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Friday, November 7, 2014

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.
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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."

Wednesday, November 5, 2014

Generation Hope #StillPHighting

by Generation Hope Advisory Board


November is a PH Awareness month, and many of you have been wearing awareness bracelets, t-shirts and hats, posting selfies, changing profile pics and names, and other things to bring awareness to PH. But we're still "PHighting", and we can't do it alone. We need help from Congress to join us in the "PHight".

Thursday, November 13th is National PH Advocacy Day. PH Association is hosting a Congressional Luncheon; however, if you're unable to attend, you can still get involved. Create a selfie-video and share it. Email your video to AngeliaD@phassociation.org, and it will be posted to the PHA's YouTube Channel. Share the video with your family and friends and encourage them to make their own videos. And don't forget to add #PHAware when you post your video.

Then on November 13, post your selfie-video to your senators' and representatives' Facebook pages. Check out the video that Generation Hope Advisory Board created:




For more details and a guided script for your selfie-video visit PHAssociation.org/stillphighting

Monday, October 27, 2014

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:

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.

Monday, September 1, 2014

The Long Road to Her

By Colleen Brunetti

This blog is probably one of the most raw things I have written to date. It contains thoughts and experiences I had previously chosen to keep private (in fact much of it was written a year ago and never published) - odd for someone like me who has otherwise made a decision to live this diagnosis out loud in an attempt to change its course. But now is the time to share. My prayer for you if you are living some of these same struggles is that you find some hope in our story.
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My journey to her began at age 19. It was the year I took the job as a nanny for a little girl newly adopted from China. I clearly remember rocking her to sleep in my arms, gazing down at that gorgeous perfect little face, and having the wind sucked out of me. What if her parents had not cared enough to go and get her? What if she had stayed in a Chinese orphanage? What hell of a life would she have lived? And here she was, safe in their home, safe in my arms, the world at her feet. I vowed then that I too would make the difference in a little life, and adopt.

I knew the child I got would be a girl... Altruistically speaking, girls have a pretty tough time in much of the world and I wanted to make a difference for one. Totally selfishly, I wanted to raise a ballet dancer, like me, someone to share that with (for as long as she would tolerate it before asserting independence, of course!)

Eight years ago I had another brush with adoption that only further solidified these feelings. I was teaching special education and I had twin girls from India on my case load. They were the result of a botched late-term abortion and had survived, eventually being adopted by an American couple. Again, I found myself looking at them and thinking, "What if..."

Fast forward many years, and I have an incredible biological son. A son who is my own miracle - as we now know I shouldn't have survived the pregnancy because I probably had PH already, and we just didn't know it.

When you have PH you can't get pregnant. Or, at least, you really really shouldn't. This is something you're told pretty much upon diagnosis. When I was told, it didn't faze me. My son was an infant at the time, and pregnancy was not something I was too big of a fan of the first time around. Since I already knew I wanted to adopt, I figured that would be our route, and that was totally cool.

Except, for a long time it wasn't our route at all. I was so busy chasing a toddler and trying to get better and trying to be self-employed, and my husband always works so hard, and our lives were just full. Although we batted the idea of adoption around many times, the answer always seemed to be "Not now." And that was fine.

But then a little over a year ago my damn biological clock started ticking...and chiming... and the gong started going off... and I couldn't make it stop. I wanted that baby.

After long heart-to-hearts with my husband, it was clear he just wasn't ready for adoption. And I couldn't blame him. It's not like other times when we've disagreed and my nose is all out of joint because he doesn't see it my way (come on, you know you all get like that). This time, he had real fears about the future. How the financial burden of supporting our family is by and large on him.  And worse, he had fears about being a single parent some day, if PH took the ultimate toll. These aren't fears we face head on too often. In fact, we never had before. We've chosen to live with the positive and not think that way. But when we're choosing to discuss a very purposeful choice for the long-term future, and involve the life of a child, we kind of have to wrestle with that dark side too.

For the sake of my marriage, I vowed to force this clock away. MAKE it go away. Focus on my son - whom I love and adore and is so so so enough in all possible ways. Basically, I tried to beat my biology. And pretend I was winning. And I did okay... for a while.

Then in the spring of 2013 I attended a dance recital. And I sat there and looked at the moms around me smiling with so much pride for their daughters on stage and I just lost it. I sat in the dark auditorium and cried silently. That should have been me. PH robbed that from me.

The grief followed me in the months ahead, although I tried to keep it in. Baby showers were torture. My sister got pregnant and I cried my way through shopping for the niece whose arrival I was over the moon excited for. And finally it was clear that I was going to have to either get some serious professional help in letting this all go, or re-visit the decision.

I tentatively broached the topic with my husband. And... he said yes. Why the timing is right now, I just don't know (neither does he). But my health is stable (thriving, even), all of my doctors are 100% in support of this decision, my business is growing, things have changed... and now we're ready as a couple and as a family.

