Canberra, Australia; email@example.com
1957 / Class of '07 / Type: Lambda Light-chain / Kidney failure / Holistic treatment / Updated: 5/08
I am a 51 year old anglo-Australian currently living in Canberra ACT. I was born in New Zealand in a regional farming and orcharding area hence I would have been exposed to agricultural chemicals via top-dressing, frost pots in winter and spraying of nearby fruit crops. I also had radium treatment for a serious burn on my throat when I was a baby (1956-7). Another risk factor may have been that I worked for eight years in very remote Aboriginal Australia where the bore water was of very poor quality, and we found out later, contained many heavy metals.
I have a long history of reacting badly to pharmaceuticals, including a severe allergy to two antibiotics (anaphylactic shock), reactions to dental local anaesthetics containing adrenalin (heart palpitations) and I take a long time to come out of general anaesthetics. I had a serious car accident in 1991 in which I had head and face injuries, that were life threatening. I also crushed two vertebrae and damaged several ribs. Since then I have had chronic spinal and/or rib pain which was mainly mild but occasionally flared up to absolutely excruciating muscle spasms at times. I almost never took pain killers, due to fears of adverse reactions, but used rest, osteopathy and occasional massage to maintain my function. Another consequence of my time working in the desert involved having PTSD symptoms which fluctuated in intensity. These were treated by seeing a clinical psychologist who specialises in PTSD for debriefing as needed and taking homeopathic remedies occasionally for shock or anxiety.
In February 2007 I had a flare-up of pain on the left side of my spine in the damaged area. It was so severe I went to Casualty as I thought I was having a heart attack. They confirmed it was car accident related and sent me to my GP. She prescribed Voltaren and Endone but after 5 doses I began vomiting. The GP told me to cease the two medications and prescribed something to stop the vomiting. Two days later, on Sunday morning the vomiting recommenced and by Monday I was hospitalised on the assumption my overall weak state was caused by dehydration.
My kidneys were shown to have collapsed and my creatinine was shown to be 1100 plus (normal is 40-90). I was transferred out of ICU and into the renal ward. I was on dialysis in hospital for about three weeks. An initial renal biopsy had shown that the kidneys had failed due to a toxic shock reaction to an anti- inflammatory agent (assumed to be the Voltaren). I was administered 75mg of Prednisilone daily but had severe side effects from it and my creatinine did not go back below 200. My Renal Specialist slowly took me off the high dose steroid and my creatinine moved up from 200 to 269 over a few months. A second biopsy appeared to show the kidney condition was now chronic and it was expected I would quickly progress back into dialysis. The only medicine I was then prescribed was Aranesp (to boost my haemoglobin) and I was instructed to take one Caltrate tablet whenever i was eating a meal that included (a low dose) of protein. I was also following the "renal diet" very strictly.
At this stage no one imagined there was a diagnosis of MM in my near future. I decided I had the primary responsibility to keep my poor kidneys functioning as long as possible so I began an intensive self-help program aimed at supporting my body wholistically, but in particular to assist my kidneys. My family's homeopath continued to assist me with "supportive" remedies (non-substance remedies that would not put further strain on my kidneys.) My visits to my Osteopath became more regular and he also referred me on to a Chinese Acupuncturist who had experience treating people with chronic renal failure. In addition to these three practitioners, who were happy to collaborate and work as a team, I consulted a local medical person who had added training in Gerson Therapy (developed by Dr Max Gerson to treat cancer and other serious diseases). She had been trained in the Gerson Hospital in the USA. I began the Gerson therapy in a modified form appropriate to someone with chronic renal failure. My osteopath and my medical support worker also had qualifications in a new form of non- substance medication called the Nutra-Energetic System so I began to take Infocueticals as well.
When I had still been in the Renal ward, the Social Worker told me that sudden kidney failure can cause severe PTSD symptoms and I might like to receive counseling. It was then I realised how lucky I was to already have a strong psychological support person, who was invaluable at encouraging me to have a positive attitude towards my recovery.
