In May, All Things Are Possible

By Kevin Paskawych

There is something in the air... and I am not referring to the pollen that constantly reminds me of why I actually “kind of” like winter. My allergies aside, there is something magical about this time of year; as my grandmother used to say, “May is the most hopeful month of them all.” I have to agree. May has always been a month of hope for me. Graduations bring the hope of new adventures, new jobs bring the hope of personal betterment, and new friends bring the hope of something more to this life. This year, my hope is for continued improvement with my condition and for a new life adventure that last year seemed to be on hold indefinitely.

Arguably, the hardest part of dealing with PAH is the fundamental lifestyle change that most of us have to endure. What was our daily life is quite often thrown out, and we are forced to adapt to what is so often called our “New Normal.” Activities that we once knew as routine can be forbidden. And for some of us, working and even our hobbies become impossible tasks. Having to make so many changes so quickly can be depressing, and I have heard more than one patient comment on how their work or hobbies—activities now forbidden—were the reason for them to be alive. It is easy to feel the pain in a statement like that; it is harder to understand that all is not lost, and, especially at this time of year, there is hope.

Perhaps it is fitting that World PH Day is in the month of May, particularly for younger patients. If May is the most hopeful month of them all, then I believe in a beautiful symmetry with being a part of the generation of PHers known as “Generation Hope.” We have the hope of new research, new findings, and new medications that are working towards giving us longer, fuller lives. We also have our peers and their stories of improvement, their stories of overcoming obstacles many of us have, and their support as part of the group to get through the new challenges we face in our lives. For my own part, this May is particularly hopeful.

One year ago my fiancée Karen and I had to postpone our wedding indefinitely due to my then “unknown” condition. We had to stop our strolls along nature trails around Marietta and kayaking afternoons and bike rides stopped. We wondered if we would ever get to do these things again the way we once had. Then, we discovered that changes in life did not mean we had to stop life. Kayak trips became fishing trips from the shore; nature hikes became light strolls through the neighborhood. We didn’t let PH take joy from us; we simply adjusted our activities and time together fittingly. We found our own hope in finding things that I could still do, that were adequate substitutes for what we used to do. We found hope in our doctors who diagnosed me, and worked with both of us; we found hope in the medications, and how quickly I seemed to respond to the various treatments. Finally, we found hope when the doctors agreed to release me for pulmonary rehabilitation. One year after we initially postponed our wedding, Karen and I were married this past weekend. We have found yet more hope in the month of May, and we have hope aplenty for the time to come.

May is an amazing month, and I believe it can prove to any of us that hope is there, that joy is there. We have to find it for ourselves; the path of one is not necessarily the path for another. In my case hope came from my improvement while on medication, the joy from finding new, more easily doable hobbies and pastimes; and being able to do that which had been postponed last May. The year takes shape this month. As the days get longer, the weather gets warmer, and we see the rebirth from winter’s cold grasp. This is going to be another year of hope; that there will be new research, that there will be new therapies, and that we will all have a good year. May is the month of hope. It is the month of rebirth. It is the perfect time of year.

Spring Into Action!

By Kiara Tatum

With warmer temps here, it finally feels like spring in the air.  Keeping that in mind, it’s time to get outside and spring into action.  It’s not easy for young adults with pulmonary hypertension to do a lot of outdoor activities because of the limitations that our bodies have.  We can’t run or jog 10 miles a day or swim laps.  Here are some tips that might help you get started to getting active this spring.

1. Before you start any exercise or activity program, consult with your pulmonary hypertension specialist.
2. Start slow.  Begin with a short distance and short sessions.  Start walking, riding a bike, or whatever chosen outdoor activity for about 10 minutes per day, at least three times a week, and close to home.  Once you notice that you are able to endure that without becoming too short of breathe for you, then increase your days and distance or time you do that activity.  Then maybe by the end of the summer, you will be able to take a nice long hike or ride on a bike trail.
3. Be prepared.  Make sure that you have bottled water with you or access to clean water, wear sport socks and appropriate sneakers, and lightweight clothing.
4. Don’t be ashamed to rest.  If you are doing an outdoor activity, and you feel yourself becoming short of breathe, dizzy, heart palpitations; then just stop and rest.  It’s nothing that you should be ashamed, embarrassed, or afraid to do.  Your body has limitations, and because of your PH diagnosis can’t always push yourself on.
   
5. Pay attention to the temperature and humidity.  Don’t do an outdoor activity if the temperature and/or humidity is too high.  It’s harder to breathe in the humid weather for those with pulmonary hypertension or other lung illnesses.  
6. Don’t do it alone.  Sometimes what’s great is to have a friend, family member, or even your dog tag along with you.  Just remember that you need to set the pace for the walk, hike, bike ride, or whatever chosen outdoor activity.

