Just informing everyone that on September 1, 2017 I was diagnosed with a rare blood disease called Al Amyloidosis. I call it "Amy" for short. May this year I had my annual blood work done. Normally everything usually comes back normal, except my HDL's could be higher, my LDL's could be lower etc. but I had a high in my Creatinine level which has to do with kidney functioning. Upon further testing it was determined I had quite a lot of protein leaking into my urine. My primary physician sent me to a kidney specialist which ordered more tests, ultra sound of kidneys, bone survey to rule out Myloma (bone cancer), many, many blood tests and finally August 28th 2017 a stay in New Hanover Regional Medical Center for a kidney biopsy, which they took pieces of my kidney and sent to the University of NC, Chapel Hill for results. On September 1, 2017 100% Al Amyloidosis was diagnosed. Amy strikes about 4300 Americans a year which 70% are men. Yep I am in the 30% of women. Didn't know I was so special!!!
Al Amyloidosis is a life threatening disease. After much researching and getting in contact with Muriel Finkel in Chicago, IL, head of the Amyloidosis Support Group, we decided to go to the Mayo Clinic in Rochester, MN. There are four centers that fight this disease, Stanford, Boston, NY Presbyterian and the Mayo Clinic. The Mayo Clinic has been researching this disease for 30 years and have therapies that are not available elsewhere. I became a Mayo Clinic patient on Sept. 13, 2017 and began the day with all kinds of testing. Sept 14th I had a bone marrow biopsy and donated three teaspoons of my bone marrow to science. They also took a biopsy of my tummy fat. I tried to donate it all to science but they just took what they needed and left me all the rest. I just signed a paper opening up all my medical records to science regarding this disease. Sept 15th, we met with Dr. Gertz and he gave us the results. Not only did I have Amyloid protein deposits in my kidneys (causing the low function numbers) but I also had moderate Amyloid proteins deposits in my heart but my heart is still funcioning at 75% anything over 55% is good. We were scheduled to meet Muriel Finkel and the Amyloidosis Support Group November 18, 2017 in Charlotte, NC. However, Muriel was doing a support group meeting the next morning September 15, 2017 in Rochester, MN. Ron and I stayed for the meeting and met 40 people from around the United States that had the same rare disease as me. Dr. Gertz happen to be the keynote speaker, and Ron felt so much better talking to survivors of this dreaded disease.
I was referred to a local hemotogist/oncologist where I would receive treatment in Wilmington, once a week every Wednesday for 16 weeks. The treatment I am on is called CyBorD. Every Wednesday after breakfast for dessert I take 11 capsules of Cyclophosphamide (chemo pills)
total of 550mg, I take 10 Dexamethasone pills (40 mg of steroid pills).Then I go to the lab for blood work, visit with the hematologist, then go to Wilmington Health Infusion center and get a shot of Velcade (another form of chemo) in the belly. After the 4th treatment I had a blood test that measures Lambda Light Chains the protein my bone marrow is mfg. that the body cannot get rid so it deposits in my kidneys and heart. June 28th that number was 264.7 after 4 treatments down to 148.7. My Kappa Light Chains were 38.7 and they are down to 25. My kidney function went up from 26.15 up to 32.08 still low but so far my numbers are going in the right direction. I will have my last treatment on Feb. 7, 2018. My best hope is that I put Amy into remission. The therapy I am on is for Myloma Bone Cancer as there are no therapies for Al Amyloidosis but they find the Myloma therapy works on Amy. We will fly back to Rochester, MN around Thursday Feb. 15 for an appointment at the Mayo Clinic on Feb. 16th for another day of testing and fly back Saturday.There is a possibility of stem cell transplantation if we can get my kidney function up to 50%.
I am making everyone aware of this disease because it is so rare however people have died from kidney failure, liver failure, heart failure without knowing if they had Amyloid deposits in those organs that made them fail. Most of the people we met had gone to cardiologists, liver doctors, kidney doctors they had symptoms but this is so rare a doctor might never have a patient with this disease, they had a hard time getting it diagnosed. The only way you can get 100% diagnoses is with biopsies, heart, liver, kidney, bone marrow, or stomach fat (only 85%). God has put so many fantastic people in my path on this journey. First of all my primary doctor has been on me for slacking in getting my annual check ups done. He has been instrumental in being concerned to find out answers setting me up with my kidney doctor who stayed after me for that kidney biopsy, because you can't do anything for two weeks after the procedure and my schedule was full. He told me there would be no line dancing or pole dancing for two whole weeks after the procedure (I don't pole dance LOL). We got her done and I have been listening to these professionals. I never went to doctors unless something was wrong. I have never taken any medicines unless I had to like antibiotics for a sore throat. I have not been on any prescription medicines until this year. I now take a blood pressure pill, and my therapy pills and shot. I am sorry to say I am no longer drug free.
This journey has had it challenges but my faith has kept me strong for each one of them especially when the news isn't what you want to hear. I am not alone in this journey and I know it. My trust muscles are getting a great work out. I have a wonderful support group of family, neighbors, and friends. They have been so important on this journey. They know who they are and I want to let them know how grateful I am for each one and every little thing they have done for me. I just wanted to inform everyone but more importantly this goes out to any one who is struggling with heart problems and have no answers, liver problems and have no answers, kidney problems and have no answers rule out Amyloidosis because they think it might not be as rare as they think. The problem is this disease is not getting diagnosed and people are dying from organ failure! I don't know what my outcome will be but we are doing everything humanly possible to take advantage of what is available. I am going to the best doctors in the country. I am taking it one day at a time and adjusting well to my new normal. I know many people that will be glad to see 2017 fade into the sunset as it has been a year of many serious medical issues for so many family members, friends, neighbors. Here's praying and hoping that we see great healing and wonderful things happening in 2018. I will keep you posted on this new journey.