ...

like I said it seemed to accelerate many symptoms of HCV.

Im super glad it rid you of the terrible beast but am so so sorry it burdened you with on going issues.

Tig · Admin

Thank you, 5! Time softens all blows, the bruises to our psyche, a little longer...

Tig · Admin

Hi Obs,

I read your message regarding the pitfalls of peg-interferon and wanted to share this bit of information with you and the others. It was a double edged sword, that's a no SH*TTER, indeed! I went through two rounds of that stuff. One before the pegylated (fail) and one after. Even though it killed my beast, it left reminders that haunt me to this day. You will see from this section from Drugs.com, it was nothing to take lightly. It was powerful stuff and was/is well known for messing with your skeletal system, primarily joints and teeth. Bone loss, inflammation and it's pressure on our immune systems, not to mention our mental status, was and is well documented. We have members that in the early days, pre pegylated interferon, that had to take it multiple times a week for an entire year. Some were even given the old stuff as some sort of attempt to control the viral count, which we know now is bogus. The viral load has no bearing whatsoever on the rate of success, especially now with the new DAA's.

Anyhoo, here's something to shudder over...

Peginterferon Alfa-2a

5-1-18 · Guru

tig, i hope the rest of your week goes better

Tig · Admin

Hello My Friends!

Well, I made it through the night, woohoo! I did wake up with an additional ache and pain, but only a couple and they aren't any worse than the other 20 or so, so I figure I'm going to make it through the day, lol. I had to go to a friend's funeral today, sadly, he fell while cleaning his pool, hit his head and drowned. His Dad found him sometime afterwards and of course it was too late. He lived there with his parents and helped with their care. He too was disabled from a motorcycle accident in his 20's, so they all helped each other. I can't imagine the sorrow and pain they are feeling right now. Makes my heart break. I didn't find out until the funeral what had actually happened. I was earlier lead to believe he had been ill and passed from cancer. Not the case, so it was a gut wrenching discovery for all of us. Makes you realize how fragile this old life can be. Hold each other tight and never forget to tell them you love and cherish them, it can be the last opportunity you'll have.

Thank you all for your kind thoughts and well wishes. It's extremely comforting to have all of you as my friends and what I consider family. We've all seen each other at our worst and more often than not, our best, since vanquishing the Beast. We all need to remember the love and concern we have for one another and I know our bond is forever, wherever we might be on this third rock from the Sun. If we're lucky, we will wake up tomorrow, a little bit healthier, and a whole lot happier. I know with you in my world, it's going to always be a whole lot happier! We've been to the Dark Side of the Moon and back, so we will always have our successes and friendship to remember each other by. That alone brings joy and happiness to start each day with. I like knowing I can call on your strengths to shore me up when my day is down and I'm here for you, too. We have a much to be thankful for...

May your Highest Power always shine upon you and yours! We are on the bright side of the equation!

Observer · Guru

Awwwww Tig

that is a really crappy day for you

I lost many teeth because of the HCV, just out of the blue...snap and ooops ...I even swallowed the first one because it broke off while I was eating a baked potatoBetween the breaking teeth the constant infections and abscesses and I finally just had mine remaining teeth all yanked and got dentures..

I always thought interferon heightened and accelerated a lot of the HCV symptoms. Like HCV symptoms on steroids or something... It bloody sucks that the effects of that medication are still ongoing even if its why you are HCV free

I sure hope you can get them dealt with quickly (I agree with Canuck,itd be nice if you could claim them as part of the rear ending, get that 18 year old to pay)

.... Sleep...now thats another tough one...I hope your Dr can give you some help with that.

-- Edited by Observer on Saturday 8th of June 2019 05:11:59 AM

Canuck · Guru

Hey 5,

You were asking Tig ... " any chance your doc will give you something to sleep with? " ... , ummm, maybe his doc can't, but there is high probability that that 18 year old kid who rear-ended Tig, (the one with the big fat bank roll of $100's) can! heehee Tig, when he rear-ended you, you probably checked your own trunk, it may have been more interesting to have opened his to see what he had in there!

Poor Tig. An oral disaster! Kids (no matter how charming they are) can cause high-stress-karumba, maybe, like me, you have been grinding your teeth with these younguns running around the house? We figure that's how I did two of my teeth in (weellll, maybe not JUST grinding - coulda been my ancient age, gum disease and the bone loss I battle too). My 2 casualty teeth are nowhere as financially scary as what they quoted you! NO WONDER you don't sleep.

I think you should make a new report, take those teeth to the police, and show them to the 18 year old and his Dad and explain how he hit you so hard you lost 2 teeth, and now you need at least 10 grand for some implants.

