We are all Warriors – AL Amyloidosis

Brenda Hill

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.

As we look toward the future
A Life with hATTR amyloidosis
Where will this ATTRwt amyloidosis journey take me?
AL Amyloidosis Diagnosis
Cardiac Amyloidosis Needs to Be on the Decision Tree
Man Survives Cardiac Arrest, Benefits from First-Ever Drug for Rare Form of Heart Failure

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