Re: Re: How Many OF THOSE HERE ARE IN THEIR 50's??? - Me my HCV story and warning it isn't pretty but ends great

[Guest guest]

Whew!! Your journey will certainly serve for inspiration! We should all recognize that there is always someone else with a tougher battle than ours. Thank you & may God's light shine on you always.

.......52 years old & bitten by the dragon in early 80's...

Re: How Many OF THOSE HERE ARE IN THEIR 50's??? - Me my HCV story and warning it isn't pretty but ends great

The majority of us are in our 50's and a few older.

I'm 54 will be 55 next April.

I have had very Chronic hard to tx main geno 1a probably mixed geno's from massive amounts of contaminated blood transfusions giving birth to my daughter 32 years ago. I had a complete placenta abruption placenta torn apart right before delivery. Once my daughter was born I bleed out completely lost complete blood volume plus more. I watched her delivery she inhaled large amounts of blood coming out her mouth nose everywhere. My daughter and I were not suppose to make it. They put her on my chest and I knew I had to fight to make it for both of us. They called a priest in we were given last rights.

It was a Miracle we both made it.

The Dr's staff worked very hard to save both our lives but in exchange I was given massive amounts of known tainted blood Non a Non b hep which was legal at the time gov said no medical problems with it in nat'l supply in blood banks many blood banks for profit and with medical practice guidelines. I was told no lasting medical problems it's not serious will clear up on it's own. I was in the medical field knew enough to know better. I fought all types of Dr's specialists for many many years and was told I was just a stressed out overwhelmed female young mother working full time here take these nerve pills. It was all in my head and all my symptoms fatigue muscle pains myopathy neuropathy even at that time related positive labs and false positive rheumatoid arthritis RA labs was unrelated to non a non b hep because liver labs were normal until 20 years had passed.

The gov and world health organizations know about non a non b hep for many many decades but decided to do nothing about it. We were too much of a liability responsibility and quote would bankrupt the medical systems from hosp's - dr's - nursing homes - pharmacy chains to insur co's - medicare - medicaid all the way down.

We didn't quietly and slowly die out and HCV became a world wide epidemic blamed mostly on IV drug users and again from us from the 60's. HCV was in the general public and in medical practices hosp's contaminated with it and in the worlds blood supply. The general public was not informed still not informed enough or for ordered general testing of it or how it is a blood to blood stream contagious form of hep.

Our #'s and our fight was to large to ignore anymore and it took the gov until 1992 to rename non a non b hep to Hep C test for it in the nations blood supply and for blood donors.

Medical records and blood supply donor and pt's receiving blood are kept on file in national archives pt's listed by #'s and all info. After admitting it in 1992 a national law was passed to send out certified letters to all pt's receiving than called non a non b hep name changed to Hep C a very serious form of Hep to get tested and seek medical attention for it. A very few token letters were sent out and the rest buried in archives found many years too late for us.

Like the majority of us I never received my letter.

With admission and new laws renaming it to Hep C in 1992 checking blood donors supposedly cleaning up the nations blood supply the gov than were liable and responsible. They than very quietly passed a class action law suit for us told no problem with non a non b hep from know tainted blood. It was kept so quiet we never knew about it and with a short date time to file for it or privately until it was closed.

There are national groups still trying to fight for it and for our complete medical care and compensations but it will never come to pass. I will never see it happen in my lifetime or my great great great grandchildrens lifetimes or ever.

The burden of proof is on us and the laws on there side. Since HCV can be contracted in sooo many other ways in the general public so much they said it is impossible to link our HCV to just non a non b blood transfusions. We could have contracted it in so many other ways and also self inflected drug use or by being promiscuous too many different sex partners with unprotected sex. We were from the 60's and 70's hippie generations drugs peace and love and lots of sex.

Many other nations including Canada has admitted guilt cover-up and has compensations and medical help for HCV pt's. Not the U.S.

Vietnam vets have the highest % of HCV because of multi use air guns just changing tips with power you also have suction back in and multi used on so many vets plus war wounds in the field. The gov admitted the old air gun was not safe came out with new model. The official statement it is much safer still multi use changing tips only with a much lesser % of chances of ctaching contageous diseases including HCV. It is not totally safe yet and still in use today.

The military doesn't just use those air guns on military personal. After a major U.S. diaster military comes in takes over and is in charge. Just like after Katrina my son is a police officer special forces rescue and swat team. The milatary was in charge complete lock down and used military multi use air guns on my son and all civilain personal ok'ed to work in the contamanted field and waters. He was in the worst of it like many other civilians ordered get in line and like him each received 6 injections vaccines from those air guns. The CDC was there suppose to keep a record on each civilain there and what they received. Militray and CDC pulled out and so did their records.

