Author Topic: Gold Standard for HepC Treatment (Read 27395 times)

motor · « **on:** March 09, 2015, 10:33:56 pm »

12/29/14, I was scheduled to begin 12wks Harvoni at the VA 3/3/15. I don't have the experience to be an authority, but seeing this article was comforting to the task facing me.

http://www.salisburypost.com/2015/01/30/salisbury-vamc-hepatitis-c-cure-rates-among-best-in-va/

My 3/3/15 appt was an orientation class with a pharmacologist. There were 6 of us in the class. 5(all GT1 I believe) were to be given Harvoni and 1(GT2) Sovaldi & Ribivarin. He went over everyone's meds for drug interaction and what needed to be stopped or replaced. He instructed on how to store and take our meds. Each was given a folder with their followup schedules all spelled out and contact numbers for any problems. He answered all questions with helpful attitude.
He said all would be on a 12wk treatment except me. I received the news with mixed emotions and told him my concern about dragonslayer experience. He said 4wk bloodtest will dictate stopping at 8wk(least that's how I understood it).
Here's my schedule for treatment:
3/3 full bloodwork,vL, drugtest,etc. dispensed 14 Harvoni pills
3/17 2wks CBC bloodwork, 30min appt pharmacologist, receive resupply Harvoni
4/1 4wks full bloodwork, vL and 20min appt with GI doctor
4/15 6wks 15min call from nurse
4/29 8wks full bloodwork vL and 20min appt GI doctor
5/26 12wks full bloodwork vL
6/30 17wks 30min appt with nurse

I listed full bloodwork to keep it simple, but it includes:CBC, hepatic function plasma, Viral Load, basic metabolic plasma. The 15wk replaces basic meta with creatinine test.

sapphire101 · « **Reply #1 on:** March 10, 2015, 01:17:02 am »

Hey Motor since you recently attended the orientation class maybe you can clear up some questions circulating from other posts.

1. milk- any warnings to avoid drinking milk with your medications? the discussion is around milk binding with meds and decreasing the potency.
2. toothbrushes- were you advised to get new tooth brush at each interval of labs? the discussion is around the chance of re-infection for personal items such as toothbrushes and razors and that they should be thrown away and replaced weekly.

No worries if these subjects were not covered.
Best wishes on your treatment!

motor · « **Reply #2 on:** March 10, 2015, 03:09:49 am »

Thanks for post, neither was discussed. But, I think when I go back on the 17th for resupply, says on my schedule that I meet with him and I'll surely ask. I recently had that thought of reinfection and I wondered about it. Then, I thought that's part of what length of treatment eradicates and forgot about it. Funny, your post is the first mention that I've seen. But, thanks for reminding cause that question had slipped away on me.
He did take the guys off their meds for indigestion and heartburn and I think he allowed Pepto-Bismol as substitute.

sapphire101 · « **Reply #3 on:** March 10, 2015, 11:26:16 pm »

Both my ProCeed nurse and an Accredo pharmacy nurse happened to call today and I asked them our questions.

Milk question:
ProCeed said zero food restrictions except to take the meds with food to help absorption.
Accredo will research and call me back tomorrow.
Keep in mind I am on a different medication regimen than you and I will be interested in their answers on the 17th.

Toothbrush question:
ProCeed supported the idea of changing out toothbrushes and razor blades. Even though the chance is small there is a chance and 'it makes sense" she will take this to the experts and get back to me next week.
Accredo did not know and will get back to me tomorrow.
That will teach them to call me- they get homework!
I will post again when I hear back.

Tom · « **Reply #4 on:** March 11, 2015, 12:29:03 am »

At the end of 8 of 12 weeks of treatment with Harvoni, no signs of the virus! Good idea on the toothbrush and razor, no need to run any risk of reinfection as I have come come to far.

I would support anyone either contemplating or beginning treatment. I had a few dull headaches and a few pretty good rippers, but I think it was my body starting the fight. I feel better every day and have a better outlook on life knowing that I am helping my body and ultimately my longevity. I would recommend keeping hydrated and eating a healthy diet during treatment. I always drink 2 16 oz glasses of water and eat breakfast before I take my pill and look forward to what ever I may feel every day. With that said, I can't wait to get off the "Harvoni pony" on April 3rd. I hope I don't have any relapses in the future.

sapphire101 · « **Reply #5 on:** March 11, 2015, 10:52:30 am »

Great news Tom and yes please stick around to mentor the rest of us.
I agree that changing out toothbrushes and razors is not expensive and cant hurt might help so why not. Even a .005% chance of re-infecting myself is not worth the chance.

