| Susan |
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| #1 |
I had emergency surgery in 1978 and was given 2 pints of blood and 1 pint plasma. in the later 1980's I started to feel sluggish at times, went to my doctor, he ran blood tests, said everything looked fine. Back then, I was physically active, and still I could not shake this tiredness off, but I dealt with it. I started to get red rashes on my arms and |I would become so itchy I could barely stand it.. It was la bled a stress reaction.
Here is my issue. The same Doctor who cared for me in 1978 continued to care for me until 1993. I found out he never did a Hep C check. If any doctor should have known it would have been this doctor since he had my records of the blood transfusion. Why did he not put this together?
Also, I don't ever remember any blood bank sending out an alert regarding blood transfusions prior to 1992.
Why was this not brought to my attention earlier? Instead, |I find out in 2008 that I have it and I have had it at least 20 years according to the specialist I am seeing. Looking at my personal history I really think I probably received tainted blood 30 years ago.
Why didn't the blood bank do the responsible thing and contact people who received blood products to get checked? Did I miss something? I am angry!
Why didn't my doctor check me for hep c in the 1980's given he had my medical history. What happened?
I am undergoing treatment I am feeling so lousy, I never know from one day to the next how I will feel. I lost my job (of 14 years), I am now unemployed for the first time, Within one year I used my savings, had my car repossessed, denied unemployment, still collaborating with the Union to secure my job back (Union is useless).
I know this message is a bit negative and would invite words of encouragement because I really need them.
Hep C has caused havoc in every aspect of my life for the last five years, and didn't find out until this year
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| | | Milret2 |
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| #2 |
There was no effective way to screen blood for hepatitis c until 1990 .. the method used then was not very specific and was not terribly effective. It was the spring of 1992 before an effective and specific method of screening blood was available. In the mid eighties the hep C virus was identified by investigators at CDC and Chiron. Before that time it was known that there was a non A non B hepatitis associated with post transfusion illness but specific identity was impossible.
Unless your physician was a specialist in hepatology, infectious disease, or liver disease it is QUITE possible that he was not aware of the possible significance of transfusion and it's possible relationship to nonspecific complaints. Even now, at the primary care level, adequate continuing medical education about this epidemic may very well be lacking. Here is a report to congress, ten years ago, that may shed some light on how things were moving then .. and I doubt they have improved all that much in the last eight years.
http://forhealthfreedom.org/Publications/Monoply/hr820.txt (if that URL does not work use your browser to look for " 51 351 CC 1998 Union Calendar No. 461 105th Congress, 2d Session " ).
In the 1980's there was no knowledge of hepatitis c at any level lower then some very sophisticated research laboratories and there was no effective way to diagnose or track it. Effective treatment (where there was any reasonable chance of a sustained response greater then 10% or so for most patients) did not come about until late in the last decade with the introduction of ribavirens and the pegalated interferons.
The disease burns slow and subtly in most people who have it and political will to identify victims as well as funding for such education needed appears, to me, not to have much power. There are also subtle stigmas attached to this disease (like many others) that make ignorance easier to maintain by many.
You have my sympathy and I am sure others will respond here. I also have some degree of sympathy for the doctor who cared for you back in the late eighties and early nineties. Not many medical people, even at higher then general practitioner level, had much (or any) knowledge of hepatitis c in the early nineties. I hope things get better for you. Have you looked for a live hep c support group in your area? You might find some relief or at least greater understanding of youyr suffering there. If you need help finding such support I can provide some links.
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| #3 |
Join the club. I got mine in a blood transfusion in 1991. Funny thing is the blood that saved my life could also kill me. I got angry and then got over it. They couldnt test for it back then.
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| | | Jayhawk |
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| #4 |
Hi Susan,
That's terrible, and I'm sending out hugs your way ((((susan))). I was also cared for by a doctor in 1978 who knew I had hepatitis, but back then they called it non A non B because there wasn't a name for it. He never got back to me over the years. Then in 2004 I donated blood where I worked, found out about the Hep C. I was also tired at times, but could have been raising a family wore me out. I think there were too many of us, how could they track us? And my general internist never ran the Hep C test either.....even though my liver scores were high which is the first clue - around 40 to 50 and now are in the 14 - 15 range. That much comes out in a standard blood test!
