Generation Hope Goes to Boston

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Posted by Colleen Brunetti

On June 8^th, PHA brought their education program “PHA on the Road” to Boston, MA. Doctors, patients, caregivers, and family members convened at a beautiful hotel on the Charles River. It was a day of education and networking, a time to make new friends, and a time to meet up with old.

The day started with pre-forum support groups where newly diagnosed, longer-term patients, parents, and caregivers could meet up specifically. I, along with Kiara Tatum, led the newly diagnosed group. I remember the early days of diagnosis…wondering how to find the right doctor, trying to have confidence in your treatment plan, the worrying and wondering that comes with a diagnosis like pulmonary hypertension. So many patients reached out to support us in those early days – it is a privilege to pay it forward and offer that support for others.

The opening session went over diagnosis, treatments, and long-term management of pulmonary hypertension. No matter how many times you attend these events, a refresher always helps, along with the very good chance that you will pick up one or two new things along the way. Break-out sessions throughout the day offered time to learn about more specific areas of interest, such as exercise and diet, congenital heart disease, and preparing for travel and emergencies.

Colleen with Jeannette Morrill

The highlight of the day’s events for me, as I’m sure for many others, was listening to Jeannette Morrill talk about her journey with PH.  Jeannette has been diagnosed for 37 years!  This is totally unheard of in the PH world - especially as her diagnosis came in 1976 prior to any real treatments being available.  Jeannette's story is one of perseverance and hope, brutally honest in the challenges, and full of celebration in the triumphs.  

Finally, the day wound to a close, ending on a high note, with an overview of clinical trials for new treatments, some perhaps not so promising, but several that may be set to offer new hope for patients.

As the conference wound down, Generation Hopers gathered in the hotel restaurant for our meet-up. We’ve had meet-ups like this a few times before, but it never ceases to amaze me, sitting there watching everyone interact. The connections that happen are nothing short of spectacular. PH can feel pretty isolating, but I could look across that circle and see another mom raising young children while she battles PH, and I know she “gets it”. Two other patients connect as they share news of their pending lung transplant evaluations. What’s it like to be in your 20s or 30s and staring down a full lung transplant? I don’t know. But they do. And when you face anything like this, you need each other.

By far the highlight was sitting in that circle, listening to each attendee talk about their hopes – what gives them hope, or what they have hope for. Hope that children will no longer know their mom as “sick”, hope for a favorable transplant experience, hope to have to use less oxygen, hope for new and better treatments… the hope that binds us together and spurs us forward. Thank goodness for moments like these.

Love and Having PH

Jen Cueva and husband

Whether you are dating, engaged or newly married, having your significant other transition into a caregiving role can be difficult and overwhelming. You may feel guilty for placing a “burden” on your significant other. You may even feel unsure about how to initiate the conversation about PH. You can tell your significant other has a lot of questions too. We spoke to PH patients who have been through this challenging time and received some of their advice:

Build your relationship. Especially if you are in a new relationship, you may feel reluctant to reveal the realities of living with PH and that’s okay. Diagnosed at age 5, Hannah spent her dating years with PH and says she “never made a big deal about [her] disease.” Instead, she notes it is important to get to know each other first. Regardless of your disease state, all relationships are based on mutual trust, care and respect. Once your relationship has a solid foundation, feel free to share as much or as little as you want about your life with PH.

Hannah Lahmeyer, husband, and precious daughter

Be honest. When you do decide to talk to your significant other about taking on a caregiving role, it is important to be honest. You want to make sure you significant other is prepared for living a life with PH. Consider these tips when preparing to talk to your significant other about PH:
1. Encourage your partner to visit the PHAssociation.org/AboutPH to educate themselves about PH
2. Take your significant other to a doctor appointment with you and give your significant other a chance to ask the doctor or nurses any questions
3. Do not hide or exaggerate any part of your diagnosis or medical needs

Especially if you are engaged or considering marriage, you and your significant other may also want to discuss finances. As you already know, treating PH can be very expensive and your significant other may be unaware of the full costs. Ensure you talk openly and honestly about budget and health insurance concerns. If you and your significant other have a tight budget, meet with a financial adviser or visit PHAssociation.org/FinancialAssistance to find ways to cut drug costs and other expenses.

