I Am ‘Worth the PHight’
Welcome to Jen Cueva’s “Worth the PHight,” a new Pulmonary Hypertension News Today column.
Hey, y’all! I am happy to be here writing this column, and I hope it will help others out there who are PHighting this same PHight. Living with pulmonary hypertension (PH) for the last 14 years, I have experienced the same struggles and ups and downs as most others living with a rare illness. It hasn’t been easy, but it definitely has been “Worth the PHight.”
I am a “well-seasoned” PH patient, so while I was brainstorming about what my first post would entail, I came up with a handful of topics. I finally decided to write about why I am worth the PHight.
A little about me
My name is Jen. I was diagnosed with PH in February 2005. I know this may sound like a lifetime ago for someone living with an incurable disease that used to have a life expectancy of just a few years. I definitely am proving many doctors wrong as I continue to PHight, and remain hopeful as we work toward a cure for this life-altering disease. My goal for this column is to help others who may be starting out on their PH journey, as well as offer tips to well-seasoned PH patients.
Some may ask why I am worth the PHight. It’s because I am a living, breathing, loving soul who deserves to live the best life I can. I was created for this life. I am a mother, wife, daughter, and friend. These reasons are enough for me to continue this PHight! Do you want to know something? I think that you are worth the PHight, as well.
I wish I could tell you that my days are full of positive vibes and happy tears. In reality, they’re filled with fatigue, chest pains, tears, shortness of breath, fears, and anxieties. Then there are the lab appointments, doctor appointments, and miscellaneous medical tests. Life with a rare illness is a busy one. It can often feel like a rollercoaster ride; you never know whether your day will be uphill or downhill. It can change in a second, so just buckle up, hang on, and enjoy the ride!
You know how they say “it takes a village to raise a child”? We who live daily with such an overwhelming and unpredictable disease need the village, a team, and loving support! I know I would have never made it 14 long years without my loving and caring support team. If you’re reading this column, you are likely a patient or a caregiver, or know someone who has PH. I am grateful that you are here. Together, we will continue this PHight!
I hope that that sharing my daily struggles and ups and downs in living with PH will benefit others. Bringing a little hope and joy into those tough days is my purpose in writing this column.
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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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
About the Author
Carol
Jen
We have talked before you were such a comfort to me when I was going through my
Tough time with my mothers passing .This disease takes so much it’s hard for people who are well to understand you look ok so what’s wrong u tell them and they just look at you.
Your column was said it all the good days followed by bad days can’t breath and the list goes on.
Much love
Carol
Jen Cueva
Thank you so much Carol! I’m glad that I could help you in such a difficult time. I hope you’re feeling less side effects with your meds.
Cathy MacLeod
Wonderful writing. Thank you for sharing. ♥️
Love you my friend 😘
Jen Cueva
Thank you sweet friend! Love ya too 💜
Ruby Midkiff
Jen has been my friend since I was diagnosed and we met on phassociation.com. She continues to be my PHriend and she will us wonderful advice. She knows this roller coaster first hand!
Jen Cueva
Thanks for such kind words, Ruby Nan! You as well know that roller coaster ride. Hugs ya you 🤗
Shanna
I'm going through a real Rocky patch at the moment. Most times it gets so hard physically as well as mentally. Just learned I have to have hysterectomy but I can't have anesthesia. I've been told I could never be incubated cause I would never come out of it. So doctors think they can do surgery with an epidural. Hopefully it all works out. I also have multiple health issues that had to be considered as well. It's a mess.
Jen Cueva
Shanna, I’m so sorry you’re dealing with such a Ricky patch right now. Please know that you’re not alone! I don’t know if you’re aware of our PH forums, but I think you’ll find some support there as well. I do know other PH patients who have had hysterectomies and no issues . I know it’s best to have your PH Specialist on that team as well.
Here’s a link to our forums. It’s simple to join.http://pulmonaryhypertensionnews.com/forums/forums/
Joan M Egan
This disease has effected my life too! I look good on the outside but no one knows how much I am suffering inside. Some days are so difficult!
Jen Cueva
I know that feeling all too well, Joan! You’re not alone. Hoping you have a better day today .
Robin Webster
Yay, Jen! I'm so excited to see you're writing a column! I didn't realize you'd been PHighting so many years. That always gives me hope when I hear of someone who has really endured with it. I look forward to reading your tips.
Jen Cueva
Thanks Robin! Your kind words are appreciated. I've been missing you in the forums. I'm glad I can offer you some hope! I hope you and your family have a great 4th of July weekend!
Marilyn
Hi. I am going through Pulmonary Hypertension at this time. I was just diagnosed and I really afraid. I know there is no a cure and my doctor was me to decide to go to a clinic for testing or take medication. I really don’t know what to do. I need advice from people who are going through this. Please Help
Jen Cueva
Marilyn, you're not alone! I'm sorry you are having such a tough time with this diagnosis. It can be overwhelming. Please be sure that you are being seen by an actual PH Specialist and know that although there is no cure, yet, you can manage PH with many different medications. Everyone is different. I would like to invite you to the PH forums where you can learn more and get support, too. Here is a link if you want to sign up and myself and others would be happy to offer support. http://pulmonaryhypertensionnews.com/forums/
Angie
My wife is one month into her diagnosis and day 3 into her pills. She is doing very well considering the circumstances, it's just very hard seeing her this way. She is an autism teacher and had to give that up and move into regular ed. She loves what she does and it just tore her up. I stay very optimistic but inside I hurt so bad for her! I continue to pray for her and everyone going through this. Seeing her encounter with the side effects of the medication is very sad, I've spoke with a few women that had it worse and they are doing extremely better and are very optimistic. I know she will improve with the medication this this just very new and very hard.
Jen Cueva
I am sorry to hear of the struggles of PH that you and your wife are going through. I know that PH affects you both in so many ways. My husband is such strong support for me and it sounds like you are to your wife as well. I am sure, like myself, that she appreciates you more than you know. Please be sure you are taking time for yourself, too.
I hope that she will see improvements with her treatments so that she may continue her passion for teaching. I agree, the side effects can be awful, but for myself, the worst side effects are always the first few weeks. This is because our bodies need to adjust to the medications. I wish you and your wife many days of love and support of one another.