From fear to faith....

By Shari Mcfarkand, Amyliodosis Al, United States, March 11, 2020

The color of love

My husband was this amazing athlete, who turned his love for track into coaching, and working with troubled youth.  Always healthy, one day he was fine and the next he just wasn't.  We moved from cold, to pneumonia, to heart, to cancer, with in a month, and so fast it made our heads spin. Diagnosed at Scca and told that if he fainted one more time, well you know the story, he didn't give us much hope.  Than finding out that he had multiple myloema on top of the Amyliodosis was almost more than we could handle. It has only been through faith, family, friends, and amazing drs, that we have made it through going on 5+ years despite what they told us.

Going from one treatment to another and finally settling on kyprolis, which put him through a heart clot, toxic sepsis, and para pneumonia, was exhausting, for both of us. But through hope, and faith we did make it through despite how dim it looked. He wasn't a good candidate for sct, so we had to rely on other treatments. After the third hospital visit I decided enough was enough, and the treatment that was supposed to help him, was literally killing him. Through much soul searching and praying we both decided we needed a new pathway on our journey.  That was when we found an amazing dr, named Dr Chen.  We arrived in a wheel chair after the last hospital visit, so sick he could barely move. It wasn't all at once, but little by little, on vitamin c infusion, magnesium, Dara and a steroid he improved.  His heart went from an ejection rate of 20 to 45, and the multiple myeloma went from elevated numbers to under normal.  We did get a resolution passed in our state to call attention, and hopefully funding for this horrendous disease. 

I wish  I could say it was over night, or that everything was great but we are still on a journey conquering one mountain, going through one storm at a time, making us one storm older one storm wiser.  As we continue to try to tame this monster, we have been given our why, which is to help others with their why, and be there  for them along their journey.  We truly are blessed to be some one else's blessing, and he is my miracle.

 

*Find others with Amyloidosis on RareConnect, the online platform for people affected by rare diseases

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