My name is Paul Kaczmarek. I am 48 years old and I live in the United States. I like being in the outdoors and listening to and exploring new music. I was a mid-distance runner, having completed several road races. In addition to adrenal insufficiency, I have epilepsy, type 1 diabetes, hypothyroidism, celiac, and clinical depression.

How were you diagnosed and how long did it take? What form of NETs were you diagnosed with? And had the NET spread to other parts of your body?

In the spring of 2014, while running, I first experienced shortness of breath and quickened heartbeat. Soon, every time I exerted myself, I had these symptoms along with terrible pressure in my head. I knew it was significant, but my endocrinologist dismissed it. Finally, in 2017, after relocating from Washington, D.C. to upstate New York, my new PCP referred me to a cardiologist, who ordered a stress test. My blood pressure registered 270/130, and the test was abruptly halted. A cardiac catheterization produced no clues. At about the same time, I went to a wedding in Hawaii. The groom’s mother is a retired nurse, and she thought that it might be a pheochromocytoma. I had no idea what that was.

I mentioned this to my cardiologist, and, surprised, he agreed. He took the time to explain the condition to me and referred to Albany Medical Center, where a series of tests (CT, MRI, MIBG) revealed a pheochromocytoma on my right adrenal gland.

After having an adrenalectomy in October 2017, further testing showed a pheo on the left side, also requiring surgery in April 2019. Fortunately, the pheos were non-metastatic. However, after undergoing genetic testing in July 2019, I learned that I had a mutation on the MAX gene, indicating a predisposition for paragangliomas. It took six doctors and three years before I first learned I had a pheo, and then another two years before I knew about the genetic mutation.

What treatment have you had and how did it affect you then and now?

I’m grateful to have had very good care, not least of which includes having two physicians in my family. I am on steroid treatment and have semi-annual urine and blood tests.

What impact has the diagnosis had on your personal life ?

The diagnosis was a relief because I finally had an answer to the scary mystery illness that I learned was putting me at risk of a stroke. It has also presented the need for dietary and lifestyle changes on top of those required by being diabetic; these are quite frustrating at times. Psychiatric therapy and monthly Pheo Para Alliance support meetings have helped with acceptance of the long-term prognosis. I’ve also learned to be more empathetic and listen to others when they need to vent about their health or the way they feel. I consider that a blessing.

Who’s been your hero? Perhaps it was you!

My heroes have been my wife Ursula, my sister Ellen and brother John who are doctors and offered advice and support, my PCP Dr. Cunningham, Norma and Truman Sasaki, who first offered the possibility of a pheo, and last but not least, Dr. McNulty at Saratoga Hospital, whose professional curiosity and determination ultimately led to a proper diagnosis and treatment.

How are you now? 

I don’t have any direct complications from pheo/para at the moment, but having to take steroids on top of other medications creates a delicate balance that is often disturbed. I am fortunate not to have had any major difficulties due to compromised immunity.

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