Lorretta and Doug on Hep C May 8 2018

May 17, 2018
In response to an invitation to contribute to a blog post for Pacific Hepatitis C Network, a member of Diverse Organization Providing Education and Regional Services (DOPERS) in Langley was interviewed regarding experiences within the health care system.

Doug of Langley is Hepatitis C positive for 23 years and is no longer able to work. A single father with heart problems, he has sought Hep C treatment and does not know why he is ineligible. He regrets some behavior in his youth that led to his infection and has a strong plea to others to be careful and be mindful of the risks that can have such serious consequences.

Lorretta interviewed her best friend Doug on his Hep C infection.

Please scroll down to read full transcript of the video!

 


Lorretta – Hi! My name is Lorretta. I’m with Diverse Organization Providing Education and Regional Services here in Langley.  Today we are talking about experiences in accessing health care specifically accessing health care for Hep C. We are sitting here with Doug who will be sharing his story with us today. Doug, how are you?

Doug – Pretty Good.

Lorretta – Please tell us something about you and what city you live in?

Doug – I’m an ex construction worker for now. I’m living in Aldegrove BC and single dad.

Lorretta – What is it like living with Hep C?

Doug – The first few years, you don’t really notice it. I’ve had it for probably going on close to 15 – 20 years now. I didn’t seek treatment but nowadays getting tired, fatigued, hard to get up in the morning. For the most part it’s alright…it has its downswings where you don’t want to move and you have no energy. Then you be right back up again.

Lorretta – What are some of the issues you are facing?

Doug – Not being able to work. I’m being told now that my heart ..got heart problems…that I might need heart surgery. I went to go see an infections specialist doctor about the Hep C medication. But I was turned down and given no reason at all why. Except they were sending me to a specialist in Vancouver and that was in January. I haven’t heard nothing since.

Lorretta – What services could you use but aren’t receiving?

Doug – Well services to get my Hep C medication would be a start. Trying to stick around as long as I can for my daughter. Outside of that, pretty well clean now. I haven’t been using for years. Being a good dad has been my main objective. I figure the Hep C, get that taken care of before my heart gets even worse.

Lorretta – How long ago were you diagnosed and what promoted you to get a diagnosis?

Doug – I think it was 1995ish…somewhere between 95-98 back in Surrey Pre Trial. It was just a medical thing. In jail you get everything checked out.

Lorretta – Have you received or receiving any treatment currently?

Doug – No, I am trying to get treatment for my Hep C.

Lorretta – What is the main reason you stopped, started, delayed treatment?

Doug – I never did stop since I’ve been trying from one doctor to another doctor to infection disease specialist who told me the first time I apply should be no problem..I promised I’d take every pill …90 days it should be taken care of. And then I got a phone call, they turned down your application for the Hep C medication. We’re sending you to a Vancouver doctor and never called back.

Lorretta – Describe some of the best or worst interactions with the health care system that you have had related to your search for Hep C treatment?

Doug – This is the first time, I have gone for Hep C treatment. My daughter’s got me changing a lot of things in my life so…

Lorretta – What is your current living situation? Are you homeless?  Are you in Social Housing? Do you have problems?

Doug – Nope besides having a couple of annoying roommates. I have a pretty good place. I’ve been there for two years. They got their issues they’re working on. They’re trying to follow suit…where I live is not an issue.

Lorretta – Do you think your living situation negatively impacts your ability to receive effective treatment?

Doug – No, what they do is what they do.That’s their thing. Me and my daughter…they respect. Nope they don’t impact me at all. They do their own thing.

Lorretta – Describe something that might help you that you can not find where you live, or can not access? Treatment?

Doug – Well Treatment for the Hep C.

Lorretta – Doctors?

Doug – I’ve gone to doctors, tried that. Gone to three.

Lorretta – What public resources are you currently accessing?

Doug – I’m not…I used to back when I was coming off the streets…Stepping Stones…there is another over here which is a derivative of Stepping Stones … Fraser Holland was the first guy when I first started getting my act together was through him. He was the one who got through to me. And he’s still involved in the community but no, now I’m on disability and because of the heart problems and health problems…I haven’t been able to leave the house very much at all.

Lorretta – Describe some of the ways Hep C affects your life?

Doug – Well I never used to have to take naps all the time. My liver is swelling. I get pain underneath my right rib. The doctors are telling me to back for a blood test, go back for a blood test. I’m getting a rash from itching…because when your liver starts to fail…you get a …that’s going away. I’ve been living like a bunk with the food, the nutrients, no fat, no salt. I’m barely keeping up with it. I can’t play with my doctor for more than an hour. She wants to go do things…I wear right out. It’s just frustrating. I’m trying to be a better dad, the health aspect taking a lot out of that.

Lorretta – If you could snap your fingers and change one thing about your present condition what would it be?

