10 Lessons PH Has Taught Me in the Past 17 Years

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by Jen Cueva |

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I’ll never forget the day I knew something was wrong with my body. It was sending me warnings.

The symptoms included increased shortness of breath from minor activities like talking, presyncope, which is the sensation of nearly fainting, heart palpitations, and swelling in my abdomen and lower extremities. I knew it wasn’t just my mind playing tricks on me — it was real.

As I approach 17 years with pulmonary hypertension (PH), this milestone reminds me of how far I’ve come despite the multitude of obstacles I’ve faced. Seventeen years later, I continue not only to survive, but to thrive.

For some reason, this year has me deep in thought. So, it’s a good time to reflect on some of the insights and lessons PH has given me. I’ve managed to narrow them down to 10 things I’d like to share with you.

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Lessons I’ve Learned From Both Good and Bad Healthcare Providers

1. Lean on others: If you’re like me, you tend to self-isolate when you’re feeling bad. But this is when you need the support of others most. Acknowledge and accept that others want to help you, but they probably have no clue how.

2. Allow yourself grace: My good friend and fellow columnist Jennifer “Jenn” Powell, who has multiple sclerosis, reminds me to give myself grace. She has been such an inspiration. Although we’ve only known each other a few years and haven’t met in person, she’s a gift. When I was recently dealing with COVID-19 and its aftermath, she was a tremendous support. I can’t count how many times she has reminded me to offer myself grace.

3. Make peace: You will never be the same again, so allow yourself to grieve your old self, but then learn to accept that many things are out of your control. Acceptance can offer peace of mind. Once we accept this, we can adjust to our new normal.

4. Feel your emotions: Like a roller coaster, life with PH will have many twists and turns. It’s OK to feel a multitude of emotions. Feelings of sadness, isolation, guilt, anger, and confusion may pop in anytime. Allow yourself to feel those emotions without holding them in, then move on. Find help through therapy, friends, or loved ones.

5. Practice self-care: Take care of your body. A rare and chronic disease like PH takes a toll. Learn to listen to your body and know that self-care is critical with PH. Think about how much your body has been through and continues to recover and keep going. Respect that and show your body that it is appreciated.

6. Show a caregiver some love: Those of you who have caregivers, show them the gratitude they deserve. I’ve said it repeatedly, but my husband, Manny, is my lifesaver. He’s watched as I’ve almost slipped away from him on multiple occasions. When we both had COVID-19 in 2020, he told me how he couldn’t sleep, and not seeing me almost killed him. I can’t imagine how devastating this is for him.

7. Hello, boundaries: Saying no is an option and a necessity when living with a rare disease. This is one of my toughest challenges because I worked in nursing before my PH diagnosis. My therapist has helped me create boundaries I never had before. Saying no and enforcing these boundaries helps to protect my “spoons” (my total supply of energy between rests) and my overall psyche.

8. Trust the expert: We live with PH day in and day out; therefore, we are experts about our bodies. Consequently, we are our own best advocates. Speak up when needed and allow your voice to be heard. Educate yourself and others about PH. While a professional may have knowledge, patients know their body best. Doctor-patient relationships should be a team effort.

9. Respect your journey: Don’t compare yourself to others. Because PH is unique and we are all at different stages of disease progression, comparing ourselves to others is pointless. While we can share experiences, we all adapt and have distinct needs.

10. Practice gratitude and optimism: A positive mindset is mighty and can affect our overall health. When you feel like nothing is going your way, try and name three positive things about that day. I’ve learned to keep a gratitude journal, which helps me focus on what I can do instead of what I can’t. While experiencing chronic pain, palpitations, and brain fog, I remind myself of worse days and how I’ve persevered.

Yes, PH changes us in profound ways. But finding inspiration in others and focusing on one step at a time, we can get through this. Together we continue to PHight for a cure.

I’m sure you have insights, too. Please share in the comments below. 


Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

Comments

maryann tremoglie avatar

maryann tremoglie

i was diagnosed 2 years ago. i have always been an active kin d of person. before going to sleep, i make an outline of what i want to do the next day. i guess that come from raising 6 children when every second counted. i am 87 years old and many things are hard about this disease. the fatigue and not being able to walk very far are the worst. i now sleep about 10 hrs every day and must rest for an hour after lunch. i stretch out my jobs around the house now and it takes me all week to do what i did in 2 days before. i am on sildenafil 20mg 3x a day. oxygen is still good but i wish i could get rid of this fatigue.

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Jen Cueva avatar

Jen Cueva

Hi Maryann,
I'm sorry that you too, are battling fatigue that comes along with PH. I am sure that raising six kids helped you learn to manage time and tackle your to-do lists. Yes, many things about PH are complex but, I, too, struggle with trying to be Superwoman, and most days, I can only do little compared to before. I remind myself not to compare my life before PH to my "new normal". Like you, I break down my tasks into smaller tasks and do a little at a time.

I appreciate you taking the time to read my column. I'm also one of the moderators in the PH News forums. If you haven't yet joined us, we would love to have you. It's a place where other patients and caregivers from the PH community share their experiences and offer support. It's simple to create an account after answering a few questions.

Thanks again for reading. Take care.

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Debbie Amori avatar

Debbie Amori

Hi 💐 new PAH woman here. It's taken along time to diagnose and today they finally gave it. I am grateful to finally know what is wrong but scared too. I have all the classic symptoms, AFIB, very shallow breathing, fatigue, chronic hoarseness, severe asthma/COPD, leg swelling, blood clot in leg and now pre-diabetes. I can't seem to get anything done! I was a very busy professional woman and now I can hardly catch my breath walking to the bathroom. I've become a hermit. Did anyone elect to get around in a wheelchair until they got their treatments figured out? Thanks for this opportunity.

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Jen Cueva avatar

Jen Cueva

Hi Debbie,
I can relate to being grateful to get that diagnosis but also scared about the future. I was there 17 years ago. It sounds like you have your share of other coexisting illnesses to manage with PH. That must be challenging.

I have a wheelchair and continue to use it for distances and days when I have rough days and need to get somewhere. So, yes, many do use a wheelchair. You have to figure out what helps you do the things you enjoy and make life easier. Treatments take a bit of time to get right and see results.

If you haven't yet, we would love to join the PF News forums. I'm one of the moderators there. Because you are newer to PH, you may benefit from support from others in the PH community. It's simple to answer a few questions and create an account.

Thank you for taking the time to read my column and share your feedback. I wish you all the best in your new PH journey.

Take care and stay safe.

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