Searching for a New Care Team Proves Challenging
As I searched for a new primary care physician (PCP) in March, I learned that finding my new healthcare team after relocating across the country would prove challenging. The first potential candidate spent three hours going over my medical background with me, only to inform me that my health was too complicated to take on. I was frustrated and angered at first after spending so much time preparing and waiting for the appointment.
Although this PCP didn’t make the A-list, I was fortunate to share my story with the medical assistant. One of the assistant’s family members had been newly diagnosed with pulmonary hypertension (PH) two weeks before.
Although this was a failed attempt in my search for a doctor, this visit held meaning because I could offer hope and help someone who needed education about PH. Still, it took some time, deep thought, and conversing with others about this incident before I was ready to tackle the search again.
Moving on to potential No. 2
This process was beginning to sound like a dating game. Not my preference for an initial meet and greet, but a simple virtual appointment was next. This potential candidate looked down at his desk and was dismissive of my concerns and need for referrals for new specialists. Strike two.
I never realized transitioning my healthcare team from Texas to California would be so challenging and draining. The frustrations, fatigue, and fear of not having a care team overwhelmed me. I’d been without a proper care team in California for almost six months after the move because of the logistics involved and the wait for insurance changes.
At least my PH specialist was set, and I’m fortunate that he’s nearby. He was one of the first PH specialists who cared for me. He did so for about 10 years, and he has my back now. Usually, this specialist is the most difficult to find because PH is rare.
And now, behind door No. 3
I decided to offer myself some grace and took a break. Once I was ready to start my search again, I made an appointment with Dr. No. 3. It was a lengthy wait, but I decided she was worth it and hoped for the best.
The front desk staff, medical assistant, and doctor were all friendly and welcoming when I walked in. This PCP greeted me with a smile, looked at me while talking, and reviewed my medical history with a fine-tooth comb. We spoke as she asked questions and listened with keen interest. She asked me what I needed most from her and what I expected, and we agreed on a care plan. After reassuring me, she sent referrals to the other specialists I needed to add to my team.
Cha-ching, we have a winner!
I asked what makes her more passionate about building a positive patient-doctor relationship, and she was clear. She went to medical school to help others maintain and improve their health, she said. She’d practiced for 12 years at three large hospitals and had learned that patients want someone they can trust and have a relationship with.
I wrote about creating and building doctor-patient relationships in one of my first columns. (Allow me a bit of grace; I was just getting started with writing.) Trust is a top priority when putting my faith and body in the hands of a care team. And I feel like I can trust this doctor. I feel assured that I have a PCP who is a team player and has my best interest in mind.
Another important quality is good, prompt communication. The referral offices contacted me within a few days. Since my appointment, I’ve called or messaged using MyChart, an online patient platform. Either the doctor or the medical assistant quickly responds and takes care of business.
I quickly thought back to my worries that I was setting the bar too high in my search for a new PCP. Even when I was discouraged, I knew I was worth the PHight. Knowing what I want and expect from my healthcare team and self-advocating both pay off.
Giving in and quitting is often easier. But I remind myself that I’m the referee, coach, and captain of my team, as you are. We are the experts on our bodies, and we deserve to have trusted team members who care about us.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
Joann M Viselli
Hello,
My name is Joann, and this is my first time reaching out. My son who is soon to be 26 was diagnosed with PAH just over 3 years now. Regarding the article of "Lowering pulmonary blood pressure is linked to better survival", his pressures have read high and well over 40mmHg since day 1. His triple combination therapy has not changed and I wonder if we need to do more. He is on as needed diuretics. His days for the most part have remained stable, has not required oxygen and tolerates the treadmill every day. At his last doctors visit, we were told an echo would not be necessary at 6 month check up as he has remained stable and not with severe symptoms. Thoughts on this?
Thank you.
Jen Cueva
Hi Joann, I'm sorry to learn about your son's diagnosis of PH. I know this must be challenging for you. It sounds like you believe he needs more aggressive treatment. Although I didn't write that article, I'm a PH patient of 17 years. I would suggest looking for a second opinion if you've mentioned these concerns to his PH team and they have different ideas.
If you haven't yet joined us, we would love to have you join the PH News forums, where you can communicate with others in the PH community to ask questions and find support as you navigate this PH journey with your son. It's simple to set up an account by answering a few questions and creating a profile. You can click this link to do that.
In the meantime, keep advocating for the best care for your son and make your concerns known. I'm sending you positive thoughts and vibes as you manage hos care. Take care of yourself, too.
Kindly,
- Jen