The Day My Life Changed

In April 2019, I had just returned from a girl’s trip to Las Vegas and was not feeling great. I had a fever, cough, and just normal body aches.

As a couple of days passed by, I felt worse and worse. I kept telling myself can’t be sick; I’m a nurse. I ended up in the ER and spent the next 3 days in the ICU and the following 8 days in the hospital. As I was being discharged they gave me my follow-up appointments and had scheduled me an appointment with a Nephrologist. I followed up with Pulmonology, my Primary and last but not least the Nephrologist. The dr was very nice and stated «your lab values have been and continue to be elevated; I think we need to do some further testing». (I was not concerned at this point as I’ve been plagued with kidney infections, pyelonephritis and kidney stones most of my life.) I had lab work and urine tests and he then said I think we need to do a kidney biopsy and you’ll need to spend another night in the hospital. (Now concerned) I said what are we looking for? He replied «I’m not sure; it’s just a rule out at this point.»

I’m a nurse and I know we have to rule out a lot of things before we have a diagnosis, so I was eased slightly. I had the biopsy in June and approximately 4 days later I was at home laying on my bed watching TV, when my phone rang. The dr was on the other end and said «Can you talk?» I immediately sat up and said «Yes» He said «I have the results of your biopsy and I believe you have a disease called Amyloidosis. I want you to see a Hematology/Oncology dr right away. I will get you an appointment and I need you to keep that appointment. In the mean time, don’t go to the internet or the medical library; just wait until you see the dr.» I agreed; hung up the phone and proceeded to go to WebMD. Within a couple of hours my phone rang and it was the secretary from the hem/onc dr’s office calling to schedule my appointment for the next week.

My oldest daughter and I went to the appointment, 3 days before I was to go on vacation with my best friend and her daughter for her birthday. The dr told us that I had to cancel my trip, have a bone marrow biopsy and start chemo immediately if I wanted the best possible outcome. The next week I had x-rays, an ekg, cardiac echo, a MRI and my bone marrow biopsy and waited for what seemed like forever for the insurance to approve my chemo. I went through all the stages of grieving…then I decided I was not going to let this disease win after all I’m a nurse; not a pt.

I started chemo and went weekly for my PO and Subq chemo. I still worked full time and dealt with all the side effects chemo had to offer. I was sick and tired and tired of being sick all the way through December when I was finally told that December 26th would be my last treatment.

Today, I’m proud to say I’m in remission; I know it’s not forever; but I’m not going to sit around and wait for this disease to come back and take over my body. So today I work to have fun, I bought myself a new car, I’m taking vacations, I took my grandkids to Florida, I spend as much time with friends and family and I make Memories! I have Amyloidosis but it doesn’t have me!

The Day My Life Changed – Tamara – United States