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How do you handle disease progression, whether it’s PH or other coexisting conditions?
Managing PH and other rare, chronic conditions is never easy, and that’s no surprise. Recently, I opened up about my chronic kidney disease (CKD) progression, and your support has been incredible. Inspired by this, I penned a piece diving deeper into how I cope with disease progression. In my latest column, I reveal moments when I felt defeated and needed time to handle the swirl of emotions that hit me.
Are you curious to know more? Check out the full article using the link below.
Learning about disease progression is a bitter pill to swallow
Let’s talk about this! How do you handle disease progression, whether it’s PH or other coexisting conditions? -
4 Replies
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Jen, I felt so bad when I read your article about how your chronic kidney disease is worsening. I wanted to reach out and hug you! You have been so upbeat, even when you are feeling low, please don’t let this get to you. You have Manny on your side, and your daughter. Talk to them, talk to them!
As for myself, I’ll know in 2 weeks if I”m holding the status quo or not. I see my PH cardiologist and do my 6MW on the 28th. I do feel like I am more breathless more often than I would like.I intend to talk to her about that. But I pray I have a good day and all is well!
On a happier note, Tim and I will be traveling around IL all next week to see his clients. I’m looking forward to an entire week of no cooking!
Do take care, my PHriend! Love and hugs enclosed.
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Aww, thanks for the love, support, and heartfelt words of encouragement, my PHriend, @Terese Tuohey . I can feel the hugs from back in August. 🤗
I am doing well emotionally. Manny and I have talked about this a lot lately. As always, he is a tremendous support and caregiver.
I’ll keep you in my thoughts and prayers on the 28th that you do well and receive some positive news. But I’m sorry to hear you noticed an increase in SOB. It’s frustrating to see these changes. Maybe this is a random occurrence or season. However, please do let us know how it goes on the 28th!
Woo-hoo, that’s your weekly win, Terese; no cooking for a week! Safe travels to you and your love and time! Enjoy, and we will be waiting for that update soon.
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Dear @jen-cueva sweet friend. You have and do work so very hard juggling all your chronic health issues. You continue to be strong through all worsening issues that seep in. You allow your vulnerability to be out there, you refuse to give in. Jen, you gather up and feel your emotions, feel your physical fatigue and above all you deal with it. You reach out to your love ones and share your heart of hearts.
Reading your article brought tears to both Dick and myself. I was recently told ( I cannot believe this) to look to see how I feel and not just go by the numbers. How you feel takes center stage.
I love you Jen and I know we are are going to be around for a long long time ’cause that’s the way we feel! 🤗❤️❤️
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Now, you have me in tears, my dear PHriend,. @carol-volckmann .
Your thoughtfulness in leaving me a message that was so touching. You made my day.💜
You’re right; we are dealing with these things and can feel the emotions, but we must also keep in mind that we can get through this together. We’re constantly faced with challenges and difficult situations in managing PH and other health struggles.
However, it is essential to remember that we are not alone. We have each other for support and comfort. A kind message or gesture from someone like yourself can make a huge difference in our day and lift our spirits.
I give much gratitude to you and all of our supportive forum members.
🤗
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