Then it was just down to deciding on how to get her. International adoption held little draw now. I wasn't that interested in having to travel overseas with PH to go and collect her. Domestic adoption sure sounded good, but the tens of thousands of dollars it costs seriously deterred us. Surrogacy was also on the table... but I ended up deciding that if we really were going to do this, I needed to stay true to my original intent all those years ago and help a child in need.

And so, we were left with the foster system. We have chosen to adopt through social services and take a child whose parents can not care for her. It does not escape me that for us to get our daughter, someone else will loose theirs.

This path is scary. In fact, I should probably be much more jittery about it than I am. The child may come to us drug exposed, abused, neglected... who knows. We could be placed with a child, only to have the arrangement fall through because the system deems reunification with the birth family or extended family is better. But the truth is, the road to her has been so very long, sometimes so very hard, and now is the time.

It is going to be fine.

I have total peace about it. A peace that surpasses understanding, and I'm pretty content with that.

We're almost done with all of our DCF licensure requirements.

Now, all we have to do is wait for her.

The Long Road to Her was originally posted on Colleen's blog on July 2.  Follow Colleen's blog, PH and "The New Normal"

Thursday, August 14, 2014

I Am Not My Disease!

By Kiara Tatum


Kiara and niece being silly
I was reading a youth worker journal article, and the topic was identity.  I haven’t seen it yet, but the article was referring to the movie, “Fault in Our Stars.” The movie follows the growing friendship of Hazel, who is diagnosed with cancer, who meets Augustus, also diagnosed with cancer, at a support group meeting.  Augustus asks Hazel, “So what’s your story?”  She proceeds to tell him about when she was diagnose with her cancer.  But he interrupts her and says, “No, not your cancer story, but your real story.” 

That statement made me think about how I defined myself since diagnosed with PH eight years ago.  I was someone before I was sick, and I built friendships, had hobbies, and participated in activities that didn’t revolve around PH.  Sometimes we are so focused on our PH diagnosis and that PH journey that we forget that we are much more than that.  How I identify myself is important when sharing my story with others.  Do I start with I was diagnosed with PH in March 2006 after years of knowing that something was wrong with me.  Or do I start with: My name is Kiara, and I like to be silly and have fun.  I love to watch the ID Channel, sing songs out of nowhere, laugh and smile a lot.  I love the Lord because He loves me and He has brought me through such hard times such as these that I want to show that love to others, so they too will know who the Lord is through my actions which is easier said than done. 

So you see I’m more than just a girl diagnosed with PH at the age of 26 who had to leave her job because she wasn’t able to continue to work.  I’m more than that, and so are you.  You are more than a diagnosis that your doctor gave you, and you are more than this disease that wants to destroy every part of you.  We are PHighters, we are survivors, we are warriors, and we are strong.  And we should not let ourselves be defined by our disease any more. 


I love to listen to music from alternative to country to pop to r&b; I love to laugh and smile; I love to spend time with my family; I’m an aunt, I’m a sister, and I’m a daughter.  I sometimes get mad for no other reason than I woke up that way and will probably stay that way for a few hours; don’t take it personal.  I’m terrified of spiders, and I love to work with youth.  So that’s a little bit about me. So what’s your story? Not your PH story, but your real story?

Sunday, August 3, 2014

Dealing with changes in your health

Guest Blog Post! By Sara Hunt 

Like sufferers of most chronic illnesses, PH patients have to deal not only with the symptoms and impact of PH itself but also with sudden changes in our health and lifestyles. Booking a holiday a year in advance feels like tempting fate. Life is suddenly so much more unpredictable and fragile than it was pre-diagnosis.
My health has been particularly unpredictable. Changes in my health have happened practically overnight on more than one occasion. Three years ago a lung haemorrhage caused a dramatic increase in my pulmonary pressures and I went from perusing a promising career as a dancer to using a wheelchair for any kind of outing. Then, February this year, I simply woke up with worsening breathlessness that never got better. I'm now on the transplant list.

There's something about breathlessness and fatigue that once you settle into a routine of avoiding the amount of exercise that makes you feel unwell, you don't really notice improvements in your health until you're forced to do something you don't usually do and find to your surprise that you can do it without extreme breathlessness or dizziness. Worsening breathlessness is easier to notice and you suddenly have to make changes to the way you live to deal with them. Of course it's always important to do as much as you can but PH symptoms are so unpleasant it becomes impossible to push beyond a certain point. You have to make changes and this can feel like your disease is controlling your life.

Given the increasing unpredictability of my life I feel I might be able to offer some advice here.

1. Stop comparing your life to the lives of those around you.
Everyone is guilty of doing this. We crave constant reassurance that our lives are good. Imagine a healthy person exactly how they are now, but everyone else in the world is Ussain Bolt. Their health and lifestyle would be exactly the same as it is now, it's only in comparison to all the Ussain Bolts that makes it seem mediocre. It's the old the grass is always greener on the other side. But if you constantly compare your life to others you'll forget to enjoy it. Do what you can, there are always things you can do, no matter how ill you are. 

