Lynette Chambers - phaware® interview 494

Lynette Chambers, a 9-year PAH (pulmonary arterial hypertension) patient, has also been diagnosed with pulmonary fibrosis (PF). She shares her journey, from struggling with daily activities to being admitted to the hospital with severely low oxygen levels. Lynette discusses the emotional challenges of facing a terminal illness and the difficulty of balancing work and family time. Despite the hard reality, Lynette emphasizes the importance of gratitude, making others feel better, and being the best version of oneself. She finds strength in her family, especially her grandchildren, and strives to create lasting memories and make a positive impact on those around her.

My name is Lynette Chambers. I’ve been diagnosed for nine years now. I was in the hospital with congestive heart failure and they did a whole bunch of tests and decided that I had PAH. So, I’ve been going through a journey with congestive heart failure and PAH. Now, nine years later, I’ve been diagnosed with pulmonary fibrosis.
 
I was at work, I was running a swimming pool company. I was running around getting stock and dealing with clients and stuff, and I was finding that I was really short of breath. After I was done talking to a person, it was like, I can’t get a full breath. For me, it was really scary because I thought there’s something wrong that I can’t breathe. Then, I went home, I could breathe fine. I drove home. Then, I got out of the car and went to walk up to the house. I couldn’t walk all the way up our sidewalk, which is like maybe 10 feet from the car to the house. I would have to stop, take a breath, go up our four stairs, stop, take a breath, and then go in the house and sit on the couch and try and recuperate.
 
As the days went on, it just got harder and harder and became a lot more evident that I can’t lift stock, I can’t run from one end of the store to the other. I would recuperate on the drive home. Once I got there, I couldn’t make it into the house. It wasn’t a fluid motion. I went, okay, there’s something really wrong. I’ve always been active. I’d always taken my kids camping, done all kinds of things, water-skiing, downhill skiing. I couldn’t do any of that. I was just so fatigued the whole time. So, I went, no, there’s something going on here. 
 
I had a shower and I couldn’t get out of the shower. I had to sit on the edge of the tub. Then I got to where I felt a little bit better and I decided, no, I better go in. I went into the hospital. My oxygen level was at 48% and my heart rate was 174 over 94. So they went, “Okay, you’re admitted and that’s where you’re staying.” I was admitted into St. Boniface Hospital for two and a half weeks, while they tried to figure out what was going on. That’s when they did all the tests. At first they said, “No, it’s just congestive heart failure.” Then, they went, “But your oxygen went to 48. So that tells us there’s something in the lungs.” So they started doing more tests, like echocardiogram, all of that. Then, they went, “Okay, this definitely PH,” and that’s where it stayed. I’ve had my cardiologist put me in touch with another doctor who deals with my PAH, and then I have a cardiologist that deals with my heart. Then, I have a respirologist who now diagnosed me with PF after doing a CAT scan. 
 
I was in the hospital in and out from December to March five times with what they thought was pneumonia. My respirologist went, “Nobody gets pneumonia five times in a row.” I would go from one med to another. She said, “No, I want a CAT scan of the heart and lungs today.” I got a CAT scan and she phoned me at work and said, “Are you sitting down?” I said, “No, but I’ll take you and I to a boardroom.” So we went to the boardroom and she said, “You have PF.” I said, “Okay, what’s PF?” She said, “It’s pulmonary fibrosis, which is a scarring of the lung tissue, making it harder to breathe and suffocating the lung on its way up.” I said, “Okay, what are we doing?” She said, “Well, I’m not sure yet, because it is terminal. So whatever we do, I want you to understand you’re not going to get better.” I said, “Okay, well, we knew that with PAH.” She said, “No, this one’s different and you’re just going to find it harder and harder to breathe.” So we’re now in the testing process of finding out what meds will work for both or where we’re going to go from here, what tomorrow will look like.
 
