PHight for PH......Karate Style!

By Tadesse Wondwosen, PHA Intern

    For our younger generation, living with Pulmonary Hypertension can present many challenges. Learning how to meet those challenges can be a drawn-out process. Faced with the normality of being young and aspiring, the younger PH population must also come to terms with being able to cope and manage their condition as well. We spoke with Shannon O’Donnell, an ambitious teen, as she shares her experience with fighting PH and living life to the fullest.

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

PHA: Could you please introduce yourself and briefly explain your connection with PH to our readers?

Shannon O' Donnell: "Hi everyone my name is Shannon O’Donnell and I’m a pulmonary hypertension patient. I’m nineteen and I’ve had PH for thirteen years. I’m on the crono five pump for remodulin and also many oral medications and oxygen at night. I’m currently a karate teacher for mentally challenged children and will be competing in my first tournament in two weeks!"

 PHA: From my understanding, you are still in college? What school do you attend and what is your focus?

Shannon: "I attend Bunker Hill Community College in Charlestown, Mass. My major is pediatric radiology and I’m currently in the prerequisite stage of the program."

PHA: Being in college, what are some of the challenges (if any) that you face when keeping up with your PH?

Shannon: "Well I’ve had some issues with some of my professors who don’t always understand why I miss class or leave early, even if I tell them ahead of time."

 PHA: Being away from home, is there still a network of support between your family and friends?

Shannon: "My school doesn’t have dorms so I still have the luxury of living at home with my family who are constantly caring for me. Most of my friends have gone off to further schools; however I still received their love and support as well."

 PHA: Shannon, what would you say keeps you motivated in not having your PH define you?

Shannon: "Darren Criss (Blaine from glee) has this saying “There is nothing more bad-ass than being yourself.” And there’s also a lyric from Demi Lovato’s song Fire Starter, “I'm a bad-ass jumping off the moving train I'm a Jane Bond, putting all them guys to shame I'm a wild card, and I'm gonna steal your game you better watch out.” I do what I want and listen to what my body tells me. I just try to be myself no matter what." 

                                                                 

PHA: And lastly- what would your advice be in how the younger generation can live with PH and still be able to live normal lives?

Shannon: "Listen to your body and live how you want while still respecting your parents. And it’s okay to be the smartest person in science class. Go to junior and senior prom don’t let PH run your live because you have one life to live so let it go and have fun."

What's A Life Coach?

By Elisa Lipnick

Sometimes we can use a little extra help in our lives, especially when you are diagnosed with a chronic illness. Need help with finding what's next for you in life, defining your goals, getting a job, etc., a life coach can help you.

The definition of coaching per the International Coach Federation:

ICF defines coaching as partnering with clients in a thought-provoking and creative process that inspires them to maximize their personal and professional potential, which is particularly important in today’s uncertain and complex environment. Coaches honor the client as the expert in his or her life and work and believe every client is creative, resourceful and whole. Standing on this foundation, the coach's responsibility is to:

        Discover, clarify, and align with what the client wants to achieve

        Encourage client self-discovery

        Elicit client-generated solutions and strategies

        Hold the client responsible and accountable

         

This process helps clients dramatically improve their outlook on work and life, while improving their leadership skills and unlocking their potential.

FAQ’s:

http://www.coachfederation.org/need/landing.cfm?ItemNumber=978&navItemNumber=567

FAQ’s for me as a Life & Wellness Coach:

What is coaching? Coaching is a partnership between coach and client. Through creative process, the coach will assist the client in getting from where they are to where they would like to be.

How is coaching beneficial? Coaching is beneficial for many reasons. Clients see many different benefits. Personal development is one of the biggest benefits. Clients go through the coaching process and discover many personal opportunities and aha moments.

Where do you meet your clients? I meet me clients be phone. We have one-hour sessions each week by phone.

Is these homework? Yes, if a client needs certain tools for their growth they will be provided with these tools.

Can I do group coaching? Group coaching is an option. We will have a conference call style coaching session with the clients who are interested I group coaching.

What does the process look like? This is a creative process in which the client has full control of the direction of the coaching. I will check in with the client and make sure we stay on track with what is on the client’s agenda.

Will you give me advice? My job is not to give advice; this is a discovery process for the client.

