Hi Julie, everything keeps getting hacked now a days, it is a shame we have to worry so much about that. Our local doctors took a while to get use to the portals and didn't answer them as quickly as the larger teaching hospitals did but now they have gotten better with them. I will have to see how my new PH specialist will be when I see him the first time the second week of December.

Julie, it came up on my portal for my local hospital that asked if I would like to link to others. I then listed those places and checked that I wanted them linked to my portal since part of my care team was up north an hour away. It is not as good as if they are all on the same portal but it helps. I can do some testing closer to home and my care teams have access to it. I just send a note in the portal to my doctors so they know to go in and look for it. I actually have some great specialists that are very willing to work with each other and my primary. It helps to be able to communicate!!

@A myPHteam Member That sounds incredibly ideal except the managing your case yourself. It's always nice to be able to say that you feel like you are in safe hands with the professionals treating you. I think about the fact that this time last year, I was just getting started with the meds and trying to figure life with a newborn and PAH out. I thought I was in good hands, and maybe I still am, but I don't feel good about my team anymore. I hope that you continue to be able to advocate and care for your own disease - it's something a lot of us take for granted I think.

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A myPHtea...

I am quite blessed to have an excellent team of medical professionals. My PCP/Internist tends to take the lead. She acts as the gatekeeper. Because things change quickly, I see her every 2-3 months. My pulmonologist manages my PAH and other respiratory needs. She and my PCP communicate regularly with each other. For the rest of my medical team, I more or less act as my own case manager and relay information to them. While this can be somewhat burdensome and time consuming, I do what I must to advocate for myself.

@A myPHteam Member and @A myPHteam Member, thanks for sharing. Tammy, I’ve been there. When this happens, it’s often because you’re missing key people in your care team. Here’s mine:

Primary Doctor: She’s incredible—a USF professor and internal medicine specialist. I trust her 100%. I see her every 3 months, after ER visits, and whenever needed. She ties everything together, coordinating care across specialists and handling medications, scripts, referrals, and INR monitoring (via a PharmD). If I’m between specialists, she steps in, like now with my endocrinologist. 2 times a month about.

PharmD: Manages my INR weekly, adjusting meds based on my readings. I recently added an INR management company for extra support. 2-3 times a week.

Chronic Care Manager RN: to help with coordination and communication, like ensuring hospital records get to specialists. Twice a week.

Neurologist: Manages stroke/TIA, trigeminal neuralgia, and myasthenia gravis. He’s retiring, so my PCP will handle things until I find a new one. 3 mo.

Cardiologist: Managed my dysautonomia, arrhythmias, PH, and implanted loop recorder. He recently retired, and I’m unsure about his replacement since PH wasn’t addressed. 30 mo.

Pulmonologist: Focuses on asthma and lung issues. He says I do not have PH. 3 mo.

Rheumatologist: For EDS-related issues every 6 months.

Ophthalmologists: Three different doctors focus on EDS, MG, and retina care ( every 3 months each).

Endocrinologist: Managed hypoparathyroidism and thyroid biopsy (currently without one).

Hematologist: For clotting disorder (and for oncology if that positive).

Physical Therapy: For stroke recovery and dislocations (paused for now).

Geneticist: As needed for genetic testing.

Ideal Team: A strong PCP (like mine), specialists focused on their fields, and a dedicated PH clinic. I plan to see a dedicated PH team and will likely have PH cardiologist and PH pulmonologist alongside my current doctors.

I also communicate regularly with my doctors—portal updates when something impacts their care, like stroke or INR issues. Emergencies go through 911 or the ER.

Sorry this is long, but I hope it’s helpful. Building the right team is so important.

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