Very interested in finding out about food interactions though, I am on different meds (see 'Viekira Pak Feb 17th' and 'Is self pay an option for my full story') because all our meds start working in the stomach and again, anything to do to help I will do it.

Yes to water and yes to healthy food. Very good advice for all the noobies. I drink 3 to 4 bottles a day and before you say 'that is not enough' you have to realize that I drank zero before. My body is still adjusting or maybe I should say floating!

Side effects- yes all our meds come with them and if you look at the clinical trials very very few people had to drop out because of them. We can all do this for 8 or 12 or 24 weeks. Actually, I have started feeling really good now that I am in week four. I like to think it is because the virus is gone and for the first time in decades my body and my liver are at peace. This IS me I have just not experienced me in a long while and my perspective was not true until now.

hepctreatnow · « **Reply #6 on:** March 15, 2015, 08:59:13 pm »

A side note on nutrition and H20, I've been juicing greens for the last few months along with fruits etc. and I spike that juice with Spirulina and Chlorella powder. The beneficial factors is absolutely a marvel. I also do Vit D, COQ10, Korean Ginseng and Thorne T.A.P.S. Liver pill (Abbvie will confirm next week if I can still take this while on treatment). As for water, I've always drank on average 3 litres a day and from what I'm reading here will provide assistance when I start my treatment.

All that said, all of the above as kept me from getting worse over the years. I truly believe that and can attest to it with mephitical condition.

Cheers, M

motor · « **Reply #7 on:** March 17, 2015, 08:47:58 pm »

I had my 2wk scheduled revisit with the pharmacist today, not a pharmacologist as previously stated. He doled out 16 more Harvoni pills to get me to next appt. He cancelled the scheduled CBC blood-work. He said it wasn't necessary because I wasn't taking ribavirin. Then why was it on schedule? Oh well, a question for GI doctor at 4wk appt.
@Sapphire, I did ask pharmacist the questions about milk and reinfection.
He said that milk was more of an issue with Harvoni than Viekira Pak. He likened milk to the calcium I'm on and told me to wait at least 4hrs between pills. He had not mentioned milk at orientation. So, how critical is it? Anyway, the 4 hr gap is doable with the 1 Harvoni pill. But the Viekira Pak is multiple pills, so milk drinking window would be tighter.
Concerning the reinfection he reiterated not sharing personal items. But said the chance of reinfection was highly unlikely, unless you were a "cutter".

sapphire101 · « **Reply #8 on:** March 21, 2015, 12:36:04 am »

Motor I have now talked to the ProCeed support line, the Accredo RN, the Express scrips RN and a pharmacist.
All agree that while it can't hurt to toss out and replace personal items each week, the chance of reinfection is infinitesimally small and probably not needed, however, if this is worrisome and you want to replace these items go ahead. So I will.
They were also clear that milk is not a barrier for Viekira Pak (just as you found out) which is good to hear because I drink milk in my coffee every day!

dragonslayer · « **Reply #9 on:** March 21, 2015, 09:37:37 am »

How is it possible that something as common as milk can be problematic for Harvoni, and yet not be proscribed anywhere by Gilead? Doesnt make a lot of sense.

motor · « **Reply #10 on:** March 21, 2015, 02:23:05 pm »

I think we're splitting hairs here. My pharmacist only said this when I asked specifically about milk. It wasn't mentioned in orientation and nothing was said about disposal of personal items. I think we're in the slim to none area of infection.