Celeste
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| | | susan |
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| #5 |
Thank you all for your information and encouragement. I now understand the doctors position at the time. I was able to pull up the 105 Congress, 2nd session from back in 91(Ithink) and still found it to be irresponsible on the part of the Human Health Services for not following the recommendations of the Congress, nor for Congress following up on it either. I need to familiarize myself on How, who, what, where and whens of congressional sessions. Maybe back then the HEP C could not have been treated, but if we had been made aware of this, I know a lot of situations could have been avoided. Half the battle is just sometimes knowing. Not knowing caused more stress and frustration. And now 30 years later I find out?
It is just not right. I am not sue happy - never have been. But I read something about Japan's Government and 2-3 Corporations that sell blood products settled with a group that are now suffering the effects of tainted blood.
The US Human Health Services realized the expense of providing the test just for the virus. HHS predicted how many people would be affected within ten years and they were pretty right on. Somebody chose to ignore the problem and in doing so, showed complete disregard for people such as myself. It wasn't just me, but a whole lot of people out there that had the right to know. Without a doubt, this has changed my life in several major areas, and I can't be the only one, or could I? Nah-h-h I'd like to look further into this to either come to an understanding, or come to definitely believe some decision makers made decisions that caused a terrible mis-deed to those affected.
I initially had some anger for the doctor that had treated me for years and was well aware of my transfusions, and still missed diagnosing me, but Milret2 gave me some great information and resources that made me see that this "virus" was just beginning to raise its head, and doctors were still unaware for the most part at that time.
Thank you all so much for everything! Wishing you all a great day!
P.s. I just started chatting and I think this message is in the wrong spot - I'll figure it out eventually.
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| | | Sher |
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| #6 |
I also received a blood transfusion that was tainted with hep c. That was after the birth of my daughter in 1983. I attributed by fatigue to raising kids but about 10 years ago went to an endrocrinologist to see if there was something else causing it. I was tested for thryoid and a gambit of other things only to be diagnosed with chronic fatigue syndrome... I think they use that when they have no clue. My primary doctor said I had elevated liver levels but said that was probably from advil and I didn't think much more about it. In 2006 I fell out at work... vomiting blood and spent 3 days in ICU with esphogal varices. THAT is when the Hep c was discovered. With no insurance I couldn't get a specialist to see me although I was told while in the hospital if I didn't get treated I would die within 5 years. I discovered a clinic about an hour and a half away and went there seeking treatment. After running some tests they informed me that I was too late for treatment and told me that I needed to somehow get on a transplant list or I would die within 5 years. Here's the kicker.... I am divorced, no insurance and I spent over a year and a half trying to get someone to see me. I have spent days on the phone, written letters to delegates, etc and still got the door shut in my face. I made too much money for medical card but I had to keep a roof over my son's head. My symptoms have progressed over the last year and I have been under the care of a nurse practioner that has no clue what's up with the hep c. My ability to work has been a constant decline and I finally was able to receive SSI (with that goes medical coverage) I have spent up all I had (3 grand income tax return) The bill collectors are calling off the hook and I now have to have my son... 19 now... contribute to the rent BUT for the first time in this horrible nightmare I was able to see a REAL doctor at Hopkin's .... My NP did not send my records although they had 3 months to do so BUT this doc has done blood work and a CT scan and prognosis is pending. I am greatful for this but valuable time has been wasted. Sorry for the rambling... bottom line... I am furious that I didn't get a heads up that I had received tainted blood and I believe someone should be accountable. The same health system that gave me the blood turned their backs on me. Good luck to all with this horrible monster... |
| | | birdie |
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| #7 |
hi sher
i am sorry you have had to endure
the long and very difficult journey
which you have described-i will keep
you in my thoughts and prayers.
the anger and frustration over the unfairness
of all of "it" is certainly justifiable-
i have had the same-at some point i had to
turn it around into forward positive movement.
