Darlene Monday - phaware® interview 264

Jul 16, 2019

Patient Darlene Monday discusses how she came to terms with her pulmonary hypertension diagnosis, her fear of dying and what keeps her going. 

My name is Darlene Monday, and I am a pulmonary hypertension patient.

About two years ago, I started getting real weak, short of breath, not able to do anything, and I thought, "Well, you know, I'm just getting old." Then it got to the point that I'm like, "I'm not just getting old, something's wrong," because I would lay down at night in relaxation and just not be able to breathe.

Years ago, I was told that I had asthma. I never heard myself wheezing or anything. Then the weakness and the brain fog is what really scared me, because I would be walking into a room and I'm like, “I’m just lost. My brain was just lost.” I know you go into a room and you forget something, what you go in there for, but this was different.

When I talked to my doctor about it and I said, "I'm really short of breath and I think I'm thinking I'm having a nervous breakdown.” Told her about the brain fog. I didn't know what it was called at that time. I just said, "I'm brain dead. I'm going brain dead."

Several months went by. I'd go to the doctor and I'm was just really tired and I would have the chest pain, shortness of breath, the hard heartbeat where it just felt like it would just come out of your chest. I have a heart condition that everybody has AFib and I've been seeing a cardiologist since 2012. So, when I'd see the cardiologist, he'd say, "Well, you know, I really don't think it's your heart," but he checked me out and he'd say, "You're fine. Just go on home."

Finally, at the time, my job was driving a big articulating dump truck, a forty-ton truck. By the time I would climb up the stairs to get into it, I was severely out of breath and the brain fog was coming more and more often. I thought, “I'm going to run over somebody and kill them in this big truck, or I'm going to run over to the side of a mountain and kill myself,” you know? I thought, "Something's got to give."

I went back to my primary care doctor. At that time, I was working three jobs, and she said "Well, Darlene, you're working three jobs. You're not going to feel good. Your body's not built to work three jobs. You've got to slow down. How can you get rest if you're working?" I gave up one of the jobs, and then I was still just getting worse. I’d take a shower, I'm tired, and I'm like, “this is weird,” you know?

Then, I went to the heart doctor and he said, "Okay, we're going to do a right heart catheterization.” We do a heart catheterization in January and he said, "Well, you've got pulmonary hypertension, but you've got to get your sleep apnea under control." He said, "I've never had a patient to snore during a heart cath." He sent me to my pulmonologist, and I thank God he sent me to who he did, because that pulmonologist was a PH accredited doctor. He said, "Well we’ve got to do a sleep study." Not a lot was said about PH at that time to me. They were more concerned with the sleep apnea.

I [got treated] for the sleep apnea, CPAP. Then, three months later, I got progressively worse. My pulmonary doctor said, "Okay, wait, wait." Because I'm crying at that point. I said, "I am just so tired of being tired." He said, "Well, it's not the sleep apnea that's causing it." He said, I had idiopathic pulmonary hypertension. Well, the next day I go to my cardiologist for the follow-up of my right heart catheterization, and he was like, "You've got this horrible disease. It cannot be cured. The medicine's very expensive. You need to go ahead and see a lawyer, and get your estate in order." He said, "You need to make out whether or not you want a do not resuscitate order." Just painted this horrible picture.

The goal at that point was to make it through the first year. Of course, I'm bawling at that point. I'm like, "He's telling me I'm dying." He said, "Then you're going to go through the five stages of grief." He said, "You need to let your body feel that." I'm like, I can't believe he's telling me this.

At first, the day before, when I went to my pulmonologist, I was like, "Oh, now I was relieved to finally get a diagnosis as to what was wrong with me and that I wasn't going crazy, that I wasn't having a nervous breakdown. But then after going to the cardiologist, I was thought, "How can I tell my kids and grandkids goodbye?" I couldn't face that.

A few months went by. For three months I cried. I'm like, "You know I can't tell them goodbye. I'm not ready to tell him goodbye." I'd planned on retirement and traveling. I'm single, so I've always been very independent and too prideful to ask for help. I couldn’t believe this. I stayed in denial for a while before I could tell anyone what was wrong. I could tell them, but I thought, "Well they don't know what it is, so it's no big deal, you know?"

I finally got a grip on things. I'm like, "Okay." I'm like, "I'm okay. Whatever it is, God will take care of it." Through a lot of prayer, a lot of prayer, I came to accept what I’ve got. Whether I've got one year, whether I've got five. I'm seeing people that's got the same thing I've got that's lived for 10, 15, 20 years.

Now, it's been over a year, and I'm still alive, and I'm not near as sick as what was portrayed for me to be sick. I feel like I am still progressing. That's okay. We'll still find the medicine that's going to suit me. The positive things had been because I am disabled now, and I've always had to work for band camps and concerts, and now I get to see my grandkids more and be more active in their lives. That's what keeps me going. And the fact that I really truly believe that their prayers are keeping me up. I mean, there's so many prayers that'd been answered, that I get medicine, that I got money when I needed it. You really have to believe in a higher power, whatever your religion may be.

My name is Darlene Monday and I am aware that I am rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me