Making A Difference

Making A Difference Day is Saturday, October 25th. This nationwide day of community service began 20 years ago by USA Weekend Magazine, in collaboration with Points of Light. It is a day when just about anyone can go out and do something to help someone else! Clean up a park. Volunteer at a homeless shelter. Visit an elderly neighbor. So many options are out there to do something meaningful for another person. Of course, this is something that should be done daily, but at least there is one day people can share how they've helped a fellow human being.

When the the topic of making a difference was brought up for the PH Plus blog, I immediately thought of something entirely different that I could write about. I must start, however, with a very brief summary of my PH journey for those out there who do not know it. I was born with a congenital heart defect, and by the time it was discovered at 9 months old, I had already developed PAH. So this disease has been my entire life, 39 years of it so far! I was always short of breath growing up, had a blue tinge most of the time on my lips, fingers and toes, and napping was my middle name. At school I was not allowed to take gym or play sports, so when my classmates when to gym, I would help the 1st grade teacher. It was then that I figured out I wanted to become a teacher! Fast forward to years later when I received a Bachelors degree in Elementary Education. I eventually started teaching in a preschool classroom, which I totally loved! I thought I'd be doing it for a very long time....until those adorable little kids started giving me way too many of their germs. By my third year, and my third major respiratory illness, my primary doctor told me to quit teaching. It was a heartbreaking thing for her to do, and for me to hear, but I was 24 at the time and never thought of quitting a job. So, all of a sudden, I didn't have a purpose. At least, that is how I felt. What was I going to do now that my dream of teaching was pretty much down the tubes??

Enter a phone call from Accredo, one of the specialty pharmacies that supplies PAH medications and support to patients living with pulmonary hypertension. I wasn't really new with Accredo, having been on Tracleer for a couple years since seeing a PH specialist after quitting my job. But I was newly introduced to the idea of starting a support group in my area. It was really overwhelming to me, to be a leader of a group. And a bit terrifying, if I'm going to be honest! I was not a large crowd, people person. I had mostly been a shy person growing up, and even though I broke out of my shell a bit since leaving college, I still was really NOT fond of talking to a group of adults. Kids? Sure! Just not the grown ups!! I told the Accredo advocate that I would definitely have to really think about it. She said that was ok, and to let her know what I thought in a week or two.

I spent about a week talking to my family and friends about the possibility of leading a support group. I prayed about it a lot, wondering what I should do. I mostly was worried about being in front of people, but a part of me thought, come on, just try it. So after a week, I called the Accredo rep back and told her I'd like to try running a support group! It was then that she also got me in touch with the PH Association, and the plans were in the works to find a place to have the first meeting and ways to reach out to those in the area who might like to attend.

My first meeting was in October 2005. I had a small group of people attending, and I was beyond nervous! All I did, though, was introduce myself and share my PH journey. I asked others to share their stories as well, and before I knew it, the 2.5 hours were up! The first meeting was such a success, and everyone thanked me for gathering people together to discuss this illness.They were all in the same boat as me, and none of them knew there were others out there like them, too. I went home and cried a little from happiness, and knowing that I was able to help others!! And then I took a much needed nap!!

In the years since I began a PH support group, I have become more involved in the PH community online as well. I host 2 of the online chats a week, and I am a PH mentor. I also belong to many PH-related groups on Facebook. I try to help anyone who has been diagnosed, including the random calls I get once in awhile from someone who happened to find me online. I was so worried when I had to quit teaching that I would not have a purpose anymore, and yet, I do. I have found my purpose! My "classroom" was not as I imagined it would be, confined to a room with 4 walls. Instead, it's everywhere I can help someone, and educate about this disease!

I am making a difference. I am helping others diagnosed with PH in so many ways. I get thank yous every single time a meeting is over and people start going home. I have gotten emails from totally scared and newly diagnosed patients thanking me for taking the time to respond to their copious amount of questions. I think people who return to chat often means in some way, I've made a difference in their life by being so welcoming and trying to understand and listen to their concerns. In turn, being a support to people has also helped make a huge difference in my life. I don't feel so lost anymore, especially when I've helped a person find answers and I've possibly calmed their fears. I don't feel so alone.

In the spirit of Make a Difference Day, I share my story with many of my phriends who may have lost their purpose since their diagnosis. It is not impossible to find a new story, a new way to help others, even if they don't have PH. There are so many ways to make a difference in a person's life. It just takes a little time to figure out how.

Kullie's Journey with PH+ (as told by her daughter, Lakesha)

“Continue to fight and educate, get involved and make life comfortable.”

Kullie Sanders was diagnosed with Pulmonary Hypertension and Pulmonary Veno-Occlusive Disease (PVOD) in November of 2010. Her journey was one of determination and fight.

    In efforts to cure through surgery what doctors thought to be a pulmonary embolism, Kullie Sanders and her daughter, Lakesha Jones were flown out to California by the University of California Hospital and flight for life. After 10 minutes of surgery, the doctor approached Lakesha, explaining that her mother had something much more serious than a pulmonary embolism. Kullie was now diagnosed with PH and PVOD. The doctor went on to explain that he would be surprised if Kullie survived another month.

