We are all Warriors – AL Amyloidosis
Back in 2014 I was working full time, went to the gym, mowed my mom’s yard, and my yard. I did all sorts of things. I was 56 years old. I started feeling short of breath and was very tired. I went to my primary care physician, and she said I just had a bug. It went on and I got bronchitis, then pneumonia. I got to where I was constantly sick. She ran blood work and said it was normal except I had high levels of protein in my urine, but she said it was no big deal. I kept getting sick, so I went to a rheumatologist. She said I had Epstein Barr Virus and possible Sjogren’s Syndrome. She had said that there was nothing she could do for me. I still had shortness of breath, so I went to a pulmonologist. He said I had some scarring and possibly Sarcoidosis. He said there was no treatment to do there either. I kept getting sick. I took some antiviral drugs and that was about it.
I started to get fluid on my legs and ankles (edema). I went back to my PCP and she sent me to a cardiologist. He couldn’t find anything and put me on Lasix. That did nothing. So I was still getting sick, still tired, short of breath, and had excess fluid. I then had a colonoscopy that showed no abnormality. No one knew what was wrong. I started getting fluid on my lungs. I was getting tapped every week taking off about 1200 cc of fluid. So finally I got sent to an oncologist. My blood work was fine, but she did a bone marrow biopsy and it came back that I had Non-Hodgkin’s lymphoma. I was on a chemotherapy regimen for 6 months and was not getting better. My oncologist couldn’t figure out why. I told her to check my heart she said, “It isn’t your heart”. I remember walking into a Walgreens and collapsed on the concrete from weakness.
I went to my cardiologist again, and he ran more extensive tests and said I had congestive heart failure. He couldn’t figure that out as I was relatively healthy. He then sent me to UW Madison. I found a great doctor up there, and within 2 weeks she had my diagnosis. She called me and said I had AL amyloidosis. I said, “What’s that?” She then told me and I replied, “Well at least it’s not cancer”, to which she replied “Honey, you will wish you had cancer”. She set me up for another bone marrow biopsy, and I also had a heart biopsy, which confirmed my amyloidosis and my damaged heart. I also had it in my skin and soft tissue.
I forgot to mention that my tongue had gotten so big, and I kept telling my doctors that my tongue was big and I thought my skin was thick. They thought I was nuts. Anyways, I started the usual chemotherapy regimen for Amyloid. My light chains came down and I started to get better. In February 2017, I started throwing up blood. I had a bleed and they couldn’t stop it. I had 5 bags of blood and 15 bags of fluid. I went into cardiac arrest twice. They brought me back, and I had a long road ahead of me for recovery. I was in the hospital for a month, and I had retained 45 lbs. of fluid. They couldn’t get it off. I was discharged and went home. I went to the hospital several times. I was wheelchair-bound, and couldn’t walk. I couldn’t bathe myself, or do anything. I had at home nurses and therapy. My kidney doctor said I would never walk again.
After 5 months, I finally started walking and taking care of myself. It was a brutal recovery, but I made it. I had a wonderful team of nurses and doctors, along with friends and family. I still have my ups and downs, but I am in remission now and am on Daratumumab. It’s been quite a journey and I am so blessed to be here. It took so long to get diagnosed, and early detection is crucial in this disease. We are all fighters, and I will still fight. We are all warriors. Rock on fellow Amy fighters.