BubbaT · « **Reply #11 on:** March 21, 2015, 08:57:55 pm »

Quote from: motor on March 09, 2015, 10:33:56 pm

12/29/14, I was scheduled to begin 12wks Harvoni at the VA 3/3/15. I don't have the experience to be an authority, but seeing this article was comforting to the task facing me.

http://www.salisburypost.com/2015/01/30/salisbury-vamc-hepatitis-c-cure-rates-among-best-in-va/

My 3/3/15 appt was an orientation class with a pharmacologist. There were 6 of us in the class. 5(all GT1 I believe) were to be given Harvoni and 1(GT2) Sovaldi & Ribivarin. He went over everyone's meds for drug interaction and what needed to be stopped or replaced. He instructed on how to store and take our meds. Each was given a folder with their followup schedules all spelled out and contact numbers for any problems. He answered all questions with helpful attitude.
He said all would be on a 12wk treatment except me. I received the news with mixed emotions and told him my concern about dragonslayer experience. He said 4wk bloodtest will dictate stopping at 8wk(least that's how I understood it).
Here's my schedule for treatment:
3/3 full bloodwork,vL, drugtest,etc. dispensed 14 Harvoni pills
3/17 2wks CBC bloodwork, 30min appt pharmacologist, receive resupply Harvoni
4/1 4wks full bloodwork, vL and 20min appt with GI doctor
4/15 6wks 15min call from nurse
4/29 8wks full bloodwork vL and 20min appt GI doctor
5/26 12wks full bloodwork vL
6/30 17wks 30min appt with nurse

I listed full bloodwork to keep it simple, but it includes:CBC, hepatic function plasma, Viral Load, basic metabolic plasma. The 15wk replaces basic meta with creatinine test.

Motor, thanks for the link, it looks like your in good hands up there, I'm going to look here in Houston and see if we have similar teams who treat hepc, I like what I read in the post at Salisbury VA, NC.

motor · « **Reply #12 on:** March 21, 2015, 10:51:24 pm »

Thx for taking a look at article. it was timely for me, as it confirmed my decision to cancel appt at Duke Med and feel confident I was in good hands at VA.
I think you'd benefit from added healthcare with the VA. It gives you a second option for a lot of issues that might come up.

David · « **Reply #13 on:** April 30, 2015, 11:06:40 pm »

Motor- will marijuana in the drug test be a deal breaker for a 100% s/c for ptsd at the va for havoni?

motor · « **Reply #14 on:** May 01, 2015, 07:59:13 am »

Hi David, man timing's everything, I just had my EOT appt with my liver doc Wednesday, I could have asked. Maybe my experience will help. I would think marijuana's not a deal breaker and here's my reasoning.
The day I began my Harvoni at VA, the pharmacist gave us an orientation class about how to take the drug and what other drugs not to take or when to take in combination with Harvoni. One veteran asked if he could continue marijuana use. There was an on/off the record response, but this veteran was being given Harvoni.
They did drug test me the day they scheduled me for Harvoni and 3mos later when they started me on Harvoni. I'm drug free so not a concern.

David · « **Reply #15 on:** May 01, 2015, 11:01:40 am »

Hi motor. Thanks a million. That's a big load off my mind. I saw my new PCP on April fifteenth and told him I wanted to be treated. He said he would set up a consult with Hepatology, and I got my letter last week for my appointment, which is Tuesday, May fifth (probably the fastest in the history of the VA.) I haven't smoked since I got the letter, but I'm probably not completely clean yet, they caught me a little off my guard. I have not seen them since '05 when they told me my damage was minimal and they advised me to wait for something better to come along. I haven't drank since '03 and don't do chemicals. It's been ten years and I have held up my end of the deal, I pray they will hold up theirs now that something better has come along. My PCP ordered vl testing done on the fifteenth. I am at 10,900,000, as opposed to 500,000 in '05, and I can tell it. Can you tell me what to expect next? Will I have my initial drug test on Tuesday, or will I have other appointments first? I do not intend to take anything that is not absolutely necessary during treatment. If they meant for marijuana to be part of the treatment, they would have put it in the pill. This is much too important to screw it up with stupidity. As a veteran yourself, any insight you can give me will be greatly appreciated. As one might expect, I am quite anxious. Again, thank you very much for this peace of mind. Also, thanks for your post and link to the Salisbury VA. article. I go to Dorn in Columbia, S.C. I hope their program is the same.

motor · « **Reply #16 on:** May 02, 2015, 09:55:52 am »