All those years before 1992 it would have cost the gov and all concered maybe a dollor or less to check labs for non a non b hep from blood donors and than clean up the nations blood supply but that would have cut their profits and admittied liability and responsibility.

I was finally corectly dx'ed with late stages HCV liver disease when my sypmtoms got bad enough liver enzymes were through the roof and after 1992. I finally went to a GP a good friend of mine my own age I knew I could trust. I walked in said I' ve got all these symptoms now and I had massive amounts of tainted blood tranfusions in my 20's non a non b hep now what. He hugged me tested me and with a long so sorry look on his face. He called me back in his office hugged me again and was in tears. He knew I knew medically about HCV and all it could do by than. I had to console him tell him it's not your fault. I'm going to be ok. It's ok.

He said no your not and you know it too.

It was a Miracle I also didn't contract HIV.

I couldn't work anymore lost my group medical insur. I was lucky with contacts he and I knew to get me in LSU's medical univ free clinic same hep prof researcher and transplant team but at the teaching free clinic. I had to fight the systems for 2 years in esld with an attorny was suppose to be listed but couldn't until my medicare a and b dr and hosp came trhough and I got had to pay for a full supplement before I could be actively listed and it came just in time only had less than a year to live. When my medicare and supplemt came through I switched over to the same hepatologist transplant team but now at their private office and transplant hosp.

My Hep Dr team and staff we became very close. The Christmas of 2000 he hugged me again and told me to enjoy this Christmas with family because if no donor soon it will be my last Christmas with my family. We had the best Christmas ever decorated inside and outside to the max.

After that the donor systems still failed me no compatable donor only had a few months left.

I found my own donor my own 17 year old nephew my husbands brothers only son only child a non-blood relative of mine died brain dead flipped his jeep alone in the car. Miraculeously without being a blood relaive we matched all markers completely compatable for transplant. That was a million to 1 shot. Another Miracle.

I became the 1st directed cadavor donor recipient for liver transplant and also non-blood related that could be found anywhere and matching completely. Another Miracle.

My nephew was across the lake about an hour from home when he had his car accident. It was raining people testified driving behind him he was not speeding in full control when he took an exit a curve his jeep than the big square recalled model just started flipping until he hit a bank of trees. When he got his drivers license at the age of 16 with his parents ok he had already became an organ donor. He attened Jesuit high School 4th generation and had already started the 1st organ donor drive in this area for high school kids. He was a very handsome brillent child already accepted into The Marine Academy wanted a Marine carrier headed up Jesuit's Marine ROTC unit and had full scholships at any ivy leage univ he wanted to attend but already choose to be a Marine.

How many female neuro surgeons do you know are in that field - very few. had his accident near the neuro surgery hosp for this area brought in there and his own Aunt was the neuro surgeon on call that received him hooked him up to full lifesupport knew he was brain dead to keep all his organs good for his last wish of being an organ donor for people.

With his severe crash his was brain dead but Miraceously all his organ were saved no injury at all to all of them. It was another Miracle.

I knew before my transplant team and was next up on the list. My family called me from the hosp I couldn't go in bed in late esld telling me to please accept 's liver he would have wanted it and it was meant to be and it would give meaning for 's death. I said no I couldn't give it split it for 2 children or give it to the next adult after me. His father called me back and said to please accept it.

Next my tranplant team called I refused it twice with 2 calls they made I was too emotional to accept it. They called back a 3rd time his parents and wants this for you it will give closure and a special purpose for 's young death. There are no children waiting here on the list. I don't and will never know if that was true or not and I accepted my own young nephrews directed cadavor liver as my donor. The 3rd call from them ended with get you ass in here now !!!!!!!!!!!

In time his father through LOPA La organ procurment assoc learned that all 's donated organs were a success none rejected even his corneas and a young person could see again.

In time we learned by accident from family a distent cousin older man in another part of the state by mear chance received 's heart and is alive and doing well.

Another Miracle.

