An Open Letter

Like the well known throughout Hep "C" Circles ( Bek's Letter )
I hope this will make it's way around as well.
It's intent is to make people think & hopefully bring about change. I hope it ends up on the desks of lot's of politicians & physicians. First off to have been treated by the medical profession as though all my complaints were in my head for 15 years really wore me down & almost had me questioning myself but I knew my pains & ailments were real. To have had high liver counts for all those years & not one of the many doctors I had seen ever mentioned it ( WHY ? ) They took away my ability to know not to drink alcohol for that time frame. Drinking those 15 years certainly did not help my situation. (WHY ? ) did I have to educate myself to the point of basically having to beg my primary to do a Hep C test. The result was not what I wanted but now it had a name. I could prove to all the nay sayers in my life including my wife that yes there was indeed something wrong. I did not just enjoy complaining about how bad I felt. All the aches & pains, joints, muscles etc. Not being able to sleep, tossing & turning all night. Stupid tests for sleep apnea, put gel in your hair & hook you up to wires & make you look like Frankenstein. Then tell you to go to sleep which you already can't do in a strange environment because your good old insurance company surely won't pay to have this done at home where it should be done. The guy giving you the test falls asleep but tells you that you slept 6 hours when you know you did not sleep at all. You ask how long he has been giving tests to be told he used to hang sheetrock for a living until a friend got him the job. You search your doctors backgrounds only to find out about all the complaints against them. Even with insurance which at this time 10/11/06 costs us over $600.00 a month for the PPO version you still are treated as OH NO here comes another insurance patient. Make appointments weeks in advance only to sit in waiting rooms hours past your appointment time ( WHY ? ) Do full waiting rooms make doctors feel important ? It takes forever to find a doctor through an insurance companies provider book & most don't speak English all that well & about the time you start to feel comfortable with the doctor you have chosen if you work for DISD the Dallas Independent School District they change insurance companies & the doctor you had is not listed with the new insurance company so you have to start all over. I have been researching Hep C for almost 5 years & it is amazing to me how the information changes almost daily. Yes I understand that until 1990 there was not a test for Hep C they called it non A non B. With liver counts almost triple the high end of normal I still can't understand why none of the doctors I had seen including two different hospitals ever mentioned it to me. I had to get my own medical records for the last 15 years to see it for myself & it was appalling. It made me sick to my stomach to think that so many so called medical professionals could be this negligent. My take is you better ask for & see for yourself what's in your medical records & keep copies. The really scary part is that I have no doubt I know more than most of the doctors I see & that is scary when you have to tell them what you want done & what the normal protocol is. I was basically told if I was not going to treat & by the way the doctor said I will treat you with or without a biopsy. That made no sense if he did not know my livers condition why would you treat other than the money you would make. I have no doubt it was more about the money than what was in my best interest. There are WONDERFUL doctors out there I just wish I could find one. I was told to just come back yearly & we will re check everything. I did that & he did NO LIVER SONOGRAM, NO LIVER SPLEEN SCAN, NO VIRAL LOAD & on & on. He said if you are not treating it really does not matter ( the numbers ). BULL I SAY ! If you don't do it then you have nothing to compare to. It's just another way of the insurance companies controlling what doctors do & don't do. Against popular belief if you talk to doctors that are not on your policy & that would see you if you could afford them they ALL tell me that a person with chronic Hep C should have blood work every three to six months & a sonogram & liver spleen scan every six months. You are told depending on what you read & who you listen to that it is almost impossible to get hep c sexually. That it is more likely to happen if at all from man to woman verses woman to man. WAIT A MINUTE ! that's talking out of both sides of your mouth. If I have learned anything in my journey for information it's not to believe everything I read or that I am told regardless of the source. There is too much money to be made by too many people to get a quick fix. It used to be TREAT,TREAT,TREAT now that is changing to what I had said all along ( WHY ? ) would someone that is not really sick already put toxic stuff in their body knowing that the odds of long term ( SVR ) remission for everyone is not that good. If I were really sick already then I am sure I would give treatment a try. It's just not for everyone & needs to be well thought out. Then there is that disability thing that the government does not want to acknowledge so another battle to have to fight. The stigma that HEP C came from shooting IV drugs & for some it did but there are plenty of us that got it other ways & I still say sex is one of them depending on what & where you read anywhere from 5% to 15 %. Protect the people you love & have sex with that is just good sense you owe that to another human being. At the very least discuss the fact that you have hep c & let them decide if they want to have unprotected sex. This is a very sore subject for most people because they don't want to have to use protection. For those who's spouses are not infected & choose not to use protection I say you are Playing Russian roulette & good luck. My wife of 22 years in a monogamous relationship now has hep c & the same geno type as mine. We were not having any wild & kinky rough sex. Neither of us has tattoos, piercings, ever did IV drugs, had surgeries or received blood transfusions. I do believe that it came from unsterile practices & that could have been just about anywhere. The doctor from shots or the dentist, next time you go ask to look at all the aquarium like tubing that connects to things they put in your mouth. Trust me it's not a pretty site & it has been talked about on most major prime time TV shows. Even if they have the proper sterilization equipment who is to say after a long hard day that the person responsible to see that it gets done really does it ? there should be a back up fool proof system in place. Everyone will admit to cutting corners at work especially if you have plans or have had a long day & are ready to leave. Even recently many people were infected in a hospital by careless non caring so called professionals. I saw Pamela Anderson of baywatch fame on the tonight show awhile back with Jay Lenno. I thought she was our new poster girl & gonna' get out the word. Hep C was never mentioned at all so a huge audience missed being informed by her silence. Most recently Steven Tyler of the band Aerosmith announced he was cured. Other than that Naomi Judd is the person most people have heard of if they have heard anything at all. Most people know NADA, NOTHING, ZILCH about this disease & that is not gonna' change until we all make demands on our politicians, the medical profession, & the news media & demand the truth about this disease be told. Bigger than aids & spreading faster & most people do not have a clue. WHAT IS THE GOVERNMENT AFRAID OF ? THE TRUTH ? IF SO WHY ? Those shots they all gave us as kids to keep from catching this & that they were made with blood products. All I have to say is this is not an IV drug user only disease as many seem to want the public to believe. If we don't unite together & make our voices heard the younger generation is doomed in my opinion. This disease can be controlled & there are people who need to treat & do it now just not everyone. This is not a disease that has a universal treatment plan that just because you have hep c this is what you do. I wish it were that easy. Educate yourself so you can make educated decisions, share what you learn & get the word out. For all those who have treated & failed & are treating again I admire your courage & I pray you become hep c free forever & I know it works for some & they stay virus free. For the rest of us I pray for better treatments with less toxic side effects & better overall long term results. I hope if nothing else this will make you think & use good judgment in however you deal with this disease. I have met some great caring & wonderful people through this journey & you know who you are. You share what you know & give others hope. We all deserve better than what we can currently get & it will take us all to bring about that change. Make your voice heard at every level. Write letters to all your elected officials, organize groups & do your part to bring about change. I took the hep A&B vaccines & highly recommend you get yours although my B did not work. You don't want A or B on top of C. I did the Twinrix combo it's A&B together & saves you two injections by not doing the A&B separately. I finally got the alternative to a biopsy it's called Fibrosure & is done at any Lab Corp & does not have the risk of a biopsy since it is done with blood although most still prefer & consider a biopsy to be the gold standard. These are just my thoughts & ramblings & are only intended to make you think & question NOT just accept.
This is just my personal opinion & I am entitled to mine & you to yours we all have one.
DRSLETMEDOWN
( God Bless Us All. )