David, happy to help, I've gained a ton from this website and feels good to give back. Take the time to click on profile link at top of page and create your signature. It's the right thing to do. Your posts become more meaningful for guests viewing and for members/posters responding. Hope you agree, it's not mandatory.
In Jul'14 to get my first appt Aug'14 at the VA Platinum Clinic(infectious diseases) thru my VA PCP, I had to transfer my private sector May'14 testing positive HepC vl 3.6M records. The GI doctor gave me a Fibroscan test, ordered bloodwork retesting HVC and vL and HIV, HepA,B and CBC, liver panel, etc., but did not urine drug test me. He told me I scored F0-1 on Fibroscan and said come back in Nov'14.
Keep in mind at the time Sovaldi was on the scene , but Harvoni approval was not coming 'til Oct'14. VA was/is? only treating stage 2 liver disease.
I don't know if protocol call has changed, but I think they have to ask you if you will submit to a liver biopsy. JUST SAY NO! That didn't come up for me until they were considering me for Harvoni. The nurse stepped out of exam room with that info and I worried that was the deal breaker! When she came back, I tried to say that I would get one to get Harvoni, but she had moved on, not a concern. They did drug test me that day and more bloodwork incl vL and another Fibroscan.
So, your first visit might be more like this. I think alcohol would be a deal breaker more than marijuana. I think the VA just wants to be sure you will be compliant and this expensive drug is not wasted.
I think you're on the smart track and hope this helps. I'm curious to hear what happens at your appt, good luck.

David · « **Reply #17 on:** May 02, 2015, 11:16:46 am »

Thank you Motor. Very kind of you to take the time to give me a ton of peace of mind. As for my signature, I wondered how to do that. I am not the smartest guy in the world and I am no computer geek. Also, this is the first forum I have ever joined and , as I'm sure you know, sometimes it's hard to see through this brain fog. I will take care of that today and I will certainly let you know how my appointment goes on Tuesday. I am very glad to have found this forum. The support I get from people like you is invaluable. Again, thank you very much.

David

motor · « **Reply #18 on:** May 04, 2015, 04:09:52 pm »

David, I thought of something else useful for you, the My HealtheVet site. Here's the link: https://www.myhealth.va.gov
Create your account and when you're on VA campus tomorrow, you can stop by the office for this site and upgrade to premium. Or you might be able to upgrade online now. When I did it you had to go in person. You can use this site to see your bloodwork results, renew VA prescriptions, message your PCP and a lot of features that might help.

David · « **Reply #19 on:** May 04, 2015, 07:51:57 pm »

Thanks, Motor. I have a premium myheathevet account, used it this morning to send a secure message to my PCP to ask for refills of two of my meds. A couple hours later they messaged back to say it was in the mail. I have an appointment in the morning (May 5th) at 10:00 with a nurse and 10:30 with the doctor. I have hard copies of my records from June, 2005 when a doctor gave me the results of my biopsy. He said if my liver damage was any less it wouldn't even be detectable. He said his advice was to wait for something better to come along. I didn't believe him, so he set up an appointment with the chief of hepatology for a second opinion, who told me the same. He recommended a follow up biopsy in three to five years. All of my liver enzymes have always been normal, and when I asked my PCP about a biopsy years later, he said as long as my enzymes were normal, there was no need to stick my liver. Typical VA response. You don't wait until the house burns down to call the fire department, you call them at the first sign of smoke. I held up my end of the deal, haven't seen them for a decade, now I expect the VA to hold up theirs, protocol or not. I bought a small digital voice recorder to record our meeting since I can't rely on my memory any more. I will be courteous, but I intend to let him know that I will not accept half measures that will only make the virus harder to kill later. My vl is 10.9 and I intend to go into this fight full speed ahead, guns blazin', if I have to take it all the way to the White House. I am 100% s/c for PTSD, and I have done more than my part. Thank you tremendously for your support and consideration. I will let you know how it goes.

motor · « **Reply #20 on:** May 05, 2015, 08:01:33 am »

David, smart to take recorder, I take a notepad. I just assumed you weren't on eVet when you didn't know ALT/ASTs'. To see bloodwork history, on top bar click: TRACK HEALTH>LABS&TESTS>VA Chemistry/Hematology>Plasma. I can see my bloodwork history back to first tests in 2007 when I started VA healthcare. You can also click on PHARMACY and order your own 'script refills bypassing secure messaging.
Hey, you're in the sweetspot, you're about to be cured of HepC without the brutal side effects of past treatments with 50% cure rates. It's all good that VA has waited 'til now. Harvoni is an amazing, powerful cure with little effort from patient. Be thankful to doc that didn't puncture your liver again.
I'm curious how/when you learned you have HepC. The VA never tested me for HepC, just asked me if I wanted to talk to someone about my drinking, which made my blood boil! I related this to my private sector doc and he had me stop drinking for 2mos and tested liver enzymes. The irony of this was ALT/AST numbers were highest I'd ever seen. That started my heightened involvement with my healthcare.