Doug – My Health. I want to be back at work. I want to be out there and socialize. Being a good dad…doing stuff with my daughter that doesn’t involve a TV screen or computer screen.

Lorretta – What is missing in your treatment? What are missing support services?

Doug – I don’t know, that’s why I am here. Hopefully we can figure that out. I need treatment for my Hep C. There has to be some organization. I don’t see Pharmacare being able to say No and not give you a reason and shut down your file. It doesn’t make sense to me. There’s got to be something out there.

Lorretta – What are some of your frustrations in accessing proper treatment? Cost factor? Time Factor? Lack of Medical Supports?

Doug – Cost factor’s not, Time factor’s not…I never had to have Medical Support…getting to the doctor three, four, five times a week is like climbing Mount Everest with the breathing problems. I got to stop a block at a time to catch my breath, walk another block, stop.. That’s the only frustration I have.. Always failing, fainting again…I don’t want to do that anymore.  So I can’t hurry to my appointment so I have to leave an hour beforehand just to make sure I’m there on time.

Lorretta – Do you have friends, family you can talk to while going through this?

Doug – Oh they know. They’ve had problems with Pharmacare and Doctors before. They accept it as a general norm.

Lorretta – Describe a day in your life? Does it include taking your medicine?

Doug – Everyday I take my heart medicine. One pill a day until they figure out what’s going on.

Lorretta – Do you have access to good healthy food and drink?

Doug -Yes definitely

Lorretta – How has your life changed since your Hep C diagnosis?

Doug – I was reckless when I was younger. Until I figure out I want to do something about it. It just surprised me that some people that are still using on the streets doing crime are getting the Hep C medication and here I’m trying to be a dad…my mom is hearing impaired. I’m interpreting for half my family. And I’m clean. I haven’t been in jail for like nine years and they turn me down. Just don’t get it.

Lorretta – If you had one question to ask BC Premier Horgan or Prime Minister Trudeau about Hep C treatment, what would it be?

Doug – Something along the lines…I don’t have anything against people because their situation in getting the medication but if medication are being handed out, then why are people like Fathers, people who are getting their lives together being disapproved while other people who are wrecking their lives and choose to do so are getting the medication. I don’t get it. People are ODing. I know of a couple of people…I’m not at liberty to say names but it’s just really frustrating…for the first time I go to get treatment…I get shot down. I looked it up online. For the amount of cost by not giving people their Hep C medication…the after effects when you get Liver Cirrhois costs the health care system way more in Liver transplants…it just seems to be something that by putting it off another time. A lot of people who should be getting their Hep C medication don’t have to go to right to the point of liver failure before they are accepted for medication. Which apparently is the case today. That’s got to be cleared up if possible.

Lorretta – Do you have any final thoughts on Hep C? Any words of advice?

Doug – It sucks…don’t get it. It tires you right out and then trying to get treatment. I would have moved to Alberta right now, just because if I stayed there for a year, I could get them to cover it…I don’t want to have to leave my daughter to do that. It’s really been tough. I don’t want to have to move to another Province.

Don – What were they saying to you to not give your medication?

Doug – They wouldn’t give me one. They said it was denied. They’ll be sending you to a specialist in Vancouver. I called two months later to try to follow up and this guy hasn’t called me. And they say they don’t know what to tell me. Just sit and wait.

Don – So you’re just on a waiting list then

Doug – Supposedly…it’s been about 6 months now. At least a phone call of who the doctor might be? Or maybe why they turned it down, would be nice?  I was on Methadone years ago…it keeps popping up on my medication list. The doctors still ask me if I am on Methadone, I have to correct them. So maybe if you are still on Methadone, they don’t give it to you. Maybe…I don’t know. Just like to.figure it out. It’d be nice if they have me an answer. Straightforward answers work out a lot better.

Don – Have you tried emailing the Health Authority or anything like that?

Doug – I didn’t want to cause a stir without having someone actually behind me knowing what they are doing?  Because I don’t want to screw it up a second time…I really want to get that. I like the time with my daughter. I have two older kids that I wasn’t there for. It’s catching up with me.  I’m realizing that the time with your kids is priceless…so I’m trying to do the best that I can for my 9 year old girl…the rewards ..I’d like to continue….get as many years as I can with her. She’s my little Angel. That’s why I am here…msybe seek a little direction. Maybe get a phone call in a couple of weeks or something. Go from there.

Lorretta –  Well here are our questions about Hep C. Thank you Doug for being with us.

Doug – Thank you! This is stuff I wanted to get off my chest anyways. I still keep my hopes high.

Lorretta – Exactly…got to keep trying.

Doug – I think of her and I can’t help it.

Lorretta – Thanks Doug for this.

Doug – No problem

Lorretta – I really appreciate this.

Doug – It’s been a while

Lorretta – You are my best friend…of course I am going to do everything I can to help you.

 

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