Chronic illness

Still smiling through pulmonary hypertension

Despite having lupus and pulmonary hypertension, Dwaine Kuhar is still moving, smiling, loving life, and making long term plans. She encourages others to do the same

It is just plain good manners to introduce yourself to people you are meeting for the first time. My name is Dwaine Kuhar. I am 77 years old and the mother of five children and a grandmother. Getting us all together at one time would create a sizable carbon footprint. The one common denominator we share is being a beneficiary of the generosity of Caring Voice Coalition.

My life was so busy I didn’t pay attention to the subtleties that were taking place in my body. When I was 35 years old, my hair started to thin and became more difficult to manage. Out of desperation and frustration, I succumbed to purchasing a wig—problem solved!

At 45 years of age I began to have occasional outbreaks of hives. Since it didn’t appear to be the result of food allergies or the environment, the logical solution was to try to control the outbreaks with prescribed doses of steroids. In the beginning, the outbreaks occurred approximately 4–5 times per year for several years. Most of the time I didn’t feel sick and decided to become more vigilant about my overall health.

I became more proactive and decided to eat healthier, exercise regularly, get proper rest and maintain a positive attitude in my approach to life.

What happened next was the game changer. In my 50’s I developed pneumonia. About three weeks later, I was up and about. I returned to work and realized my energy level had diminished significantly. Shortly after this episode was when I discovered a red rash that appeared on my face. This rash is known as the Lupus mask. I didn’t allow this condition to get the better of me. With the help of a concerned and committed doctor, I was able to maintain a feeling of reasonably good health. My mantra became “keep moving”. This is what I did until 2 ½ years ago.

“Take the time to look into the mirror at yourself. Smile at yourself, you may even laugh at yourself.”

At that time, I was exhausted and went to the doctor. She took one look at me and within a matter of five minutes I was in an ambulance and on my way to the hospital, where I remained for three days. I experienced my second bout of pneumonia. After my release from the hospital, my doctor recommended that I see a pulmonologist. At that time I was still breathing on my own, but I was experiencing shortness of breath. Within a few months the doctor put me on oxygen around the clock, 24 hours a day. I started getting more and more tired, until I couldn’t do anything. I was just lying around. I didn’t have an appetite and my bones and joints hurt. My quality of life was almost nonexistent.

Pulmonary Hypertension

High blood pressure in the lungs is called pulmonary hypertension (PH). PH is a chronic and life-changing disease that can lead to right heart failure if left untreated.

PH patients experience symptoms such as shortness of breath, dizziness and fatigue, and the severity of symptoms usually correlates with the progression of the disease.

While there is currently no cure for PH, different treatment options are available to help you manage your disease and feel better day-to-day depending on your type of PH.

I took my first dose of PH medication in January 2015. At first I didn’t see any significant changes, but, about four months after I began taking the PH medication I began to notice some positive results. I’m up and walking around again. I don’t know where I would be if I didn’t have the PH medication. I went from being vegetable-like last October, to being able to make dinner for my family, do some light laundry, and occasionally baking cupcakes. Now, when I do these things, I’m up for about 10 minutes and then I need to sit for a while. My quality of life and my breathing has improved. I am still on oxygen but that’s okay.

I have found several things that are very good for my condition, such as singing. I sing my heart out. I sing the old hymns; I take deep breaths and then blow out all the air I can on the amen. And all of that helps so much.

One of the other things I’ve found helpful is to stand and hold onto a chair and play some music and start tapping my toes and move my hips. Just moving a little bit works. It absolutely works. It brings my energy level up and my mind is more alert. I feel like doing things and I want to interact more with people. Two of my favorite songs are “Smile” and “I’ll be seeing you.” They are two of the most beautiful songs and motivators because they offer hope and vision.

I can’t say I walk around singing and smiling all day long; I have my moments of sadness. That’s okay. I just work through it. We have to have a little bit of sadness in order to realize how great it is to be happy. If I sit and frown all the time no one is going to want to bother with me. Smile, it doesn’t hurt. Just be positive. And above all, start loving people. What you do really, truly matters.

That’s just the way I am. I take my PH medication, I sing, I exercise with lightweight dumbbells, and I’m up to walking a quarter way around the block and back. I gained 50 pounds when they put me on steroids and I’m still trying to lose it. It’s not vanity, it’s the fact that the weight affects my health. It makes my joints hurt and I can’t breathe as well, so I’ve changed my diet. I’m eating more organic foods, fish, chicken, fresh fruits, vegetables, and less salt and sugar. I absolutely must set goals for myself. I never let a lot of distance get between myself and any problems from my condition.

My inspiration comes from getting past that personal pronoun and avoiding self-indulgence. I have a long green lifeline, my oxygen line, and it gives me 75 feet to walk around the house. I still want to be able to do things. I still want to be able to contribute to my family. I live with my daughter; she’s a wonderful person.

I love to see a child’s reaction when they look in the mirror. They laugh and giggle at themselves. Take time to look into the mirror at yourself. Smile at yourself, maybe even laugh at yourself. That tickle inside doesn’t go away quickly, it’s like an itch. You’ve got to keep it going. There are some days that it takes me a little bit longer to get out of bed and get going, and I’m probably never going to be oxygen independent; however, I’m never going to stop fully living each moment that has been given to me.

I don’t care if I have a few aches and pains here and there. They remind me that I’m still alive. I want to keep going. That’s the one area of my life where I’m selfish. I want to know what my grandchildren are accomplishing. I want to be able to walk, even if it’s just 10 minutes at a clip.

Modern medicine provides so many opportunities. There are so many places you can go for help. Call upon your loved ones and let them do the things that they want to do for you. Don’t be shy about telling people how you feel, but don’t drag them down into the doldrums. Tell them how much it means to you to just have them sit and listen for a little bit or to have a nice conversation. It’s okay to be honest and say how you’re feeling, but then get past it and always know that you’re not alone.

Remember to smile, love, make plans and keep moving. I am already making plans for spring. Long term plans have a way of keeping my focus on the future. Remember, you’ll find that life can be worthwhile if you just smile. Look forward to the future and keep making plans. Yes! I’m a blooming optimist. It’s just the way I am.

Recent articles