Introduction to Claire Sachs

It’s always nice to know from whom you are seeking information and support, right? So, I thought I would introduce myself and my chronic kidney disease (CKD).

I’m Claire. I am 40-something and live in the Washington, DC area. Ironically, I can see both NIH and Walter Reed National Military Medical Center from the window of my apartment, which is also my office.

And I essentially gave myself CKD.

Being diagnosed with chronic kidney disease

I actually have 14 diseases, one of which is mid-stage CKD. I am a Type 1 diabetic, and shortly after diagnosis, I decided that, between poor treatment approaches, fear tactics, and lack of knowledge, that there was no point in following a healthy regimen. So, I was non-compliant (I knew what I was doing, so non-compliant fits better than non-adherent) for six years. Because diabetes is one of those diseases that will seek revenge, even after you find a good path, nearly a decade later, I was diagnosed with Stage 3 CKD.

At that point, even after over 20 years of serious medical issues, it was the first time I was really scared for my life. At that time, we all (I and my care team) thought it would be a slow slide until I needed a transplant, which I really didn’t want.

And you want to know the dumbest part? I knew it was coming. For three years, my endocrinologist had prescribed lisinopril to control my blood pressure and protect my kidneys, which I didn’t take. I guess it was my little tiny taste of that typical early-adult invincibility that I knew didn’t exist. I had hoped, somewhat illogically, that since I was doing so much better than during my non-compliant stage, that if I just waited long enough, it would go away.

It did not go away.

Hypersensitive to dehydration

However, it did stabilize, much like my retinopathy and peripheral neuropathy. I was so young when my diabetes complications started to develop that my body started to compensate and the damage I had caused leveled off. The nerves in my extremities healed and after a couple rounds of laser surgery my retinas have been holding steady since 2006. The CKD is another story.

The CKD actually got better.

Surprising, right? I have never met anyone who has gone from stage 3 to stage 2 before. The best we can tell is that I am hypersensitive to dehydration. I was never thirsty, so back then I was only drinking about four cups of water every day. After the diagnosis, I made a concentrated effort to drink more, and my eGFR went from 45 to where it sits now, in the 70s.

It’s a huge relief and it was the final nail in the coffin of my medical rebellion. These days, I will push boundaries, and push hard, but I never outright skip recommended treatment regimens anymore. It helps that I have a tram of clinicians that work with me instead of in spite of me.

CKD takes most of my headspace

I know how lucky I am, and I am 100% sure that my experience is rare. If CKD were as easy to treat as an increase in water intake, dialysis and transplants wouldn’t be necessary.

I also know how precarious my position is, and how carelessness and neglect of a healthy regimen could pave the way right back to stages 3, 4, and 5. That puts CKD squarely at #2 in the hierarchy of my 14 diseases. It doesn’t take the most time and energy – that’s the diabetes – but it does take the most headspace, a breath I hold every four months until my labs come back and I can see for myself that my numbers are stable.

This is where I am and how I got here. I hope that this community will be a safe, supportive place for the members of the CKD community, all of whom have their own sets of challenges and circumstances.