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Eve's Blog: Suviving FSGS & CKD

evelyneileencawley@yahoo.com

Initial Symptoms

A year ago, the world was my oyster. I was working, spinning three nights a week at the YMCA, mountain biking on the weekends with my girlfriends, eating out. I was really enjoying life.

My friend, Jennifer, got us tickets to see Riverdance, the Farewell Tour. The date of the show was Friday, February 17,2012. I got off of work, ran home and took a quick shower. We were dressing up, going to dinner before the show,  so I threw on a nice dress. I found a pair of my favorite hoochy mama shoes that matched and proceeded to put them on. They didn’t fit. They were really tight. And I noticed that my feet and ankles were swollen.

Riverdance Farewell Tour Photo

I'm on the left - Jenn on the right

 

What the heck?????????

I shrugged it off. I went to dinner and the show. I even went to my Saturday job the next day.  Monday rolls around and the swelling is no better, so I make an appointment to see my Primary Care Physician.  We’ll call her the Bee-ach from Hell.

That Monday afternoon, Dr. Bee-ach from Hell takes one look at my feet, orders lab work and sends me on my way with a diuretic called Hydrochlorothiazide.  Yeah, I’m impressed I can spell it too. I didn’t even have to look it up.  Go me.

I take the diuretic and nothing.  Now, my impression of a diuretic is it is supposed to make you have to pee… a lot.  Well I think my kidneys were on holiday because they weren’t working overtime. I was hardly putting out any urine at all. As a matter of fact, my swelling was getting worse. Quickly.

On Thursday of the same week, my husband and I are at Lowe’s picking out roses for our garden when my cell phone rings.  Dr. Bee-ach says that I have Hypothyroidism and Hypoglycemia. She states that my protein levels are low, but she’s not worried about it as much as the other two.  Well if she’s not worried about the protein, then neither am I.  She proceeds to say if we get the Thyroid issue resolved, it might clear up the sugar issue. She prescribes Synthroid. While on the phone with her I let her know that the diuretics aren’t working. So she tells me to “up” the dosage to two pills twice a day.  Okay.

On Friday, I start taking the Synthroid and take my first double dose of pee punch and NOTHING happened.

By Monday, my feet are REALLY swollen, tight, hot and beginning to hurt. I waited until Wednesday to call and Dr. Bee-ach told me that I hadn’t given the Synthroid enough time to work. She tells me that it can take weeks to get into my blood stream to even be effective.  WHAT THE HELL????   WEEKS????? 

One week passes and the swelling in my lower extemeties extended up to my knees.  My face was now puffy and fluid seeped out of the corners of my eyes.  My feet and toes were a bluish gray color and tingled from time to time. I called the Doc back to keep her updated on my regression. I was wheezing by this point too – first thing in the morning. She orders another round of labs and a chest x-ray.  The labs showed the Thyroid getting worse but the x-ray was negative.  She refers me to an Endocrinologist, but the appt is a month away.

Weeks pass without change. My weight skyrocketed from 145 lbs to 178lbs in about 6 weeks.

My co-workers nicknamed me the “Blueberry Girl” and posted pictures and signs all over my office. My husband was now driving me to and from work because I was getting dizzy. I was having severe hot flashes and sweats. I couldn’t walk very far because of the increasing pressure and pain in my legs.

On March 13,2012, my head boss, the Executive Director told me to either go to the Doctor, ER or he was calling me an ambulance. I burst out crying. I was so embarrassed and ashamed. I thought I was doing everything I could within the guidelines of my health insurance, but to no avail.  I called my husband to come pick me up and we called the doctor on the drive home.  Still she did nothing. She was frustrated with me calling three times a week for the past 5 weeks. She said she didn’t know what else to do for me.

The next day, March 14, 2012, my husband gets up and tells me to get in the car. He says “Pick a hospital”.