Saturday, October 25, 2014

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.

Saturday, September 13, 2014

Positive Thinking Day!

September 13th is Positive Thinking Day, and this is a special day in my eyes. As a person living with two illnesses, positive thinking is my way of life. It's my lifestyle. I can remember it like it was yesterday, hearing life-changing news that could have broken me down, but all I could think about was keeping a positive mindset.  

Before my diagnosis, I had always been a fan of popular quotes. I liked to read through them, and they would make me happy. After I was diagnosed with Lupus, and then pulmonary hypertension, these quotes energized me. I felt a deeper spiritual connection with the words I was reading. I also felt like it was my new purpose in life to help all people live a positive life. 

At the time of my diagnosis, I also let go of all of the stress I was carrying with me. Until this point, I had no idea how much I let stress control my life. I didn't want any unnecessary stuff in my life. I felt like I already had so much to deal with, and why add on more. I always say that I wouldn't trade my diagnosis, it changed me, but in such an amazing way. It was like I could finally see the beauty in everything, and the wonderful in the small things.  

I started to have better relationships with my friends and my family. I started to experience life more. I mean, I wasn't scared of death anymore. I feel like I faced death when I was diagnosed. Although I never believed I had an expiration date, I thought that if I truly did, then I wanted to live my best life. Here I am two years later, and I can say that the past two years have been some of my favorite years. There has been so much change and growth, and I owe it all to positive thinking. 

When negative events happen, I think it is natural to react in any way that is right for the person experiencing them, but when these events come up, I like to be the healthy reminder that there is always a positive side. I am considered "Positive Polly" among my friends. I noticed that it is difficult to see through the negative, and I think everyone is entitled to be reminded that life has so many beautiful gifts that are hidden among the craziness of daily life.  

I am happy to be able to live a positive lifestyle. This has given me so many little gifts that I cherish everyday. I hope to be an inspiration to others, so they know that with a positive mindset, you can push through any hardship. Life is going to throw curve balls, but luckily we are strong, and we are able to create the happiness in our lives. My wish is that everyone can live the positive life that they choose.   


Happy Positive Thinking Day! 

Written by Elisa L. 

Friday, August 29, 2014

More Herbs, Less Salt Day

August 29th, 2014 is More Herbs, Less Salt Day. This is a day that encourages people to use more herbs, more home cooked meals, and less salt. In a world where less healthy meal options are so easy to come by, it is difficult for most to eat healthy and balanced meals. Adding more herbs is a simple solution to over salted options. Herbs will add to your dishes, and can be just as satisfying as salt.  

Living with an illness in which you are advised to eat a low-sodium diet can be difficult. One day you are able to eat what you want when you want, and the next day being put on a low-sodium diet can be hard to get used to, especially when most people use salt in many dishes. It was strange at first for me to eat low-sodium. I have always been a healthy eater, but low-sodium was an eye-opener. There were a lot of food items I had to cut out of my diet. After some time, eating low-sodium became natural. Now if I eat foods high in salt, I can taste it right away.  

I have been able to find many delicious recipes for healthy dishes on Pinterest. I simply searched "more herbs, less salt" and I was able to find so many great food recipes and options! Once I had to alter my diet to low-sodium I started to cook more for myself, and I realized I love cooking healthy food! It is nice to have control over what I am eating. I know that many people are very busy, and healthy eating can be a bit tedious, but in the end it is so beneficial. One of my favorite options to make is crockpot chicken. You can cook this so many different ways. I like to use homemade marinara sauce, spinach and chicken. I put it all in the crock pot and let it cook on low for several hours, and then I have delicious chicken that will last me a few days. 

Herbs are easy for me to come by, we always have them available in my house. You can get dried herb and spice racks almost anywhere, which are great for trying out new herbs. Another good way to get herbs is to have an herb garden. You don't need too much space; since herbs are pretty small you can grow a few in your house or backyard. I have seen retailers like Wal-Mart, Target, Home Depot, and Lowes selling little herbs and herb boxes. They are pretty inexpensive, and easy to grow. There are also ways of saving and freezing herbs. I have seen people freeze them in ice cube trays, this is great because they freeze in single servings. Again, you can find so many different ideas on Pinterest. You can check out my own personal more herbs, less salt Pinterest board for more ideas!

