Being an avid cyclist and leader of our Chain gang bike club, I have been logging every ride since 2005. Looking back on my logs, I noticed for the first time being fatigued riding up a hill which never bothered me before. This was Sept 2020. Also when tracking my VO2Max, it started declining at the same date. Being 82 at the time, my doctor assumed my fatigue was due to age, but when I presented him with a packet of statistics in summer 2022, he realized a problem and jumped on it. Was formally diagnosed with stage 4 AL amyloidosis January 2023. Went through chemotherapy until mid-July, now on monthly treatments. And presently I feel pretty good, although greatly bothered with lower back pain--may not be amyloidosis related. Being strong, healthy and fit at the beginning of treatments, I outlived the original January 3-month prognosis. Next prognosis about a month ago (November) is for a year or so, which I also plan to outlive. So good luck to your husband. We will figuratively cross the finish line of success together with our arms in the air.
Good luck to your hubby--if not already doing so, get started as quickly as you can with the chemotherapy treatments. vern

I traditionally have had low blood pressure and did see some BP in the 75/45 range earlier. Been on 45mg of Midrodrine for about 6 months and consequently my BP now ranges in the mid 90s to low 100s; the other reading ranges in the 60s. When it was low I could raise it by exercising. I learned that with BP readings in the 70s range, watch for flushed face and for disorientation, neither of which I had. And of course, we are all different.

More thoughts: My amyloid 'factory' was shut down after about 6 chemo treatments. There is kind of a battle between my cardiologist and my kidney doctor on removal of fluids--cardiologist wants them removed while kidney Dr is concerned about kidney damage from fluid removal. Kidney Dr after watching blood work stats says kidney function is improving thus has allowed heavier use of diuretics to remove fluid from lungs and legs.

I believe we carry the disease lo g before it is diagnosed. The way mist diseases go, they lie recessive for years and by the time they show up they begin to start giving us trouble. I was having breathing problems around 2015. Could find the reason until 2023. It was probably in my body years before.

Hi Jim. Translating your torsemide to my bumetinide. "Best I can find is: 40mg furosemide is equivalent to 1mg bumetanide" I am currently on 2mg/day of bumetanide, which would be 80 mg furosemide. Recently they had me taking per day, 2,4,2,4,2,4... , so on my heavy days I was taking =240 mg, 2 at breakfast and 2 at or before 2pm.. That did shrink my tree-trunk legs and perhaps positively helped my lung fluid issues. But it sure constrained my social life. (Sorry, I got sidetracked into comparing these two diuretics.) And, yes, my breathing is definitely improved when I get my lungs drained. vern

I am getting plural tap of left lung at hospital every 2-3 weeks. My wife is tapping my right lung 2-3 times per week using the PleurX system (Becton Dickenson), so I always have a gauze patch under my right armpit. Am keeping a chart of results re right lung--graph finally shows volume tapering off. Lung taps going on since late summer. (Now Dec. 30).

Update on January 8: Per my spreadsheet and corresponding graph, my volume drained from my right lung is definitely decreasing. Average per day is around 130 ml now.