David · « **Reply #21 on:** May 06, 2015, 07:48:50 pm »

Motor- thanks for your post and your interest in my plight. I apologize for not replying sooner. I did not get home from the VA until well after noon, even though my appointment was at ten thirty and I only live fifteen minutes away. Then my son called and asked to borrow some money, so I had to go to the bank and withdraw a small fortune (to me anyway, $ 4,000) and drive seventy five miles to get it to him. I went by my long time best friends house and had dinner while I was there, and that put me well after midnight getting home. Also, It would not have been appropriate for me to respond as soon as I got home because I was so mad when I got home that If I had responded then, I probably would have been kicked off this forum because of my language, but I will get to that in a minute. As for my diagnosis and ALT/AST levels, I was diagnosed in early 2005, having been detected by routine blood work. The VA routinely tests for hepatitis due to its prevalence among veterans, especially those who served during the Viet Nam/ post Viet Nam era. Some years ago, I received a letter from the Commandant of the Marine Corps, or his office explaining that from 1957 until 1987 all the ground water at Camp Lejeune was highly contaminated with dry cleaning chemicals and industrial solvents (VOC's) including Vinyl Chloride, Perchloroethylene (PCE), Trichloroethylene (TCE), trans 1,2-Dichloroethylene (DCE), and Benzene. Also, above ground and underground fuel tanks leaked, according to Marine Corps records, between 20,000 and 33,150 gallons of fuel including gasoline, unleaded gasoline, diesel fuel and kerosene, not including fuels lost in transfer or other unreported spills. Also present were PCP and PCB's from the dumping of old electrical transformers, DDT, Chlordane, and radioactive medical waste and others. Also, drums of possible nerve and mustard gas were buried at the rifle range in 1953 according to a timeline compiled by Mike Partain of www.tftptf.com. Camp Lejeune became one of, if not the largest Federal superfund cleanup sites in history. ( See Times Beach, Mo., Love Canal, N.Y) I was asked to register with the Judge Advocate General at the Washington Naval Yard and supply copies of all medical records since my assignment to Camp Lejeune in 1975, so I have hard copies of all. I have been plagued with infected sebaceous cysts which must be lanced, drained of pus and sebum and packed with iodine impregnated gauze every since I reported to Camp Lejeune. Sometimes I would report to sickbay only to find two or three other Marines waiting to see a Corpsman for the same problem, another possible source of my infection. I was separated from active duty in 1979 and honorably discharged in 1981. I have been a patient at William Jennings Bryan Dorn VAMC every since.
Getting back to your question, I was diagnosed and biopsied in May, 2005. When I saw my Hepatologist in June, 2005, he told me that my liver damage was so
minimal that if it was any less, it wouldn't even be detectable. He advised me to forego the Interferon and wait for something better to come along. I told him that that was impossible and that I wanted a second opinion. He set me up an appointment with the chief of Hepatology, who told me the same. So I waited, for a solid decade. At the time, before myhealthevet, lab reports were listed in a list format. According to lab results dated March 24, 2005 my AST was 25.00 and my ALT was 30.00. Since myhealthevet, they are listed in panels, i.e. Hepatic function panel. According to blood work done on April 7, 2015 my Aspartate Aminotransferase (AST, I presume) was exactly the same, 25 and my Alanine Aminotransferase ( ALT, I presume) was also the same, 30.
The VAMC here is a nightmare, a farce and a joke, beginning with parking. You must arrive at least an hour early so you can circle all of the parking lots like a vulture, hoping to catch someone as they are leaving so that you can have their space, or do as I do and pull my truck up over the curb and park in the grass. When I finally got to see the nurse, over an hour late even though there were several no-shows before me, ( who had probably walked out) it was only so she could give me a "class" using a ridiculous little booklet with cartoon-like drawings to explain the transmission and effects of hepatitis, information I have known for a decade now. I was beginning to become annoyed. My patience is thin, especially with PTSD, when it comes to dealing with idiots. When I finally got to see the doctor, I told her I was going to record our meeting because I couldn't rely on my memory anymore. She