Dam shame Tig, you've had waay more than your fair share of dental grief this year - I hope you get something figured out. You don't need this, sorry for the troubles. There's always sumpin it seems - why is that! : (

Harry · Senior Member

Cheddy,wow what a day, think maybe you should have stayed in bed if only,IV heard some real horror stories regarding interferon ,I'm not sure of your age but I reckon bout my vintage ,I'm really glad we grew up in the olden days 70s lol,,sure we were crazy who wouldn't be growing up with the Doors, Janice, stones ect I could go on for ages but would get bit boring , I don't know if it's cause I'm an old bugger but I find it really hard to communicate with a lot of young people these days ,we use to be happy with a pair of vollies or gym boots not 200dollar sport shoes or if you had a pair of Levi's with no holes in them and a few dollars in your pocket you were going ok lol,over here there's a saying ,,youth is wasted on the young these days, I'm not saying all young people just some ,in fact I find it easier to rave to older people, especially if they did it bit hard depression ect,guess I'm just being whinging old bugger oh well, but I truly believe we were kinda lucky ,it was an experimental time some people were lucky to survive a lot didn't,but I really hope things improve for you ,guess we are lucky to have been around to witness all the changes,sorry bout the long rave, just getting my morning dose of coffee into me an trying to think strait, hang in there mate your a survivor..

5-1-18 · Guru

omg tig cry cry cry

what a night and day.

are your teeth and gums ok for the time being till you can get them fixed?

so you ended up not getting a police report? that seemed like a scary encounter anyway you look at it.

i hope you can get some rest somehow..... any chance your doc will give you something to sleep with?

my prayers are with you for better days and nights ahead.

Tig · Admin

Okay, seems like this is the place to update each other on the rest of our story, so here's my latest...

Just before bed last night, it's the place I go to toss and turn, doze and do more tossing and turning. As I was headed to the bathroom to brush the few teeth I have left, I got a mouthful of something hard and uncomfortable. Guess what, the Interferon has continued to destroy my teeth. Two more broke off, for no apparent reason. I guess they had as much as they could take and gave way. My mouth bled profusely all night long. Got into the dentist on an emergency basis and xrays show significant bone loss in my jaw. I've lost count how many teeth have broken or been lost secondary to my Interferon exposure. We've had a lot of people that experienced the same trouble. Most of you didn't get the pleasure of that fine, yet nasty drug and all of the adverse effects accompanied by it. The cost involved in fixing this dental mess, $5200.00 and that's for starters. Talk about discouraged...

If that wasn't enough, on the way home, a kid (presumably texting, because he was still typing as he got out of the car) must've been looking at his phone instead of stopping and rear ended me at a stop sign. Not much damage to the car that I can see, but he nailed me pretty hard. Everything in the car went flying. He jumped out and the first thing he wanted to do was hand me cash and get out of the way, he had things to do! Nope, nope and nope. With my history of spinal problems, I was going to get a police report and that didn't set well with him or his Dad, who spoke to me over his son's phone. Something didn't smell right, so I just waited. That's when the young man, 18 or 19, pulled out a wad of $100 dollar bills and asked me how much it would cost to just forget it! Are you kidding? I declined the tempting offer, but said no and went on to ask him a few questions about his school and whether he was headed to college. He said school was worthless and was a waste of time. So then I asked him what kind of work he was involved in, again, no job and no desire to work in the adult world. Good grief!! I decided I best just change the subject instead of asking him where an 18 year old with no job, no school and no desire to be part of anything, got a roll of $100 dollar bills that I have never carried in my life, let alone in a beater Buick and wearing running clothes. I swear, growing up ain't like it used to be. I don't think he got all that money mowing lawns.

I'll wait through the weekend and see how my back feels. Took some Naproxen to head off any inflammation and will wait and see what happens. This has been a lovely day so far and I believe as I say that, I'm going to find some wood and knock on it, hard.

My grandchildren are still here for another month, as I mentioned recently and that's a story for another episode of "Health Updates - Among Friends". I could use a Valium, if I had one, lol!! Be well my friends wink

Cheddy · Moderator

Rats! Harry, you did so well to get a new doc, but it looks like you have to keeping struggling through. As for stigma, it's up to us to dispel that idea. Don't EVEN give it attention. Even my doc didn't use gloves before 1990. It is possible that I got HCV from doing first aid in an emergency, good samaritan situation on the side of the road. Not saying it couldn't have been linked to experimental behavior but that doesn't matter now and we can't let it. So please put that out of your mind and enlighten them when it is in their own minds. Just ask firmly for what you want and ask how to get what you are entitled to.

Seriously, I'm not taking any guff for having contracted a now curable disease. Sometimes it helps to empathize with their lack of knowledge to keep getting what you need.

You have a nice opportunity to show them how it's really working now.

Mostly

5-1-18 · Guru

harry, over here in the western usa it's just an epidemic they want to cure.... no real stigma anymore since harvoni started that add with all the baby boomers "letting it go"....... they made us feel like it was just a problem that was associated with the times in which we got it

Harry · Senior Member

5,I V no idea what happens in your part of world but over here hcv still has a certain stigma to it, kinda like must of had a misprint youth ,plus a lot of specialist are really known for having the best bedside manner not all but some, mine was really friendly the only time I saw him for the whole 6 Mon ,I signed up for treatment, thankfully it has gotten rid of virus so far ,but I find it really hard to find out about neurology nerve issues, like are they just a slight side effect and will soon go away or are they with me for ever ,IV never had this before my local Dr has no idea,and Gilleard have never heard of it,went to see my Dr yesterday about if she had heard of when I can get in to see a neurologist ,only to be told that she has had family problems in England and has left the country and won't be returning in near future, so now I have no idea what is happening, maybe I will be able to find out more on Monday hopefully I thought she may have contacted me before leaving..bit like catch 22, lol.stay well.hope GB isn't giving you to much grief 5.take care.

