OUR JOURNEYS

Patient story

Denise Wathen

"...and I was never tired."

Preface

Growing up in the central part of the United States you never really know why you want to leave your city except to go someplace where there is notoriety with living in that city. Knowing little about how your life in the place you are now will someday have an enormous impact on others.

Chapter 1 – Childhood

When you are a kid the only thing you hope for is another wonderful day tomorrow, a day of sun, fun, friends and laughter.

Thoughts of tomorrow eluded me when I was younger. I could not think past the moment. RIGHT NOW!!! Is the way I wanted everything. If it was not right now then it was hopeless.

I spent my childhood with my grandparents mostly. Or rather, I should say I spent my childhood years with my two best friends, my youngest brother, Marcus, and my cousin, Monique. The “Three Amigos,” not Musketeers. We were too silly.

When you are a child winter seems to fly by, I think we wish it away, because you spend all your time planning for summer. Once summer arrives all you can think about is playing with your friends from dawn until dusk. Ripping and running and playing and oh the smell of fresh cut grass.

There was this mall (grassy area between the houses about a block long) that we played in out in front of my grandparents house. Granny would tell us to go play in the morning, while she worked her in garden, and she would have to call us in for lunch. But doing all that playing and running all day long, I was never tired.

I remember one time when my brother and his friends begged me to come and play baseball with them. I hesitated, but being a child of eleven I could not resist. I’m sure granny would never have approved of my playing baseball with the boys, but I had fun. I had fun running, laughing and dodging baseballs because I could not catch them, and I was never tired. I could have played the rest of the summer and I would never have been tired.

Chapter 2 – Teenager

Life seems to get sweeter with age. You don’t think about your own mortality you think you will live forever. And if you don’t live forever you never think about dying. Twenty-five is OLD. And you hope you never reach that age. And anything over thirty has graying hair, coffee stained teeth and tries to look younger than what they are but as a teenager you see right through all of that to much make-up, self important, cocky and glad I’m not a teenager again person.

Yeah, we got it old people and we know it! Life. We got the cat by the tail and don’t even care and in some of our cases we don’t even that is what we are holding is the cat. But we eat our teenage years away by wishing we were older. Wishing we were that self important, cocky and glad I’m not a teenager again person. Old people always say don’t wish your life away. Enjoy your years they will be gone sooner than you think, and then you’ll be tired. If I had known then what I know now, I would have played harder, run farther, walked more, and laughed harder than all of my friends. I would have enjoyed every moment if I knew what was to come. But living in retrospect is like hurrying your life along when you are a teenager – it doesn’t work.

I remember as a teenager I walked everywhere! I walked to school, I walked to the store, I walked to my friends’ houses, I walked to the movies, and I walked to the mall. I did it because I did not have a car and didn’t know how to drive, but also because the sun felt so good on my face and arms and legs. I would have walked more if I had more places to go but as a teenager there aren’t that many places you can go and not get into trouble.

My older brother Devin and I would walk to the shopping mall (Lafayette Square). The most fun time I would have was when we were together. Devin would get this notion to do something! So he would say, “Com’on Neis let’s go to the mall,” or “Com’on Neis let’s go see a movie.” And we would walk, we would walk fast! Fast walking was the only way Devin knew how to travel. He was tall, skinny as a pencil, and moved like the wind. Even though I was young and over weight I did my part in keeping up with him. But when we would go to the shopping mall I got to play princess for a day. He would select outfits and I would try them on. Sometimes he would select coats and hats for me to try on. It was so fun, and I was never tired.

It is amazing how slow the teenage era seems to pass. You graduate from high school and life begins to pick up speed. Before you realize it you are 25.

Chapter 3 – Young Adult

When I graduated from high school I first went into college while I did some volunteer work downtown at the Indianapolis City Center. My days of college were so hectic. I would get up early in the morning to take my mother to work then bring the car back home for my dad to go to work then I would walk around the corner to take the bus to go to the university. When I got home I would get the car from my dad and go get mom. Once I got home I could study for a several hours before going and picking up my youngest brother from work downtown and taking him home. I would come in study some more before going to bed and starting my day all over again, and I was never tired.

