crisis with hcv 1a

I'm returning to ask for guidance to find a hep c advocate in illinois urgently please.

a m experiencing many extrahepatic hep c manifestations, most scary. been off work and out of college for 14 months now, keep getting sicker and sicker. can't think anymore, am finding myself and family in hep c - medicare hell.

before falling seriously ill last Sunday with a repeated belly protrusion at hernia site, i was gaining back a few of the twenty lbs I've lost sinc july. we finally found where someone like me can obtain high quality compassionate health insurance and hcv treatment without prejudice nor ignorance that we are experiencing here. went to the er in pain for new protrusion twice, no help, sent home with pain,meds in total dismay. won't fix the protrusion, but will send,me home with meds that damage liver, insane.

had to call the hepatologist that kept promising but delaying treatment for increments of six weeks each. eyes turned bright yellow Tuesday, went away when the white of both eyes began to chunk off and detatch. now I can't see well and eyes are so dry. can't think, am confused, got bad scarring face rash back, migrane, chills-sweats, feels like I got creepy crawlies or extra hair all over,my body and itch all,over badly. so week can't make it across room alone. I'm in such a nightmare with this hep c right now. family and fiancé are here with me. we are all in total dismay st the total prejudice that had me turn to palliative care.

in pain, in dismay, totally confused as to how i let my hcv fully envelope my core being, i need help. been trying to call american liver association or any advocate for hep c advocacy info, they simply don't answer.

I don't want to give in, though i did for a month. I'm ready for treatment without prejudice or ignorance. can't get out of the house, am totally stuck in an anti gravity chair.

dad and fiancé get to take me to see hep wednesday. I'm positive they will again witness the,”she's fine, have her come back in six weeks to discuss treatment.”

i need,my productive happy life back. i can't focus outside this itching. am having,major outbursts of anger. need someone to talk to, i need help to get better - am beyond tired of being so sick. so tired.

that is where I've been seeking help from, a very large, highly esteemed, reputable university hospital in Chicago. the only logical reason we can fathom forthis lackluster treatment full of prejudice, issimply because the doctors there have not a soul to be accountable to, like a large health insurance company or international eyes. I'm not going to write Washington to complain about the lack of treatment for my personal struggle with this epidemic. isn't refusing care for the disabled and dying like illegal or at least, preventable? the entire family is dumbfounded at this surreal struggle. I do believe that one member of my family thinks we are making at least part of this,nightmare up - it really is totally unreal. welcome to my,nightmare - sigh.

I'm completely drained at this point, I had zero idea that I would find regaining health would be impossible and filled with twisted prejudice. i don't have any strength left to make additional futile attempts for liver care anywhere but where the government will quite,literally,be my voice through health care reform. this battle to save my life must have the backing of excellent health insurance, and the coordination of state and government. I'm dying, and need the best care we can obtain, but don't have resource for mayo clinic to endure 48 weeks of healthcare.

wow, if I'm having this much trouble trying to live, I wonder about the highest risk population, and the pure hell they endure dying like this, without the ability to locate advocate - like the homeless or poor or the humans in our prison system.

my challenge is nothing compares to that. when i finally do get care and healthy, main goal in life will unquestionably be all about hcv advocacy. ... nobody should have to suffer this much for this long due to the sheer stigma that is reality.

sorry. i must sound real whiney. this disease and its other manifestations such as osteoporosis, etc. has totally changed,my personality. I'd really like to have my life back, it was awesome!!!



peace to you, and thank you for the reply

Hi, Shadow! Sorry you are having such a rough time. Do you have any insurance at all? Do you have a PCP? It's disgraceful that you have to suffer so much. I agree with David: Try to find a different doctor. There used to be a different site online that you could go to, but for some reason I'm unable to access it now. I would write to my congressman, as that often gets the attention of someone who can truly help you. When I had no insurance, I went to the county hospital. The care was downright dangerous or nonexistent. Mayo only accepts certain insurance plans. Thank goodness, I got Medicare or I would be dead by now. Mayo gave me a new liver last Oct., thanks to Medicare.

I hope others here can input more info for you.