I coded died had respitory failure during transplant because of non-related muscle lung dx under long general anetheshia. They brought me back stopped surgery when they could left me open with sterile packing sent to transplant critical care clean room on full life support wasn't suppose to make it through the night and family was told this. I fooled them made it bounced back enough in 4 days for 2nd transplant surgery to finish it and close and Dr's still didn't know if I would make it or not. I was in the unit for 3 1/2 weeks close to a month had to learn to breath all over again many complications bed sore on heel of foot that turned to gangreen on anti-rejections meds no immune system 3 surgeries for that IV antibotics in hosp and weeks of it going in 3 times a week out-pt to transplant unit to finish strong IV antibotics but I wasn't about to give up.

Weeks after last transplant surgery I could finally get out of bed and off full oxygen.

I was bad as usual would escape between respitory inhalation tx's off the closed sterile transplant floor and unit go roaming around the hosp and patio's pushing myself in the wheelchair. I gave the nurses - Dr's and staff hell teased them too but they loved it and me and knew I was getting better when they couldn't find me.

My story got out spread like wildfire throughout the transplant floor and main hosp. Mercy's original Hosp founded by catholic church and run by sisters dates back to late 1800's. Hosp and staff my Dr's all had strong religeous beliefs faiths and in me. I was know a Mercy's Miracle Patient. My Dr's and staff also beleived it was medical Miaracles and told me so. When I would escape through the hosp staff knew me by sight. Oh Mercy's Miracle Pt and would get hugs and prayers said with me.

Transplant rooms are all big private suites. I would wake up at night and find staff from all over the hosp and very religeous spanish cleaning women praying and in Spanish on there knees at my bedside slightly touching me.

Try living with that one. They beleived and so did I that many Miracles had happened for good reasons and why I made my promise to Him If He saw fit for me to make it and with all these Miracles I would get the word out the truths all about HCV and offer help and support to as many people as possible.

Yes I have faith. Yes I will always have hope. Yes I beleive in a higher being and Miracles still do happen. Yes I beleive the human soul is too powerful of a force to even be extinguished. We lose our human body form and go beyond to a better place and reach our true life souls destiny.

It's each individual persons choice to beleive in whatever higher power or not inner soul or not true destiny or not have hope and faith or not.

I know it is true for me cause I have felt my inner soul and it has been touched many times.

I wouldn't have made it this far if I didn't and lost count of how many last rights I received they are good for so long but I agreeded and got some back to back before both transplants and after it.

Tis The Seaon and to believe have hope whatever faith you believe in and feel share love.

Very Happy Holiday's To All.

Deb

damn spell check quit on me again

[Guest guest]

hi Deb

Amazing story. Im sending you all my good energy and love.

love

don in kansas

Subject: Re: How Many OF THOSE HERE ARE IN THEIR 50's??? - Me my HCV story and warning it isn't pretty but ends greatTo: hepatitiscsupportgroupfordummies Date: Sunday, December 14, 2008, 12:49 PM

The majority of us are in our 50's and a few older.

I'm 54 will be 55 next April.

I have had very Chronic hard to tx main geno 1a probably mixed geno's from massive amounts of contaminated blood transfusions giving birth to my daughter 32 years ago. I had a complete placenta abruption placenta torn apart right before delivery. Once my daughter was born I bleed out completely lost complete blood volume plus more. I watched her delivery she inhaled large amounts of blood coming out her mouth nose everywhere. My daughter and I were not suppose to make it. They put her on my chest and I knew I had to fight to make it for both of us. They called a priest in we were given last rights.

It was a Miracle we both made it.

The Dr's staff worked very hard to save both our lives but in exchange I was given massive amounts of known tainted blood Non a Non b hep which was legal at the time gov said no medical problems with it in nat'l supply in blood banks many blood banks for profit and with medical practice guidelines. I was told no lasting medical problems it's not serious will clear up on it's own. I was in the medical field knew enough to know better. I fought all types of Dr's specialists for many many years and was told I was just a stressed out overwhelmed female young mother working full time here take these nerve pills. It was all in my head and all my symptoms fatigue muscle pains myopathy neuropathy even at that time related positive labs and false positive rheumatoid arthritis RA labs was unrelated to non a non b hep because liver labs were normal until 20 years

had passed.

The gov and world health organizations know about non a non b hep for many many decades but decided to do nothing about it. We were too much of a liability responsibility and quote would bankrupt the medical systems from hosp's - dr's - nursing homes - pharmacy chains to insur co's - medicare - medicaid all the way down.

We didn't quietly and slowly die out and HCV became a world wide epidemic blamed mostly on IV drug users and again from us from the 60's. HCV was in the general public and in medical practices hosp's contaminated with it and in the worlds blood supply. The general public was not informed still not informed enough or for ordered general testing of it or how it is a blood to blood stream contagious form of hep.