Split up responsibilities. As Kevin, a newly diagnosed patient, admits “daily chores can be doubled, as the caregiver is doing for themselves as well as for us.” Though this may be the case, there are still things you can do to help ease the workload of your significant other. If it is difficult for you to go grocery shopping, consider creating the grocery list and planning meals for the week instead. If your significant other provides the income for both of you, make the budget and find ways to cut costs. On good days, try to wash clothes or straighten up around the house. Even if you cannot do as much as you’d like, your significant other will appreciate your efforts.

Kevin Paskawych and wife

Care for your significant other. Kevin reminds us that your significant other chooses to live with PH and care for you. Don’t forget your significant other has needs and feelings too! Diagnosed in 2005, Jen’s husband did not hesitate to take on a caregiving role. She admits she feels her husband “gets the bad end of the deal” from the ups and downs of PH and works very hard to take care of her. However, Jen does what she can to stay connected with her husband and ensure he remains healthy.

Jen recommends making sure your significant other has time for self-care. Encourage your significant other to take a few hours or a day to spend time with friends and other family members. Look for a fun art or fitness class for your significant other to take. If your finances allow it, surprise your significant other with a massage or spa day. Also, suggest joining PHA Caregiver Mentors or a PHA Support Group.

It is also important to pay attention to your significant other’s mental, physical and emotional health when they become your caregiver. Try to make a daily habit of asking your significant other about their day, and how they are feeling and encourage them to answer honestly. Pay attention to symptoms of caregiver burnout, which include changes in weight, changes in sleep patterns and feeling sad and irritable. If your significant other demonstrates any of those symptoms, consider talking to them about seeking help from a doctor or counselor.

Most importantly, don’t let caregiving get in the way of your romantic relationship with your significant other. Go out for dates, or plan one at home. Complement each other. Laugh, love and most of all have PHun!

By Imani Marks, Patient & Caregiver Services Intern 

Special thanks to Jen, Hannah, and Kevin who contributed their stories and advice for this story. 

Article also featured in PathLight

Like Oil and Water - Work and PH

By Kiara Tatum

The academic school year has finally ended at the college, and my return to work after seven years has a summer break.  It felt great to be working, using my master’s degree in social work, teaching diverse students, having discussions on contemporary social problems, and actually getting paid to work.  I didn't know if I could actually do this, but I wanted to try it—failure or success didn't matter.  I didn't let my fears, anxiety, or self-doubt stop me from pursing this new journey in my life.  

Working and having PH can be a difficult especially if you don’t have an idea as how to start, what job you can physically and mentally do, or support on the job.   For those of you thinking about returning to work and those of you who are working, I have a few helpful tips to share with you that I learned from my own experience.

