Overcoming Challenges: My Journey with PKU

Overcoming Challenges: My Journey with PKU

25-Sep-2023

So, let me give you some context.

I was born with a rare metabolic disorder where my body doesn’t process a particular protein (basically at all). The net effect on children can be physical and mental retardation. Because of that I was on a (basically) no protein diet for at least the first decade of my life. At that time, the current wisdom said we stop the diet. We did, and I (seemed) to do just fine.

Fast advance about 4 decades. There’s a string of divorces, non-custodial children, and a slew of failed careers and lost jobs. It seems that I wasn’t doing so well after all.

I got screened for kidney disease and found out I’m at stage 2. My doctor noticed a link between the kidney disease and PKU – the disease I was born with. Now the process begins again.

It didn’t go easily. And it took nearly a year to get started on medication. About a year later, I needed to go up to two injections per day. My blood levels were finally under control.

To put that into perspective; my levels before I started were 22. Clinical levels start at 2. So I had been living the last 40 years wildly out of balance.

Turns out having levels that high have detrimental Neurocognitive effects. Fogginess, impulse control issues, anxiety, the list goes on. They kept asking if I saw a difference. I explained that I didn’t know what to blame on PKU, and what were simply adaptations. I said my wife would be the judge. I got married again, and we’re still going strong. That’s more to her credit than mine. So, when she told me she was seeing a difference. Eventually, I started seeing it too.

It’s not overselling it to say I’m a totally different person because of that doctor’s simple observation.

Allaah is the Best of Planners.

All thanks and praise is due to Him.