Regan is a Denver singer and musician. Please visit her at:
www.BeatLupus.com, and www.ReganMizuno.com
OK everybody, here it is; that which I have been slightly postponing, because it is still rather hard to talk about. Nonetheless, I want very much to say out loud what has happened.
I was diagnosed several years ago with a severe kidney disease caused by systemic lupus erythematosus. That kidney disease was called WHO Class IV diffuse proliferative glomerulonephritis (gn). At the time, the best available treatment for this type of kidney lupus was chemotherapy. I was told the alternative to taking chemo was potentially staving off kidney disease by using prednisone, but with my particular case and with this particular kind of kidney disease, using prednisone alone would eventually lead to the death of the kidneys.
I was in a life threatening situation. I also knew only too well the deadly results of misdiagnosed kidney disease caused by lupus. I did not want to end up a statistic. So, given a bad choice (chemo) and a worse choice (not doing the chemo), I went ahead with the treatment. I was told that the regimen (a ‘good-chance-of-success’ regimen that had already been determined based on years of research) was to be six months of monthly infusions, followed by two years of quarterly infusions. The total number of treatments, which extended only slightly longer than the planned 2.5 years (due to a couple of slightly delayed treatments because of minor infections I’d incurred), was 14.
I was administered Cytoxan (Cyclophosphamide), a chemo most commonly used for breast cancer. I was shocked to learn I’d be receiving it and was given the same concentration of the drug as were cancer patients. Even though I’d had the blessing of drawn-out treatments (the space between even the tightest treatments was a month), I felt extremely fatigued, nauseous and, looking back now, I realized I had also been depressed. A memory just struck me funny: my rheumatologist saying to my mother, before I was to start treatment, “She’s going to feel like crap the next couple of years. But she WILL be OK”. And I was.
I am happy to say that now I’m in excellent shape. Physically, emotionally and mentally. This took a ton of hard work and a lot of blessings. My goal is to shed light on the gravity of lupus, while showing the hope and positivity that comes with research dollars and doctor and patient education. Without the early diagnosis I’d experienced, I, like so many other misdiagnosed lupus patients, may not have made it.
I am so grateful to have been taken care of by people who were very familiar with the disease. My nephrologist has several kidney lupus patients. Most are doing very well. My rheumatologist is known as an expert in immune diseases world-over. I have several successful lupus-patient friends (successful in the management of their disease and in their lives in general). What an inspiration these ladies are to me!
My hope is to let everyone know that lupus needs the attention of the world. Any and all kinds of lupus need awareness. Whether it is joint-affecting, skin-affecting, energy-affecting or organ-affecting, we all benefit and have quality of life from the excellent research being done and from early diagnosis. I am the poster-child of early diagnosis for lupus, and my correct and swift diagnosis was due to patient / doctor education. My story was of serious, life-threatening illness budding into success. That is why continued research funding is crucial. It saved my life. And I believe further funding will eradicate lupus.
While I enjoy strong health now, lupus is a constant threat. It is ever present. I feel its effects and there is no cure. Not yet. I have faith there will be a cure soon. In the meantime, I’ll keep doing what I’m doing. And please don’t get me wrong – lupus patients can have a normal, wonderful life. I work out, I lift weights, I challenge anyone to say I’ve ever been in better physical shape (woo-hoo!) and I eat right.
In my particular case I do these things in moderation as my energy and pain level will allow. Usually I feel very good. If that’s not a success story, I don’t know what is. But again, had it not been for the knowledge of doctors and researchers determining the right drug regimens and treatment plans, my fate would have been drastically different. Until there is a cure, I will live well.
copyright Regan Mizuno 2009, Harmonics Engineering Services, LLC, all rights reserved. Regan is a singer-songwriter. She holds a degree in mechanical engineering and is working on a book about lupus. Please visit Regan at www.BeatLupus.com and www.ReganMizuno.com (Regan's music site). Thank you.