- Hepatitis C and me by LightLizard
19 y
4,285 9 Messages Shown
Blog: LightLizard's Lair
May 2005 I was diagnosed as having hepatitis-c related kidney disease. I was literally bed-ridden, full of fluid with vasculitis causing the excess to leak out of my infected legs. I had gone from 160 pounds to 220 from the fluid build-up. They drained 14 litres from me when I finally went into emergency. I had tried chinese medicine for 8 weeks, after my diagnosis. The herbalist became frightened by my kidney's complications and called in his wife, also a chinese herbalist and MD. She suggested I needed a new, special herbal concoction/pill that her uncle in the states was developing. It would only cost me one thousand per month and i would need three months of it. Snake oil salesmen flourish on all sides, it seems. I went into emergency with severly infected legs, laid there for 8 hours, waiting for attention, and thought about how Bob Marley died- (from gangrene, stupid Rasta!) while listening to trauma cases sceaming and dying on the other side of the curtains...
After three weeks in hospital, intraveneous antibiotics, twice-daily changing of the dressings on my legs, and a tube in my gut to drain the fluid, I was ready for a kidney and liver biopsy. Having had those done, now able to walk, with less than 50 percent of my muscle mass left, osteoporosis developing, I am now home, feeling somewhat better but with a long way to go, I know. I can walk, do qigong and taiji and can play my drum at the beach!! (All with great care and moderation, of course.)
The specialists are soon to give me the treatment they say will very likely help to knock down the hep-c virus enough to allow my kidneys to recover so my liver can re-generate.
(A 'new' formulation of interferon.) In the meantime I am on steroids, perscription vitamins, dieuretics and a high-protien diet.
There is hope, and I am grateful for so much. I have learned more in the past 6 months than I ever thought possible to learn, for me. About myself, who and what I really am. What life is for we humans. And yes, what is 'beyond' too.
They say I acquired this demon when I was two years old. 54 years ago. I had developed pernicious anemia and required a complete blood transfusion to save my life.
One of the donors was carrying the virus, it seems. Of course, there was no screening for anything in blood back then, certainly not for hep-c. I've had a 54 year reprieve, at least, so even if I don't last much longer, I certainly don't feel that i've lost out in this life. With such friends and loved ones around me, how could I have lost? I feel that I will have plenty of time left to do what I must and I am truly happy.
So, no matter what your problem is, know that it is not too big for you. It is a gift, that once opened, will reveal to you a Greater Reality and the Truth of Who You Are.
~LightLizard~
feb 9/06
After the hoops were all put away, for the time being, I finally got the funding for the interferon program started. I had my first shot at 5 PM, Feb 8, and will be taking weekly injections for the next 48 weeks. Well, 47 weeks, now. 47 more pokes to go...
I also must take five capsules of Ribavirin daily, as well. This is the new 'Pegatron' treatment that seems to work more effectively then the older treatments, because of the 'pegalated' interferon - combined with the Ribavirin, I'm told.
They say the side effects of this treatment can be real nasty. It's a good 16 hours past my first shot, and actually, I don't feel 'bad' at all.
the fun begins....
later...
love
LL
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LightLizard
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- blessings on your beautiful journey. Why "stupid rasta"...? Judge not, ... by sandinista
19 y
1,489 Reply FCK TinyMCE
- Hepatitis C and me, again...still... by LightLizard
19 y
1,947
here is a letter i have been sending to agencies regarding my current struggle. some might say i'm looking for a handout, for free. no, i'm not really. i feel i was burdened with the hep c virus because of government and medical laziness and a lack of education. the drug interferon costs pennies to make and distribute, yet we who rely on it for our survival are expected to come up with one thousand dollars a month to receive it. for 48 weeks! how does an unemployed ex-fitness (taiji and qigong) instrctor come up with that kind of cash?
"Dear Sirs or Madam,
I am writing this letter not so much for myself and my situation, but it is my hope to receive advice and perhaps some education for myself and those who may be interested in how one finds themselves in a life or death struggle with the powers that be, through the trials and tribulations of life.
I have been informed by my doctors that I must receive Interferon treatments to save my life from the devastating effects of the hepatitis C virus that I received from a blood transfusion when I was two years old. I was stricken with pernicious anemia at that time and was saved because six people donated their blood to keep me alive. One of them had hepatitis C and pa*sed it to me. This is the most likely scenario, I am told, because I have never, in my life, used intravenous needles for any reason whatsoever. Either that, or as a doctor confessed to me, a common practice in the fifties -when polio vaccinations were offered in schools- was to use the same needle for many children. It is easy to imagine how one child with the virus would pa*s it along to those who were inoculated afterwards with the same needle. Strange, isn't it, how the government will compensate native abuse issues and such, but when it comes to their 'own people,' it is a slightly different story. Quite revealing, one might say.
I have been told that I must receive forty eight weeks of this Interferon Treatment at a cost of up to one thousand dollars per month. Having been self employed for some time, yet unable to work since May of 2005, (when I was diagnosed with the virus) I am unable to come up with any of this cost. I do not believe that Social assistance is a reasonable choice for me, and I will not be pursuing that route. Although, I have been advised by certain parties; that this may be my only option.
