Danny and Cherie 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 Surrey was interviewed regarding experiences within the health care system.

Cherie of Surrey, who found out she had Hep C 15 years ago, has a lot of questions about what services are available for her. She is in a relationship with an non-infected person, and knows how hard it is on a relationship when one person receives a Hep-C diagnosis. In fact, this is how she originally contracted the disease. Although she has stable housing for the past 4 months, she still finds it very difficult to stabilize her life and find the time to get the treatment she needs.

Danny, Vice President of  Diverse Organization Providing Education and Regional Services (DOPERS) interviewed his good friend Cherie on her Hep C infection.

Please scroll down to read full transcript of the video!

 


Danny – Hi! I’m Danny. I’m with Diverse Organization Providing Education and Regional Services here in Surrey. And today we are talking about experiences accessing health care and specifically accessing health care for Hepatitis C. We are sitting with Cherie who will be sharing her story with us today. Cherie, how are you?

Cherie – I’m good.

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

Cherie – I’m from Surrey. I’ve had Hep C now for 15 years. 10-15 years. I work at a job, trying to better my life.

Danny – What is it like living with Hep C?

Cherie – It’s hard…I don’t think most of my friends know that I have it but just for the simple fact that I found out that a lot of people are judgmental. They say that it doesn’t bother them but in all actuality they don’t invite you over as much, they just act different around you. I choose not to tell people.

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

Cherie – My current relationship, my partner doesn’t have Hep C…a lot of times it gets to be really tough in our relationship because he brings it up a lot. And he is always bugging me about going to get treatment. And that is another issue, I just got into a place…I’ve been there three and a half months now. So now my doctors are finally talking to me again doing the treatment.

Danny – So your partner doesn’t have Hep C, that is something you are always aware of.

Cherie – Yeah he…

Danny – Conflict plays on your mind?

Cherie – Yeah, he throws it in my face…we fight

Danny – Yes, goes to question self worth

Cherie – Yeah

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

Cherie – Oh God…I actually don’t know what a lot of the services are available?  I’m still finding out things that I can access. I’m on Methadone…the clinic that I got to…my doctor has set it up so a liver specialist comes in to get the process going for treatment. So she has kind of incorporated it into one clini

Danny – Sounds like your doctor is very pro services, pro patient

Cherie – Yeah, she cares about her patients

Danny – You said at the very beginning, how long ago you were diagnosed, like 10-15 years

Cherie – Between 10-15 years

Danny – What prompted you to get diagnosis?

Cherie – I had a feeling in my gut. I had a feeling in my gut that I had it. Because my partner at the time, told me he had Hep C. I used needles back then. I was someone who waa very very careful when I used needles. I only used needles one time. I tried to dispose of them properly where my partner he wasn’t so careful. I was actually in a recovery house. And I hadnt got my methadone for a long period of time…finally the director..on day 7 of no methadone…I was having seizures. It was really hard. So the director with trying to get my methadone back on track.

She allowed me to go get a point of heroin but I didn’t have any new rigs. Then I thought the ones I had in my bag were only mine. I didn’t know that my partner had put some of his in there.

Danny – So a simple mistake

Cherie – And it was the one and only time where I used a rig more than once. But I didn’t know his were in there. And I went to the doctor right away. I told him what had happened. So they tested me and I came back positive.

Danny – So are you working with your doctor receiving treatment currently?

Cherie – I’m not currently on the treatment. i’ve started the process with the liver specialist. I have to go for an echo of your liver. They do it with sound. They map out your liver. It is supposed to show how much damage in the liver…what stage you are at.

Danny – What is the main reason you started to access treatment?

Cherie – Originally when I first got Hep C, I was under the false impression that people…it starts doing damage right away…so I was showing symptoms right away…it was affecting me pretty badly. So I was eligible for treatment 6 months after I was diagnosed but because of my living situation at the time plus I was eligble for a Pegatron…I had friends who were on it. I saw how horrible it was and the hell they went through with it. I was kind of scared to do the treatment…I was told I would have to do it for a year.

Danny- So you were actually eligible for treatment long time ago but you were scared because you had friends that you’ve seen what they went through…they went through with negative results?

Cherie – They got really sick..that’s what got me  back into treatment because of the new cures, new treatments and the success rates that come with them

Danny – If you could describe some reason of the best or worst interactions with the health care system that you have had related to your search for Hep C treatment?

Cherie – I get shut out of a lot…when I first started looking…I shut out of a lot of places…they wouldn’t even talk to me about it …”Oh…we have to get back to you”. Not having a phone…it’s hard having somebody contact you about things when you don’t have any way for them to get a hold of you.

Danny – What is your current living situation?

Cherie – I just got into a place. I’ve been there for 3.5 months and it seems to be stable.

Danny – Do you think your living situation impacts your ability to receive services or effective treatment?

