Stephen and Grace on Hep C May 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.

Grace, STÓ:LŌ First Nations from Chilliwack who was diagnosed 30 years ago, is unable to receive treatment due to complications with HIV. She is under housed, and despite generally positive experiences with health care providers, she knows that her housing situation and lack of consistent meals does have an impact on her ability to receive care and achieve the health outcomes that she prefers.

Stephen interviewed his favourite friend Grace on her Hep C infection.

Please scroll down to read full transcript of the video!

 


Stephen – Hello! My name is Stephen. I’m with Diverse Organization Providing Education and Regional Services here in Surrey. Today we are talking about experiences access health care, specifically health care with Hepatitis C.

We are here with Grace, this lovely lady and she will be sharing her story with us.

Grace – My name is Grace. I’m First Nations. Stó:lō Nation. And I’m 57 years old. I’m Hep B, Hep C,  and HIV positive. I live in Surrey, BC

Stephen – What is it like to live with Hep C?

Grace – Sigh… Tiresome…tiresome…you get really tired, weak, withdrawn.. Mind you, at the same time..I don’t know if it’s the Hep C or if it’s HIV. It could be both…it could be all of them

Stephen – So what are some of the issues you are facing?

Grace – Health, Food…right now my body is failing…parts are…Liver, Kidneys

Stephen – So what services could you use but aren’t receiving?

Grace – I usually go to most services. I don’t use a lot of the food services now because I can’t walk to them and that is because of my health being down. Its very hard for me to stand for long periods of time so I miss out meals.

Stephen – How long ago were you diagnosed? What prompted you to go get checked out?

Grace – I was diagnosed with HIV 30 years ago. I lived in Grace Mansion in Vancouver Downtown Eastside where an Ex Boyfriend of mine came to me and told me he was Hep C. And he had given it to me. At the time, I didn’t expect…I wasn’t expecting it. I wasn’t expecting to be told this and it was really hard on me.  I didn’t really do anything because the file he gave me was so thick…that I’m like..it would take me forever to find out and get diagnosed..I didn’t want to die…so I honestly didn’t do anything about it.

Stephen – Are you receiving any treatment for it?

Grace – I’m not receiving any treatment. I’m not able to get treatment because of my HIV  because my count is so low…they have to wait until I get healthier which sucks…it sucks. And its getting worse.

Stephen – Describe some of the best of worse interactions related to your Hep C search for treatment?

Grace – I actually got to an awesome, awesome centre…its actually HIV, Jimmy Pattison hospital..they have super doctors there. And they will be getting me on the treatment when I am ready…when my body is up enough…they will be helping me, which is something I am hoping for because of my liver and stuff is so bad.

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

Grace – At the moment…if you were to ask me this…a month ago. I would have told you my housing is shitty. But at the moment, I got a new landlord…my housing is not great..but its not being homeless. I have a new fridge. With the help I’m able to get..my landlord is doing her best to help me which is something that I never had for six years while living in this place. It was the worst place that I lived.Rent is close to $1000 between that and my hydro. I pay way too much money…I’m out of groceries. I have problems with having to get food and because like I said before….because of my health, it’s not easy for me to walk to these places. I need to get more Ensure and protein foods. At the monent, my nurse is actually talking to me in trying to get me Loving Spoonful which is frozen meals being delivered to me because of my health, and because I am down now to 77 lbs. I have lost weight because of my illnesses and so now that I get to have a breather…I can get food put in which is a first in the past 6 years.

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

Grace – It’s hard enough as it is but knowing that I have all these other things, is even harder. And living where I live isn’t really too bad at the moment because I get picked up to go to doctors and clinics. And now finally, I’m going to getting housing…I’m on the waiting list which will make it even easier for me. I’m so grateful for that.

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

Grace – I have Nurses, people to come pick me up, take me to my appointments to wherever I need to go…I do actually have someone to help me with some Food Bank.

Stephen – What public resources are you currently accessing?

