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Hey girl!
It’s great to hear that your boyfriend is so supportive and understanding. It can be so hard to be having a hard time mentally especially because without talking about it, nobody would really know all the pain you’re going through on the inside. That’s what has always been hard about mental illness in my own life is gettin people to…[Read more]

Lesli,
That’s amazing to hear. Water has helped me so much with flushing out my system. I feel like it is the best “detox” out there. Especially after all the procedures I have been getting that require some level of anesthesia or sedation, it’s important to flush out the system as best as I can. Do you just drink these liters in water or do you…[Read more]

I’m consuming a more than 3L water daily, and Feeling a fresh and active on work and healthy as well.

Thanks for explaining your defect and what the surgery will do – I have been a bit fuzzy on it. I keep telling my friends and family about how amazing you are and how you haven’t been able to eat for months, but I didn’t know enough to explain why (that’s probably on me – I will remember this time). I’m so glad you have a surgery date and can have…[Read more]

Hi Cindy,
Absolutely! I’m glad that your team comes up with a care plan for the anesthesiologists beforehand. Even if I already know what the plan is because of the multiple surgeries I’ve had after being diagnosed with my breathing condition, I still find it comforting to treat every surgery individuallly and to have my team map out a care plan…[Read more]

You’re so right, Cindy
It’s so hard to stay away from all the hussle and bustle of airports and usually the long security lines. If I fear waiting long in lines for security or don’t think I can stand around for too long I make sure to arrange for a wheelchair provided by the airport and usually go in through a disability access which is a…[Read more]

That’s amazing to hear that you are being treated at a PH clinic and that it is well worth the trip to get there ! Where I go is a little under 2 hour drive (I am from Rhode Island but my care is in Boston) . It’s worth every hour spent on travel when you find a good team that you can trust !

I have had to be go under anesthesia twice since my diagnosis in 2012. My PH doctors conferred with the anesthesiologists both times. My PH doctors have made it quite clear that it is important that the anesthesiologist know you have this disease or any diseases for that matter. But with PH I was told if you want to make sure you wake up, there…[Read more]

I know it is exhausting if you have to walk to gates in large airports. People are in a hurry and walking slow some seem irritated that I do. I am just happy to see a place to sit and catch my breath.

I have had 4 since 2012. The last one was back in October. My pressures were up, but that’s to be expected, somewhat. I do regularly about every 3mo sometimes 4mo see my doctors at UTSW in Dallas. They have a wonderful PH clinic. I live about 330 miles from Dallas. It worth the travel. It is a great clinic with doctors that treat me like a p…[Read more]

Libby,
I can definitely understand the surgery concept. I’m getting a heart surgery on my aorta in May and it is the second major surgery i will be going through with my boyfriend. We have grown a lot since the first one but the thought of surgery definitely still terrifies him. I find that a lot of times I do put on a brave face for those I…[Read more]

I think because my spouse has known about my health issues from the beginning, it hasn’t caused me to put walls up. He knew, full disclosure from the start and that was helpful. I had some insecurities the first few years about my body because I have a giant open heart surgery scar, gallbladder surgery scars, and so many others. But he says he…[Read more]