I also added two practices I have never done before. Firstly I began receiving light at the local Mahikari Centre and later attended a course so I could both give and receive light. I also began seeing a Curative Eurythmy (CE) teacher who is trained in a healing/movement system developed by the late philosopher Dr Rudolph Steiner. These two practices are very subjective but also totally different in their approach: CE has been developed to cure disease, and I was shown how to perform the gentle movements prescribed for people with kidney illnesses. The movements are very gentle and slow, with a lot of mental concentration on various imaginative aspects as you perform the movements. I have never done anything like it in my life, but practising CE really lifts my mental state and makes me feel very well physically and mentally.
The Mahikari Centre makes it clear that the giving and receiving of light is a spiritual practice, and that it is not primarily intended as a vehicle of healing. Despite that disclaimer, I felt an immediate physical "relief" from receiving light. I now make this practise a part of my daily life and I experience an increased sense of overall well-being when giving or receiving light which lasts well beyond the time involved. The Mahikari practice focuses strongly on the kidneys, and therefore was a perfect for me.
That pretty much summarises my health regime except that I drink only reverse osmosis water, and although the Gerson diet and the renal diet are very similar, (low-sodium, low protein), I chose (as per Gerson) to make all my food organic (we grow a lot at home also) and my protein sources are vegetarian (Gerson stipulates this, but I have been predominantly vego for 30 years anyway so it was no issue. ) Almost everything I eat has been home prepared so I feel a bit like an astronaut taking my own water and food with me whenever I go out.
My first kidney function test after reorienting my health regime brought the good news that my creatinine had unexpectedly dropped from 269 to 256. I felt heartened by this and more determined than ever to try to do everything I could to help my kidneys.
That was the good news. The bad news was that the Renal Specialist got back a long-awaited new blood test he had sent to Queensland - that tested the free light chains in the blood. Normal is 6-26 and my test result was 17,000!!!! It was assumed that the test must be wrong so I was given the next available appointment in the Haemotology Department (in two months time). I spent a little bit of time on the internet looking up what could be wrong and there was nothing I saw with such a high reading (17,000) - and what I did see - Light Chain Deposition Disorder - was really scary so I took my Specialist's advice to "not fret" until I had further blood tests.
In the meantime my kidney function continued to improve, with the creatinine dropping to 249 and then to 231. My lovely GP was very encouraging encouraged me not to get into a panic.
The Haemetology appointment was in December and it was a complete change of pace to anything I have experienced before. Within days I had a bone marrow biopsy, 24 hour urine, a new blood test and an MRI. The biopsy indicated a very high percentage of bone marrow involvement (abnormal plasma cells) and the urine test indicated paraprotiens were at 1.46 (by memory). The blood test took ages to come back but the MRI was inconclusive saying no lytic lesions but I might have red marrow reconversion. I met with the two Haemetology specialists a few days later and they explained their diagnosis of MM and the treatments they wished to start immediately (3 chemotherapies and a high dose of steroids). My new blood test came back the next day and showed that my lambda free light chain reading had jumped 5000 to 22,000.
I won't go into the whole drama of the consultation and decision, except to say that the two H Specialists were impeccably polite and respectful of all my questions. They did say that the highest free light chain reading they had encountered was 700. They explained that with the high amount of flc protein in my blood, they expected my kidneys to fail very quickly if I didn't treat the MM. They did acknowledge that with my medical history of adverse reactions, treatment would be very challenging, but I was also at risk of heart attack and stroke from hyperviscosity, due to the high free light chains.
I imagine every other person on this list must have felt just as overwhelmed as I did at that moment of diagnosis and decision crunch-time. But with my previous experience of adverse reactions, and with my kidneys seeming to be improving, I just couldn't agree to subject my body to the massive chemical challenge of chemotherapy. I did believe the diagnosis but I also believed my body has always been strong and I felt I would live the rest of my life in better health (a better quality of life), if I didn't accept the treatment. My decision was predominantly intuitive, but I was also deeply afraid that I would die on my first dose, in some similar version to the anaphylactic shock I had after my first antibiotic injection. So it was not a rational decision from the point of view I could point to a large cohort of patients who "did nothing" in a straight medical sense and survived. But I did know that sometimes people do survive a catastrophic diagnosis unexpectedly and I knew of one MM sufferer, who had survived 11 years doing some of the things I was already started on. I had spent the week between the tests and the consultation to talk about treatment options, reading - firstly, "Living Proof" published in the UK by a Professor of English at Oxford, Michaerl Gearin-Tosch who survived MM for 11 years before dying from an infection after having a tooth out. He was shown to have 90 year old bones when diagnosed at age 54 but only suffered one fracture which healed in four weeks. I also re-read "Remarkable Recoveries" a collection of unexpected recoveries that have been published in Medical Journals. It had been on the reading list of a Uni course I had been studying in the 90s. So when I decided against beginning medical treatment, and to just try to live the rest of my life well, I did know that sometimes people do survive conditions that are considered medically terminal or incurable. It is not that I knew I would survive, more that I accepted that with my particular body, that is so over-sensitive and reacts (even to band-aids) that I had a better chance of a meaningful life if I continued on the path I was already on.