said," This is a Federal facility, I'm not sure that's allowed." I said," OK, let's get on with it then." She asked me if I knew why I was there. I said," What kind of a question is that? This is Hepatology, isn't it?" she said yes, and I said, Well, then, I'm here because I'm dying from hepatitis-c and I want you to put me on Harvoni." She began to grin and gave a little giggle. I said," What the hell are you laughing at? You think this is funny?" She said," How do you know about Harvoni?" I said," Didn't I just tell you I'm dying from hepatitis? There's a little thing called the internet and I like to keep myself informed, especially when it comes to saving my own life. I knew about Harvoni and how it works before they made the first pill. I also know that it was approved by the FDA this past October and it is expensive, but the VA gets it at a huge discount because they buy it in large quantities." She said," That's right, we have two thousand veterans that need to be treated for hepatitis." I said "Well I'm only worried about one. Me." She did her little exam, pressing and thumping on and listening with her stethoscope to my chest and belly. She said, " You just had a C.T. scan done and your liver looks good." I had a dye contrast C.T. scan done on March 13, 2015 for urology because I had previously had two separate episodes of gross hematuria ( bleeding from my private part) to the point that when I got up in the morning, the whole front of my skivvies was covered in blood. I never found out for sure what caused it, but I believe it was kidney stones, because on two subsequent episodes I had apparently passed them because I felt as though my urinary tract had been scratched. The radiology report said " The liver and spleen appear homogeneous." I said, " So what does that mean, your not going to put me on Harvoni, because I heard that you had to be in stage two before they would prescribe it." She said, " You have to be in stage three."
I said, "What? I'll have irreversible cirrhosis by then!" She said "That's the policy." I said " Whose policy, yours or the VA's? Isn't the first article of your Hippocratic Oath to first do no harm? Don't you think neglecting my health care to the point that irreversible damage is done when you have the medicine to cure it is doing harm?" She said," You need to go by the lab and have blood drawn before you leave. (no urine) You won't be able to see the doctor for at least two months." I said, " Isn't your name DOCTOR Siddiqui?" She said, " Yes, but this is just for a consult." I said I had a consult a decade ago, so everything I've done today has been a waste of time and resources? You can believe the lab is not the only place I'm going today. I'm going to see if I can change some policy and take some medical license, starting with yours!" I went to the lab and then to the patient rep's office. When I told him about it, he was stunned. He made a couple of phone calls and said, " Is this your correct phone number?" I said yes, and he said, " You go home and don't worry about this. I'm going to get to the bottom of this and I'll call you when I do." I seriously doubt he will, but I will give him until the end of the week. Then come Monday, I'm going to start contacting people starting with the Director of Dorn, Timothy B. McMurray, if I have to chain myself to his desk, the DAV, of which I am a lifetime member and who got my 100% rating, the media, my Congressman and both of my U.S. Senators, Secretary of Veterans Affairs Robert McDonald, The American Medical Association and any and everybody else I can think of.
Every since my long time PCP retired a couple of years ago, I have seen every kind of quack you can think of. One doctor changed my diabetes medicine but didn't write any refills. When I began to run low and tried to get a refill, I called the TAP line twice, sent a secure message, called the pharmacy and the day I ran out I tried to call the blue team four times and got everybody BUT the blue team. Finally I went there at 1:00 and told the "lady" at the check in window I needed someone to write a refill because I hadn't had any for the last two days. She shoved a sheet of paper at me and said, " Fill this out and sit down. It will probably be four o'clock or later before someone can see you." I said, "I don't need to be seen, I just need someone to authorize a refill. It says right here on the bottle take three tablets with breakfast. Who eats breakfast at four o'clock in the afternoon?" She said" You need to sit down." I said, " I will NOT sit down. Get up and go get a supervisor." She Just glared at me. I told her," Better yet, go get Doctor