On November 11, 2006, my family and I were having dinner with friends at their home. The kids were playing in the basement, and we were catching up in the kitchen. Since my girlfriend is a nurse at a Boston hospital, I decided to ask for her professional opinion. A month prior, I had noticed my legs and feet were unusually puffy and swollen, to the point where I couldn't see my ankles. I had been at a friend's wedding, and had assumed that the extra fluid was due to the salt in the catered food. This particular evening, my legs and ankles were so swollen, I was puffy right down to my toes. My friend took a look and said this was edema, or water retention in the tissues, and while not an emergency, suggested that I see my primary care doctor as soon as possible. Since we were already on the topic of my health, I also happened to mention to her that I had been shocked a few weeks prior when at a routine physical, my PCP had informed me that my cholesterol was 364! I couldn't understand how a former personal trainer like myself, who ate a healthy diet and exercised regularly, could have such high cholesterol. The doctor had no explanation for it and had prescribed a statin medication. At the time, neither my friend nor I connected the two issues.
I was able to make an appointment with my PCP a few days later. She took a look at my swollen legs, suggested that I might just be due to "bad veins" (whatever that meant), and took blood and urine tests. The results showed nothing unusual, and I was sent home. For the rest of the month, I Googled relentlessly for possible causes of edema in an otherwise healthy, young person. I had no idea how long my cholesterol had been at this high level...could I have congestive heart failure?? What about peripheral vascular disease?? Maybe my hormones are out of whack and I have Metabolic Syndrome?? In an effort to be proactive, I went off the birth control pill to eliminate any artificial hormones. I drank a ton of water in an effort to flush out the fluid, and strictly limited my salt intake. I even went so far as to request an order for an echocardiogram to rule out a heart problem--the test came back normal. My PCP referred me to a vascular specialist who found nothing to explain the edema. I was not only frustrated, but uncomfortable and totally self-conscious about my appearance.
The swelling and puffiness persisted over the next couple of months until in January, it became even worse. We were preparing to leave for Florida to visit my in-laws, and the edema was so bad that I couldn't even kneel to pack my suitcase. It was difficult to bend my knees, and I could feel the tension when trying to point and flex my feet. I was in tears with my legs elevated, not only desperate to know what could be causing this amount of fluid retention, but quite frightened to find out. I called my PCP, who recommended a 24-hour urine test...AFTER I returned home from Florida.
The trip was so difficult to enjoy...having to sit on the plane to and from FL was incredibly uncomfortable. The only shoes I could wear were flip flops. And it was impossible to hide my legs with skirts and capris. I couldn't get home fast enough. Once we did, I immediately took the 24 hour test and completed the corresponding bloodwork. I waited anxiously for my doctor to call with the results.
Finally my doctor called to inform me that I was losing a large amount of protein in my urine, which was causing the levels of protein in my blood to drop. This indicated a problem with my kidneys, which would need to be determined by a nephrologist. I asked her why this was happening, and while she could not pinpoint the cause of the problem, she likened my kidneys to pouring pasta into a colander. The holes in the colander are supposed to be big enough to let the water drain out (ie, the urine), but small enough to keep the pasta inside (ie, the protein). When the kidneys are injured in some way, the holes get bigger, and some of the "pasta" is lost with the "water".
I went home and instantly started Googling my symptoms: unexplained high cholesterol, edema, proteinuria, low blood protein. The condition that kept showing up was nephrotic syndrome. Steve was ready to padlock the computer and shut down our internet connection, and I was unable to concentrate on anything except how this could possibly be happening.
A couple of weeks later, I met with the nephrologist. I was instantly impressed with his calm, soothing manner, how thoroughly he obtained every detail of the past several months, and the length of time he spent with me. He confirmed that I did in fact have nephrotic syndrome, which is not a disease in itself, but a condition that indicates some sort of kidney tissue damage. In order to uncover the cause of this tissue damage, a kidney biopsy would need to be performed. We scheduled the procedure, and I left with a prescription for a diuretic to help reduce the edema, as well as potassium to keep my electrolytes in check.
I underwent the biopsy at the end of February, 2007 without complications, and stayed overnight in the hospital for observation.
As we waited for the results of the biopsy, my parents were very supportive, but as one would expect, incredibly concerned. My mother offered to accompany me to my next appointment, but I declined her offer, since I felt it wasn't worth disrupting her schedule. A couple days later, my father offered to come with me under the guise of taking me out to coffee. At this point I was so exhausted from months of tests and doctor appointments, I didn't have the energy to argue. I let him pick me up, thinking at the very least I was getting a latte out of the deal.
A week later I was excited about meeting with my nephrologist and finally having the answers I needed. I figured at best, I might need to take medication or undergo surgery to "cure" this condition, and the worst case scenario would be having some autoimmune condition for the rest of my life which would need to be managed with a few daily pills. Either way, I was prepared to receive the news, process it, and be on time to pick up Jason from preschool. As promised, my dad picked me up for our coffee date, and we headed over to the office.
I left my dad in the waiting area while I followed my doctor into the exam room to discuss the biopsy. I was in good spirits, having enjoyed my latte, and ready to add a few more prescriptions to my "collection". As the doctor began speaking, I remember hearing, "...serious disease....very rare.....amyloidosis....chemotherapy and stem cell transplant....go to Boston...". I felt my heart drop to my stomach and the chills come over me. I held up my hand for him to take a pause. "Can I go get my dad?!" I asked.
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