My story, like that of many others, begins with a lengthy diagnosis. Greater awareness at the primary care level is bound to help.

My collection of symptoms, starting with carpal tunnel syndrome in 1998, were not recognized as anything unusual at first. I was a nurse and a quilter, and used a computer at home. Later that year I twisted my right knee, which ended my five mile walks on our pleasant neighborhood trails. Arthroscopy showed I had osteoarthritis.

At the start of 2001 I was a chubby 55 year old lady with high blood pressure, high cholesterol, and now lack of exercise. I worked 12 hour shifts on a high risk OB unit in a super busy hospital. All that could sure account for some fatigue and even chest tightness. To get fit, I joined a gym, lost some weight, and was elated at the well toned muscle that appeared in my shoulders, arms, and legs. Even more cool - after I cut way back on the weight training, the firmness didn't go away. I was still losing weight. My family practice doctor was puzzled by the continuing fatigue and chest pain, though, so in the fall I had a stress echocardiogram. It was normal.

By Christmas time, I was having trouble chewing and swallowing. Attributing it to a broken back tooth I had been ignoring, I spent January getting the dental work done before seeing my doctor again. I saw her in early February, went the same day for a CT scan of my head and neck, and was seeing an ENT doc on Valentine's Day 2002.

Then things really got wild, and I don't want to recall all the diagnostic devilment. By August we had tested for and ruled out tongue cancer, Parkinsons, ALS, acromegaly, "stiff man syndrome", and a bunch of weird neuromuscular conditions.

In September I changed primary care docs. The new internist honed right in on the possibility of amyloid, and got me finally on track. He sent me to an excellent hematology practice. Protein electrophoresis showed a monoclonal gammopathy with high lambda. Bone marrow aspiration in October showed borderline multiple myeloma but was negative for amyloid. Abdominal fat stained positive for Congo red, so I was on my way to Boston for a full evaluation.

Consulting with the outstanding amyloid faculty at Boston, my home hematology practice has matched their skill and kindness.

The first round of high dose melphalan with stem cell rescue went well, with some infection and cardiac complications which required five days in the hospital. There I was on a mission to educate everyone I met. I left the ASN (this was before ASG was born) web address with the ER nurses. An incredibly compassionate medical student from 2003 is now a first year family practice physician who knows when to suspect and how to test for amyloidosis. And skipping ahead 18 months, I now keep a stack of brochures in my car with the Virginia license plate AMYLOID.

By summer of 2003 I had recovered from the chemo and had near normal protein electrophoresis and free light chains. I still retained all the stiffness, including a rapid irregular heartbeat with simple exertion like climbing one flight of stairs in the house or walking 20 feet from a car into a building. I returned to Boston in September for their follow-up evaluation. (Gorgeous weather compared to December!) Eight months out, my lambda and FLC values were showing slight elevation. "An excellent partial response," pronounced Dr. Skinner, as she recommended going one more round.

That we did in March 2004. I still had about 5 million viable stem cells from the first collection. The problems this time were different - a dramatic lobster red rash within 24 hours of the return of my stem cells, which subsided, replaced three weeks later by severe itching that lasted 6 weeks. A skin biopsy ruled out autologous graft vs. host disease, so the docs blamed it on an allergic reaction to an antibiotic. I think we'll never know, and that's OK.

Labs are pretty normal right now. We're going to check protein electrophoresis and free light chains every three months. A wonderful cardiologist watches my heart function and caters to my desire for minimal intervention.

For the ongoing back and leg pain and shortness of breath, I have tried "gentle" yoga and geriatric water aerobics. I have an exercise bike at home. I use a walker to go anywhere outside the house, and still need to rest frequently. Eating, bathing, dressing, talking, are all done very slowly with help or modification. Recently I started taking a combination of turmeric and bromelain, as advised by the email support group. Someday research will find a way to break down disabling amyloid deposits.

I'm thankful for the experience. Because of this disease, I went back to church after decades of irregular attention to God. I have felt well supported by my husband, family, and friends. I have not been able to work, but stay in close touch with my nurse friends. I've attended ASN meetings in Dallas and Baltimore, and been made welcome in the homes of other amyloidians who will be lifelong friends. I don't have the energy to be a public activist, but do enjoy reading the emails and sending personal letters of support, and prayers for the patients and caregivers in our worldwide community.