Nor does it seem reasonable, fair or just that I should be forced to re-imburse the 'givers' of these treatments to save my life, as the newly instituted 'Pegatron' program suggests.
Isn't it slightly interesting, and quite revealing, how the statistics show that Hepatitis C has infected more people world wide now than Aids/HIV, yet there is virtually NO public education program from governments or medical practicioners available, not to mention a huge and embarrasing lack of support groups around? We that are infected are left to our own resources, to research after the fact, to find out how we could have gotten this burden dumped upon us, and what do we find? Looks like an industry in the making, to me.
I feel that I am having my life held hostage by a predatory system that would prefer I die and vanish, or pay up, post haste.
I feel there is no recourse for me, at this point.
Recently, I heard news of a young man who suffers from dwarfism. A non-life threatening condition. Yet, the Medical Services Plan of British Columbia awarded him with four hundred thousand dollars to pay for operations that would alleviate his condition.
Surely, there is someone, somewhere that can see the injustice here.
So, here I stand with my back to a wall, asking for advice and perhaps foolishly, compassion. The question I ask myself Is; 'Am I willing to die to make a statement of protest?' Seeing and feeling I have little say in the matter; I must answer 'Yes.'
What you might ask yourself is, 'Am I willing to receive the repercussions of that statement?'
Yours most Sincerely.
Wayne Wilson
ps. my personal records may be accessed through St Michael's Hospital Toronto Ontario. Born Feb 25th 1949
thank you."
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LightLizard
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- Re: Hepatitis C and me, again...still... by Sue_Toronto
18 y
1,827
Hi Light Lizard/Wayne,
Was perusing your blog. I recently completed treatment for hepC with interferon and ribavirin. Please feel free to check out my blog at:
http://www.suetoronto.blogspot.com
There are links on the page to several other hepc blogs and some forums that I believe are pretty good. Notice from your letter that your records are at St. Mike's and, if you are still in Ontario, there is Ontario government funding that can assist with treatment costs. Check out the ODB:Trillium Drug Program website for assistance at:
http://www.health.gov.on.ca/english/public/pub/drugs/trillium.html
I hope that 2006 brings health and happiness for you. All best wishes on your journey,
Sue, Toronto
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Sue_Toronto
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- Re: Hepatitis C and me, again...still... by LightLizard
18 y
1,932
thanks sue. i have yet to see any good reports on interferon, so i'm happy you have added your two cents.
i'm not in ontario anymore, i'm in BC. i was probably infected around 1950-52, so mostly, the government has protected themselves from anyone from that time-frame, so far.
i will peruse your blog.
thanx again...
happy New Year!
-w
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LightLizard
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- Hep-C by ronr1
18 y
1,797
Wayne,
Thanks for your comment on my blog ( http://ronrussosjournal.com )
I'm not involved in qigong or any other martial arts practice although I do maintain a meditative practice as well as attend a meditation group weekly.
I too have had hepatitus c which I got from some rather foolish dabbling in drug use back in the 60's when I was about 19 years old. I went through six weeks of recovery from that at the time but have had virtually no symptoms since then until it showed up in a routine blood test some ten years ago.
My last biopsy showed me at a level two (out of four) degrees of severity. If I get to level 3 I will require some treatment (interferon I was told) but I'm hoping (praying) that this will not be necessary.
Again thanks for the kind comment. I will be checking back on your progress in the future and looking forward to reading some of your other interesting posts.
Ron
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ronr1
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- Re: Hep-C by LightLizard
18 y
1,883
hi ron. (that's my middle name, by the way!) yes. hep c is a demon for sure. i've had it for most of my life, but didn't find out until a year ago. so, they call my case 'Chronic hep C'- which has caused a lot of problems in other areas of my health. (kidney disease, vasculitis, osteoporosis) i have to get blood work done weekly now, my condition is so unstable. so, i don't know what tomorrow holds for me. who does? but i know today, i feel a lot better than i have for some time. (receiving four units of blood might have something to do with that!-heehee -god bless the donors!!) and i know whatever or however it happens, i will always have good memories of the kindness and compassion i have run into from so many people.
you are in my prayers ron.
live in love, brother!
w
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LightLizard
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- Re: Hep-C by LightLizard
18 y
1,696
Hi Ron. Have you ever heard of 'Colloidal Silver'? I begane taking it after I heard about how it regenerates organs, and how it was used in the 30's and 40's to treat various conditions with great success. My original diagnosis had the doctor telling me that I would either need a liver transplant or could expect to die soon. I began taking three teaspoons a day, shortly after that. Two months later, after bloodwork being done, the doc called me into his office to tell me he had been mistaken. He scratched his head and said, 'I don't understand it, to tell the truth. But, two months ago I would have sworn that your liver was not going to make it. Now, it appears that your liver damage, and even the virus, is quite moderate!'
Beware of Interferon! You can read about my adventures with it here, on the 'Schedule/Health Update' page.
http://yinchuandao.bravehost.com/schedule.html
love and light to you and yours, my brother.
*LOVE*
~LL~
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LightLizard
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