Big hugs,
Connie

mama lama,

my fiancé and me got the chills. i just read your post to him. I've still got the chills... Mike is me too. same exact here, had the EB in the early ”90s was sick one year, but had hep c since gee turned yellow in 83 or 84. . . yes,mono sick for long time, total grouch, was very moody depressed.

they even tried telling me that i was mentally ill. put me on meds for.depression. i was so tired, and kept thinking I'm unwell medically. about a year went by. i finally grew a spine got out of bed for me, marched straight to the medical doc said test me for everything, everything that ya do and especially what ya don't normally cause I'm sick.

doc came back week later, said u have had EB all year, and when were you jaundice cause you have ”sub hep b.” i was shocked but totally aware of when i was yellow as a kid. anyway I took all my and my then hubbys meds, placed them on docs table and as i was walking out said don't do this to your patients... about all the drugs we didn't need.

told one other doc in the mid 90s when she asked had i ever been sick. said i had the EB and ”sub hep b”” ... she looked right at me eyes wide mouth open said, ”darn were you some drug lord girlfriend or what?” I never mentioned it again.

can't really think much to write more, but wanted to let you know how your Mike sounds wicked close to how my life has been, so close I got the chills and started yelling out to my Paul , hey there's, more just like me, i mean exactly wow.

yes i stop beer when I'm sick, never was a big drinker. i go thru phases of wanting beer then not,. been off beer since November, am today quitting smoking again. hard on the body. was on bunch of.meds for pain when I ”gave up” now just on estrogen one no Tylenol pain med for hernia thimgy.

hey I'm real sorry about Mikes cancer. his struggle though helped so much with mine - me too me too same here, just thankfully without cancer . wish you could talk to my Paul. he's scared and we both think I'm dying - I look it and am acting way out of character.

back to ur question, and thanks for asking and for writing so clearly. havent been able to sit upright most of the past year, am stuck online from an Android. no big screen to scroll up and see what you wrote. oh yes, dad came over told my Paul that I'm clearly not thinking, for him to take charge and take over, be my voice. so yes, I'm beer free, foggy at best, and got family and friends.

don't think my liver doc is aware of the past gee, three no four nearly year long bouts with strange yet severe illness they kept on missing the hep c.. side it was EB -mono first time thru bllod work, actually MS second time, severe eye issues led eye doc sent me to neuro, found some lesions. that was in 2004. again knowing no way could I have that, after a year i got better moved only to fall ill with mystery lung stuff on 2007-2008, was unable to think then too. wow, mama lama. my liver doc is unaware, but I'm going to have Paul tell her, she needs to know.

this time has defo been the wurst, all the stuff I experienced before is same yet much worse, yielding those 5 ribs that broke one by one over 6 months - this eye issue what is up, why the eyes, why so bad? major vision issues with each but the first long mystery illness.

good lord im so sorry you had to watch your Mike plummet into the hell some of us are finally aware is a battle with the king, hep c.. I swear to you from my family to the docs, except me I am out of.it, they all shocked at the multitude of,nasty symptoms - its all making total sense now.

umm so now I need to what, have Paul write all this history , as insane as its been, give to liver doc so she can actually be aware so she can help me? I'm so confused, i know my entire personality is different, I don't like it one bit. nor does Paul, but he puts up with me, so sweet. wish you both could talk.

ok I'm going to end for now. thanks, really thought i was at the dang end, really feels that way. got to get better, don't want to go out like this, need appetite back, medical help - its happening Wednesday, dads even going with. sorry to ramble, not whining, just can't believe others are out there just like me, thought I was either a hypocondract or dying or insane, I'm crying so happy to be aware!!!

hugs, and,many thanks for sharing. you are helping me out way more than i can say, thank you.

~peace~ shadowcptn

connie:

thru so many bouts with ”mystery-complex” medical issues, docs kept thinking mental illness. i was not okay with these bouts myself, thought I was crazy. tried to kill myself, being so dang sick with zero explanation resulted in several attempts. heartbreak did too. finally went along with the fact I would get extremely ill with no medical explanation to match my severe symptoms, am bipolar. though my bipolar friends tell me I sure don't act like the majority of bipolars. anyway, my final straw with life (so i thought at the time) put me into a coma. I survived with some brain damage, or as the docs like to kindly call it ”brain injury.” had memory loss to an extreme for three years. psych docs put me onto psychostimulants which helped. one type would stop working after many yrs, psych put me on a different one. now nothing works to clear my head, been so bad this year its terribly embarrassing. once I saw my eyes bright yellow short while ago, I realized why the add meds don't work now, so stopped taking them. dissed most of my meds. am in great physical pain, so stayed on one pain med to thwart screaming out in pain.