Since early January I have taken some time to grow into my new reality. I am well and happy, with my family totally supporting my decision. I have since had a bone density test and my bones are just below the lowest end of normal for a 51 year old premenopausal woman. I am glad I had the test because it helped me "get a grip" about where my bones were up to. I have had "bone pain" since my car accident in 1991, but if anything, that pain has eased, probably due to me really looking after myself now. I was a chronic over-worker before this health crisis.
I am trying to live one day at a time and live it well. I am lucky to have a basically sunny nature, but I am much more introspective now than I have ever been and I am trying to take much better care of my relationships and the environment. The new diagnosis has also meant that once again I have cause to be thankful I already had a clinical psychologist who knew all my background and who was accessible when I just wanted to talk through the unthinkable. She also had a lot of experience with cancer survivors and encouraged me in my positive attitude.
Medically I still see my Renal Specialist regularly and I am happy to report that my creatinine has fallen again to 224. He was very kind about my decision (re: the MM) and did not put any pressure on me. He said he would monitor me carefully and I may wish to start taking Calcitriol and some form of Bisphophemide (both to help the bones not deteriorate as fast.) At this point I have decided to leave well enough alone and see how my body responds to everything I am doing (in non-medical ways) over the long term.
My GP is also very understanding and that helps a lot when all my treatment preferences are outside the mainstream. One thing that has really stood out for me in this journey so far, is that all the people helping me, (both medical and non-medical) the GP, the Renal Specialist, the Clinical Psychologist, the Homeopath, the Osteopath, the Gerson Therapist, the Acupuncturist, the Curative Eurythmy teacher or the staff at Mahikari Centre - no-one has sought to influence my decision, and it is clear that some of them would have decided differently, if it was their choice, but all have supported me in the path I did chose.
I haven't met with the Haemetologists again but I really respect their training and their dedication (I could see one of them in the treatment room when I was having the biopsy - and they were so gentle and attentive with their patients.) It is just that their treatment involves such challenging drugs that I can't see any place for me in their treatment story. But when I read the stories on this list, I know that standard treatment is life saving and life enhancing for many people. A few months ago I was alerted to a new medical treatment that is still at the experimental stage. It uses a cytoluminator to laser kill abnormals cells that are illuminted by a photo-sensitising agent that stays in abnormal cells much longer than normal cells. A very nice Dr in the ACT has used the process with some other forms of cancer and had remarkable success. I consulted him and he spoke to both my specialists. My Renal Specialist had two concerns - the photosensitising agent is an aluminium salt and therefore risky to my compromised kidneys and the massive die-back of abnormal plasma cells may also challenge my kidneys. I have decided not to embark on the treatment at this stage, but I would, if not for the risky kidneys.
I just wanted others to know about it. People with MM whose kidneys are in good shape may benefit. I am not sure about the protocols of this site so I will not name the Dr, but am happy to be emailed via above email if anyone wants the number of his medical practice.
I am really interested in how high my light chain result was (22,000) and the fact that it has stayed so high now for nine months. Although I have read everything I could find on the net about MM and high flc results, I couldn't find anything so high. It is a relatively new test but I am wondering if anyone else on this list also has a really high reading - in 5 figures.
Sometimes I wonder if perhaps I have a new disease, one that makes the flc go right off the radar, but doesn't kill you as quickly as they made it obvious they expected I would die ("wouldn't expect you to be still here in two months"). So I would love to talk to any other "high fliers" as I feel as if my body has simply flown off into space and is doing something no one understands.
Thank you for reading my long story and good luck to everyone who is also journeying along with MM an uninvited backseat passenger.
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