When I first was diagnosed with PAH, I thought, “Okay, this is it. I’m done.” But then, I started reading and reading and reading. I heard more stories about people lasting 20, 30 years. That was great. But then when I was told I have PF, and I started looking into that and I asked, “What does that look like?” Because when I was first diagnosed with PAH, my doctor said, “You’re going to be dead in two to five years.” It was left at that. There was no empathy, there was nothing. It was more of a, just so you know. 
 
Then, when I got the PF and I started looking, I didn’t find anybody that had had the disease more than seven years. So, then I started in my head going, okay, I have two grandchildren. One turned three and one is six. I’m not going to see them graduate. I’m not going to see them grow up. It’s a reality check and it’s hard, because you want to think, well, I can keep working because I have that energy and I love my job. So you want to keep doing that. But then in the back of your head is how much quality time am I missing with my family by being at work? So it’s a, could I afford to just not work? So there’s this whole piece emotionally where you’re going, what am I missing by doing this? Or what will I miss if I don’t do this? 
 
Amazon and I are best friends and I order everything I can, so my grandchildren have everything. Part of that is because I want them to remember me. I want them to know that Ama loves them, and I may not be there in person, but I will always be there. So, yeah, there’s that emotional thing that you do go through. I think when you’re being given a diagnosis of a terminal illness, there’s always that human component of this is your reality. This is where you are at.
 
I have a husband that I love more than anything. I’m not going to get to grow old with him. We think when we get married that that’s why we marry is we’re going to grow old with our best friend and I won’t. It’s a challenge to get up every morning and know today may be your last day. You try not to think that way, and you try and be positive, because I believe positivity creates everything, but it’s really tough to put yourself back in there.
 
I do believe that we’re all born and made for a reason and you do what you can do. I’ve been very blessed through my life. I’ve been a foster parent of 30 kids since I was 19. I have my own biological children and I’ve adopted children, so I’ve been very, very blessed in the life that I have. But it’s still hard to think that it’s going to end and I can’t do more and be more. For me, I need to be more to everyone and do whatever I can. If I can make somebody smile, I will. If I can help out in any way, shape or form, that’s who I am. This disease makes it harder to know that you’re not going to be there to make those changes. You can’t make a difference the way you’re used to. 
 
I have learned, and I’m very blessed to have learned this. One of the ladies I worked with said to me, we were talking about gratitude, and she said, “Take 15 minutes a day and write down five things that you’re grateful for. Read that at night before you go to bed. The next day you get up, have your day, take your 15 minutes and write down five things you’re grateful for.” Do you know I’ve been doing that for almost eight months? Not once have I written the same thing twice. You look back at that and you go, wow, look at all of this that I’m grateful for. That makes you go through the next step and go to the next day and see what five things you come up with at the end of that day.
 
My family is my strength. I look at my grandchildren. If you watch the innocence in a child, it’s so amazing. I watch my grandchildren and I listen to them. It makes you want to be better. They make you want to do more, because it’s just so incredible how they look at things. People are arguing and fighting outside, and my granddaughter’s picking flowers. I said, “What are you picking flowers for?” She said, “Maybe they’ll be happy.” She wanted to take these two people flowers. She’s six years old. All she sees is two people who need something. That makes you want to be better. That makes you want to do more, realizing that the smallest token is the largest gift that you can give someone.
 
The most important takeaway for all of us in life is be the best that you can be. Be true to you, but be the best that you can be. If you can say to someone who looks like they’re having a hard day, “I really like that blouse. That’s nice.” They smile and they feel better about themselves. It’s a two-second thing. It doesn’t mean anything to you, but it sure does to the person on the receiving end. I think that that’s the biggest thing for me is you need to try and make everybody feel better. It makes you feel better inside, knowing that you’ve made someone smile. You’ve given someone something to take from their day. If it’s part of their gratitude post, great. If not, better luck next time.
 
 My name is Lynette Chambers, and I’m aware that I’m rare.

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