First of all, I feel great; and the only problems I have at the moment are that due to my illness, AL Amyloidosis, plus the effects of the medicine that is mostly responsible for saving my life, THALIDOMIDE, I have resulting Neuropathy with symptoms including toe, feet, leg, finger numbness, and I also suffer from some imbalance...all symptoms that are annoying; but with which I can live. I hate not being able to ski any more, to play tennis, etc., but I can swim, walk (even if mostly with a cane for safety), deadhead my flowers, and enjoy what is out there for me. For many years I felt my eyes were not able to focus enough for me to read extensively, but now I am hungrily catching up with the more free time I have as I have had to pretty much retire from my free lance career. I am a Stage Lighting Designer, and since diagnosis in 1999 I have retired from academic life, my last full time position as an Associiate Professor at UCLA, realizing I could not handle the overextension in my working life. But I have chosen to continue my free lance designing, working when I can with the dedication of some remarkable Assistants and the indulgence of my Spouse. During the first years, the most tiring ones, I even flew around the world to Festivals in Singapore, Germany, Finland, to design with a brilliant and talented Choreographer. The problem was that between work calls and rehearsals, I would be flat on my back just resting, and not able to explore the corners of those far away place, a habit that had sustained me all my creative life. But at 71 I am being convinced now to 'enjoy my life'; and we are priviliged that Neil has a tenured position and a huge freelance career.....all with health insurance, and that he is six years younger and more energetic now than I.
HISTORY:
In the Spring of 1999, while traveling in Europe on a Sabbatical, we noticed that, abnornmally for me, I would tire easily. The day we returned to the United States, as I sat down with my legs extended on the bed, opening three months of mail....I watched as my feet and ankles blew up to almost 9" across. My Doctor in New York who, besides his practice happens to be a Kidney researcher, immediately saw me, discovered I had a kidney problem, but decided to send me on my way to our summer residence in Eastern Canada, feeling that perhaps I had acquired some 'bug' during our travels. After spending most of the next two months, resting on my bed, he diagnosed steroids; and when I returned to New York after more tests, he decided I needed a kidney biopsy but that I should proceed with it when I returned to Los Angeles. This search thus involved approximately twelve weeks.
After a quick stop at the UCLA clinic, I was turned over to an excellent Kidney MD, Dr. Mark Song, who immediately scheduled me and performed a Kidney Biopsy. He recognized Amyloid, and arranged immediately for me to see Dr. James R. Berenson, a Hemotologist Oncologist, who was at the time in the Cancer unit there., and whom he knew was specifically working on Amyloidosis. Dr. Berenson immediately arranged a Bone Marrow Biopsy and discovered AL Amyloidosis. At that time, he was beginning to use Thalidomide in conjunction with the Steroid Dexamethazone in the treatment of Myeloma and for the few Amyloid patients he diagnosed; and he advised, and strongly suggested as I was 63 years old at that time, to begin this program versus treatment by Stem Cell transplant, (which at that time had only been used for approximately five years.). Shortly after this, in November, I came down with Pneumonia; and I was hospitalized for more than two weeks at UCLA, under the care of both Dr. Song and Dr. Berenson. At that time, during 'rounds', the supervising MD told a group of younger doctors that I had been diagnosed with AL Amyloidosis just previously, but also had the signs of 'Congestive Heart Failure'. I recovered slowly from all this. After I was well again, we did arrange for me to consult with Dr. Comenzo, who had recently moved from the Boston University Program to Sloane Kettering in New York where I have a primary home. And that January in New York I saw Dr. Comenzo and had complete tests once again. He felt that in spite of my age, I was a good SCT candidate. But as my Spouse was then based at UCLA, (and after the Pneumonia +, we realized I needed to have him by my side through all of this,) and also as the SCT program was so new, and I was so 'old', I began a program of Thalidomide and Dexamethazone with Dr. Berenson, who has been my Specialist ever since then on his moves to Cedars Hospital and now at his Institute of Myeloma and Bone Cancer Research in Los Angeles. I was also screened during these first three years by the Heart Transplant Unit at UCLA Medical Center, and the the great Specialists there thought my Heart was showing no further danger, and only signs that would be normal for a woman my age.
