John’s Journey

A two year journey of increased shortness of breath and fatigue. 3 cardiologist’s, 2 gastroenterologist’s, a pulmonologist and his primary care physician… and no one could figure it out until 33 days before he died.
3 heart attacks, severe uncontrolled peripheral edema, extremely low BP, and episodes of syncope. But his number one CONSTANT complaint was extreme shortness of breath, he just felt like he couldn’t breathe, but his pulse OX Was always in the high 90’s.
A 57 year old otherwise healthy very active farmer & Corrections Officer just detioriates in a matter of months when it got really bad.

5 years ago: bilateral carpal tunnel.
Oct 2019: first Afib
Jan 2020: first heart attack and 2nd Afib episode – discharged still in Afib.
Oct 2020: 2nd heart attack
Nov 2020: cardiac ICU, potassium 8.
Nov 2020- Feb 2021: 6 hospitalizations for uncontrolled edema, extremely low sodium & potassium.
Feb 5, 2021: heart MRI shows Amyloid deposits
Mar 5, 2021: first round of chemo
Mar 10, 2021: the widowmaker

Order the MRI – EARLY! It could save a life.

My husband John M. was diagnosed on Feb 5, 2021 with AL Amyloidosis affecting the heart. After a year of complaining of shortness of breath. He was treated for congestive heart failure – and every specialist and his primary said he should not be so fatigued & out of breath. Pulmonary found no reason for his symptoms. THIS must be an indication for testing early.

If he had died from any of of the other heart attacks, he would have died from “congestive heart failure “. How many other patients with John’s symptoms have died of CHF instead of the correct diagnosis of Amyloidosis?
Check the box…Afib? Shortness of breath? Fatigue? Order the MRI – EARLY! It could save a life.

John’s Journey – Stephanie – UNITED STATES