The Disease with many Faces

The story of Naomi

In 2013 , I was 55 and  living life to the fullest . I had 2 Grandsons and my Daughter was expecting a little girl . We live on close to 8 acres … I was mowing , gardenig and swimming with my youngest Grandson . I noticed that was feeling a little tired but assumed that as hard as I was working and with my age that was pretty normal . My Granddaughter was due in December and I was excitedly planning a baby shower , helping my elderly Aunt move and starting to prepare for Thanksgiving and Christmas . I began to notice that my back was hurting quite a bit and that my feet and legs were swelling and really painful .Of course I would lay down or put my feet up and they would go back down but the pain was still pretty bad . Our Granddaughter was born Dec. 5th and healthy and I was so excited !                                                                                                                   Now I have been collecting Christmas decorations for 30+ years and always had the compulsion to put it ALL out but this year it was different . I just didn’t have enough energy to get hardly anything done and that when the swelling came , it didn’t seem to go down . I also started noticing that the swelling was creeping up into my abdomen and ribcage . I felt like I was going to die . Not having any insurance , I didn’t go to the doctor right away . I got insured in May and made an appointment . My doctor was quite concerned at the amount of protein that I was putting out in my urine and scheduled me with a Nephrologist, who in turn sent me for a kidney biopsy . Amyloidosis was the diagnoses . I was stunned , I had never heard of it . I was very sick and scared because a lot of people don’t survive this disease due to late diagnoses or misdiagnoses . Although Amyloidosis isn’t technically classified as ‘ cancer ‘ , I underwent subcutanious Velcade injections ( chemo ) ,steroids and a protozome inhibitor for 6 months . The treatment helped the swelling but I had no appetite , my weight went down to 94 lbs. and the pain was still everpresent . I was scheduled for aggressive chemo ( Melphalan ) and a stem cell transplant in July 2015 . I had to spend 4 weeks away from my family and I think that was almost harder than being sick from the treatment . Praise God , it all went well and I did better than they expected . I found out in October  2015 that I had acheived remission ! To say that it has been difficult is quite an understatement . I have been left with severe GI issues , fatigue and the pain in my legs is still there but God has seen fit for me to live to see 2 more Grandchildren be born , witness the wedding of my next to the eldest son and testify to people about what God and the powert of prayer can do . I am and always will be grateful that God gave me doctors with knowledge of my disease and the treatment that let me be here a little longer for my Husband of 36 years , my sweet , wonderful children and my Grandbabies . I have faith and with faith , there is always hope . #pray4acure


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