Generation Hope Goes to Boston

-->

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