umm back to your original question... liver doc would not only make my frantic primary doc wait for an appt for well over a month, liver doc would see me, strictly ask about past and current drug liquor use, nothing else. sent me to see multitudes of specialists before starting treatment. they all treated me and,my fiancé poorly... first thing when any of them would walk onto the room, ”how did u get hep c..” jerks. the specialists the liver doc had me see would not only yield no explanation, but flustration, zero answers, and with each total worthless experience, my treatment for hcv was delayed 6 Weeks then another dang six Weeks, you get the picture.

now I'm wicked sick, Connie. umbilical hernia that nobody can or will say why keeps happening (need answers) with the stage-grade 4 liver inflammation, I'm not okay. now they won't fix this third protrusion, I've still no answers, and am literally stuck inside wasting away. lost 20 lbs. since the second hernia in July,. cannot think, eat, am only half awake.

seeking answers ourself, we found where this has turned political. found out obama is fully aware of the struggles of hcv--medicare ”complex cases” (just like me) are being overlooked, treated with prejudice (amen), and recently implemented healthcare reform with California. helping the multitudes of hcv (and hiv) patients who have gotten zero help to treat the root cause, hcv.... its online, easy to find.

with the ability to purchase health insurance in act, liver clinics there are being inundated with the very ill seeking and finally receiving treatment. i cried, so did Paul, when we read all about the new plight to finally allow medicare hcv folk stop being ”mefical mysterys, complex cases” and getting help with zero prejudice. I've downloaded the presidential campaign .pdf -

anyway, my fiancé is from Cali. we had so dang much prejudice and zero treatment, huge medical problems docs here would say you're fine, we can't help you go home... we had enough! found a fantastic insurance that I qualify for, found how to get it expedited once there, and found and contacted the liver clinic, one of many, that can and will treat my hcv and its manifestations that docs haven't been able to find root cause for. the list is huge.

that was my long answer of ”yes” I'm not getting treatment, and have already located and contacted this liver clinic I speak of. I do need a new liver doc, am extremely unwell, and the uni hospital I'm being seen at is totally repeating what so many others have been able to get away with, treating me and Paul like lepers, saying your fine, please go home.

my primary doc is aware of this, and though flustratrd also, her hands are tied.

with that being said, I'm taking dad and fiancé to liver doc this week. will have Paul give her the history liver doc didn't ask for, let her see for herself how terribly sick I've become, and wait for the ”she's fine, have her come back in six weeks to discuss treatment” as per her usual routine.

our plan is to get my record of.biopsy, diagnosis like we were told to do by liver clinic in Cali, and if I'm stable enough, get the hell out of this state that is quite literally killing the medicare-hcv population by simply saying that we can't help you go home, or by delaying treatment until folks just like me are too sick.

sounds like a.conspiracy, but its what me and the family, and finally all,my friends can actually see now - nice size painful belly protrusion? no help, just the typical year long identical, ”go home we can't help you” speach..

I will post a link of the presidential campaign with California for health care reform targeting the underserved hcv medicare-medicaid population. sadly, even when I was not disabled and was working, when I'd get seriously ill, docs would save me from the kidney disease that nearly killed me twice, but would not look into the reason behind it happening to begin with.

we are on a quest for my health. I'm so dang sick now though, I'm hoping to have the strength to make the flight, quickly educate Paul as to what I've found as to acquiring logical help at long last to get my once productive life back. need to do that in the next day, so the financer can see the current campaign of Congress and Cali to help and treat the thousands just like me, with sadly similar stories.

hard stuff.to accomplish while so sick and unable to think. want to give up and just stay here stuck inside sick as dog and just pray lots to have this helish hcv episode end. but i can't. I've got to acquire health insurance, and get to the liver clinic I've chosen and contacted.

hard stuff to believe, huh? it is by far the biggest struggle I've had all my life. so twisted mean to have been left in this condition, going downhill faster now than when this all began.

when i do finally get help, and treatment once I'm well enough, and viral clearance, I'm coming back to Illinois to advocate for the thousands just like me. so hard to believe this is really happening in America with the hcv non addicted population, but it is. will post a link to show everyone what I'm talking about. hope i can somehow stay focused and out of pain to post link soon, I'm in crisis and my Paul and I in total dismay at what's happening - suffering so much for a full 14 months,.Gotta end quick, I'm very sick.

thanks for reading what took long time to post. and for e'en responding and caring - I lost this URL once, hope I don't get lost again.

