This is a transcript from a video interview with my 39-year-old sister Karlene (Kaycie) recorded on Friday 3rd June 2016. Karlene is the mother of three teenagers and has end-stage Chronic Obstructive Pulmonary Disease (COPD).
Let’s start with an introduction.
Hello. My name is Karlene, and my nickname is Kaycie. I have three children. Antonio, Monica and Lorenzo. They’re all teenagers. And I have been suffering COPD for nearly two years. And I’m on Stage 4 (final stage). And I’ve been in hospital for a long time. Since probably I got diagnosed…just after I got diagnosed. And it’s torture. And I don’t have that long to go now. But, I have done really well.
So, what is COPD?
I’ve got emphysema and asthma. You can have bronchial or emphysema (types of COPD). But I have asthma and emphysema, and I got it through drug use in my earlier days. And also smoking the Kronics (synthetic cannabis). That was legal at the time. And smoking cigarettes.
COPD is “Chronic Obstructive Pulmonary Disease”.
Disease…yeah, that’s it.
What are the symptoms of COPD?
Shortness of breath. That’s the main one. Coughing a lot. A LOT!! When I first got it I was coughing and coughing and coughing. And tiredness. Feel very weak. You can’t walk far. Can’t do much at all. But as it progresses, you’re basically bedridden. If you do get up, you’re gonna have an (asthma) attack, or just get very wheezy.
The doctor’s got me on morphine and a whole lot of other drugs to make me comfy, but there’s no cure. My lungs are stuffed!
How did you first know that something was wrong?
From the coughing. I kept coughing and…I googled it myself. But there was just something wrong, ‘cause I was always coughing. Yeah, I just had a gut feeling. And I was having a lot of asthma attacks. And at night time I’d panic, ‘cause I didn’t know what was going on. I was getting no air and the ambulance was called.
First they said I was just having a panic attack. But then I had a chest x-ray and a CT scan. And it showed that I had emphysema and asthma and my right lung is worse than my left.
What professional support have you had to cope with COPD?
I had none when I first found out. Well, I had…my friend Brian, but he’s not a nurse and it got too much for him, ‘cause I couldn’t do anything. Because now it hurts my bones and my kneecaps. I can’t bend down properly without excruciating pain. It hurts in the joints.
I also get a lot of chest pain…around my heart…which can be really scary. And my ankles swell up.
And I’m always tired. You always feel tired. No matter what you’re doing, you’re tired. And the saddest thing is you miss out on going on outings with your family. You just don’t get to go very far.
What other activities have you done to help you cope with COPD?
I cut heaps of pictures out of magazines. I’ve got a drawer full. I’ve done some collages, and I’m going to do another one. And I put pictures in frames. I used to draw, but I shake too much. I shake even cutting pictures out. I make cards, but mostly with stickers now. I don’t draw (anymore).
I had my own cartoon characters called the “Big-Head Productions”. I used to draw big heads on little bodies, but I haven’t done that for a long time.
I lost most of my friends after being in hospital for so long. They just gave up coming in to see me.
I understand you have a Facebook support page.
Yep, I do. I also have about…130 members. And that’s to let them know how I’m getting on, or just posting happy things, or things about COPD that could help them.
I try and inspire other people to keep going, keep fighting it ‘cause it’s really easy to not fight it. You could just stop…like if you have an (asthma) attack you could just not do anything about it and die. So I always let them know how I cope with that. And they get really inspired by it, and they do it themselves. That’s what the page is for.
I get lots of good comments on how I’ve inspired the world. And I make people happy that are really sick.
What’s your Facebook page called?
“Kaycies Journey with Emphysema/Asthma”.
What’s your prognosis from here in?
Well, I saw the doctor, not yesterday, the day before. I said to him, “I know I don’t have long”, and he just nodded his head. He didn’t say anything to me about it. And he doubled my morphine. And kept the rest of the medication I’m on…he kept that the same. But he didn’t want to put me on any more pills. He just wanted to double the morphine.
It can help with breathing, a little bit. And when that stops working, they’ll (increase the morphine) again, then after that I get sedated. Once they can’t give me anymore morphine, I’ll be sedated. That’s where I’m at now.
Is there anything else you’d like to add, before we finish up?
Yeah. Don’t do the stupid things I did. Don’t do drugs. Don’t smoke. Never smoke that herbal stuff, ‘cause I swear that’s what triggered it off.
And I have three children, so three children that I’m not gonna get to see grow up. And my daughter’s father has already died, so she won’t have any parents. But she’s well looked after. And my kids are really happy, even though I’m sick. I try not to dwell (my illness) onto them. And they’re excellent. And I think they’ll be okay…when I die. We have a good family.
There’s lots of side effects from COPD, and it can just drag on and on. I’m not on oxygen because I’m young (39). If I was…50 or something, I would be on oxygen. My oxygen levels are fine. That’s the good news.
Do you wanna say anything just to sign off?
Thank you for watching, and enjoy life, and appreciate it, ‘cause anything bad could happen at any moment. So, yeah, KEEP SMILING!! Bye Bye!!
Karlene Chapman (Kaycie) was interviewed by Richard Mather-Fry on Friday 3rd June 2016 on location at St Winifred’s Rest Home & Hospital, Christchurch, New Zealand.
Thanks Heaps for Reading!!
KEEP SMILING!!
Thank you @jennsky, I forgot to add an update at the end. Karlene is still going. The doctor had a talk with us, and she will likely be sedated soon. We are hoping she can hold out until after her 40th birthday in mid September. We have been advised that if she is still alive at christmas time, she will likely be in an induced coma.
I am in hospital today, There is no such thing as COPD Chronic Obstructive Pulmonary Disease. Its just a basket they throw emphysema, chronic bronchitis, respiratory disorders, etc into. I just had another full CT scan on my lungs Monday. This story doesn't make sense to me. Whats with the morphine, not on oxygen, which has no effect on age. COPD gets you steroids, the good ones, that athletes cannot have, not downers, that would be counter productive. You do not go into coma, you die because your lungs fail at getting enough oxygen to keep your heart pumping. Thats the lungs job, exchange of blood gases. Maybe your friend has something else.
https://steemit.com/life/@jennsky/these-young-nurses-just-can-t-figure-it-out
The New Zealand government has been making big funding cuts to the New Zealand health budget. One of the results is that they won't provide oxygen to any long term patients under age 50, for any more than 13 weeks. Once the patient reaches Stage 4 (of any illness), they are no longer entitled to any oxygen at all. The government provides morphine as a supplement.
Karlene is given Prednisone for 2-3 weeks every 3 months, alongside the morphine. She also has an inhaler, and a nebulizer.
The morphine is already at the maximum dose the government will allow. Therefore, the doctors will INDUCE the coma, so Karlene doesn't suffer through the final parts of her COPD. This is based on Karlene's own request to be kept comfortable at the end.
If you have access to Facebook, Karlene can be contacted on her support page:
https://www.facebook.com/groups/543682275771871
Karlene may be able to explain it a bit better than I can. To me, some of the Ministry of Health's policies don't seem to make sense.
I hope this answers some of your questions.
Its sad. People die from lack of funding. They can't afford the treatment they need. Its sad.
Enjoy What time You've got
Peace Be With You
Thank you very much.
Well that was an interesting story to read. I am left wondering, June 3, and now August 27. How about an update.
I hear people use Acetone to dissolve the synthetic chemicals in and then soak the herb in that and let the acetone evaporate. Maybe this produces a residue or the acetone doesn't fully evaporate?
I'm not sure how synthetic cannabis works, or its implications, sorry. It's illegal in New Zealand now, anyway.