Is life coaching similar to therapy? No, coaching focuses on the present and how to move forward into your future.

How long does it take? This depends on the client, but most coaching relationships last six months to a year.

What is the client’s responsibility? To call in, be present, and do the work.

How do you chose the right coach? Make sure you find a coach that you feel comfortable with. That is very important. Not every coach will work for every person.

Is there a time commitment? One hour a week every week.

Here is a review from a former client Erica Cenci:

Working with Elisa really helped me gain a better understanding of myself. Through our various sessions, Elisa made me feel safe, and allowed me the opportunity to open up and be completely honest with inner-self — something I have struggled with in the past. Her questions were thought provoking and brought me to a place of greater awareness and peace. Through her coaching, I was challenged and stretched to new levels, moving me closer toward my goals and desires in life. I would recommend Elisa to anyone looking to get greater clarity, understanding and movement toward their goals in life.

PH Goes to College

Part I by Kiara Tatum

It’s August, which means its back to school time for students.  But when you have Pulmonary Hypertension, it can change the flow of the college experience.  Whether you are a commuter or live on campus, having PH and going to college is rough.  I had symptoms of PH while enrolled in college; however, I wasn't diagnosed until two years after graduation.  However, I know how difficult it was for me to get around the college campus and to balance the shortness of breath, fatigue, chest pains, and stress of the college course load as well as a social life with friends.  Here’s some helpful advice that might be helpful to you during your college days.

1. For those living on campus or away from home, find a PH specialist that is near your college campus that you can turn to during a medical emergency.  However, you should be keeping in contact with your PH specialist from home since you will be returning home for doctor appointments and care while not in school.
2. Go to the campus disability office or office of accommodations right away.  By going to the disability office you can find out what services are offered to students with disabilities and what your rights as a disabled student are, especially if you have to be hospitalized and will miss classes as well as need to make up exams, labs, or special assignments.  Make sure that the disability office has a copy of your necessary medical documentation on file.
3. Let your professors know that you have Pulmonary Hypertension.  Explain to them that you may miss classes due to your illness.  However, you will inform them via email or voice mail, so that you can continue to keep up with your studies and assignments.  But you may need extra time to complete assignments if become hospitalized or have bad PH days.  
4. Whether you live on campus or commute, be prepared for a medical emergency.  Keep the emergency documentation on the room refrigerator, keep in backpack, or even put on your cell phone.  And make sure the campus medical office has a copy of your medical records as well as wear a medical alert ID bracelet.
5. Use your academic planner to keep track of not only of all your assignments and due dates, but of your medical appointments, medication reorders, and medical contact information.  This will help you be less stressed when trying to balance the college life with your medical world.
   
6. Get email and cell phone number of at least one person from each of your classes that you contact and obtain a copy of notes and/or class assignments if you have to miss class. This will help you to stay caught up if you have to miss classes due to bad PH days or hospitalization.
7. Stay in contact with your parents or caregiver.  This is especially important for those who will be attending college for away from home.  Those who love you should hear from you each and every day.  It can be a quick text if you’re busy, but they should know how you are feeling in regards to your PH and well being at school.  If you’re not doing well, then be honest and let them know that today wasn't such a good day and explain to them why. 
8. Oxygen can be an asset when walking on a large college campus.  Getting around on the college campus can be difficult, so adding oxygen or using medical equipment like a scooter or motorized wheelchair can help you get around the campus with ease.
9. Take good care of your physical and emotional needs especially if you live on campus and are away from home.  Always make sure that you take your medication as prescribed and use your coping tools to get through stressful times.  It’s great to have a social life, but keeping a good balance will help with the course workload and keep your body and mind less stressed.
10. Know that it’s okay to say that you have to go home or that you have to drop a course.  Sometimes you will miss too much class due to hospitalizations or bad PH days and need to drop courses during the semester.  You may not always be able to keep caught up during that semester, so taking a leave may be necessary.  Just be okay with that decision and know that you can always go back next semester.  Even though you may feel angry and disappointed, stay motivated and positive.  You will get your degree, no matter if it takes you a little longer than someone without PH or a chronic illness.

Stay tune for PH Goes to College Part II.  Hear from the voices of current college students that are diagnosed with Pulmonary Hypertension.