Kim M's Story

Looking back now, I was definitely a classic PNH case. I experienced common signs early on, with dark urine being the first, in 2021. I initially thought this was a urinary tract infection, so I went to a local pharmacy to get some antibiotics, but they didn't seem to help.

I also felt tired all the time. I didn't have enough energy to go on runs the way I used to. Within 5 to 10 minutes, I would be out of breath. But I chalked it up to the fact that I was a new mom taking care of a one-year-old.

But it didn't. So when the dark urine came back, I decided to go see my family doctor.

He was able to confirm that I did not have a urinary tract infection, but he couldn't explain my symptoms. Without a solid plan for further investigation, I left the doctor's office with more questions than answers.

So, I took matters into my own hands and visited a private clinic, where they immediately prescribed a series of tests.

This began my nine-month-long journey of testing. I did scans, diagnostic procedures and blood tests. They were looking for tumors, organ malfunctions or other fun stuff. Fortunately, all tests came back normal. Meanwhile, my hemoglobin was plummeting so they put me on iron supplements to boost those. Unfortunately, they didn't help very much.

In the ninth month, I experienced a hemolytic crisis – my complexion became yellow (jaundiced), and I felt nauseous and extremely tired. At a friend's urging, I decided to go to the hospital. They kept me for two weeks while they ran even more tests. After having exhausted all other options, they finally turned me over to a blood specialist – a hematologist. Within days, the hematologist figured out I had PNH.

This is when things started to shift.

My husband and I were overjoyed. We had been trying to get pregnant for months before my diagnosis but it was so difficult. My body couldn't support a pregnancy on its own. But now that I was on treatment, I had hope.

My pregnancy went rather well considering my condition. I think my hematologist would agree with me. I'm not sure my husband and obstetrician had the same point of view though. I think they were stressed out enough, so I just kept my head cool and took it one day at a time.

I was able to carry my whole pregnancy to term and gave birth to a firecracker of a daughter. Since then, I have made changes to my medications and am feeling even better now. I don't look yellow (jaundiced) anymore, I have more energy, and I feel less tired and out of breath.

If there's one piece of advice I have for others with PNH, it would be to advocate for yourself. This is so important. When I was first diagnosed, I looked into a few PNH groups and that how I stumbled upon PNHCA. It has been such a great way to keep up with everything going on, including new treatments.