Whatever outdoor activity you choose—walking, bike riding, etc., enjoy it and have fun!  It feels so good to be able to be outdoors and enjoy the warm fresh air.

Depression and PH

Depression is a battle many people with Pulmonary Hypertension and other chronic illnesses have to face from time to time.  Living with chronic medical conditions puts strain on a person not only physically, but emotionally, spiritually, socially, financially, and cognitively. This can be very overwhelming if not addressed.

Find the Source

First, we must step back and as clearly as possible examine what could be causing our depression.  What is the root of our emotional pain?  Medications and their side effects can cause depression.  There are some medicines that cause pain that could be making the depression set in or the medication itself causing emotional imbalances.  I like to not only read the side effects of new medications from the pharmacy, but also look up the medicine online.  My favorite website is www.webmd.com , but keep in mind everything you read online (even a reputable source) may have misleading/scary information.  Also, discuss what you are feeling to your doctor.  He/She may know the source and can help you better cope with the cause of your depression, whether it is medication side effects, pain management or another source.

Reach Out and Talk It Out

When I was depressed I wanted to just stay in bed with my head covered and block the whole world out.  Some days I cry very easily.  At first it was hard to open up about how I was feeling, but after I started to talk about it I started feeling better.  There are different ways and people you can reach out and talk to about your feelings:  close family and friends, PH support groups and mentors, and counselors.  I have my husband to talk to, but my mom lives far from me so I call and email her.  I have also attended support groups and counseling.  Often, I communicate with my mentors about certain issues that may arise or just to talk to a friend.  That constant communication helps me cope and provide clarity about what is stirring on inside my mind.  A couple links to PH mentors are http://www.phassociation.org/Mentors and http://peernetwork.net/.

In Addition…

There are other ways to help with depression or even preventing from getting depressed although it does sneak up on you sometimes:

• Get involved with volunteering, clubs/organizations (like a book club), or use your special talents to help others
• Meditate on positive messages, such as Bible verses, quotes, or proverbs
• Journal-- writing it out is another way I found of releasing my feelings
• Relieve stress by making lists, delegating responsibilities, using planners and alarms
• Talk to your doctor about medication for depression
• Get out, not just seeing the doctor, getting your labs done, or going to work, but to have fun!

Living with PH and other chronic illnesses can be overpowering at times.  I don’t want it to rule my life and I don’t want it to rule yours.  If you have any other ways you cope with depression please share so we may help and uplift each other.

May peace be with you,

Shawna

Calling All GenHope!

The weather is not quite the spring weather that we expected on the Northeast region, but spring is definitely here.  This means that World Pulmonary Hypertension Day is just around the corner on May 5.  I’m calling all young adults to take action this year and participate in this worldwide event.

Pulmonary Hypertension can affect anyone.  It doesn’t care about your age, sex, race, or even your social class.  That’s why we need to show the world what PH really looks like on World PH Day.  PH Association is organizing an online awareness event via Twitter, Facebook, email, blogs, etc.  So all you have to do is share a photo of yourself with the World Pulmonary Hypertension Day logo and a message you want everyone to hear about the impact of PH in your life.   Share information about PH and your own experience with it for the Online Awareness Day Event.

Let’s put a real face to an invisible disease this year!

Twenty Years with PH: A Reflection

Hannah with her daughter at a lighthouse in South Florida.

Hannah Lahmeyer wrote the following on February 12, 2013.

I can barely believe I’m saying this, but today I celebrate 20 years of life with Pulmonary Hypertension.  I was only five years old when I was diagnosed so I barely remember it.  Honestly what I remember most from that year of my life is overprotective adults constantly asking me if I was feeling okay.  I also had a surprise birthday party that I remember well.  Later I found out that it was such a big party because the odds were it would be my last.  A year later I was put on life saving intravenous medication that would be attached to me for 10 years.  Such treatment did come with hospitalizations due to infections and emergency room visits to repair holes in the central line.  It was worth it though.  Not just because I am alive today, but because of all I learned along the way. 

Today I am no longer on the intravenous medication.  Scientists invented a way to inhale that medicine.  I do it four times a day.  While it seems cumbersome, it is far less dangerous and complicated than my previous way of receiving it.  Life is good.  I am now a college graduate, married and the mother of a 3 year old.  All life milestones that appeared impossible 20 years ago.

