KAY'S AMYLOIDOSIS STORY
March of 1998, age 57, I began to experience numbness in my arms. It became severe, a pins and needles sensation, especially at night, waking me from sleep. The pain was so excruciating, I had to get up and carry my arms around the house, seeking relief. Massage and chiropractic treatment helped, but the effect didn't last. After a year, I sought Scientology auditing for numbness and began to feel better. Several months later, the numbness went away.
The first half of 2000, I started noticing a little breathlessness while on hikes. By August, physical exertion would quickly leave me breathless and fatigued. When ascending stairs, I would have to rest at each landing. Another strange symptom occurred when I began biting my tongue and every time it would bleed. I also developed "raccoon" eyes, every time I washed my face with a washcloth-bruised eyelids.
By September, I could tell my heart wasn't beating right-it was beating too loudly, skipping beats, and I needed more pillows to sleep/elevate my head. My Spokane, WA primary doctor said he could hear a murmur (never had that before), and sent me to a cardiologist the very next day. Additional tests were performed including an echocardiogram, but it took months to get the results.
While I waited, I sought help from a chiropractor. He said I had pneumonia and told me to take Immuplex 3 times a day. By mid-October, my heart felt somewhat better and I attributed it to the Immuplex. Around this time, I noticed there were many bubbles in my urine, and my ankles started to swell. A Floridian medical doctor, who practiced alternative medicine, diagnosed me with pulmonary hypertension and the Cytomegalos virus. She also sent me to a dentist, who said my numerous metal fillings had attracted bacteria in my wisdom tooth sockets. The doctor and dentist put me on several vitamins and minerals, imprinted a wavelength on my jaw to relax it, and gave me a homeopathic solution for my toxins in my swollen lymph glands. They seemed to reduce in size.
By December, my digestive system went awry. I was never hungry, always felt full, and slowly began to gain weight. To counter this, I had several colonics, which released a huge blockage out of my system. I noticed more energy within 2 hours.
January of 2002, I finally received my blood test results from my cardiologist. She apologized for the wait and said I either had Multiple Myloma or Amyloidosis, showing abnormal Lambda light chain proteins with a trace of Kappa, and needed more tests immediately. I saw Dr. Northfelt, oncologist at Rancho Mirage, CA, at Eisenhower Medical. He conducted blood and urine tests along with a bone marrow biopsy, and sent me to a CA cardiologist, Dr. Bellaci. Dr. Bellace gave me a stress echo, put me on a treadmill, and couldn't believe what he saw. He showed me what looked like ground glass and bright lights in my heart, and said it was Amyloidosis. He said I would be in a hospital right now if it were not for the vitamins. I returned to Dr. Northfelt, who said I was a puzzle-the tests he took didn't show anything. I said I wanted to go to an expert and asked him who he would recommend. He suggested a number of clinics and I chose the Mayo in Arizona. Dr. Northfelt was friends with Mayo's Dr. Reeder and called him. Dr. Reeder asked Dr. Northfelt to take a fat biopsy, and that test confirmed I had Amyloidosis.
February 11 I saw Dr. Reeder in Scottsdale, AZ, at that time the only Amyloidosis expert on the west coast. He conducted more tests, confirmed I had Primary Amyloidosis, and scheduled me to return within 3 weeks. If the tests looked good, I would have a stem cell transplant immediately.
Returning to Palm Springs, CA, my ankles and legs began to swell and I couldn't seem to get enough air into my lungs. The only way I could sleep was to lie on my stomach, propped up on my elbows with pillows underneath, and then it would only help for a couple of hours. I found I couldn't walk 40 feet on flat ground without stopping for air. It was always worse in the mornings. Mild diarrhea entered my health picture. By the end of February, I developed a cough and fever, so decided to check into the emergency clinic. The Clinic doctor said I had congestive heart failure due to fluid retention, and insisted I go by ambulance to Eisenhower Hospital immediately. I was given a diuretic and put on oxygen, both of which helped immeasurably. However, ten hours later they released me as Dr. Northfelt told them I needed to go to the Mayo Clinic in AZ as soon as possible for my appointment.
