List of the most popular hashtags for theme #PHAWARE

Discharged baby, discharged! Thankful for the doctors and nurses I’ve had this week, but see ya later losers cause I’m out ✌

Just chatting with Penny 2.0 about her diet and how heavy she is. Jk, but really, this chick is a beast to push and pull around for my daily (all day) walks to keep occupied here in the ICU. The docs officially know what the infection is, so we’re on our way to treating it and getting the old Penny back. I’m shocked that I miss her Here’s to getting better and getting fresh air before I lose my mind.

Ever wonder what I mean by “mix my meds” or say “I’m a chemist” here ya go in 39 seconds- the nightly 20-30 minutes of my “mix” #pulmonaryhypertension #phaware #veletri #flolan #mixing #chemistry #athomechemist #IVmeds #mixing #chronicillness #spoonie #pulmonaryarterialhypertension #phwarrior

@zainbhikhaofficial In December 2017, just a few days before she returned to Allah, I visited my little princess Humayra at home. She sat with me, took me on a tour of her dollhouse, and recited a beautiful and inspiring poem that she wrote all by herself. Her words moved me to tears. Despite the battle she fought against #pulmonaryhypertension, and despite knowing it was fatal, she remained resilient. Her spirit will forever inspire the lives of so many, even if they didn't know her personally. This part of her poem in particular reminds me of how wise she was, beyond her years: "So no matter what struggles I face, I know that I will be strong and brave And you can too Discover the best of you And until the end, we never give in Always look up, and get back up again..." Please make dua for Humayra and her family, and let's do what we can to remain #phaware. To learn more, see @ph_kids_sa @phaware

Thanks for the warm welcome into the PH/ chronic illness community on the gram. Having a serious long term condition can be a rollercoaster - tell me one thing you do to make yourself feel better? I like to get outside and get some fresh air and some sun on my face - but winter is making this less appealing! ❄️

It's pretty cool that I get paid to take photos. Did you know I also get paid to write? You can read about the hike to get this shot in my column, "Life After PH," on Pulmonary Hypertension News.

It's surreal in the worst way possible to have taken some of the last photographs of my friend, Serena. She passed away Wednesday night, 5 weeks after I took this. Serena and I shared a diagnosis of pulmonary arterial hypertension, and a dark sense of humor about our disease. She hired me on as a columnist for Pulmonary Hypertension News in July 2017, a year after my heart-lung transplant. I continue to have a platform to write about my experience with PH and transplantation because of her. In June I booked a one-way flight to Toronto for the chance to meet Serena in person. I hadn't worked out the details far enough to book a return flight, but thought, "YOLO." Now I'm sitting here heartbroken, reminded of why I take spontaneous trips, why I work so hard to document life through words and images, why I try above all to be loving. I wish we had had more time, I wish I had taken more photos, I wish I had hugged her more tightly. My "transplanted friends" and I joke that "You Only Live Twice (YOLT)," because we were blessed with second chances after end-of-life experiences. Unfortunately, most people, Serena included, don't get that second chance. That's why we have to act like there won't be a "next time." Say/write/make what you need to, and do it today. My takeaway in this time of grief is to follow Serena's example: LIVE FIERCELY. I hope you do, too.

Spending a good chunk of my Monday in waiting rooms. Would rather be home editing, but health comes first. Annual heart transplant check up went well. I still get emotional during echocardiograms. My donated heart is strong and healthy so the tests are quick and easy. The gift that keeps on giving! Here's a throwback to a photo I took just after my heart-lung transplant surgery, over two years ago. Shout out to the nurse who let me photograph her giving me my morning cocktail of immunosuppressants and antibiotics. ❤️

These last 2 weeks weren’t easy. I knew my Pulmonary Hypertension was getting worse and worse, but not this fast. Tuesday and Wednesday before I went in I wasn’t able to move from my bed very well, and I was on oxygen all day. Due to my Pulmonary Hypertension I was admitted on Thursday, September 6th 2018. I went into the hospital expecting a few things to do here and there, but nothing major. I ended up spending over a week on Vasopressin and Epinephrine, got an arterial line, PIC line in and a few IVs. This was all to prepare me for a major procedure, a PDA reopening. The PDA is a vessel in the heart that most people have closed by birth. When I was born mine never closed, it was actually so big that when it was time to close it they couldn’t use a regular block. Instead they had something from a completely different procedure that worked to close it. I have had it closed for 10 years, due to that we knew going in that it would be difficult to open again. I am so blessed that my cardiologist is so stubborn to get this PDA opened that he wouldn’t give up. After 8 hours of fighting to get through my PDA, he did. This procedure was a week ago, September 13th. Being the patient who had the highest pressures Ever seen in Texas Children’s Hospital (my pressures were over 200) I had an unbelievable recovery. I worked so hard everyday to get home as soon as possible. That recovery in the hospital was exactly a week. I was the happiest I have ever been knowing I get to go home today (September 20th). Although I am out of the hospital, I am not done working and getting stronger. With my pressures going from over 200 to 130 I still have severe Pulmonary Hypertension, but it isn’t the worst. (To give you an idea of how high that is, someone without Pulmonary Hypertension has a pressure of 20’s) thank you to everyone who prayed and believed that I could fight through. #phaware #pulmonaryhypertension #phighter