My story has been told in newsletters, news broadcasts, online and in speeches.  I’ve told it to classmates, and my mother told it to doctors.  It really is a miracle, but after hearing it so much I forget how miraculous it is.  An educated medical professional estimated my life would end in two years and instead it is still continuing 20 years later.  This is indeed a miracle!  What makes it so much more miraculous is along the way I have seen many face death because of Pulmonary Hypertension, but I have been spared.

I do not have guilt because I’m alive and others are not.  I have sadness because I miss them and I know their families do too.  I have joy because I see the way that the relatives and friends devote their lives to make the lives of people with PH better.  My mother has heroically volunteered at the Pulmonary Hypertension Association since I was in grade school. 

It really is a brutal disease.  So complex that no one knows why some patients get PH.  So complex that the patient is often the one educating the nurses, doctor and residents before their hospitalization is over.  Patients have a much better prognosis when they are diagnosed today than when I was diagnosed.  It is promising, but I still need a medication that is more consistently administered and with milder side effects.

I don’t know if 20 years from now I will be celebrating my 40^th anniversary with this disease.  I don’t know if a few years from now my health will downward spiral and I will be in heaven, and my body will be no more.  That is the beautiful part of having a life threatening and unpredictable disease.  Everyday means so much more.  I think I have accomplished more meaningful things in my 25 years on earth than I would have if I were never given this diagnosis.  There are few things in this world that are worth more than knowing how short life really is.

It is a two-part equation.  First is learning that you are really not as untouchable as you think you are.  You are not capable of making your own heartbeat and not capable of making yourself breathe.  At any moment it could all be over for any of us, or all of us.  That is what 20 years with PH has taught me.  The second part is now that you know this, what does it matter to you?  For me it matters because I know that life goes on after death.  My theology is that you go to heaven or hell.  

A diagnosis with Pulmonary Hypertension changes everything about the person you thought you were.  The disease does not define patients; we are just limited by it.  Our calendar is filled with doctor appointments, our cell phone bill is stacked with calls to the insurance company and our bodies take longer to fight off the typical cold.  Denial does not take away the disease.  This past 20 years has been an uphill battle, and I know it will always be that way.  That is fine though because when I look back on the 20 years, my character has been defined and redefined by these struggles.  I am grateful for these past twenty years.  Today is an anniversary that I celebrate!

Hold fast, a cure is on the way!

P.S.  This month my sister's women's soccer team is honoring me in the Commodores Compete for a Cause that is being held at Vanderbilt University.  It is a competition between the sports teams to see who can raise the most money.  The money raised by her team will be donated to the Pulmonary Hypertension Association.  Click here to learn more and donate: Women's Soccer Commodores Compete for a Cause - Razoo

Get Up and Get Moving!

By Kiara Tatum

February is Heart Month, and it’s time to get active.  Having PH slows us down, but don’t let it prevent you from physical activity. There are plenty of ways to move your body throughout the day.  Here are six helpers to get you moving:

1. Complete 30 minutes of physical activity a day.  This 30 minutes can be two or three segments of 10-15 minutes if you can’t do 30 minutes at one session.  Chair Yoga and Pilates are great workouts for people with PH.  But talk to your PH doctor before starting any exercise regimen.
2. Go for a walk.  I know it may be cold out now for some, so wait until the warmer temperatures.  You can take a 30 minute walk around your neighborhood.  If you have a dog, take him/her on the walk with you. If capable, go on a nice nature walk or hike with family and/or friends.  The inclines and not smooth paths are challenging, but are a great workout. 
3. Plan physical outings.  Trips to the mall for window shopping can be great exercise for you, your family and/or friends.  It keeps you walking and talking, and not sitting on the couch watching television.  A couple of weekends ago my friends and I went bowling. It was a great physical workout for me, and I spent quality time with my friends laughing and attempting to bowl.
4. Do housework.  Vacuuming the floor, dusting, sweeping, taking out the garbage, doing your laundry are great physical activities to keep your body moving for a while. Cleaning can be hard work, so go at your own pace.
5. Turn up the music and dance.  If you love listening to music, try music that makes you want to get up and dance.  I love to listen to Taylor Swift’s Red album because it makes me want to move.  I have great fun dancing and singing along to my favorite songs.  Whether you’re good or bad at it, dancing means your body is moving and grooving to the beat.
6. Play.  Play video games with the Kinect or Wii for movement.  Playing jump rope, hop scotch, or just playing uses energy, and you don’t even realize because you are having fun.  Playing with my nephews and nieces always takes lots of energy, and afterwards I’m always ready for a long nap. It also gives me a chance to behave like a kid again and have some fun and laughs with my family.

