My Clinical Trial Experience

I started a medical trial in November of 2012 for my pulmonary hypertension. My doctor introduced me to the study. He was very interested in me being a part of the study because he wanted to be able to monitor my PH closely. Being that I also have Lupus my doctor wanted to be able to keep a close eye on me. I decided to be involved in the study because I wanted to learn more about PH, and I felt really bad at the time, and I also figured it would be a great way to contribute to the pulmonary hypertension community.

Once I made the decision to be a part of the study, I had to do a few tests to make sure I was a good candidate for the medical study. I had to have blood tests, six minutes walks, and an EKG. If I were selected to be in the study I would be given a pill, either active medication or a placebo pill. I would have to come in monthly and so on to do more blood work, six-minute walks, and EKGs.

I was really excited when I got the call that I had been chosen to be a part of the trial. I don’t like taking medicine, but like I mentioned, I figured I would do my part for PH research. When I first started I was taking 1 pill in the morning, and 1 pill at night. Every few weeks I would get a call and my dose would go up. It was nice coming in and seeing the research coordinators, my doctors, and the respiratory therapist. I was able to build relationships with all of these people. All of the people involved were so wonderful, they made me feel so comfortable, and they were so helpful. I knew they all wanted the best for me.

I have learned so much about pulmonary hypertension through this research study. I have also gotten more involved with the PH community. I continue to educate myself, and ask questions to learn more and more. The study has brought me closer to my team of doctors and nurses. I feel so comfortable with them, and that has made being very open and honest with them very easy. I also know that they are there for me and on my team, and that is a great feeling knowing that they care.

I am still involved in the study, and I will most likely continue on when the study closes, at that time if I am currently on a placebo I will be given the active medicine. If you have any questions about my medical trial please ask. If you are interested in getting involved with a clinical trial, please visit clinicaltrials.gov.

Written by Elisa L.

Fine just the way I am. Living with lupus.

In 2003 I started college in Fort Collins, Colorado, at CSU. I grew up across the Rockies in Grand Junction, which was about 6 hours away. My boyfriend had started classes there the year before and I had fallen in love with the area. We had broken up before the end of 2002, but I still wanted to go that direction to study landscape architecture. 

Being a poor college student, I was attending class and working as much as I could. The second semester there I began to have issues with my hands and wrists. Most days they hurt, but some times my fingers would not bend well. After finally "locking" in place for a few days I decided I needed to go to the doctor. My family doctor was hundreds of miles away, I didn't have insurance- it was pre-ObamaCare. The physician on campus checked me out and decided that I had carpel tunnel that needed surgery right away. I went home, kind of freaked out, and called my mom.  He had given me an anti-inflammatory to get through the semester. My parents and I were confused. I didn't work with computers. I wasn't a "gamer", or a seamstress, mechanic, nor did I have any other profession that was likely to lead to that outcome. So we decided to wait a while to see what happened. 

Within a month I was back in the health office. I was assigned a new doctor, and I was really worried about changing. It ended up being a great thing! This new doctor ran blood work and did an x-ray. When the results were in I was called back in. She told me that I most likely had rheumatoid arthritis and asked me about my family history. I had never been sick and I had no idea, so we called my mom. By the end of that call we were all on the same page, and pretty sure that was the issue. She referred me right away to a rheumatologist for further testing and to seek treatment. 

This was the beginning of my lupus journey! It was  a life changing event. Throughout my young adult life I was independent, strong willed, driven, active. The diagnosis was scary.  I thought everything about me had to change. Lupus has many different symptoms, that vary by each case. Mine had joint pain and swelling, swelling of the pericardium, sun-sensitivity, and skin rashes. Outdoors was my life! I rafted the Grand Canyon after I graduated high school! I played and coached soccer! I played the clarinet. None of these were things I could do BECAUSE of the lupus.  That was 2004.

Throughout the years my lupus has been found to be more than "just" lupus. I have Mixed Connective Tissue Disorder (or Disease). That really means I have SLE (systemic lupus erythematosus)  and all of the other related autoimmune diseases. I share symptoms with Rheumatoid Arthritis, Psoriasis, Scleroderma, and many others. It also means I am likely to respond to their treatments as well. My lupus has "mutated", as I call it, many times. It changes it's target in my body. The joints, skin, and heart have remained constant, but liver involvement comes and goes, the lungs and vascular system become involved, skin reactions have changed, and I have developed excessive scaring in the esophagus. The biggest change in the disease has been the development of Pulmonary Hypertension.

Ten years after diagnosis, and my life HAS changed. But not all for the worse. I have to take care of the lupus. Sunscreen, medication, temperature regulation, and rest. I have tried many drugs. Prednisone, Plaquanil, Benlysta, and Cellcept are the current cocktail. Methotrexate, Cytoxin, Humira, gold pills, a pain medication that quickly taken off the market, vitamins, NSAIDS, and things I can't even begin to remember were used at some point in the treatment. That isn't the change that I am grateful for. 