On the weekends I would run around with some of my college friends, but I studied for the most part. Or I would travel someplace with the family, and I was never tired.

During my young adult years I debated with myself of who I was, who I wanted to be and what I wanted to do. Eventually, I spent a year going to cosmetology school which meant long days on my feet, a tired and achy body and eating the wrong kinds of food not knowing what health issues lay around the corner for me. Once finished with cosmetology school I was still debating how I wanted my personal success to be determined. I decided I would go to nursing school and become a pediatric nurse, like my grandmother had been.

I once read that our elders are to be cherished. My mother suggested to me that I go into Hospice training to better understand the medical and nursing training. That was something I started out doing begrudgingly. It later became something I was proud of doing and it taught me to look at my own fears and evaluate my own life. This started me on a 10 year course of service to others all the while not realizing what life was preparing me for. But day in and day out I pushed on never being tired but getting slower and noticing more physical distresses. By my mid-thirties life dealt me a blow one that took me by surprise and I would be slow recovering from it emotionally.

Chapter 4 – Adult

The move to Memphis, TN was so exciting! I finally got to move to that other place. Someplace that was notable. Not knowing what was waiting for me there was exciting. Not knowing anyone was scary. Finding a job became difficult. Marcus kept telling me it’s ok. Then life got challenging, I was diagnosed with hypertension. Going up the stairs to our 3rd floor apartment was somewhat tiring. I dismissed it as being over weight. So we would exercise, we walked, it wasn’t so bad. But I knew that my medical expenses and I not having a solid job could only increase a difficult financial situation into something bad. So I moved back to my home state. Angry, resentful and aloof I began looking for someplace to mentally take me away from Indianapolis. I got a job at FEDEX. I loved it because of the association with Memphis, TN it made me feel like I was not at home once inside the building. Indy could disappear and with me working in the international airway bill department I never had to see anything that had an Indiana or United States, for that matter, zip code.

Going to work became exciting I would park my car in the lot then take the bus to the terminal and then… I would time myself to see how long it took me to walk from the security station to my desk out in the east building. When I would walk across the tarmac it would take me 5 minutes. The east building is a good ½ mile from the security station. But walking through the building to go to the east building is about 3/4 mile, and that would take me 10 minutes. Oh every night was a challenge, to see if I could walk it faster and faster, and I never got tired. I would work nights and be home in the mornings. I only lived 10 minutes away, which was great! But the living conditions I was in were not so great at that time. I did not know but my health was failing.

January 2002, I woke up coughing, coughing, and coughing. Oh, the coughing hurt my chest. But I was ok, no sniffles. Later in the week the coughing had progressed to coughing spasms. I would get to coughing and could not stop and I would get so upset and began to cry but could not stop coughing. I would get scared because the coughing could not stop. Finally, I went to the doctor and she said I had pneumonia. I was off work for two weeks before I was physically strong enough to return to work. I tried to walk the tarmac but I was too tired! So I rode the shuttle instead and told myself I needed more time to get stronger. A month later I tried to walk the distance inside the building and had to go down to catch the shuttle because I was too tired. Just a little more time to get better is all it will take. In the meantime I moved to a second floor apartment. This move required me walking my dog every time she needed to go out and I found that the cold weather made me short of breath and I would get tired.

I kept getting sicker and my doctor at that time had no answers for me except that I needed to lose weight. I changed doctors. And the new doctor and I began a regimen of specialist. He would send me to see a specialist whenever he could not diagnosis a symptom. By January 2004 I was living in another location and still having to walk my dog I noticed that I could not walk her as far because I got tired. There was enormous pressure in my chest and I could not breathe and I was forcing myself to walk the distance with her because she needed to walk, and I was so tired and out of breath. By June 2004 I was diagnosed with limited scleroderma and secondary pulmonary hypertension.

