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Mary, please don’t ever feel the need to “shut up”, especially not here. It’s good to hear from you and your experiences help others feel less alone with their struggles. I LOVE that you have conversations with your dogs. Both Brittany and I know how much fur babies are the best form of therapy. My son adopted a dog after his transplant and that…[Read more]

Carol, I’m sorry that was your experience. Unfortunately, doctors and sometimes even nurses, get so use to the routine of explaining things that they lose some of their bedside manner. Something you can maybe try when you are experiencing this is to ask, “Can we talk a moment about how I’m feeling about all this?” Sometimes that’s all they need,…[Read more]

Brittany, I think you just might have found the words that my son had always struggled to find. The emotions that come with PH are seen as a “problem instead of a symptom”. He always preferred talking things through with his mom, dad, brother and best friend, more than certain psychiatrists or psychologists, whose approach made him uncomfortable…[Read more]

It’s funny, we never thought of decorating my son’s oxygen tanks, yet we did the straps and bag of his flolan backpack. Every Halloween and Christmas he used garland, stickers, pins, etc. to style it up for the holiday.

I recently looked at a picture a mom posted on social media of her daughters wheelchair. She decorated the wheels with garland…[Read more]

Scott, thank you so much for sharing your knowledge and experience. I think this is a perfect example of how no symptom should be ignored or dismissed as unimportant.

Brittany,
I know it’s a pain have a lot to carry into the hospital but my son, in addition to his “survival kit” would always bring his favorite pillow and blanket from home. It has always been the two most important comfort items to him, especially when recovering from surgery.

The other things would be ear plugs in case you experience a…[Read more]

Thank you, Dan, for your kind words and helpful feedback. It always nice to hear when the forums are making a difference.

When you mentioned finally finding a nasal mist that works well for you it made me think of what my eye doctor told me about eye drops. He said that many, including a top, household brand, is not what he would recommend…[Read more]

Scott, wow, that is some really important information about HHT that you shared! Thank you! I bet there are many who think that because they are not symptomatic they are not at risk. It sounds like HHT is in need of awareness and advocacy just like PH.

Scott,
Thank you for the information! I know it will help others that are looking for something to help manage these symptoms.

I believe it was the Johns Hopkins HHT center that started using this for HHT patients and many have found it helps with their frequent nosebleeds especially when the air is dry in the winter and when you fly in a plane. I suspect it would also be helpful for those using oxygen. It keeps your nose moist for long periods of time and easier than…[Read more]

Scott,
This information is really useful to know. Thank you for sharing. You’re right that those with frequent nosebleeds should be looking into the reasons why this may be happening to them and can get tested for certain conditions that may be contributing to them or making things worse. It is hard when taking a medication that helps one thing…[Read more]

Denise,
I have seen those on the TV with the fireplace and the relaxing sounds that mimic a fire. Fire has always been something that relaxes me, especially the sound of it and the sound of a big bonfire. You definitely have to be aware of those hidden costs that can happen when downloading apps that are supposedly “free” on the phone. Usually…[Read more]

Hey Scott,
Yes those mist sprays can definitely be drying and can make the nose pretty chapped on the inside. That’s why I never liked doing the saline sprays when I had a sinus infection when I was younger. I used to get them pretty frequently. That’s great that you found a combination of something more natural that works well for you ! Where…[Read more]