Our #'s and our fight was to large to ignore anymore and it took the gov until 1992 to rename non a non b hep to Hep C test for it in the nations blood supply and for blood donors.

Medical records and blood supply donor and pt's receiving blood are kept on file in national archives pt's listed by #'s and all info. After admitting it in 1992 a national law was passed to send out certified letters to all pt's receiving than called non a non b hep name changed to Hep C a very serious form of Hep to get tested and seek medical attention for it. A very few token letters were sent out and the rest buried in archives found many years too late for us.

Like the majority of us I never received my letter.

With admission and new laws renaming it to Hep C in 1992 checking blood donors supposedly cleaning up the nations blood supply the gov than were liable and responsible. They than very quietly passed a class action law suit for us told no problem with non a non b hep from know tainted blood. It was kept so quiet we never knew about it and with a short date time to file for it or privately until it was closed.

There are national groups still trying to fight for it and for our complete medical care and compensations but it will never come to pass. I will never see it happen in my lifetime or my great great great grandchildrens lifetimes or ever.

The burden of proof is on us and the laws on there side. Since HCV can be contracted in sooo many other ways in the general public so much they said it is impossible to link our HCV to just non a non b blood transfusions. We could have contracted it in so many other ways and also self inflected drug use or by being promiscuous too many different sex partners with unprotected sex. We were from the 60's and 70's hippie generations drugs peace and love and lots of sex.

Many other nations including Canada has admitted guilt cover-up and has compensations and medical help for HCV pt's. Not the U.S.

Vietnam vets have the highest % of HCV because of multi use air guns just changing tips with power you also have suction back in and multi used on so many vets plus war wounds in the field. The gov admitted the old air gun was not safe came out with new model. The official statement it is much safer still multi use changing tips only with a much lesser % of chances of ctaching contageous diseases including HCV. It is not totally safe yet and still in use today.

The military doesn't just use those air guns on military personal. After a major U.S. diaster military comes in takes over and is in charge. Just like after Katrina my son is a police officer special forces rescue and swat team. The milatary was in charge complete lock down and used military multi use air guns on my son and all civilain personal ok'ed to work in the contamanted field and waters. He was in the worst of it like many other civilians ordered get in line and like him each received 6 injections vaccines from those air guns. The CDC was there suppose to keep a record on each civilain there and what they received. Militray and CDC pulled out and so did their records.

All those years before 1992 it would have cost the gov and all concered maybe a dollor or less to check labs for non a non b hep from blood donors and than clean up the nations blood supply but that would have cut their profits and admittied liability and responsibility.

I was finally corectly dx'ed with late stages HCV liver disease when my sypmtoms got bad enough liver enzymes were through the roof and after 1992. I finally went to a GP a good friend of mine my own age I knew I could trust. I walked in said I' ve got all these symptoms now and I had massive amounts of tainted blood tranfusions in my 20's non a non b hep now what. He hugged me tested me and with a long so sorry look on his face. He called me back in his office hugged me again and was in tears. He knew I knew medically about HCV and all it could do by than. I had to console him tell him it's not your fault. I'm going to be ok. It's ok.

He said no your not and you know it too.

It was a Miracle I also didn't contract HIV.

I couldn't work anymore lost my group medical insur. I was lucky with contacts he and I knew to get me in LSU's medical univ free clinic same hep prof researcher and transplant team but at the teaching free clinic. I had to fight the systems for 2 years in esld with an attorny was suppose to be listed but couldn't until my medicare a and b dr and hosp came trhough and I got had to pay for a full supplement before I could be actively listed and it came just in time only had less than a year to live. When my medicare and supplemt came through I switched over to the same hepatologist transplant team but now at their private office and transplant hosp.

My Hep Dr team and staff we became very close. The Christmas of 2000 he hugged me again and told me to enjoy this Christmas with family because if no donor soon it will be my last Christmas with my family. We had the best Christmas ever decorated inside and outside to the max.

After that the donor systems still failed me no compatable donor only had a few months left.

I found my own donor my own 17 year old nephew my husbands brothers only son only child a non-blood relative of mine died brain dead flipped his jeep alone in the car. Miraculeously without being a blood relaive we matched all markers completely compatable for transplant. That was a million to 1 shot. Another Miracle.

I became the 1st directed cadavor donor recipient for liver transplant and also non-blood related that could be found anywhere and matching completely. Another Miracle.