I think More Herbs, Less Salt Day is so important. I think too often we focus on faster rather than healthier. I hope that more people will start to incorporate more herbs and spices into their meals. Living with illnesses sometimes bring more awareness in all-around health, and our diets are so important. I will be honest, sometimes I wish I could eat the unhealthy fast food items, but once I do I feel bad and sick after. I feel better when I eat fresh foods, and less salt. I do like to go out for meals occasionally, but I am still cautious about what I order.

Eating healthy is extremely popular right now, which is great because there are so many resources out there for healthy eating tips and recipes. I hope you find some resources that will help you to incorporate a healthier diet.  Here are a few resources I have found helpful: 

Written by Elisa L.


Monday, August 18, 2014

Sister's Day

We recently celebrated Sister's Day on August 3, 2014. No matter how close you are with a sister, I think you will always have some special bond. I am nine years older than my sister and we have never been extremely close, but we do have a connection that I wouldn’t trade. We are so different, yet oddly the same. I have never talked to my sister about my lupus and PH, but sometimes my sister will come along to my doctor appointments. If anyone has seen me at my worst, it has definitely been my mom and sister. It is a part of my life that I let few people see.

With these illnesses, I have done my very best to maintain an extremely positive attitude. I want to be a role model to all who enter my life, but I especially want my sister to know that nothing can stop you. You can have the life that you choose, you can do anything. I asked my sister some questions about my lupus and PH, and how she feels about this whole situation. We have never had a conversation like this, so it was out of both our comfort zones.

My interview with my sister:

Do you worry about your risk for developing PH or lupus because I have them?

Having a sister with lupus and PH, I am concerned that I could potentially be at risk. From what I know both illnesses can be hereditary and I've never been checked for either one.


How has my illness impacted your life?

Your health issues do impact my life because I worry about you. I don't always know what is going on with you being sick, so it is hard when I see you some days and I can just tell from looking at you that you’re in pain. When I can hear you having a hard time breathing or coughing, it’s scary because I don't know what's causing you to have these problems. I personally don't know much about your illnesses or what you are going through, so I don't really know what I could potentially do to help when you’re having a bad day. It’s just hard when you know someone you love is sick, it’s just worse when you can see the effects the illnesses have on them.

 I can understand how any person who has a sick sibling could feel scared and at risk. Even though we have no family history of lupus or PH, it is still something that could show up. I think that family plays an important role in my health and my wellbeing, and it is good to know that I am supported, but I also want my family to know that even on a bad day I will always fully support them.

I also have a sister-in-law that I have become very close to over the past few years. She lives in North Carolina, and I try to visit her, my brother, and their three kids as much as possible. Jena, my sister-in-law, has lupus. She was diagnosed at a much younger age than I was – she was only 14, whereas I was 24 at diagnosis. In my opinion, her journey with lupus was much more difficult than mine. I can't imagine having to go through high school with the aches and pains and fatigue! I asked her a few questions about PH, too.

My interview with my sister-in-law:

5/1000 lupus patients may have PH. Had you heard of PH before you met me?

I didn't know about PH, and I also didn't know that 5 out of 1000 may have PH. Once I learned this info, I realized that I could be at risk for PH, too.
 

You have three sisters who don’t have lupus or any other chronic conditions. Does your lupus impact them?

I don’t think my lupus majorly impacts their lives. Our grandmother did die at the age of 28, and she had scleroderma, which is another disease that can be associated with PH.
 
I am so happy for Jena, she has been able to marry a great guy, my older brother. They have three incredible children, and they are such a joy to be around. She is also becoming a teacher, and has about a year left of school. It is so great to see how people in my life push through the pain, literally.

Sisters are so important to me. I learn so much from them, and I do count my friends as my sisters too. Not everyone will know the joy of fighting with their sister, and the craziness that is involved with having a sister; it’s an experience that is hard to describe. I am blessed to have a sister, a sister-in-law, and friends who are sisters. I try to celebrate these people every day in some little way.
Written by Elisa L.