As for where I have lived - in the Washington DC suburbs since 1968; all over the US and for six months on Kyushu, Japan, as a child. I don't know of any environmental stresses.

For those just diagnosed and starting treatment - it's life-shattering, it may or may not be the eventual cause of death of many of us, but you will find you are loved more than you ever knew. We all have a finite life span on this earth. Use yours to receive and give love, and be assured that God has a wonderful future planned for us for eternity.

My goal now, to quote St. Paul from the Bible, is that "I may finish the race and complete the task the Lord Jesus has given me - the task of testifying to the gospel of God's grace."

UPDATE: November 2006, two and and half years later...

Life with amyloidosis goes on. The second stem cell transplant lasted about a year as well. In July 2004, I went to see Dr. Comenzo at Sloan Kettering for my followup. Someone at my insurance company said they preferred Sloan to Boston; I did want to meet Dr. Comenzo, who was caring for one of my dearest friends and whose reputation is so outstanding. It was a privilege to meet him, but it was not our time to work together, as my labs were still normal.

In the fall, my FLC started to creep up out of normal range, but my hematologist wanted to just watch. In 2004, FLC was still a new test and he wasn't checking it every time. 24 hour urine for protein electrophoresis was just as informative to him then. (Thank goodness that's changed!) I felt no worse, and in no mind to do more chemo, so we coasted into 2005. I did have another normal cardiac stress test in October 2004. My echo was stable too, with slight ventricular wall thickening, normal sinus rhythm at rest, and the usual low voltage EKG.

October 2004 was two years out from my first receiving Social Security Disability, so now I was eligible for Medicare. Buying Part B would double my health insurance expense. The insurance I had was covering things well. So, hoping to save our government a few bucks, I opted out. BIG HUGE MISTAKE!!

If I can teach you all anything, in order of importance, it is God loves us, and take the Part B!

You see, somewhere buried in their documents, but not mine, the insurance company stated that once I was eligible for Part B, they were allowed to act as if I had it. They started rejecting claims in the summer of 2005. They were secondary, not paying until Medicare paid. Since they had been good to me to the tune of over $200,000, I didn't fight this fiercely. I just kept health care to a minimum until I could get the Medicare.

That worked until February 2006, when I suddenly lost my atrial kick.

One Saturday evening I walked upstairs, then sat down for my usual 5 minute rest for my heart rate to come back down. This time it didn't. I stayed over 150 and short of breath. Stubbornly, I gave it a few days before I saw my doctor. He kept his cool as he sent me straight to the hospital. There I spent a few days on telemetry, trying to break the rhythm with medication and fluids. On February 13, I went to the OR where communication between my fibrillating atria and my venticles was severed. Control was given to a new implanted pacemaker, which keeps my venticles beating under 90.

This did not result in improvement of exercise tolerance, because my heart is too stiff to pump enough oxygen at that normal rate. But it has kept me from lethal ventricular fibrillation. And the experience gave me an amazing caring new doctor, an expert in electrophysiology.

Did I say before that one of the neat things about this disease is the wonderful people it brings into one's life??

Fast forward to July 2006. With full Medicare, we went back to Boston for evaluation. It was so good to be back where we started with this adventure, to see so many of the same doctors and staff from before.

Labwise, I have relapsed. In July my lambda FLC was 565, over ten times normal. Dr. Skinner advised starting Revlimid, but there was no room in the clinical trial at Boston. My home hematologist continued to talk with Dr. Seldin. We decided to go with the Merlini protocol - oral melphalan and dex for four days every four weeks. I've just finished the third cycle. It's easy. The hardest part is swallowing ten nasty dex pills in a row. Much of my amyloid deposition is in my throat and mouth. Everything sticks to the inside of my mouth, and wants to stay there.

That is a blessing too. I have continued to lose weight. The belly fat is even going away now! My ENT predicts I will need a stomach tube one of these days. That will make my husband very happy, because he wants to pour hundreds of curcumin and other supplement capsules into me, things I used to be able to swallow but now cannot.