Nurse going downhill fast

In 2013 I was working in a hospital as a nurse case manager in MICU and High Risk Nursery. I was becoming short of breath walking from the parking lot to my desk and I noticed my abdomen and legs swelling up.

I first went to a pulmonologist who wanted to do a sleep study. I knew this is not what I needed. I then went to a hematologist/oncologist who drew some labs, examined me then went on vacation for a week. In the mean time my sister Mary was doing some research and thought I might have Amyloidosis. I had a appointment with a cardiologist who examined me and also thought I had Amyloidosis. He sent me for a Cardiac MRI which confirmed the Diagnosis. I was immediately admitted to Advocate Lutheran General Hospital to cardiac tele. I was hospitalized for three months, in and out of ICU with hypotension, heart, liver, & kidney failure. On dialysis for 6-7 weeks until my kidneys kicked back in. I’ll never forget the night I had so much urine in my bladder and the catheter must have been clogged with sediment that the cather popped out balloon intact and the entire bed was covered with urine from head to toe. I felt so bad for the tech that cleaned me up but so glad that my kidneys opened up.

Shortly after admission I felt I had every test known to man, EKG, Echo, lab draws daily, BMB, Ultrasounds, x-Rays, and CTScans. I was going downhill fast. On CyBorD treatments and in ICU on a levophed gtt for hypotension. My Heme/Onc consulted w Dr. Gertz at Mayo Clinic thinking I needed a heart transplant. Since he didn’t know me, and since I was in multisystem organ failure he told my Dr., he thought hospice was the way to go. My Heme/Onc Had a family conference and told me Mayo’s response. I said NO. I am ready for the fight of my life and I know that God will get me through this. Which he did.

I gradually got better but since I was on bed rest so long, My muscles atrophied and I lost my ability to walk. Once off the levophed I transferred out of ICU to telemetry then once my vital signs were stable I went to inpatient rehab for 7 weeks and learned how to walk with a RollingWalker. Still not ready to go home I went to nursing home or skilled care for 8 weeks to build up my muscles and get more independent. I went home on Christmas Eve. Prior to that day a therapist came to the house to see if any modifications needed to be made. My husband put a railing on the wall next to the stairs in our garage and built three wooden boxes half the height of our stairs since I couldn’t get my left leg all the way up and he would move them up the stairs as I climbed. Having a positive outlook, supportive family and belief in God is what got me through. My sister worked at the hospital and she and my husband were at my side daily. Home for about nine months I started a clinical trial at Mayo Clinic for a new drug NEOD001. I was in the trial for two years until it was discontinued. At year four my numbers started going up and my Heme/Onc put me on Pomalyst/ dexamethasone for six months. My numbers came back down and I was good for almost another four years. This year I was started on Dara/Pomalyst and Dex in April. For some reason I had an allergic reaction to the Pomalyst. Itching and blotches so that was discontinued. I’ve been on Dara and Dex since with a good response. I’m now on monthly doses and my numbers are still going down.

About year four I felt I was ready to drive again. My husband took me out to a parking lot a couple times and I thought things went well. The first time out myself I sideswiped my husbands car when pulling into the garage because I couldn’t sense which pedal my foot was on. After that I investigated hand controls because my neuropathy from the CyBorD was so bad in my feet and legs. I took a couple classes and then had the hand controls installed on a GMC Acadia. I’ve been independent ever since. My husband and I went to Europe twice and Cancun once with a Walker since I got home. We’re planning on traveling more once the Covid pandemic is over. I did have to quit my job though and have been on disability since. This disease affects everyone differently. It’s like a roller coaster for me. Hoping I’m headed for normal again and awaiting a drug to get rid of my neuropathy.

May God bless everyone with the horrific disease ????.

Nurse going downhill fast – Ruth – United States