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How has PH changed your life for the better?
Is there any area of your life that has improved since you were diagnosed with PH?
Maybe you are using a creative talent you wouldn’t have otherwise spent much time on. Perhaps your PH diagnosis also pointed towards a coexisting condition and thanks to treatments, that condition has improved. Have you made good friends through, or perhaps, like @mrperry009, you met the love of your life and got married?
What unexpected happiness, big or small, have you experienced because you were diagnosed with PH? Help us picture a ray of sunshine through the storm.
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12 Replies
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Colleen, good thought provoking topic. The only thing I can think of right now is making wonderful PHriends via this forum!
This is one I’ll have to think about…
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@DeLois Tweedy the friends you have made certainly count! I hate giving PH credit for anything but living with the disease does make people even more compassionate, empathetic and strong-willed then they were before…and those qualities make excellent friends! It makes me want to suggest to people outside our community that if they want a quality friend, seek someone who has PH…you can’t ask for better!
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Yes, I agree @DeLois Tweedy , our supportive and close-knit forum members are a huge perk. Would you say you’ve found new hobbies or spend more time doing something you’ve wanted to do since your PH diagnosis?
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Hi Colleen,
I once told the doctor that PAH has been somewhat of a gift. Needless to say, he looked at me like I was crazy. But there are several great things that have happened. First has been this forum. Another wonderful thing that happened was because I was stuck at home the year before and then all through Covid I filled my time on Ancestry. Investigating my ancestors solved some serious family mysteries. Brought new family into my life. One cousin who I met on Ancestry came to visit and decided to move here. She and her husband now live a few blocks away. That’s a treat.
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@Sally Hoffman I love this! In fact, I think it would make a great column. Would I be able to interview you in the future about how you PH linked you to your ancestry? It won’t be for a while. I’m taking a leave of absence from my column until I am settled in NJ but I would really love to write about this!
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Hi, @Sally Hoffman. I LOVE that you have worked on your Ancestry. So cool that your cousin moved close by, and now you can visit and catch up. Did you find anything that you weren’t aware of while researching?
My cousin is working on ours on my late grandmother’s side. Last year, while visiting down south, I enjoyed reviewing the information and sharing what I knew to help fill in some blanks.
That will be such an intresting read, @Colleen Steele . I bet others will be inspired to do something like this, too! I have two close PHriends who have been working on their’s too.
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It has made me acknowledge my mortality and get all of my life in order so that my children aren’t burdened with any surprises.
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@Maryann Winters this is a very good point! Although it’s hard to think about and even harder sometimes to tackle, getting our affairs in order in something really everyone in and out of the PH community should try to do.
My husband passed in April and God love him, he was not good about discussing or planning for the what-if’s. He found it too emotional so he kept putting it off. The what-if happened and there have been a lot of struggles getting his estate in order among other things.
The only thing I knew for certain was that he wanted to be an organ donor, and he was!
What you have done is a very loving thing for your family that they will appreciate a “LONG” time from now!
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Hi @Maryellen Ramstack, although these things aren’t fun to do, planning ahead is so helpful. I worked in hospice before my diagnosis. From my experience with patients and my personal experience. when this is done, it takes so much pressure off those left grieving.
Thanks for sharing as this is something we could all learn and grow from.
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@V.R. Peterson is having technical difficulties and asked me to comment for her. @V.R. Peterson maybe you were trying to post as we were switching to our new platform. Please let Jen or I know if you continue to have problems.
Because of CTEPH, my son met a woman who had some PH training while she was training to be a nurse. Not only did she save his life by finding a competent PH specialist for him through her medical contacts, but he also fell in love with and married her. This year, they celebrated their 7th anniversary.
As for a benefit for me? I’ve met so many people who cared more for complete strangers than most people care for their friends, people who started out as PHriends and became friends in every sense of the word.” -
@V.R. Peterson friendships are the best thing that can come from having PH or being a caregiver, but when love blooms from it…even better! Men sometimes exaggerate how their wives saved their lives, but your son’s wife literally did! Such an inspirational love story!
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What a wonderful discussion topic, @Colleen Steele .
I also have enjoyed reading through others’ responses. For me, I say hands down, my exteneded PHamily here in the forums and online. I’ve had the opportunity to meet several in person, too. It’s crazy how complete strangers end up knowing more about my daily struggles than my blood relatives at times.
I’ve also found my voice. Nope, I’ve never been quiet. But some would be surprised to learn that I was considered the “quiet” sister between my two sisters. So, I’ve found , my voice to help spread awareness and help others. I’ve also learned that I’m stronger than I think and can get through the darkest seasons, especially with the love and support of my PHamily here and around the world.
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