A diagnosis! Oh, I am relieved. Now when can I get better and get back to enjoying the sun and walking and my life? Never. Huh?

"You won’t be even a shadow of your old self. You’ll have good days and bad days. And days where you may not want to get out of bed." But I keep pushing because I remember, “I was never tired.” I couldn’t be. I got so much I want to do. I don’t have the energy to do it all now. And now you tell me I don’t have much time to do it all in either? Where is all my time? When I was a teenager I had all the time in the world. Where did it go? I’m still young.

August 2004 my current Pulmonologist tells me that the medication he has had me on has stopped working and his only solution was a heart lung transplant. I sat in the parking lot of his offices and I cried, I called my mother and I cried, I called work and told them I would not be back in that day. And I went home and cried some more. But I could not cry as hard as I wanted to because I was short of breath and crying made me tired. When the shock and the feelings of terror wore off I began to slowly process my doctor visit. I recall him saying that he did not want to go that extreme yet and he was going to refer me to a specialist in Chicago, IL. And this group of doctors up at the University of Chicago would call me and set up a time to meet.

Winter 2004 was bad. The winter was so bad that I stopped hanging with friends. Once in the house and upstairs I rarely if ever went back downstairs or out of the house. It was so bad that I took my dog to go and stay with my dad for the winter. I love my dog and this was a very difficult thing to do because now not only was I tired, but I was alone. I was alone in my house in my misery with my disease. I would watch TV until late night then cry and wonder, “Why me?” This was my ritual for the whole winter besides the days I went to work. My mother would pick up my mail from the mailbox up the road, less than 500 feet from my house, on the weekends. I was too tired during the week to stop and get it. All I could think about was getting home so I could rest.

In March 2005 I was on my way to Chicago. I was ready for some medications that worked and I prayed they would not tell me the same bad news my doctor down in Indianapolis told me, heart lung transplant. I did not want to hear those words again. I had educated myself a bit on the condition and this new doctor I was going up to see. So I was hopeful because his theory was not to go extreme but to try some stronger medication. I was not ready to be cut on anytime soon. After being looked over by the doctor and doing the right heart catheterization the following day I was given my diagnosis and prognosis. Yes, I do have pulmonary hypertension and I am “very, very, very sick.” The fact that I had come thus far given my condition was promising. But I needed to take it easy until I got started on the new medication. The new medication, Flolan, was to be administered via a heart catheter. I was to return to the hospital in two weeks to get the catheter implant. I was a nervous wreck! Oh woe-is-me. All of this new stuff plus I was in the process of moving again! My condition warranted this move. I needed to move to someplace with no stairs. The catheter implant went well, nerve wrecking and uncomfortable but went very well. I’ve had no problems. And the medication works like a dream. I’m very excited. There have been times when I have to be reminded to slow down, or I’ll get tired. But after two years of being tired and not knowing why or how to help myself I reluctantly slow down, because I don’t ever want it to be like that again.

October 2005 a few short months after returning home from my doctor visit up north. I returned to Chicago to a conference to learn more about pulmonary hypertension. While I was there I learned that I could start a support group. The first thing I thought about was letting doctors and nurses know about this disease at my local children’s hospital. My preparation to begin a group started shortly there after. I started the support group January 2006. It helped me realize 2 things. I’m wasting my time if I’m sitting around feeling sorry for myself and I don’t want anyone to lose 2 years of their life wondering what is wrong. Pulmonary hypertension is a silent disease just like its sister disease hypertension. The difference is the only way to diagnose pulmonary hypertension is through a right heart catheterization and a process of elimination from other conditions.

Now I reach for the Kleenex box, for this is not the end of my story but the beginning of a new chapter in my life. A chapter I may not be able to continue personally but I hope to teach everyone I know about this disease and to be remembered as never tiring.

With the sun on my face, the wind in my hair, a song on my lips and you on my mind, I will never tire.

By A. Denise Wathen
Indianapolis Support Group Leader

 

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