2. Don't compare your health now to your health in the past.
On a similar note, it's important not to lament the past. Treasure the good memories rather than becoming bitter about them. Make good memories for the future, you'll probably need them!

3. Find ways of making things feel normal.
Although your life is going to be affected by your health, it doesn't have to control it. Making small changes and making an effort to go out and do the things you used to is important. From simply having a evening meal with your friends instead of a late night out to going to see a show instead of performing in one yourself.

4. Learn to adapt. It's easier said than done but humans are designed to adapt to change. It's much more nurture that gets us stuck in our ways rather than nature. We are designed to survive and do it to the best of our ability. It's not easy but it's completely possible and your mind and body is designed to do it well.


5. Help yourself feel in control.
We are all in control of our own lives and having a disease doesn't mean you're not. Making the effort to change the way you do things rather than cutting them out of your life completely is how I maintain some kind of control over my life. There are things you can't change but there are lots of things you can, concentrate on those. 

6. Get out and try something new!
So you can't do some of the things you used to but there are plenty of new things to enjoy. Go to a food festival, check out the local book stores and go to a reading of an author you've never heard of, go to a comedy show, visit the local zoo, do something you'd never have thought of doing before and take a good friend along with you. It's easy to get stuck in a routine but new things and regular outings are brilliant for maintaining your sanity. And spending time with people you love is an extra special bonus.

Hopefully these were useful. You're probably doing all these things already but this post should give you fresh drive to this summer and you can never have too much of that!

Feel free to post any advice you have for dealing with changes in your health or even dealing with a new diagnosis. 

For more blog post by Sara visit her site at http://thegirlwithheartdisease.blogspot.com/2014/03/big-decisions.html






Friday, July 11, 2014

Here Comes the Sun

By Marissa Barnes
As we enter into the warm summer months, I wanted to introduce myself as PHA’s summer intern in the Patient and Caregiver Services branch. The summer time is my first and foremost favorite time of the year, not just because I break from school, but because every day I feel rejuvenated by the warm air and happier with the sun shining.  A few years ago I read this quote and since has been my life motto, to
“Always bring your own sunshine.”
 I know for some, being in the sun can cause irritation and the time spent under the sun’s rays for others their summer might not even be all that sunny, for me, living in D.C. we have thunderstorms lined up every day of the week. Regardless of the weather, I try to find a little bit of sunshine in everything I do. I had made a post on the Facebook group asking what some of your summer plans are to be this summer, whether you are vacationing, spending time with friends, involving yourself in certain camps or groups, etc.

 Kevin Mayhood – Paskawych shares his summer plans saying, “I have a slogan and its ‘if I can do it, you can do it’ and I keep trying to push myself to attempt new things, despite this. I am 32, I was diagnosed in 2012, and I have IPAH currently, although there is a thought that we may have an idea as to a potential associative disease. I am spending my summer in my hometown of Marietta, Ohio, but it doesn't mean I am not excited. When I was going through my diagnostic process, I needed something to keep my mind off of everything, so I jumped into an idea a friend, and fellow theatre professional, had about starting a professional summer theatre company in Marietta. So, we formed a group, and over the last two years built up what we needed to pull it off”. (Mayhood-Paskawych).
Kia Thompson-Allen who is 39 and was diagnosed with PAH in 2007, tells us this summer she will be, “keeping my 8 year old busy, taking him to St. Louis to six flags and the zoo there”. Kia recommends staying in the water parks to stay cool, plus drinking icy beverages and finding shade when you can.  Kia explains, “you know it's hard on us PH'ers in the heat, plus my son being a severe asthmatic heat isn't good, so most activities we plan are indoors: library, Chuck E. Cheese, and an indoor trampoline facility; all those places are air conditioned :) and ways to  have fun and stay cool for us”!
Kristine and family at Detroit Zoo
Kristine Green is 35 and was diagnosed with idiopathic pulmonary arterial hypertension in July 2011.  She says, “This summer, I am ALL about family time! I am blessed to stay home with my four year old son. So far, we have gone to Movies Under the Stars- where you watch a movie outside up on the mountain to support our local firefighters, library reading programs, both of the "splash pads" in our town and played a lot in our yard. I am most excited to go camping on the Umcompagre Platuea and for a rafting trip on the Colorado River. Too cool off, we load up our three pups and head to the river or swimming pool (minus the dogs)! We like to make our own Popsicles or freeze fruit to munch on to stay cool too. My son and I are supposed to visit family/friends in Michigan (where I am from) for 17 days- visiting numerous cities while there. However, I am not sure about going right now since I am experiencing troublesome side effects from meds. If we do go, we'll go to Lake Michigan, the Detroit Zoo, festivals and maybe a Tiger's game! I will need a vacation from vacation after that! I like a lot about summer, but harvesting fresh fruits and veggies from our garden, camping and spending time with friends are probably my favorites”.
We love hearing from all of you and your plans for this season. Sometimes the heat can be intimidating to get outside and have fun, but there are many ways to stay cool and still enjoy yourself. I hope you all can find a little bit of sunshine in each part of your day