Our PKD Story - Chapter 2: Becoming Parents

Since this first experience was such a turnoff, it ended up being some time before Jeanne made her next nephrologist appointment. Since Jeanne was taking courses at Hunter College in Manhattan at the time, she decided to find a nephrologist in Manhattan and ended up at the Rogosin Institute at New York Presbyterian Hospital. We found the care and compassion here to be much better, and Jeanne still receives her followup care there today. Pretty quickly, we learned that ADPKD (which Jeanne has) and ARPKD (which is surely what the infant had in the picture that the first nephrologist showed us) are completely separate forms of Polycystic Kidney Disease, so the “don’t have kids because they’ll have deformed kidneys at birth” warning was not particularly accurate.

Jeanne's medical care was pretty uneventful for the first couple of years – and uneventful is exactly what you want when you are dealing with PKD. Then, in December of 1994, we learned Jeanne was pregnant! Having PKD, Jeanne was immediately assigned to be followed as a high risk pregnancy. Very early on, she was told to be on full bed rest and to show up at the doctor’s office three times a week for monitoring (we never did figure out how you are supposed to get any rest if you are always at the doctor’s office!). Despite all of the extra care she was under, most of the pregnancy went fairly smoothly. The highlight early on was probably when I fainted at the first sonogram. Then, about six weeks before the due date, Jeanne had a sudden drop in her kidney function. Thankfully, it quickly recovered, as we found out later that she would have been put on dialysis otherwise.

Finally, about a week before the due date, during one of Jeanne’s doctor visits, her blood pressure was way too high, and they scheduled an emergency C-section for that evening. At 8:46PM on July 27, 1995, TJ was born!