The following account is written by a myeloma patient, Linnea Johansson.
As the year 2015 progressed, I noticed several things about my health. I had excruciating lower back pain and was quite fatigued, starting in February. I blamed some of the pain on having lifted a heavy box. We live in a mild climate so I was working outside a lot, clearing debris and determining what kind of plant life we had, along with soil conditions, so we could plant a vegetable garden.
I went to a chiropractor who used a drop table to adjust my back, but unbeknownst to me, the bones were becoming brittle and the action caused hairline fractures.
By May 11, 2015, six months after the initial trauma and four and a half months after the back injury at work, I was admitted to the hospital with my heart flipping and my stomach upset. We thought I was having a heart attack!
After the EKG, blood draws, and much confusion, I was told my calcium levels were way high and I had atrial fibrillation, which had to be monitored.
Thanks to an accurate and quick diagnosis by a visiting hospitalist, Dr. Bresnahan, I was found to have multiple myeloma, and after five days at St. Thomas, I was transferred to St. Mary Corwin in Pueblo, where I spent another 7 days. Those were the longest 12 days of my life.
Zometic acid drip lowered my calcium levels and another drip administered twice controlled the fibrillation. Ultrasound testing of my kidneys did not reveal any immediate deterioration but I was found to have renal failure.
I was finally X-rayed and the lower back fractures were found, prompting the kappa light chain multiple myeloma diagnosis.
I was then transferred to St. Mary Corwin Hospital in Pueblo for another 7 days to await bone biopsy and begin Velcade treatment, which was administered subcutaneously twice a week with 20 mg of Dexamethasone taken orally twice weekly.
I lost 25 pounds in that hospital room. At first, I thought there must have been some mistake, as I couldn't grasp that I was on the oncology ward!
The colored brochures I was given convinced me that this was some kind of "designer disease" - quite complicated from the get-go, but I did my research (like a good paralegal) and learned so much from the Facebook forums, Patient Power, and the HealthTree Foundation for Multiple Myeloma. At St. Mary, I met Dr. Travis Archuleta of Rocky Mountain Cancer Center in Pueblo, who is my oncologist. I also met my nephrologist, Dr. Mark Albright. I was met by a female nephrologist at St. Mary who threatened to submit me to emergency dialysis, but such measures proved unnecessary.
After I was released I was quite weak and required assistance to get around. My husband is my life-saver and has been so supportive and loving throughout this whole ordeal.
I suffered nausea from the Velcade and insomnia from the Dex, and symptoms of neuropathy in my feet began with numbness and tingling. I did experience swelling of my feet prior to and during dialysis. That summer I required two transfusions.
In October 2015 I was given Cytoxan, Dex, and Velcade as a combo to lower my numbers prior to a stem cell transplant. Ultimately I suffered an acute kidney injury and was not a good candidate for a stem cell transplant so I went to hemodialysis in a clinic setting in November 2015.
I had numerous reductions in sessions and was dialyzing fully in less than 2 hours twice a week. My condition was upgraded to chronic kidney disease.
I must mention here that going into dialysis caused a bit of a flurry with my health coverage. The Obamacare coverage I had refused to pay for treatment, so I was transferred to Medicare ESRD and had to apply for a grant for Plan F through American Kidney Foundation to cover the rest, which was a blessing.
I also had to submit an Indigent Affidavit to be forgiven the accrued balance for the gap before my coverage went into effect, which never should have happened.
There is currently a bionic kidney in development at UCSF which, if implemented, would probably eliminate most of the hemodialysis clinics and save bundles of money. It is a small electronic unit that would be inserted into the abdomen and requires a person's kidney cells to insulate it from rejection.
If it can be replaced as easily as a pacemaker, count me in! Now we learn that a genetically modified pig's kidney can function on its own as a transplant and does not cause rejection as human organs can.
In early 2016 my husband and I decided to open a clock and watch repair business in downtown Canon City. Yes, I was still on dialysis! We had the shop until early 2023 and many family heirloom clocks were diligently repaired and restored to the satisfaction of our customers. I handled the books and orders.
I experienced many challenges over the course of these years, including:
- Ingrown toenails
- Severe anemia
- Blown quadricep which rendered me unable to walk for a time
- Deep vein thrombosis in my left leg
- Bad rash as a side effect of blood thinners
- And more
I have continued with supplements, including daily multivitamins, L-glutamine, alpha lipoic acid, and B-12. I also continued with Amlodipine, Metoprolol, for blood pressure, heart regulation, and blood thinner.
Today, I still suffer from chronic kidney disease and am currently on maintenance therapy. I travel 80 miles round trip every other day for my dialysis. I fight because that's what I know how to do.
I find great respite in gardening, being with my supportive husband, and enjoying retirement. We also recently bought a sports car to celebrate my 70th birthday.
What has myeloma taught me?
Even though I grieve the loss of my former strength and ability, I have found new ways to grow.
My advice to others is to be kind to yourself. It is punishing enough to go through pain and treatment, but you must always love yourself and your body anyway. Live each day fully. In this way, you can be helpful to others. Be kind to your caregivers, saying "thank you" often.
Curious about other myeloma experiences? Read more here: Myeloma Patient Stories
If you are dealing with unwanted side effects, use our crowd sourced solutions tool: Side Effect Solutions
Do you have significant kidney involvement with your myeloma? Watch educational sessions and join our group here: Myeloma Patients with Kidney Involvement
about the author
Audrey is the Editor for the HealthTree Foundation for Multiple Myeloma. She originally joined the HealthTree Foundation in 2020 as the Myeloma Community Program Director. While not knowing much about myeloma initially, she worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys iced chais from Dutch Bros. She also loves spending time with her supportive husband and energetic three-year-old.