1. Know your rights as a disabled employee.  All employers have policies, and knowing what those rights are helps get through times when you do have to miss work because of your illness.  After my hospitalization at the being of the spring semester, I learned that I had the right to cancel classes, and it was based on how many classes and hours of each class that determined how many classes an adjunct instructor could cancel before it impacted your contract with the college for the semester.  And even before my return to work, I met with a disability advocate that helped me to understand my Social Security Disability Insurance when I start work.  I found that to be most beneficial to me because I didn't want to lose my Medicare insurance because I wanted to try work again.  Disability Law Handbook 2013
2. Don’t do it alone.  Each state has an organization to assist those with disabilities to return to work or assist with maintaining employment.  Find out what your organization is and go to them for help.  They have services from job readiness workshops to job coaches.  I met with an advocate to help me navigate the different systems that were involved if I decided to return to work.  I met with her almost a year before I actually decided to look for employment.  There are people who know these policies and advocate on the behalf of the disabled.  There is so much I have to do to maintain my Medicare medical insurance as well as my Social Security Disability Insurance, but I didn't lose those necessary benefits despite going back to work.  I even received information on transportation options for work since I don’t have a car and can’t rely on my family to chauffeur me to and from work. Social Security Administration and Work Site
3. Don’t hide your illness.  The whole company or in my case school doesn't have to know, but at least your direct supervisor and a close colleague or two should know that you are diagnosed with PH.  This will help you when you have an emergency at work, have to take a sick/personal day, or need support on the job.  I always feared that I wouldn't be able to find employment because of my oxygen tank travelling with me.  But I felt very comfortable interviewing for the job, and I obtained the job based on my knowledge, skills, and experience.  I couldn't hide my illness, but I didn't feel the need to hide it.  Slowly I shared my illness with a few colleagues once I felt comfortable, and some colleagues were curious and did ask.  I shared the PH diagnosis with my students on day one. I wanted them to be comfortable in the class and not staring at me during a lesson.  It especially helps when I’m having a not so good day or have to cancel or miss class.  
4. Give yourself a break.  Whether it’s a summer break, a week’s vacation, or a personal day, take that time.  I may not have a full-time job, but teaching is full-time work.  I have to create class lessons with attention grabbing activities, create and grade assignments, exams, and projects and be supportive to the students.  It’s a lot of work, so the summer break will be a great way to rejuvenate myself and spend leisure time with my family and friends.  You need to have “you time” every once in a while.  
5. Do it your way.  Sometimes how others do the job may not be the way that you can do the job, so do what works best for you.  Because I have a chance to be creative when teaching, I don’t lecture the entire time.  I have break-out sessions for students to participate in small group discussions.  This allows me a chance to breathe and relax if I need it.  Also a chance to blow my nose and drink some water—I use oxygen supplement, so my nasal passages aren't the best and I’m always dry and thirsty.  Sometimes employers are able to assist you with the right equipment needed for you to do your job efficiently for you.  Just ask your supervisor, which is also a reason you don’t want to hide your PH diagnosis.  This gives you opportunity to be creative and persevere despite having PH.  
6. BYOL – Bring Your Own Lunch.  I did notice that I was retaining fluid more during my work days because I was eating at the college rather than preparing food at home.  I tended to eat more unhealthy foods such as bacon, egg, and cheese breakfast sandwich and for lunch turkey sandwich with mayo, lettuce and tomato and a side bag of chips.  To a healthy person this would be okay, but for someone on a low sodium diet bacon, cheese, and turkey cold cuts are on the list of foods not to eat.  So by preparing healthier meals at home and bringing them with me, I was able to control my fluid retention easier.  It’s not fun working and being short of breath and lightheaded because you’re eating the wrong foods.  
   
7. Prepare ahead of time.  With PH, you can wake up have a bad PH day.  So by preparing the night before or preparing Plan B and even Plan C or D; you can still work despite not feeling so good.  Lay out your clothes out the night before, utilize a planner for your schedule for the day in advance, and give yourself at least two hours in the morning before you have to leave for work.  You would have plenty of time to shower and dress for work, to eat a healthy breakfast, to prepare a healthy lunch and a couple of healthy snacks, and to relax and not rush in the morning before having to leave for work.  I like to watch the news in the morning before I leave for work, so I leave myself about three hours before work.  And when I get to the college I have an additional two hours to review my lesson plan and make copies.  If I’m having a not so good PH day, I can change my teaching style for the day.  I may have more break-out sessions as opposed to me lecturing for class.  I can also incorporate an activity to go along with the lesson, so I have a lot less work to do.  I also may sit rather than stand during lecture if I'm not feeling so well.  But I allow myself to have options.  Maybe at your job, you can do a day of paperwork from home or something less strenuous on the job that wouldn't require you to lose a day of work if you’re having a bad PH day.  
8. Don’t be so hard on yourself.  I know sometimes you want to push through and be like every employee or even go beyond what’s expected of every employee, but your body won’t always allow you to do it.  And that’s okay.  I know that if I can’t come to the school because I’m in the hospital, there’s nothing I can do.  I also know that it’s okay that I can’t come to the school on a different day from what’s scheduled with the bus company, but I won’t let it keep me from supporting my students any way I can.  If I can’t grade an assignment because I needed to take care of me; then I have to just do that.  I think this was the hardest lesson for me to learn through my work experience, but I’m always ready to relearn this lesson as new challenges comes my way, and I have to let go of my issues because it is my issue.  Everyone else was okay with me having to say no, but I just wasn't okay.  I have students who said I was an inspiration to them; I had students that wanted to know what other classes I would be teaching, so they could register for those classes.  I even had students tell me that I was their favorite teacher this semester.  So sometimes by being different, being more creative, and being honest have a way of benefiting others just not yourself.  

This academic year has been exhausting and stressful but fantastic and exciting.  I can't wait to do it all over again fall semester.  I met so many new people with different personalities, and I had so many different conversations on various topics, and I just socialized with regular people.  Going back to work a rewarding experience for me because I felt like I was productive.  I haven’t felt so good in a long time.  And it is possible to work and have PH!

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!