My nephew was across the lake about an hour from home when he had his car accident. It was raining people testified driving behind him he was not speeding in full control when he took an exit a curve his jeep than the big square recalled model just started flipping until he hit a bank of trees. When he got his drivers license at the age of 16 with his parents ok he had already became an organ donor. He attened Jesuit high School 4th generation and had already started the 1st organ donor drive in this area for high school kids. He was a very handsome brillent child already accepted into The Marine Academy wanted a Marine carrier headed up Jesuit's Marine ROTC unit and had full scholships at any ivy leage univ he wanted to attend but already choose to be a Marine.

How many female neuro surgeons do you know are in that field - very few. had his accident near the neuro surgery hosp for this area brought in there and his own Aunt was the neuro surgeon on call that received him hooked him up to full lifesupport knew he was brain dead to keep all his organs good for his last wish of being an organ donor for people.

With his severe crash his was brain dead but Miraceously all his organ were saved no injury at all to all of them. It was another Miracle.

I knew before my transplant team and was next up on the list. My family called me from the hosp I couldn't go in bed in late esld telling me to please accept 's liver he would have wanted it and it was meant to be and it would give meaning for 's death. I said no I couldn't give it split it for 2 children or give it to the next adult after me. His father called me back and said to please accept it.

Next my tranplant team called I refused it twice with 2 calls they made I was too emotional to accept it. They called back a 3rd time his parents and wants this for you it will give closure and a special purpose for 's young death. There are no children waiting here on the list. I don't and will never know if that was true or not and I accepted my own young nephrews directed cadavor liver as my donor. The 3rd call from them ended with get you ass in here now !!!!!!!!!!!

In time his father through LOPA La organ procurment assoc learned that all 's donated organs were a success none rejected even his corneas and a young person could see again.

In time we learned by accident from family a distent cousin older man in another part of the state by mear chance received 's heart and is alive and doing well.

Another Miracle.

I coded died had respitory failure during transplant because of non-related muscle lung dx under long general anetheshia. They brought me back stopped surgery when they could left me open with sterile packing sent to transplant critical care clean room on full life support wasn't suppose to make it through the night and family was told this. I fooled them made it bounced back enough in 4 days for 2nd transplant surgery to finish it and close and Dr's still didn't know if I would make it or not. I was in the unit for 3 1/2 weeks close to a month had to learn to breath all over again many complications bed sore on heel of foot that turned to gangreen on anti-rejections meds no immune system 3 surgeries for that IV antibotics in hosp and weeks of it going in 3 times a week out-pt to transplant unit to finish strong IV antibotics but I wasn't about to give up.

Weeks after last transplant surgery I could finally get out of bed and off full oxygen.

I was bad as usual would escape between respitory inhalation tx's off the closed sterile transplant floor and unit go roaming around the hosp and patio's pushing myself in the wheelchair. I gave the nurses - Dr's and staff hell teased them too but they loved it and me and knew I was getting better when they couldn't find me.

My story got out spread like wildfire throughout the transplant floor and main hosp. Mercy's original Hosp founded by catholic church and run by sisters dates back to late 1800's. Hosp and staff my Dr's all had strong religeous beliefs faiths and in me. I was know a Mercy's Miracle Patient. My Dr's and staff also beleived it was medical Miaracles and told me so. When I would escape through the hosp staff knew me by sight. Oh Mercy's Miracle Pt and would get hugs and prayers said with me.

Transplant rooms are all big private suites. I would wake up at night and find staff from all over the hosp and very religeous spanish cleaning women praying and in Spanish on there knees at my bedside slightly touching me.

Try living with that one. They beleived and so did I that many Miracles had happened for good reasons and why I made my promise to Him If He saw fit for me to make it and with all these Miracles I would get the word out the truths all about HCV and offer help and support to as many people as possible.

Yes I have faith. Yes I will always have hope. Yes I beleive in a higher being and Miracles still do happen. Yes I beleive the human soul is too powerful of a force to even be extinguished. We lose our human body form and go beyond to a better place and reach our true life souls destiny.

It's each individual persons choice to beleive in whatever higher power or not inner soul or not true destiny or not have hope and faith or not.

I know it is true for me cause I have felt my inner soul and it has been touched many times.

I wouldn't have made it this far if I didn't and lost count of how many last rights I received they are good for so long but I agreeded and got some back to back before both transplants and after it.

Tis The Seaon and to believe have hope whatever faith you believe in and feel share love.

Very Happy Holiday's To All.

Deb

damn spell check quit on me again