Grace – Right at the moment, I go to Night Shift which is a really awesome place…they help me get my Status,  help get ID. I also come to Lookout when I can make my way down here for dinner. I actually just got my ID today, which is great to get my Status. Also go to SUMS, Jim Pattison hospital

Stephen – How does Hep C affect your life?

Grace – Like I said earlier, it’s tiresome. It’s hard on your liver, hard on your body, it makes you weak. Like I said, he could be between that and HIV.

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

Grace – Everything! I want to change. I would like to be healthy. I would want my total life reborn.

Don – Describe a usual day? What’s it like to cook? What’s it like to use the stairs?

Grace – A day in the life is like very hard for me at times. Sometimes I don’t even want to.gdt out of bed because of my health. I can’t do stairs, because I have a very, very hard time…because I have a walker. My nurse is trying to get me into new housing where I get complete support, elevators, everything…where they will hopefully be getting me a scooter to help me with my health. Food wise, cleaning my home…they are trying to get me support workers right now because of my health. I have missed so many appointments, so much food lineups,  because I can’t do it. Cooking in my own house isn’t probably the best but it’s having the money to cook, that’s the problem.

Don – But you can cook, you can chop onions?

Grace – I can cook, I’m a very good cook. I’m a very good cook actually. I went to HAVE cooking school. I graduated. Cooking that I can do, is having the money to get the food. And the propwr food, not just cheap, crap stuff, to the get proper nutritional foods is where you need the money desperately. Desperately need the money.

Don – So your life would be a lot better if you were in supportive housing, where you are paying $375 in rent

Grace – I just got told a month ago, I am next…Yes! I am next on the list for housing in the West End, Vancouver…supportive HIV housing, doctors, hospital just down the street..everything. I am so grateful. Sorry I’m going to cry because I am so happy. Because that’s what I need. For me to live where I am, is tough.

Don – So when you wake up in the morning, do you feel sick? Do you feel ill? Do you have any kind of stomach problems? Do you lack energy?

Grace – When I get up in the morning, it’s like almost like a drag sometimes. I don’t want to get up. I just want to lay there and sleep and stay in bed. To get into my tub, to get a bath, it’s a struggle. Some days, I just want to give up. But I know its not the way to do it. But that’s how I feel some days.I feel like saying.”Ok, that’s it! I quit! I give up!” Then there’s the good days…there’s actually some good days…I want to go “Hey! Let’s go do something! Let’s go to the park. Let’s go swimming! Let’s go do something fun!” But unfortunately at this moment, those are far and in between at the moment. Come down here…today…because of the weather,  because of the heat, and because my body is in so much pain, I really wasn’t sure if I wanted to come down. But I know I have to do this for other people as well. Not only for me but it needs to be out there to let people know.

Ron – You were saying that housing situation is overtaking your rent but the subisdy was helping you.

Grace – The subsidy was helping me…my worker said “Don’t come back for another cheque”. I haven’t been able to talk to her. I apologize for saying this but I feel like grabbing her and shaking her “Hey, do you know what its like? Do you want to know what it’s like?” Now I am right down to where I was before that. I’m back down to having nothing.

Stephen – Bet she doesn’t.

Grace – Yeah, she doesn’t know what its like. She doesn’t understand that people who are sick,  who have health problems need money to survive. I’m so grateful. The first time in six years I finally got a feeezer. I got a fridge. I finally got Ice Cream that doesn’t melt in a day.  I need my subsidy back. I desperately need it back until I get moved into my housing in the West End which we are hoping will be this year.

Stephen – If you could snap your fingers and change one thing about your present condition, what would that be?

Grace – I would go snap! I would change everything!  Complete circle back. I want my health. I want money. I want it all. I want it to be clean, healthy ..healthy

Stephen – What are some of your frustrations in accessing proper treatment? Cost factor? Time factor?