February 27, my parents and I set out for Phoenix from Rancho Mirage, CA, a five hour drive. Halfway to Phoenix, I told them I needed to go to the Mayo Hospital as I could hardly breathe. I wanted to sleep in the car but knew if I did, that I might not wake up, so I forced myself to stay awake. We finally arrived and I checked myself in to the Hospital. My heartbeat was irregular, I had pneumonia, and 3/4s of my body was retaining fluid including ½ way up my lungs. I spent 5 days in the hospital where they stabilized my heart, put me on oxygen 24 hours a day, diuretics reduced much of the fluid, and I was treated with 2 rounds of antibiotics for pneumonia. A thoracentisis was performed, draining 1 quart of fluid from one of my lungs. Then, I was released to the Arizona Transplant House to rest and heal. I was given 6 Lasix and Potassium a day to overcome the fluid retention.
Dr. Reeder determined that my heart was not strong enough to withstand a stem cell transplant, so recommended Alkerin, a low-dose chemotherapy treatment, with Prednisone, a steroid. I took the treatment for 7 days and then recovered for 6 weeks before repeating the cycle again and again. Statistics said only about 30% of patients respond to this type of treatment.
At the end of the first treatment, I "crashed" hard going off the Prednisone too quickly. For a couple of days, I stayed in bed, as it was an effort just to talk, much less to eat. After that, I learned to taper the last couple of Prednisone tablets by taking ½ a pill twice in one day, and then ¼ a pill 3 times a day on the last day. The "crashes" were much less severe using this method. I usually experienced a ½ day during the crash where my heartbeat seemed irregular and beat extra hard, so I would rest on that day and added magnesium to my diet, which helped my heart.
After one month at the AZ Transplant House, I was strong enough to return to Rancho Mirage, CA, for April and returned to Spokane, WA in May, feeling better. I completed 7 cycles of this treatment, improving each time. My protein spill in Feb. was 4300, and by August it was 806. The return blood flow from my heart was 50% in Feb. and by August it was 75%. All the excess fluid is gone, my ankles don't swell anymore, and the Lasix was reduced to 4 per day. Dr. Stephen Anthony, my Spokane oncologist, suggested I take Aranesp/Epogen, which increased my red blood cells using my own stem cells. Dr. Reeder confirmed there was no additional amyloid buildup around my heart in the part 6 months.
I learned to pace myself as I would tire easily. My amyloid symptoms for 2002 to 2003 were bruising eyelids from the slightest touch, dizziness upon standing suddenly, and breathlessness when walking up stairs. I needed more sleep than usual along with a daily nap. To protect my immune system, I had to take extra precautions not to get sick-such as wearing a mask in public places, avoiding sick people, and wearing gloves when shaking hands or touching public door handles, gas pumps, etc.
December of 2002 I needed 3 units of blood due to the chemo effects. January of 2003 my blood outflow increased from 50% to 75%, my kidney spill reduced from over 4000 to less than 1300, Lasix was reduced from 6 to 4 (240mg) daily as was potassium (220mg). I continued to take 1000 mg Vit. C and 1 multi-vitamin daily. I began to use 5 to 8 lb. weights, rode a Cardio Glide for 20 minutes, and walked 15 to 30 minutes. I applied for Social Security Disability, but didn't get it until 2004.
Now it is 2007 and I am not just surviving-I am thriving. My health seems back to normal and my energy is amazing. I walk about 2 miles a day, do aerobics three times a week, and contra or swing dance. Dr. Reeder said I am partial remission as I have a few amyloid particles in my blood. Outwardly, I show no symptoms of Amyloidosis. Inwardly, my heart feels normal and my kidney protein spill is minimal.
What did I do to achieve this miracle of surviving?
1. Followed the treatment offered.
2. Over 2,000 people were praying for me.
3. I am an optimist and have a positive outlook on life.
4. I have a large circle of friends that supported me when I let them know my condition via email. Some gave blood in my name.
5. I found it helpful to talk about my disease to others and learn about it via the internet.
6. I asked my friends to send me jokes & I watched funny movies to increase my endorphins.
7. I didn't play the "blame" game or the "victim" game-just concentrated on healing.
8. I wanted to see what my mind was doing to my body so I underwent Dianetics Auditing. During the auditing, I could actually feel my heart healing in several places. After the auditing, I had an echocardiogram. It showed my heart valve had healed. December of 2006 my cardiologist could not hear my murmur.
If you have questions for me, please contact the host's website for my email.