Mitchell." She said," Doctor Mitchell is not in charge of the clinics anymore." I said," Then go get the Director. I'll bet he knows who is in charge. Who Is the Director here now, anyway?" She said she didn't know. I said," You don't even know who you work for? No wonder I can't get my medicine!" She said," We just got a new one and I don't know who he is." I said," You should have known that before he got here so you could look busy when you saw him coming since you're not doing anything anyway." I was beginning to get loud so she told another nurse to get the VA Police. I filled out the paper including the statement" I do not desire to die from diabetes like my brother did!" When I laid the pen down, she said," Now have a seat." I threw paper at her and said," Tell them to call me," and walked out. Before I got to my truck, the nursing supervisor called and said my medicine was in the pharmacy and I could pick it up. I said," And it's not even four o'clock." Before I got back in the building, the VA Police called and said they had wanted to speak to me while I was in the building, but I had gotten away before they could. I said," That's OK. I'm on the way back in. Meet me at the pharmacy and I'll tell you anything you want to know." When I told them what happened, I said," If you want to lock me up for that, go ahead." They said," No, we're not going to lock you up, we're going to see the Patient Rep. and make sure this doesn't happen again." The next PCP I saw preached to me about something I had never heard of and couldn't understand and told me that Robin Williams, Michael Jackson, Elvis Presley and The Beatles all died because they were "Trapped in a web of reptiles!" Then he took me next door and trimmed my toenails, even though the nurse was trying her best to get me out of there so he could see the next veteran. Then, when I got assigned to another PCP, I began to run low on my blood pressure medicine with no refills left, I called the TAP line and asked them to Tell my doctor that I needed to pick up a refill, then I realized that I had Two weeks worth in my travel trailer, so I sent a secure message asking someone to call me so I could tell them they could mail it. The nurse messaged back that I was abusing the system by using both the tap line and secure messaging to address the same concern and that any future occurrence would result in my secure messaging "privileges" being revoked. I messaged back to her that being able to communicate with my doctor was not a "privilege", it was a BENIFIT that I had earned by pulling dead Sailors and Marines out of Barcelona harbor and the Mediterranean Sea for two weeks in 1977. Forty-nine of them. I told her that she had no authority over ANY of my benefits and that Secretary of Veterans Affairs Robert McDonald had publicly stated that he intended to fire 1000 VA employees, and that I intended to ask him to make her one of them. Then, my doctor called and said she had refilled my medicine but I was going to have to go on hemodialysis, something that no doctor has ever mentioned to me, because my microalbumin was 490. When I got my labs done and went to my appointment a little over a week later, she said my microalbumin was 222. I asked her how that happened, she said she didn't know. I asked if she still thought I was going to have to go on dialysis, she said she didn't know, she would have to do a 24 hour urine collection for a creatinine clearance test. She also said she wanted me to put Vicks Vapor rub on my toenails every night for a year for toenail fungus and to get a girlfriend and a dog. She never called back with the creatinine clearance results, even though I had called the TAP line twice and asked her to. Finally, after two weeks of waiting and worrying, I called the Directors office and blew a fuse. In about ten minutes she called and said," Well we normally don't call when lab results are normal." I said," Normally your doctor doesn't call and say you're going to have to be hooked up to a machine for five hours a day and probably only have about five years left to live, before they have even met you. Needless to say, I asked for a different provider. Finally, I got one I'm pleased with, he was a Navy Corpsman. I asked him about the Vicks vapor rub and told him it made my feet slippery when I got in the shower in the morning. He said," Don't do that! You don't have any fungus, and that stuff doesn't work anyway. You're going to fall and hurt yourself!" I didn't ask him about the girlfriend or the dog, I can't take proper care of either one.
Thanks for your interest and letting me vent. I will keep you apprised of any new developments.

