PKD Connection Blog

PKD Will Not Beat Me

The doctor/patient team

Valen with her nephrologist, Dr. Bhat (right), and his assistant, Robin (left).

I’ve met individuals who are stubborn when it comes to seeing a doctor. As someone who has been seeing doctors since I was a child, though, I know I wouldn’t be alive today if it wasn’t for their knowledge, skill and guidance. I look at the doctor/patient relationship as a team effort; it takes both components to keep things moving forward in a healthy and positive direction. However, at the end of the day, our health is in our hands. It is up to us to select which doctors we want to care for us and it is up to us to take the best care of ourselves.

I am passionate about being an advocate for myself and others and playing an active role in my health. I am currently under the care of a primary care physician, nephrologist, neurologist, hepatologist, infectious disease specialist, dermatologist, OBGYN, and spine specialist. As I approach my 16-year kidney transplant anniversary and head towards receiving a liver transplant, coordinating my health is a full-time job. Between hospital stays, appointments, transplant evaluations, etc., I deal with individuals in the healthcare field almost every day.

Valen undergoing heart tests at her liver transplant evaluation.

It has been an intense year-and-a-half dealing with my declining health; full of so many emotions and unknowns. An infectious disease doctor was added to my healthcare team last year to try and find the cause of my repeat infections. Thanks to our persistence and working together as a team, we discovered that the cause of my repeat sepsis episodes is due to primary sclerosing cholangitis (PSC) and this is why I need a liver transplant.

Valen with her infectious disease doctor.

My infectious disease doctor and I have been in the trenches together with all of these liver issues and she has guided me along the different phases of acceptance of needing a liver transplant. A particularly meaningful moment we shared was during one of my hospital stays when I was fighting yet another liver infection. It was becoming clearer the need for me to have a liver transplant was vital. She spent well over an hour in my hospital room explaining my MRI images to me, discussing the progression of my disease, the uniqueness of it all, the difficulty we are having in controlling the infections, what the future looks like for me, and how I need to start preparing myself for transplant. Her time, patience, kind sentiments, and words of encouragement were a turning point for me, that I needed to get my “game face” on and that I can tackle this just like I have everything else in life. The part that meant the most to me was how we talked about the big picture of it all and the raw emotions attached to what is happening in my life. Her genuine support and encouragement touched me more than she’ll ever know.

I believe the relationship and experiences that my infectious disease doctor and I have shared over the past year exemplify an extraordinary doctor and what can be accomplished when a doctor and patient work together as a team. Thank you to my incredible team of doctors that help keep me moving forward and living the healthiest life possible, and thank you to everyone in the medical field who help patients heal, both emotionally and physically.

How has a doctor helped you along your PKD journey?

Comments

  1. Paigeypaigemylife says:

    Your story continues to be an inspiration to me, my pkd issue has messed up my life, but like you i am a warrior and i am fighting with everything in me to take care along with my team. Thanks for being a kidney warrior.

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