Remember that doing something each day and keeping yourself moving is better than doing nothing and staying sedentary.  It can help your heart get stronger, especially for those with PH.  Do what you can, do something you enjoy, have fun, but more importantly get moving!

Another Love Story

By Kiara Tatum

 

February is American Heart Month, and it’s almost Valentine’s Day.  I don’t have a sweetheart for Valentine’s Day, but this year I do have someone in mind that I would like to show my love.  That would be me, myself, and I.  I’m always hoping that each year I will find someone to love me for me despite my illness, but I haven’t found that one yet.  Which doesn’t surprise me because how can I love someone when I can’t even love myself with PH.  So this year, I’m going to love myself. Sounds easy enough; however, with PH, I don’t always love this life.  How can I love myself when I don’t like my circumstances?  How can I love myself when I have to take medication throughout the day?  How can I love myself when I have to drag around supplemental oxygen?  How can I love myself when I have to change my medication pump every 3 days?  How can I love myself when I…?  So sometimes life can be hard and I just don’t want this life and I can’t love the person that is going through this journey.  But this year, I’m making it my goal to learn to love myself more.  Not just on Valentine’s Day, but each and every day.
To help I refer to the love experts… romantic movies.  The formula usually is boy meets girl; boy loses girl; boy gets girl back.  Within this scenario, there is always some conflict why the boy and girl can’t be together.  Sometimes the girl doesn’t even know the boy exists, or the boy is only a best friend to the girl, and the girl dreams of someone else that she is supposed to be in love with.  Well in this PH journey, the boy is actually yourself, and when you were diagnosed with PH you lost yourself, maybe you lost friends, your job, control, and your lifestyle.  PH is the conflict standing in your way to loving yourself.  So we have to find a way to get yourself back and that is the journey of love we are going on with ourselves.  The journey to win yourselves back and fall in love with yourself.  Here are 5 simple ways to love yourself.

1. Get to know yourself.  The best way to do this is to start journaling.  You are more honest with yourself when you know no one else is listening.  Using guided statements, quotes or questions such as what’s on my mind?; what’s missing?; what keeps me fulfilled?; what are my favorite things?; what is my life like now?; what makes me happy, smile, laugh?; who am I now?; list how you a wonderful person, list things you love, have a conversation with your 99 year old self, etc.  You can find more examples of guided journaling statements and questions online, CreateWriteNow or in journaling or books.
2. Spend time with yourself. It’s great to just have alone time.  I like to listen to music and dance, go for a short walk, watch a good movie on Netflix or On Demand, do something creative, or just think.  It’s great to know what makes you smile, laugh, and happy.
3. Create a personal visual board.  This is a collage of images or words from magazines, books, photos, or from any other materials that resonate with you.  Cut those images and words out and paste on a big poster board.  When finished, look at the board and see what it reveals about your personality and preferences.
4. Do something different.  If you are always doing the same thing, you might lose interest in yourself.  So try a unique or a different activity: take a yoga class, try a new hobby, etc.  You will start to reconnect with yourself and discover more strengths.
5. Redefine your life.  You have been diagnosed with a chronic illness, and it caused you to lose your past lifestyle.  You may not be able to work or attend college classes, but that doesn’t mean you’re not productive, not successful, or not valuable.  You have to redefine those words for yourself according to what your life looks like now.  You have to show yourself some compassion and not criticize yourself for your life not looking like it once did since your PH diagnosis.

I met me and knew me, but then I lost that old me when I was diagnosed with Pulmonary Hypertension.  By getting to know me and spending time with me the way I am now, it’s helped me to fall more and more in love with me and build my self-esteem.  That girl I stare at in the mirror is more than just a girl with Pulmonary Hypertension and a congenital heart disease.  Sure she has thin hair from the medication, and dark spots all over her belly from injection sites and tape marks.  Lips are dry and a bluish color, and she has to wear a nasal cannula that connects to oxygen concentrator.  That won’t change.  But she’s more beautiful than ever before because she’s got beauty that can’t be seen but shines from within.  She’s got strength, hope, faith and love.  She’s got strength that can climb the highest mountains.  She’s got hope that soars with the birds, she’s got faith that can conquer any battle on the field, and she’s got a love that dwells deep in her heart for herself and others.  She always has a smile and a positive presence despite the hardships of her life.  That’s who I love and I’m falling in love with me.

So sometimes it’s not about finding another person that you can love and fall in love with.  Falling in love with yourself and loving yourself more can be more empowering to you than you know.  This Valentine’s Day love yourself and spend more time with yourself.  Enjoy American Heart Month and Happy Valentine’s Day!