    In the months succeeding surgery, Kullie faced a number of challenges. Having been such an active individual who was so full of life, and often worked multiple jobs, it was difficult to adjust to becoming so short of breath so quickly. The disease had essentially stopped her life. Kullie was now on 22 liters of Oxygen and had trouble breathing after taking only two steps. She was now dependent on a wheelchair, and needed transportation to be mobile.

    Although Kullie was faced with these challenges, she did not give up her fight. She had a strong determination, so strong that her doctor stated “I have never seen a patient fight so hard.” With the progression of her disease, it was now an accomplishment to take four steps without becoming short of breath, or to be able to get dressed on her own. One of Kullie’s biggest accomplishments took place at Church one Mother’s Day morning. She stood out of her wheelchair for a prolonged period, singing and clapping her hands along to the music.

    Throughout her fight, Kullie found an extreme amount of strength and support from her family. Although she was facing a life threatening disease, her biggest concern was always her children, and six grandchildren. They kept her going and fighting, she always wanted to make sure that before anything, they were okay.

    On May 21st 2011 Kullie Sanders lost her fight with PH and PVOD. Through her battle, she continued to keep her faith in God, and determination to keep fighting. Her daughter, Lakesha shares, “The most frustrating part of this experience was to find out that there is a PVOD specialist right here in Colorado after being sent to California. Make sure you talk to doctors and find out information. I think we put a lot of trust into doctors, but we need to make sure doctors are giving us the best care. Continue to fight and educate, get involved, and make life comfortable.”

                                          

PHenomenal Lives: PH + HIV

by Jeannie Wraight

PH and HIV Patient

When I look back at who I was when I was first diagnosed with HIV, it's hard to believe I am the same person. I knew I was at risk. My boyfriend was HIV-positive and we took minimal precautions based on uneducated decisions. The only thing I can say in my own defense was that in 1995 there was little HIV education available, and syringe exchange programs, even in New York, were only open a few hours a day, a couple days a week.

We could never make it there in time to collect clean syringes, but we thought we had figured out how to use

them without putting me at risk. We were dead wrong. I was stupid and careless. I have never been sick from HIV. I am what they call a long-term non-progressor. My viral load is almost nonexistent and it took 15 years for my T-cells to decline to a point of concern. 

I have never been on HIV medication. For the past 15 years, I have lived and breathed HIV. 

I’m an AIDS treatment activist, focusing on such issues as novel drugs in development for HIV, including gene therapies, immune-based therapies and therapeutic vaccine. My big focus now is cure research. With one person already cured of HIV (though his treatment cannot be replicated for most), we are closer than ever to finally ending the AIDS crisis. Even so, my biggest problem is not HIV. It is my pulmonary hypertension that is the more likely of the two to take me down. 

I was diagnosed seven years ago with PH. I remember the night that I realized something was wrong. My dog, Jo-Jo, a rescued Akita, loved to take off running whenever he got the chance. He'd make me chase him around, pretending to stop and sniff a tree so I could catch up, allowing me to get within arms' reach before

running again until he’d had enough. I knew the game well, and having no choice but to let him do this ritual, I began chasing him through the streets of the Bronx. But this night was different. After a few minutes my lungs

started to burn. The air seemed to be disappearing. I kept needing to stop. Jo-Jo, of course, stopped beside me each time. My heart began beating wildly and I felt like I was hyperventilating. I couldn't catch my breath. 

Even with Jo-Jo mercifully waiting for me, I could barely keep up with him. I couldn't go home, even to get help, because I was afraid he'd run into traffic. I began crying uncontrollably. I remember walking past some kids who had been hanging out on the corner. One said, “Damn, girl, you ain't caught that dog yet? What's wrong with you?” I wanted to scream, “Something is wrong with me – I need help!” By the time I caught Jo-Jo, I thought I was going to die. When I finally walked through the door of my apartment, I fell to the ground, hysterical, and threw up. 

Luckily, my doctor had recently seen another doctor diagnose PH, so he sent me for an echocardiogram upon seeing my symptoms. Three weeks later I was at the 16th International AIDS Conference in Bangkok, Thailand, when it was time to call in for my results. After I was given a diagnosis of pulmonary hypertension over the phone, I immediately called a cardiologist friend for an explanation. He didn't need to say much. I knew from his voice it was bad. 

I have found that stress will aggravate my sickness and symptoms. Unfortunately, stress is a major factor in my life. Today, I am trying to minimize the amount of stress I feel and improve the way I handle it. I am newly married to a wonderful man from the United Kingdom, and as soon as the U.S. government approves his visa, I can start living the life I have always wanted — a quiet life with much less stress.

I will not give up. I am surviving HIV, and I plan to survive PH for as long as superhumanly possible. I have much to live for, particularly in the form of a gorgeous Brit. I am finally learning to come to peace with myself and the world. My PH may be HIV-related, or it may not. But one thing is for sure: more HIV physicians and patients need to be made aware of the risk of PH in HIV patients. One in 200 HIV-positive people have pulmonary hypertension, but because it is normally so rare, diagnosis comes too late for too many. I was lucky and I will work until my last breath to make sure that others are lucky as well, being diagnosed early and getting the appropriate treatment. My life is not nearly over, it has only just begun! 

From Pathlight, Fall 2011