5-1-18 · Guru

Obs, it would be fun to listen to our doctors "self-talk" when we walk in

Observer · Guru

Harry,

I used to joke that my liver Dr saw me as a carrier of a damaged liver...rather than as a person.

I agree with 5, I guess they want to cure as many people as they can. The Dr I had is the liver transplant Dr and top liver guy in Van...

I once saw him being interviewed on a news story {about people around here accidentally eating poison mushrooms and destroying their liver (or dying) }...... for longer than my office visit with him... but all that mattered is...he had a good team and a wonderful caring nurse was in good contact with me throughout my treatment. And I am cured

Harry, the viral loads go up and down a lot... when I first got diagnosed my vl was over 12million... 3 months later it was 3 million... I was only at stage 2 fibrosis

(I was offered interferon/ribivaron and declined)

when I finally decided to try treatment 15 years later....my vl was only 7K but I was now at stage 4 and have cirrhosis...

so yours could have been elevated by a weakened immune as evidenced by you needing a lot of antibiotics or a whole mysterious host of other triggers.

He may not have been curious but at least he helped you become HCV free.

Harry · Senior Member

I think you are right 5,I just wish they were as keen to make suggestions about anxiety or even prescribe something, after all they have you on DAAs that I really don't think have round long enough for them to know much about side effects,great talking to ya.

5-1-18 · Guru

i hear ya Harry; the docs just want to get as many ppl cured as possible and cant be bothered with the sides or possible sides as long as we are cured.

i just think they want to cure the epidemic of it for now....

5-1-18 · Guru

I hope to see your GB going back to school for some important life or death lessons in how to behave - some GB re-education/re-training/remediation to happen in it's near future, even it it take some corporal punishment and/or permanent banishment to get your GB not acting badly on you!

, hhahaha

yes, C, i agree..... detention or something.

there is a group of these docs so i should get into them fairly soon; then i will look for one who will do the surgery near my home to make the whole thing easier; but to at least get started yes!

-- Edited by 5-1-18 on Thursday 30th of May 2019 06:41:06 PM

Harry · Senior Member

C,I don't.know what it's like in your part of the world,but over here in my case anyway I was a bit disappointed in the amount of time the liver Dr I was to see pre treatment spent looking at my history, I must of been in his office 5min before I was signed up to start the Epclusa ,I'm.glad I did it but I feel like I was kind of rushed thru he assured me that they would always be there for nausea or anxiety or any problems but, I saw him once then he seemed to disappear as for liver nurses at clinic,they.all seem to have read same text book,when I asked about nearly going deaf in r ear and numbness all they could say was ,,oh that was probably going to happen anyway nothing we can do see your Dr,kinda like it was in too hard basket ,when I had the interview with liver Dr,I told him I was a bit concerned about my VL numbers being very high 22mill,his response was don't worry bout that, no suggestions why it had increased ,I thought maybe having heaps of anti biotics for dentures or the influenza vaccine may have had something to do with it,he couldn't really tell me,oh well it's gone now anyway,just hoping doesn't come back,I just really hope the DAAs have had anything to do with my nerves in neck looking forward to finally seeing neurologist,cold weather seems to highlight neck and numbness symptoms ,it's just a waiting game now.dont mean to be whinging but I think maybe a bit more time should be spent on older victims of people who have been carting this dam virus around, probably longer then the Liver Dr has been around.cheers everyone take care.

Canuck · Guru

Being that you are just such a naturally (incorrigibly) positive person, you, of course, have the gift of understatement! You said ... "it's no joy"... I can only imagine. This on-going stuff can be really hard to take, it wears on you in so many ways, it can be draining, it's not just a matter of the discomfort/distress/pain a GB is capable of causing a person but packing this problem around with little respite/relief no matter all the good things we do to counter, it more than just tough and frustrating (to say the least!). No joy is right tho, far worse than these major disruptions just being inconvenient, it is disappointing when some body part decides to protest/do it's own thing and create hell or havoc for us. I hope to see your GB going back to school for some important life or death lessons in how to behave - some GB re-education/re-training/remediation to happen in it's near future, even it it take some corporal punishment and/or permanent banishment to get your GB not acting badly on you! You so deserve some GI peace. Good you are working on making it happen. Keep pulling.

Suggestion - get the "name of the surgeon doc" they referred you to, if you don't already have it, look up his phone number, and call his office, track down his nurse or assistant (or just reception if that is all he has), and try to find out (in general) what his appointment wait-list is like, make sure they have opened a file on you, and in consideration of your particular case ask how long your wait to see him will be. If it sounds like it is going to be long time you might have to wait to see him, then perhaps asking the people who referred you to him, to "Re"-prioritize you as "more urgent" (if they will) - that may get you an earlier appointment? Just a thought. In a perfect world complaints of pain and discomfort should/would get you seen/assessed quicker.

: ) C.

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