this, for me, meant finding a clinical trial in 1999-2000,
5 hrs away from my home-i had no doc, no $,
nothing really--but i did have at that time a 4 yr old
little boy and he was going to need his mama to be around-
oh, his dad is here but we are not married--more like parental
roomates- i found out i had hep c in 1994
through red cross donation as they were screening for
hep c by then. its only been since about 1989 or 90 that
the blood supply has been screened. before that hep c was
known only as non A non B.
unlike you, i do not know where i contracted hepc. i never did
intraveneous drugs, never had a transfusion the two top ways.
thinking back i feel i may have had this for a long time-
perhaps even as a young child. why? this may make no sense
but i remember having trouble in my early teens with my gallbladder-
although would not have been able to identify that at the time.
i had a horrible gallbladder attack in the middle of the night in
about 1993 but had had symptoms leading up to that which
i didnt know what they were.
anyway i had those same symptoms when i was a teen-i was told it
was growing pains-take an aspirin and keep going. i believe, for many, that the gallbladder is the first to go with hepc-although you will be hard pressed to find a physician who will admit this. i have a feeling that i may have
contracted this in elementary school when we had a couple
mass school innoculations(late 60s-early 70s)-but that is only
my thoughts- i have no proof. it took me years after finding out
to force myself to stop thinking about how i got it. i had to think about
how to get rid of it. mine is type 1A- the worst to treat.
i began educating myself about hepc. i did research, became familiar
with the terminology, i read medical journals, i called drug companies,
went to the free clinic but that was beyond there expense budget.
after reading and learning, i found the clinical trial, entered into it
and began the hellish 48 week regimen that i hoped would
"cure" me -known around here as SVR(serum viralogical response).
looking back i wonder how i found the
strength to drive to fairfax, va. 4-5 hrs away,
do the appointment-get tests, refills of 3x a week inteferon w/
ribavirin, have a cooler to keep it in and then drive back home
the same day and fill the mom job. taking those shots 3x a week was
indescribable agony-for 48 weeks i did that-pain,depression-
-suicidal thoughts and this horrible itching-i had itching so bad i treated myself for lice. anyway the treatment(tx) was not successful.
in 2002 i entered another trial, blessedly 10 miles away, but i was randomised into the pegalated inteferon group only, then if i responded after 12 weeks
i could have the ribavirin--again no success. after that time i began the proccess for SSI w/medicaid. the third time for treatment was
initiated by me because i had read that in order to be eligible for future
trials i had to be a proven non-responder. this time it was covered. the
tx was stopped at 26 weeks as i did not respond and my viral
count went up.
and so here we are and i am still a walking, talking virus-but walking and talking non the less! i still suffer greatly w depression and antidepresants
do not work. i do however take 2 12.5 amitriptylene and 1 500mg methocarbamol(robaxin) once a day at bedtime for my chronic pain and anxiety and it helps to sleep. i have lost some weight over the last year
and have been doing some light volunteering here and there and
helping an elderly woman run errands or just help, no pay. i think about
all the time i frittered away when i was young and had the world at my feet-or could have. but in the here and now i can only try to be here for my almost 13 yr son and his father. i can hope that someday soon i
could perhaps have a small job and keep the medical benefits.
i really dont have any great pearls of wisdom for you but i would suggest
reading and research, not drinking alcohol and try to walk or exercise in some way fitting to you and take it one minute at a time if necessary. i cant promise any or all of that will make it better but it may not make it worse either. just put one foot in front of the other and keep moving forward
trying to do the next best thing.
sorry to have gone on so- i hope you can write back to let us
know you are doing ok.
hope thanksgiving is good for you and your family.
birdie
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| | | susan |
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| #8 |
Sher, This is really messed up. I am not through with this. There is a class action to help veterans, there have been class actions outside this country, Japan just recently settled a multi-million dollar suit (involved were victums, 2 companies involved to selling blood products. Why isn't this happening in US? I for one am going to check on this - the sad thing is - had people like us been notified earlier we might not have the problems today, not to mention all the years of trying to maintain a home while feeling like your losing your mind. My love and healing energy goes out to you. The reason I feel a class action is needed for people like us is our life has been altered greatly by this disease - and had we been notified whether it was mass media, or by other means 10 years earlier we might not be in the position we are in. And, we are not alone, there are still people out there that have been infected for years and still don't know about it. I am aghast that nothing has been done before now. Hang in there.
