Websites That Offer A Place to Update and Gather Support
When battling Pulmonary Hypertension there is a lot to deal with such as hospital stays, procedures, treatments, fluctuation in health improvement and decline, disappointing moments as well as personal achievements conquered, and family and friends asking for updates about it all. You want and need people to care, not to mention you could probably use some help, but having the time and energy to communicate with everyone is not easy. There are wonderful websites out there that can help a great deal by offering a place to give medical and personal updates as well as receive messages of encouragement. They can also be used to organize meals and other offers of assistance from family and friends.
Have you used any of these websites and if so, which one and how did it help both caregiver and patient? Personally, for the past 10+ years, my family has used “Caringbridge” for my son. Not only has it provided a helpful spot to provide updates and receive messages of support, but it’s also been a therapeutic experience maintaining it. This website is also our go to when we need help remembering when something took place or just to look back and reflect on my son’s PH and transplant journey. It’s also been an excellent way to spread PH awareness. There have been so many benefits! We have also known people who have used “Lotsa Helping Hands” and found it very helpful, especially in coordinating volunteer support. I have shared the links to both in case you want to explore this suggestion.
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