Cherie – Yeah…when you don’t have a place to live to be stable for anything

Danny – Right

Cherie – I had a hard time keeping appointments…that’s one thing that’s a definite must ..you got to keep your appointments

Danny – Exactly

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

Cherie – Better services…I know that there is Positive Haven which has the Hep C food bank but if they had something like that but on a bigger scale maybe or more services available. Counseling because it is hard and I have depression. I have depression for a lot of reasons but that is one of them. It does affect me a great deal.

Danny – So you having trouble finding public resources to access? Are you accessing some of those resources now?

Cherie – I’m a member of Positive Haven. I do access their Food Bank. In terms of counseling…I don’t know a lot of..

Danny – You don’t know where to go? So maybe you work with your doctor to get..

Cherie – zyep

Danny – Starting up

Danny – How about describing some of the ways Hep C affects your life?

Cherie – I’m a lot more careful. I think things through a lot  . .just for the simple fact I don’t want someone else to get infected…even just cooking…cooking meals for other people… I have to be really careful I don’t cut myself because I could contaminate the food with my blood. I’m really, really careful with that..I had training to become a chef years ago. I quit because of my Hep C but now that there’s treatment for it, I might be able to do that once again.

Danny – If you could snap your fingers what would you change about your present condition?

Cherie – I would back and think twice before using that rig again

Danny – good honest answer, I think I would too.

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

Cherie – Welfare…I am on level one disability ..multiple barriers…and you don’t get a whole lot. I’m supposed to be getting a high protein diet allowance. It’s $40 which really doesn’t amount to much at the end of the day. My rent is $480 and then I got to buy my food and stuff on too of that. So I mean it’s not a whole lot of money. My diet is lacking. The Hep C food bank is great but you don’t get a whole lot. You get enough for a few days and that’s it. So many if there were more resources, that would be awesome.

Danny – So some of the frustrations in accessing treatment, what would they be?

Cherie – Just what’s available…knowing what’s available. I don’t even know if there is a list out there of what is available.

Danny – The time it takes to access services maybe?

Cherie – That too. Just limited. There are more services for guys than there are for girls.

Danny – Really? That’s interesting

Cherie – That’s the thing I noticed. Usually more for the guys than there is for the girls. The girls are more kept to themselves so..

Danny – You would think that women are more on top of their own treatment…or on top of their own physical well being

Cherie – I don’t know if that’s it or if it’s just…

Danny – Or is it geared towards guys?

Cherie – There’s more guys that have it I think. Women don’t really talk much about it because they get pushed down.

Danny – Ostracized?

Cherie – They get shut out…They get cut out all the time when they are in groups. And that happens in a lot of things with women.

Danny – Do you have friends and family you can talk to?

Cherie – I’m not really talking to my mom. Both my kids know that I have it. I’m very open with my kids…its for their safety too. They have the education that they need. Both my kids are negative so I’m lucky in that sense.

Danny – Do they encourage you to go find treatment?

Cherie – yep

Danny – Awesome…that’s great

Danny – So describe a day in your life Cherie?

Cherie – Pretty much… I get up everyday. I try to eat…I don’t have three meals a day…I eat six smaller meals a day. Just because it spreads my energy out better. Because I know my energy level is way down

Danny – Are you currently taking any medicine for Hepatitis C?

Cherie – Right now, no..I am just starting the process again so

Danny – So the doctor haven’t prescribed actually anything …your liver function’s low?

Cherie – Yeah no….she gives me iron supplements for my iron intake because my iron intake isn’t really that great. She gives me some other vitamins and stuff like that.That’s pretty much all she can do right now.

Danny – Out of the six meals you eat a day, are you eating healthy food and healthy drinks? Di you have access to good healthy foods?

Cherie – My partner tries to bring home as much as he can too…he’s good that way. I mean if it was just me, it would be difficult.

Danny – so you are a potato chip kind of girl?

Cherie – I love my junk food. Heehee!

Danny – heeheehee

Cherie – I think the last time I went to.the grocery store, I ended up buying a bucket of ice cream and cake! Haha! I brought that home because he has brought home fruits, vegetables and meat the day before. So I thought I’d bring home dessert!

Danny – It’s good to have somebody take care of the good parts

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

Cherie – I’m a lot more careful around other people. I’m more courteous, more cautious. It’s hard.

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

Cherie – Why isn’t everybody eligible for it?

Danny – Bingo! Good Question!

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

Cherie – Just be really careful with the people around you. Being aware of they have it. Being aware of the choices that you make.

Danny – Cherie, Thank you very much. That’s a lot of thoughtful insight on the answers that you gave us today. Very happy you shared with us all the stuff you shared with us today. Thanks for coming.

Danny – I’m the Vice President of Diverse Organization Providing Education and  Regional Services and I would like to say that are listening or watching this. Hepatitis C is a very real debilitating disease and it really needs to be addressed both at Provincial level and the lowest level, so that everybody that needs access to these services and the resources need to be provided to every individual that is living with Hepatitis C. Thank you very much!

 

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