Grace – I can’t get proper treatment because of my health. Unfortunately because my body is failing. They won’t do no treatment for me which puts me in even a worse predicament. Its really hard to not have any kind of treatment right now. Because of my health, it makes me get sicker and sicker and sicker. For me to get any kind of help right now, would mean, everything is so screwed up.with my help inside and if I can find out from the hospital of what’s going on. I will be so much happier. If they can tell me what exactly is going on. I was just at the hospital last week having another EKG and my spleen, liver and kidneys diagnosis. So we will find out in the next couple of weeks. I’m hoping.

Don – Was this a reaction from your medication?

Grace – Its hard to take. Number one, it’s hard to take.  It’s hard to take medication. I don’t like pills. I just despise pills. I watched my sister die from taking pills. So I don’t like pills. Even though I know, they are good for me. I don’t like them. But I do what I can. I take my meds. My HIV meds. I don’t know what else I can do until they tell me that I can have Hep C (treatment) I’m sorry.

Don – When you wake up in the morning, how many pills do you have to take during the day?

Grace – Right now, four…which is everyday for the rest of my life. I just got off some other pills because of my lungs are going through a really hard time. My spleen is weak. It just sucks sometimes.

Don – Do you get support from friends and family to help to through the day?

Grace – I have great friends, really good friends. I do! I don’t have family. They’re all passed on. But I have really good friends, good help. If I go to Night Shift, my nurse comes to me. I have friends like him. If I didn’t have friends like them, I would be lost completely.

Stephen – Tell us about an everyday day?

Grace – Everyday is different for me.

Stephen – So you dont have any routines?

Grace – I used to have routines when I was healthy. I used to be able to get up and go. Go to coffee. Go to breakfast. Go to lunch. But just to even walk some days, is too much. So my daily thing is going from my home to the library and getting on Facebook.

Stephen – Pretty much mine too!

Grace – Facebook is my number one. I have friends and World out there. I have my family in Africa. I have kids and I have friends all over. My daughter, my children, grandchildren. I’m blessed in that way. I’m grateful to Facebook.

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

Grace – Oh My God! No!! No!!!! I don’t. If you give money every month, fill my fridge. I was blessed this last winter..actually filled my fridge and filled my cupboards. I was like Woah!!! I never had my fridge full…or my cupboards. When you get food from the food bank, it lasts you two days if you’re lucky. What I have to do to eat..is that I make rice and mushroom soup. That’s my biggest thing.

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

Grace – Depressing. It gets depressing. Actually I see the guy who gave it to me quite a bit. And him and I are still very close friends. I have to be honest ..I feel really sad because he is so ..he is so skinny. Bones, so sick looking. Oh my gosh. I feel for him. Even though he went through the treatment, he’s now…I don’t know what happened to him but he’s skin and bones. Oh! I feel like I don’t want to be like him. I’m scared I am going to look like that. I don’t want to. That’s one of my fears.

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

Grace – Can I have a shot? Can I have just one shot for the rest of my life? That would be it.

Stephen – Just like One Bam cure?!

Grace – Yeah! I don’t want pills. I don’t want all that. I don’t want to have to go in for shots every week or every month. Could I please just have one? And be over with it.  That would be the biggest thing. Dammit..get people healthy.

Stephen – Do you have any final thoughts on Hep C? Any words of Advice for those who also might be struggling with Hepatitis C?

Grace – Get treated right away! Take your medication if you have to have meds. Do your best to stay healthy. Stay in touch with good people. Healthy people. Do your best to stay and keep food in your body. I have to thank the Lord because that’s who I go to…that’s my savior. My friends and neighbours, nice people like that are also everything to me. If I didn’t have all them, I would have nothing. Life sucks somedays. And I’m really getting tired of being tired. I just want a better life. I want to get healthy.

Stephen – Thanks Grace! You are a wonderful woman.

Grace – Thank You!

Stephen – You just heard a lot from Grace. As you can see, she is a very strong woman and has been through a lot and I think she has a lot of insight for…I especially like her advice st the end there. Thanks for doing this Grace!!!

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