Do you have a sister or other person in your life who helps support you? Be sure to share PHA's resources for caregivers with them! Learn more at www.PHAssociation.org/Caregivers.

Tuesday, July 15, 2014

Summertime Survival!

Bright sunshine.

Hot days.

Warm nights.

Humidity.

Pool time, air conditioning!!

It's summertime around the United States, which means a whole other way of surviving everyday life due to the weather outside. Much like dealing with the winter weather, many PHers need to take precautions and make adjustments to make sure they can get through the summer months with no problems. Once again I have asked fellow phriends (friends with PH!) to provide some survival tips for the summer. Here are their ideas! Many thanks to everyone who participated in this blog post!!

------------------------------------------------------------------------------------------------------

*Kevin B: Well anything I could offer would be obvious...like getting up early to get my yard work done or waiting until late evening etc...living in A/C and going from A/C to A/C lol although it's pretty nice down here in Terre Haute right now.

*Jen C: On the Texas Gulf Coast, I stay in the AC most of the summer, try to do errands early if I can, and take frequent AC breaks if I am out for any period of time! Cool pool helps me cool off when I can and drinking cold liquids! Also dress light lol

*Pat F: I want to continue walking as I did in pulm. rehab. I can do it on a treadmill...but I really like to walk for 30 minutes or so walking around Wegmans or Target. Both stores are clean, air conditioned..FLAT! I stop when I need to, pick up anything I need, or nothing at all. They both have clean restrooms. LOL (for those on diuretics) I can go to Kohls, but their carts are terrible, aisles are narrow...but it is clean and friendly.

*Anna A: Stay hydrated, I know we are limited on liquids, but we still have to make sure we don't pass out from the heat. We all keep our meds with us when we leave or we should and they should be kept in a cool spot, I like to have a mini ice chest in my car. Try to stay in shady areas, we can't be in the sun too long because of the type of medications we are on. If we are going for a walk, tell someone, just in case you don't make it back. Try not to talk and walk, we could lose our breath and pass out.

*Tiffany G: A/C and plenty of ice water.

*Guy M: Beer and some shade (I like how Guy thinks! lol)

*Alex F: Carry water with you wherever you go. Don't over exert in humidity, knocks me down for days! Go inside when too hot. Look at weather report. If it's bad for eldery or allergy sufferers, it's bad for us too.

*Vernon G: When it's too hot I stay in the AC.

*Patty F: South Jersey here...wear loose clothing and if you use liquid oxygen, take an extra tank to allow for evaporation in the humidity.

*Catalina L: I'm out and about a lot on buses and that means waiting at bus stops on HOT days. I take umbrella, frozen water bottle, the cooling rag that my PHriend Bonnie sent me, sunglasses. And in between I will go into cool A/C stores just to look around until I cool off. Then I come home and take everything off and relax in my own A/C cool home.

*Lisa T: As everyone else said, to keep hydrated. I know myself being on water pills I can get dehydrated easily. Also to keep cool. Not to eat anything heavy.

*Janet P: I love being outside...and I don't have anyone who needs me at home, nor much to do during the day other than housework. So I can be out in the heat and recover when my body gets too hot. I hydrate, use the AC when it gets way too hot or muggy.

*Cathy M: I use ac all the time because of the humidity. Being on the ocean we tend to have high humidity, as in 90%, most of the time.

*Jennifer K: Coming from Florida, summertime means bad storms in the afternoons and the potential for tornadoes and hurricanes. We, as PAH patients, should always be ready in case of emergency but when you add those pesky little natural disasters, we have to be even more diligent! Extra back-up supplies, generators in case you lose power, knowledge of where the closest "special needs" shelter is, phone lists including your Specialty pharmacy number, oxygen company number, etc...Extra cash! AND having a designated spot to meet at if you can't go home, and a previously planned place to stay in case your home is not livable...Anyone else from the coast want to add anything? Oh yeah, homeowners insurance!!