As this treatment was so new and experimental, perhaps I was started on a rather high dose of THALIDOMIDE, as I know far smaller amounts of the drug are NOW being successfully used to combat this illness, especially on patients who experience a set back after an SCT. But, also we will never know whether the disease was 'jerked out' of me due to the fact of my treatment beginning with that higher dosage.
I did have a few incidents, fainting, sharp drops in blood pressure, causing ambulance rides, and short hospitalizations, during the year before the Coma discussed below; and with the wonderful care of Dr. Alan Weinberger and Dr. Michael Levine, my further Kidney Specialist there, I recovered quickly.
But I did suffer a Seizure and was discovered in a COMA the 4th of March 2003, five years ago, and was luckily discovered by my Spouse in time to get me into an Ambulance and Intensive care. I was 'asleep' for 10 days, and awoke on my Spouse's Birthday that March 14th, the day he turned 60. The Hospital consultants and advisory departments had Neil going about inspecting Long Term Care facilties as they doubted I would awake. My Mother died after several small strokes, mostly undetected. Did I also suffer several small strokes during some years past? Or what was the reason I experienced a Seizure and went into a Coma? ....We will never know exactly. And many of the Doctors passing me in Intensive care did look suspicious about the THALICOMIDE history.
After some six weeks in the hospital and then in the Rehab Unit of Cedars, with losts of physical, occupational, and what was still called (although obviously a kind 1940's description for mental/psychological Therapy,) "Speech Therapy", I headed home after mid April, with more of those therapies and home caretakers. All the previous AMY related drugs were stopped while I was recovering, and lots of other drugs entered my home Pharmacy, still including the Dexamethazone. But in July, as the Amyloid symptoms did begin to get worse again, the Thalidomide was restarted but in a smaller daily amount. And over the next years, as I improved re the Amyloid, the Thalidomide was reduced gradually, until in January 2006, it was stopped entirely. I still take Decamethazone but only every other day now, and many other pills related to preventing another seizure, monitoring my blood pressure, etc....and keeping me in good health. And I have regular monitoring both at the Institute, with my Kidney/general MD, and with others. For the last two or three years, I have been treated with an infusion drip of ZOMETA to insure that my attacked bones re all the Steroid are kept strong enough. I also received EPO for a while, when my tests allowed it, due to poor blood counts; and 18 months ago in December 2006, when I was hospitalized due to a fall, my red blood count had gotten so low that I had to have two transfusions.
Since the Seizure, I have fallen, and as a result, I have been hospitalized a few times....all due to imbalance, and I now use a cane. The first time in 2005, Neil spotted me at a party, reaching for a champagne glass, far too far to one side; and the next morning when I went to sign a check, I couldn't write at all. That fall involved Emergency Surgery on my brain, and I now sport a Titanium plate in my head where the medical team at Cedars, lead by Dr. Ray M. Chu had to enter; but that metal does not set off any bells at Airport screenings. My last hospitalization, due to a fall, was in December 2006. And, on sending very tardy New Year's greeting cards this month, I discovered my handwriting to be clearer and more controlled, and forced myself to hand address the envelopes, instead of using computer labels...just to have the practice.
For the last year or more my Amylolidosis tests have read better and better each time. And for now, and since June of 2007, they seem to be reading within normal ranges, and I feel terrific although I do tire - but heck I turned 71 in March. And think, in the Falll of 1999 I was told not to expect to live more than a year; and after the seizure and coma in 2003, Neil was taken to see places where he could board me and not expect me to be myself again.
Respectfully submitted,
Jane Reisman Jampolis
AL Amyloidosis, diag. 1999.
Age 71