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