*Susan T: I hate air-conditioning because it freezes me, and I hate humid heat because it zaps me. It's not too bad at my house because I can keep the AC where it is comfortable for me. When I go to other places, though, I have to make sure I have a jacket or sweater for inside. Sometimes I still get too cold and have to go outside in the heat for awhile to get warm and then go back inside. I keep an afghan at my church because it is always too cold for me - summer and winter.

*Evelyn C: Go to the water, beach or pool with the highest sun block. Maintain in the water to refresh your body from the heat. Bring some cookies and cakes with lots of drinks of all kinds.

*Mary W: I get up early and do all my outside work early in the morning or late in the evening.

*Deborah W: Popsicles, ice cream, water (lots of water) and a/c. When it is too hot to go out during the day, I make it a point to sit on the patio in the evenings when it cools off some.

*Pat K: I use flexible ice packs. I take them with me in a small insulated nylon cooler with a bandana and apply to neck when I feel myself becoming overheated. Also in addition to sun block (apply often when you're outside), I take a large golf umbrella for daytime outdoor concerts, picnics, etc.

*Joellen B: Do your running around in the morning or evening to avoid the hottest part of the day. Also ask for help with some stuff that is too hard to do!!

*Regan S: I'm in the Mojave where it's regularly in the hundred and teens in the summer. I like to suck on ice cubes. Since I have to limit my water intake, sucking on ice makes my water allowance last longer! I take cool showers in the middle of the day. I exercise early, like 6am. I have a special car seat cover that holds ice packs to keep the car seat cool while I'm shopping. I carry a small misting bottle and tiny hand held fan in purse. I wear minimal clothing when it's hot and I'm at home. I just have to remember not to answer the door in my underwear...lol I keep a beach umbrella in my car, too.

*Pam M: Stay in the house during the hottest time of the day! A/C, fans, lots of H2O.

*Tammy D: Keep hydrated.

*Kathy B: Stay hydrated. Drink water and avoid caffeinated drinks as they dehydrate the body. Pace yourself in the heat. Don't try to do everything in one day, spread the chores/errands out through the week. Do a check on each other, we do that here anyway, but if you live by phamily, check up with each other. Help each other out. Be careful of aerosol bug spray. It messes up the lungs. Use lotions, no aerosols.

*Lynne C: I love Outshine Fruit Bars...25 calories and 0 sodium. Very refreshing.

--------------------------------------------------------------------------------------------------

If you have any summer survival tips of your own, please post in the comments below!


Monday, June 30, 2014

My First PHA 2014 Conference

I was beyond interested and excited when I found out about PHA’s International PH Conference and Scientific Sessions. I found out in January through my participation on the newly diagnosed advisory board with PHA, and once I heard about it I wanted to be a part of Conference. I was told by other members of the advisory board that PHA has a scholarship program to help people attend. This made me even more interested. Right away I went onto the PHA website and filled out the scholarship application. A few weeks later I received a letter in the mail from PHA informing me that I had been awarded a scholarship. At that moment I fell in love with this organization. I had already liked PHA because everyone I had the privilege of talking to via phone or email had been so amazing and so nice. This was an organization I wanted to continue to be a part of.

About a week later, I received an email asking me if I wanted to participate at Conference as part of a Patient & Family Led Session. Of course, I jumped on this opportunity. I found out I would be on a panel with David and Mark, and we would be talking about communicating about PH. Whoa! I thought. This was the one part of having PH that I had been struggling with the past two years, but I thought this would be a great start to be more open about PH with my friends and family.

I invited my mom to come with me to Conference because she is also my caregiver, and I thought she would benefit from the experience as well. We were both so excited to be attending.


We arrived at Conference late Thursday night. I was so happy to be in Indianapolis, and so happy to know that the next day I would be meeting people who were like me and living with PH. At this point I had never met another person with PH.

Friday I went and met with my group for the patient led session, and it was such a wonderful experience for me. My first meeting with people living with PH. Our stories were so similar, and I could tell they understood, they fully understood. This was a feeling I had not experienced, and it was honestly one of the best feelings in my life. This was already off to a great start.