~peace~

Shadow, I would advise you not to overload the hep doc....no politics. He won't want to read it and "just wants the facts, ma'am." Don't unleash all your bottled up-frustration. This will not help your cause at all. Bottom line: Does HCV come up positive in your blood work? Are your enzymes consistently high? You only have to sign a release form to get the results of your biopsy. They usually charge by the page--anywhere from $1.50-3.50 per page. I got all the operative reports, ongoing blood work and reports of everything done during pre-transplant evaluation and during and after transplant. You do need to get recent blood work results, or the most recent that you have. I'm sure the doctor will want to do labs, too. They are men of science and as such they are more interested in numbers than your personal complaints.

I fortunately have not been denied treatment due to hep C, cirrhosis, or liver cancer-all paid for by Medicare. Medicaid pays my monthly premium based on low income. When I first was diagnosed with HCV, I did experience some discrimination as most folks--even medical personnel--did not know much about hep C or how it was transmitted at that time. But that was in 1993 and people are much more knowledgeable now. The majority of hep C patients acquired their HCV through dirty needles during drug use. There's also a very large number who got it through transfusions prior to being able to screen blood products for it. The rest are usually folks who have no risk factors for C and can't explain how they got it.

But all deserve attention and treatment.

Hugs,
Connie

Shadow, I've never heard of HCV causing a face rash. Could that be from another condition? A general surgeon will do your hernia repair, most likely. They don't have "hernia clinics." They may not want to do another repair if the first two failed.

I certainly hope you get the care that you need. Hospitals usually have a patient advocate. Check it out.

Hugs,
Connie

I understand your concern for medical insurance and I face similar problems with the system . No logical conclusion has been found by any political bureaucrat to date for this train wreck , It's simple math and no way you bounce the figures around the only real conclusion is drastic cuts across the board in all sectors including " Entitlements " . It's not a popular subject but one that will be confronted like it or not by any candidate or political airbag in short order soon .

Beyond what you here at conventions use a real life example . Balance a check book with a several trillion dollars in uncleared ( dept ) checks in it and you only have a trillion dollars of actual cash in the account . This has been happening for years and has increased substantially recently , Ask yourself who's gonna pick up those bounced checks when they clear ? If not your children or grandchildren ( If lucky .... Huh ) . Who ? Or does that matter ? Nothing including medical services are free nor should they be , Ask Europeans how that worked out for them . Our system would be fine if we didn't allow individuals without citizenship or those who obviously bilk it for all it's worth without paying in a dime .

I got a feeling Cali will be the first to go bankrupt due to this problem so better get there quick .



A. Ziffle

news, dad and fiance thing me to the liver doc who couldn't figure out the manifestations I've been presenting are, per hcv advocate on phone and am liv foundation told me they are all huge hcv manifestations, get to new more knowledgeable liver doc quick. so wow she never got a history on the many sporadic yet long bouts with hcv,, never asked,me a thing except did or fo i use drugs beer. gee, now I'm , no joke, sister said the few nasty symptoms i shared are serious, and dad and Paul are making me go back to see from a.doc who didn't want to even know how sick i was, now its urgent I see this bimbo at the sane hospital that left me unable to walk cause they wouldn't repair this painful protrusion sticking out of the umbilical surgery site? Am I really this confused? cause I'm not wanting to go back and get treated like hell again. so much pain, confusion to the,max, I just don't get it. to see if I'm ok to travel, that I get. but wow, they have done nothing but run us in circles, send me home beyond the horrible liver kidnry lymph neck pain. they are going to put me into shock poking on,me where i hurt, and do like normal, send,me to yet more specialists, or once again cruelly say your fine, go home. I'm getting my dang records though, I don't want torture care, nobody deserves this. I'm real confused, badly...,but my fiance was even horrified when they continually said we can't help you go home. wow, this is.hell. why do we have to suffer like this, so tired. end vent.