I am new to what steps to take but I am not giving up, for my sake, for your sake, and the many others out there! Keep your eyes and ears open.
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| | | melinda |
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| April 22, 2009 at 05:03 PM |
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| #9 |
I was just diagnosised with hepc. I got it in 1982 from a blood transfusion after giving birth to my son. I knew I had hepititas because at my 6 week check up the doctor stated I was jaundice, tested me, said I had non a non b. I had to stop breast feeding. They gave me some kind of shot. Tested my blood a month later and said I was cured. So I never worried about it again. Through out the years I have suffered from fatigue, depression, muscle and joint pain with some side pain. I never thought anything of it. I have always been one of these kind of people that unless I'm bleeding or a bone is sticking out suck it up! About 3 years ago I decided that my personal problems could be settled by drinking. I've never been a drinker, but when I decide to do something I always go all out. I stopped six months ago but the severe pain in my right side did not. Through out the years I've always had aches and pains and whenever I did go to the doctor they said it was all in my head after several tests. They did find a 24 lb tumor once and removed that but other than that it's always been in my head. So after the drinking spell and four months of continous pain, I broke down and went to the doctor. After some routine blood work, whah laa! I have hep c. Of course I now know the drinking did not help this since I have had this silent disease for 26 years. I am angry!!! Our blood supply was tainted and our government is not doing anything to help the innocent victims of this illness. It is the ones who were infected with blood transfusions who are now having the severe symptoms of hep c. It is almost as if they have been waiting to see what would happen to us as the disease progressed. They don't know what will happen to the recently infected who have been infected by the other ways because they are recently infected and are treatable. But the blood transfusion infected are 20 years old or older and genotype 1. In Canada they are offering help to the people infected by blood transfusions. Why has our government abandoned us. My symptoms now are severe pain in right quadrant area, severe weight loss (100 lbs in 6mths size 4 now) and possible cirrohisis, going for tests on Monday. I want to do something but don't know what!!!!!!
Melinda
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| | | LA |
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| April 23, 2009 at 06:27 AM |
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| #10 |
Hi Melinda,
Your story sounds a lot like mine. I probably contracted HCV from a blood transfusion over 30 years ago. Had symptoms throughout most of my adult life. Thank God, four years ago, one physician was wise enough to test me for the disease.
I was 1b,and have been clear of the virus almost three years now. If you don't have insurance perhaps you can get help from Medicaid. Some doctors will work with people who can't afford the cost of treatment, and there may be HCV drug trials which offer free meds.
There are options. This website has great information, and you may want to check out the "Janis and Friends" website.
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| | | karen |
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| #11 |
I too like many recieven a transfusion 35 years ago , and about 13 years ago found out when i donated blood. told my Dr. he said not to worrie you'll probaly die from some other diesese.I recently had my blood work done and the nurse called me with the results, she said "everything looks fine it doese'nt even look like you have hep-c", so why am i tired, nasueated , my liver is tender and feels heavy when i walk areound"I am on antidepresents and anxiety pills, any thaught on how the #'s affect hep-c, do they really count?
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| | | LA |
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| #12 |
Hi Karen,
You should see a doctor who specializes in liver disease. You will probably need a PCR (Hep C viral load) test. You may also need a liver biopsy to determine if you have liver damage.
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| | | smile |
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| #13 |
Yep! You need a liver biopsy to really know the state of your liver.
lee
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| | | smile |
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| #14 |
The liver biopsy should not be a big deal. In and out unless they goof. Then it hurts like a B#$%&! They goofed on me but most people have no problems or bad pain. I have heard that your count really has no impact if it isnt effecting your health. I had a high count but with no problems. Just dont drink alcohol or any other liver negative practices. |
| | | Red |
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| #15 |
I too got HCV over 40 years ago from blood that prolonged my life. I also show antibodies to HBV. The symptoms vary from person to person, and I feel for each of you/us. I guess I would say that I am OKAY with my situation, but I have known for a longer time than most in this thread. Take care of all parts of yourself!
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