Debula · « **Reply #22 on:** May 07, 2015, 11:15:49 am »

Dear David
I am just in shock! I am sorry this crap has to happen to people like you who given so much so we can have a better life
I have to admit I laughed out loud a couple of times and applauded some of your witty comebacks! You tell em!

I hope you get this all situated and are able to get on Harvoni
It is not just the VA that is not giving Harvoni unless you are "sick enough"
Most insurances are doing this too

I wonder what it would take to get this little fact to the media?

It is beyond my comprehension that we have a cure for HepC that will probably work in less time if given early before cirrhosis and yet they want people to get MORE sick before they will give it to them. Go figure that logic..

Keep fighting the fight and good luck!!

David · « **Reply #23 on:** May 07, 2015, 01:29:19 pm »

Debula,

How kind of you to reply! Kind of restores my faith in humanity (some of them, anyway). I sincerely hope you can get the treatment you need and be cured. At this point, I don't know what will happen, but I can assure you that something will, even if nothing more than arresting me. What difference does it make, in a way, I'm already in prison. I called the local television news station that does a lot of investigative reports on this VAMC ( I realize that calling them a medical center is quite a stretch) to see if they would be interested in looking into this matter. Naturally I didn't get an answer. I left a message, but they haven't returned my call yet. I guess they are too busy investigating the rest of the corruption that goes on around here. I have a friend who is also infected and was turned down by his insurance company. His doctor appealed, but his employer recently changed to Blue Cross/ Blue Shield, making his appeal moot. Hopefully they will be more willing to help him. I appreciate the support I get from people like you and others on this forum. I am glad I found it. It is a great source of support and information from some very knowledgeable people. I will keep you in my prayers. Thank you.

Debula · « **Reply #24 on:** May 07, 2015, 01:37:17 pm »

I also sent an email to my local NBC news station
I don't know if it will do anything but hey I had to try!
I was able to get treatment because my liver is in bad shape
Imagine being glad that your liver is in bad shape so you can get approved..
It is just a disgrace!
I will keep you and all the folks that are having a hard time getting the treatment in my prayers. Hopefully they will relax their qualifications soon and give it everybody that is infected
I cried when I read (on another thread) about a person that had to take out equity in their home and charge their credit cards for the treatment ..not to mention having to put off retirement. What has this world (country) come to?

Oh by the way. Have the VA put it in writing and also maybe contact GILEAD to see if they can help you. I know that some people that have been denied 3 times by their insurance qualify to get it for free from Gilead directly
Blessings
Deb

motor · « **Reply #25 on:** May 07, 2015, 04:55:26 pm »

Wow David, obviously not all VA hospitals are the same. The good news is your liver appears to be fine with no damage or inflammation. The longer you can wait for treatment, the better and cheaper the treatment gets.
I know it's a lot easier to give this advice than adhere to it...But, you've got to keep a civil tone and not burn any bridges, especially if VA is your only angle on healthcare. You seem to have a pretty good sense of humor, that might serve you best to keep from blowing your top.
Thank God for Hep Mag and Google Search, eat liver friendly and get some exercise, and wait your turn for cure...or pay out of pocket.

David · « **Reply #26 on:** May 07, 2015, 06:05:31 pm »

You're right, Motor. Sounds like good advice. Sampson killed 10,000 Philistines with the jawbone of an ass. Maybe I can avoid killing myself with the same. I don't have a choice.

David · « **Reply #27 on:** May 15, 2015, 11:45:45 pm »

Well, I had crow for supper tonight. I talked to the patient representative at the VA that I talked to after my consult on the fifth. He said that I had been approved for treatment with Harvoni, I presume. He said she had to do an e-consult with so and so at PharmD (whatever that is?) for assistance with treatment protocol and monitoring. I have her notes and lab results, but they might as well be in Latin to me. I don't know if this means I'm at stage three or what. She said at our visit that she would order hep fibrosis panel, but like I said, it may as well be in Latin, as far as I can interpret. At any rate, it is still good news. Maybe from now on, I can follow my late fathers advice and keep my mouth shut(except to take a pill), and my eyes and ears open. Thank you all, Motor, Debula, Lynn, and Lucinda for your tremendous support and knowledge. I will let you know how it goes.
David.

Debula · « **Reply #28 on:** May 18, 2015, 10:19:35 am »

Great news David! Yes please keep us posted-have been thinking about you

David · « **Reply #29 on:** May 18, 2015, 01:08:34 pm »

Thanks, Deb

I hope you get some good numbers back on you VL this week. Hang in there! You'll be in my thoughts and prayers. Keep us posted.

David

Else · « **Reply #30 on:** May 19, 2015, 02:56:09 pm »

Hi David,

Your medical experiences made my hair stand on end. They could run a whole season of "The Twilight Zone" based on your run-in's with the VA, crazy doctors and apathetic paperpushers. I think you're amazing for staying in the fight.

If anyone's earned a cure and then some, it's you.
Best to you,
Else

David · « **Reply #31 on:** May 20, 2015, 11:42:12 am »

Thanks, Else. I think we're making some progress, but we'll see. I'll keep you posted.
David

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