As my mother and I walked around Conference we had the opportunity to meet other patients, caregivers, doctors, and family members. Everyone was in good spirits and the energy was so welcoming and friendly. We entered the Grand Ballroom and sat for the Conference opening. We had the privilege to listen to Jeannette Morrill; she is a long-term survivor of PH. She shared her journey with PH, and she is now one of my heroes. Her story was so inspiring and beautiful. I have always been hopeful living with PH the past two years, but hearing all of her challenges and how she overcame these challenges gave me a new sense of hope. I truly am beyond thankful for her sharing her story. I hope to thank her in person someday. I recommend buying her book, Living with Pulmonary Hypertension: 34 Years and Counting. She has been living with PH for over 38 years. Listening to Jeannette’s story was an experience I will never forget. As she stood there speaking, I had a rush of emotions all at once. A rush of tears came running down my cheeks, I couldn’t stop them. I had a mixture of emotions, but I knew that I was feeling incredibly hopeful, strong, and energized to beat PH. My life was changed by this story alone. Even writing about this right now, I can’t help but feel the same emotions.

My next Conference experience was participating in the patient led session, and our topic was communicating about PH. This was such a wonderful moment for me. I got to share my story, listen to David's and Mark’s stories, and engage with other PH patients, family members, and caregivers. I am thankful to have been able to share my story, and I have made it a goal of mine to be more open and honest about living with PH with my friends and family. It was amazing to learn about David, Mark, and the patients in the audience. I will always cherish this moment.

After, my mom and I walked around. We went into the Exhibit Hall, which had various booths with lots of information. I picked up several pamphlets and information packets. It was so nice to get to walk through and meet new people and get new information. We ended the night with dinner and learned about early diagnosis and the upcoming PHCC (Pulmonary Hypertension Care Centers.) These are so interesting - be on the lookout for PHCCs! These are PH centers that will specialize in PH. I think this is a genius idea, and hopefully this will lead to new medical advancements in treatment, early diagnosis, and a cure. This was a day full of excitement and I was beyond tired at the end of the night. Off to bed I went.

Saturday started off great! We went to breakfast and had the opportunity to meet more people, as well as, having a doctor at our table to discuss a specific topic. We sat the nutrition and PH table. Tim Lahm, MD from Indiana University School of Medicine, was our doctor. We had an interesting discussion about nutrition and PH. Dr. Lahm answered all of our questions, and I learned a lot. He was very helpful, and it was nice to meet doctors other than my own, that are committed to making a difference for patients with PH. We stopped by the Research Room and had the change to participate in studies that are working toward finding more information on PH. We even got to give blood for the research, not my favorite, but I am committed to making a difference any way that I can. We then headed to the medically led session for coping with a chronic illness. I heard from medical professionals and other patients, and it was very informative. I loved being able to listen to the stories from patients, caregivers, and family members. My mom had the chance to go off on her own and attend some support group meetings for caregivers. I took a nap. Then we attended more medically led sessions, and then a very exciting fashion show. The show was a fun experience. There were PH patients showing off their personal style, and how the strut with their oxygen, and other PH treatment types.

Sunday was the final day at Conference. I had been having such an great time. I attended a breakfast for PHA PHriends. I was able to meet everyone in person who I had communicating with over the phone and email. That was so awesome. We had a great breakfast, and again I was able to learn more and more. I attended one more medically led session, and then Conference was wrapping up.

This was my first Conference and I hope to attend every one that I can. I am already excited to go to Conference 2016 in Dallas! I am also in the works of planning a charity event benefiting PHA. I am so energized to be a part of this wonderful organization. It isn’t everyday you come into an organization and feel like family. The community is full of rock stars. The people involved are so amazing and I am so grateful for this experience. I hope everyone will be able to experience a Conference. I am thankful for the whole experience and the awesome people I met, and the other great people who shared their stories. My life is truly changed, and I am beyond blessed to have had this experience.

Written by Elisa L.

Friday, May 30, 2014

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.