Life with CKD: My Appointments

Here’s a glimpse of what happens at my various appointments.

Each month I check in at Wellbound in Emeryville, my dialysis center.

After my weigh-in and bp check, I hand over the flash drive from my home dialysis machine.  My nurse downloads the data from all my sessions the past month.

She then checks my other vital signs.

She reviews my medications and discusses a PD topic.  There’s always continual training for Peritoneal Dialysis so I don’t forget important information.  Each month we review a different topic (e.g.,  how to plan for an emergency in case of power outage, what to do if I have an infection, etc.).

Venofer is iron therapy to treat my iron deficiency anemia.

It’s injected slowly into my body, usually once a month.  It takes about 15-20 minutes to get it all in.  That’s a good time to get to know my nurse.

Of course blood is drawn every month to monitor my levels of creatinine, phosphorous, potassium, iron, calcium, albumin, etc.

Here nurses prepare me for the Peritoneal Equilibration Test (PET) which assesses my peritoneal membrane function to see how well my toxins and excess fluid are moving through the membrane and into the dialysis solution by osmosis.

This one-time three hour test provides my doctor the information needed to customize my PD prescription…

… which is then programmed into the flash drive that will go back into my dialysis cycler machine.

Every quarter I collect my “belly drain” fluid for Wellbound to measure how well toxins are being drawn out.  This is the dialysis solution that has been sitting in my peritoneal (abdominal) area for a few hours, drawing out toxins and fluid.  My dialysis prescription is adjusted accordingly.

I also bring in a 24-hour urine collection to measure kidney function.  Who ever thought to make the collection jug orange-colored?  All that’s missing is a Tropicana label.  Because that jug needs to be kept cold, some patients put it in the refrigerator. 😀

Every six months, my nurse replaces part of my catheter.

I receive the last of my Hepatitis shots.

My dietician, Lori, reviews my lab results with me and adjusts my diet.  This month my potassium level was too high, so I need to avoid bananas and other high potassium foods.

Robin, my social worker, checks in on me to see how I’m coping.   Recently she tells me how to apply for PG&E’s Medical Baseline program.  That application informs the power company that I have life support equipment at home and gives me priority when power is restored after an outage.  She also answers any other non-medical questions I have (e.g., How does the new kidney allocation system work? What can you tell me about the wait list at U.C. Davis? etc.)

Okay, not technically an appointment, but I try to make a stop here at least twice a week.  It’s the only food I still crave.

On another day I visit the Social Security Office to apply for Medicare.  Having End Stage Renal Disease (ESRD), or kidney failure, qualifies me for this secondary insurance.

Occasionally I stop by LabCorp to collect a current blood sample to send to UCSF Transplant Center to help determine compatibility with a potential donor.

Every month, I also visit Dr. Gluck, aka Dr. Awesome Nephrologist, at UCSF.  He checks my vital signs again and checks to see if I have cramps, nausea, dizziness, fatigue, swollen ankles and other symptoms of CKD.

He takes my lab readings from the week before and adjusts my prescriptions.

I take advantage of my trips to San Francisco to lunch with friends.  Pomelo is my go-to with my friend Rozane.  Helen and I love Taste of Formosa.

After the appointment I always stop by San Tung on Irving Street to pick up a double order of their famed friend chicken wings for the three boys.

Then I trek back over to the East Bay to pick up T from school before delivering K to soccer.

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Do you have any must-try foods that I should pick up after my next appointment? Please share in the comments below.