After grieving for the loss of life (as I knew it, anyway), I embraced the life that lay before me. It was an opportunity to slow down, to develop a new perspective, and to adjust my priorities. I have become more empathetic, take life slower, am grateful for the little wins. But most importantly, I realized health is more than just physical. Total health is so important when living with a chronic illness, I nourish my heart and mind as well. I took time to get well, but then I started taking college classes again. If I had trouble, I would stop the next semester and take time again. With enough time I volunteer to keep my heart busy. Most recently, I have started taking leadership classes; learning advocacy, public speaking, and creating a community program, through Colorado FLTI.  

My diseases have changed me. I can't do what I used to, no rafting, no soccer, no hiking. I can't think as fast as I used to, and I definitely don't have the stamina. But now I have time for the more important things in life, like water gun fights with my nephew, and fairy gardening with my niece. Yeah, I wouldn't change my life for anything in the world.

For more information, visit PHA's lupus and PH resources and the Lupus Foundation of America website.

A Mother's Day Post

For years I struggled to find the right Mother’s Day gift, there’s only so many candles and bubble bath sets one can give to their mom. This year I am doing something quite different; I have invited my mother, who is also my caregiver, to come with me to the Pulmonary Hypertension Association’s 2014 International PH Conference and Scientific Sessions. This is our first conference and we are very excited to be a part of the event.

I wanted my mom to be there for me because she is truly the only person in my life who has seen every part of my journey with pulmonary hypertension. I was 26 when I first started having symptoms and from the beginning my mom took me to every doctor appointment and every test. I was diagnosed with Lupus in August of 2010, and so I figured the symptoms might be related to my Lupus. As I sat there worried and waiting my mom was right by my side. She has always had a way to be a calming presence in my life. Even when I was worn thin and I would snap at her, she stayed strong for me as my biggest supporter. In the moments when I was scared and less than positive, I knew she was the anchor I needed in the storm I was entering.

So far my mom has been by my side at all of the important moments in my life: when I was born, all my milestones, my graduations, and she was there the moment I needed her the most. The moment my life changed forever, a meeting with my Pulmonologist, the moment we found out how serious pulmonary hypertension is. The moment my mother learned that her first daughter was so ill she had a few years to live. I can’t imagine what went through her mind, I do know that at that moment she felt helpless, and that she would in that moment give anything to take it all away.

My mom is the strongest woman I know, and I will ever know. She has shown me how to push through any situation, she has taught me to be the brave young woman I am today. I owe her my life, and not because she brought me into this world, but because she has kept me here. Her love alone keeps me from breaking and her love is the driving force behind all that I do. I love her and I am incredibly thankful to have her as my mom.

I was diagnosed with pulmonary hypertension (PH) in June of 2012, and at this point I am feeling very well, and getting back to being my old self. I recently started to work out, and I am getting stronger everyday. We have chosen to be overly positive, and that has made living with PH easier. I have always been a hopeful person and with my mom by my side as my caregiver I wake up every day knowing that I have a wonderful support system. I found a poem that describes how I feel about my mom, and she has been there for me in so many ways, and even as an adult she has taken care of me, her baby. I feel safe and strong because of her. Happy Mother’s Day Mom!

An Angel (Mother's day Poem)

You're an angel from above.
You are there always for me.
During my darkest hour,
you're there keeping me safe and warm.
I never felt alone because
I have your very special care.
Inside your magic place,
so small yet I fit in comfortably,
so nice and cozy for me.

When I came to the world,
even from pain
tears of joy fell down from your cheeks.
You welcome me with your
sweet embrace
and tiny warm kisses.
It was my first kissed
and first hugged that was the sweetest.

When you heard me crying,
you rocked me gently
in your arms lovingly.
When I'm in pain,
you are crying in misery.
When I was sick,
you never slept instead lay beside me awake
watching me if i ever needed some help.

You're the only one
who understood
my struggled to talk.
Every time I fell down
from my swaggering walked,
you're there to lend me your gentle hands
and keep me on my feet.

You never lost your patience for me,
instead compassion and understanding
for all my mischiefs and wrong deeds.
You always give me your shoulder to lean
on when i needed you most.
I never felt alone
because you are always
there to me as a companion.

And even now,
i am a full grown person
and have a family of my own,
you are still there for me
in case i needed someone to lean on.
You never think less of your children
instead giving them
all your support and attention.

Mama,
you are the angel that keep me
always away from danger.
We can never repay
of what you sacrificed for me,
for us..your children.
Your gift to us never
worth even a million dollars.
You made us of what we are now
and I am very proud of you
and thankful to God that we have you
as a mother.

A mother's gift is priceless,
It's the life we are breathing right now,
we are nothing with out our mothers.
Mothers are the sweetest,
most loving creature that
God have ever created.

On this special day,
I vow to all mothers in the world
who take good care of thier children,
sacrificed everything for the sake of them.
Specially to my very own mother.

I love you mama,
I don't say it always but know in your heart,
you are love deeply and forget you never.
I am just one of the luckiest cause You are my Mother.
Happy Mother's Day.

By Emelita C. Smith

Post written by Elisa L.