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30 Days of PH : Trusting Your Gut and Doing Your Own Research
As we launch our 30 Days of PH initiative for 2021, this is Day 1, Carol’s story.
In her 30 Days of PH story, Carol shares how trusting her gut is crucial with any rare disease like PH. Trusting your gut is more than being your own advocate; it is doing your research too.
Without trusting her gut and doing research, Carol may not be with us today. She was diagnosed almost 18 years ago with PH, despite what several doctors told her.
Many of you here know @cdvol3gmail-com as an essential member who supports all in the forums. We are all thankful for Carol and her contributions.
We thank Carol and wish her the best as she continues to be her own best advocate.
Did you take away any important tips from reading Carol’s story? Do you trust your gut when dealing with PH?
Carol’s story is on our Instagram! Please go check it out and give us a follow so you don’t miss out on any #30DaysofPH stories.
We are just kicking off this year’s stories and are grateful to have you follow us along this journey.
Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.
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5 Replies
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@cdvol3gmail-com thank you so much for sharing important aspects of your story. Many people are acknowledging it on Instagram and Facebook. In fact, a few have asked if you can share what the dressing is called that you use in the shower. If you can tell us here I will answer the people on social media.
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Hi Colleen,
The dressing I have been using first to waterproof up for SubQ and now I cover my IV site. It is AquaCel Foam it is made by ConvaTec. The special pharmacy Accredo will supply it.
It is waterproof, comes in different sizes ( I use 4″×4″). It is the only patch that does not create any issues with my skin. It is made as a wound dressing. I put it right over my site and am able to keep it there for a up to 7 days in and out of the shower.
When I had SubQ, I was able to swim with it. For the IV site I put it over the bio-patch to make sure the site is protected.
I hope this helps.
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Thanks for sharing that vital tip, @cdvol3gmail-com. I know many who use a similar dressing. This will improve the quality of life for those who are reading your story.
Thanks for posting that question here, @colleensteele, and for relaying that answer to our readers following social media.
Again, thank you both for sharing such an important story and this tip.
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Hi @cdvol3gmail-com .
Thanks so much for sharing your story.
It is very inspirational and offers some very good advise.
We all know our own bodies better than anyone else does.
You have given me hope that I can learn to make myself a priority so that I can be here a long long time.
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Hi Susi,
Thank you for your note. It warms my heart that you feel that my experience helped you.
Susi, you have been up so many mountains and though so difficult you have managed to move forward and take on whatever comes your way.
I know you have the strength and the will to believe in yourself. You’re right, each of us have our own battles. But knowing we have love, caring and support it makes our journey that much easier.
Lots of hugs ???? filled with love,
Carol
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