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Jan Farr
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It is well over 12 months since diagnosis. Ken has been on haemodialysis for 6 months. Low b.p. is an issue and so is extremely low pulse rate. He is to consider changing to peritoneal dialysis which will be kinder to the heart. His spirits are quite good and he has adjusted to a much lessened physical life style. Jan(wife) |
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Petri Povel
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Hi, I only just discovered this website. My husband (Henri age 76) has been diagnosed in January 2009 with myeloma. Haematologist pretty certain that he has amyloidosis as well (biopsy of kidney/heart/colon presently ruled out because of the state of his overall condition). He suffered heart failure in July 2008 which led to a triple bypass. The operation caused severe kidney problems. A broken hip in October was added to the misery.
He started chemo in February (just completed the second round) and is now also on thalidomide.
I have searched the internet on myeloma and amyloidosis, but would love to communicate with someone who is/has been touched by the disease. |
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Kaye Burgess
SA
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 Just letting you know that my contact email address is now kayeleneburgess@bigpond.com I am still happy to comunicate with anyone who would like to contact me. I've survived 33 months with cardiac amyloid, have been on lots of chemo the last of which, Revlimid, nearly 'finished me off'!! I'm now on a break before we try again with Velcade. Keep fighting, everyone. |
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Jan Farr
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 Yes we are a little bit sad, but at the same time relieved that Ken has made the decision to start dialysis.
His health - basically weakness and breathlessness has worsened over the last few weeks, As well as severely affecting the kidneys, his liver, skin, gastro-intestinal areas also have amyloids. He started thalidomine tablets recently -adding to the 38 that he already previously taking.
His spirit is good , so this is just another step in management of this disease.
He remains highly in praise of doctors involved in his situation. |
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Julie Gosley
Beerwah
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Hi just to let you know that Len is about to for fill his dream of a circle of the 'Big Island' and is still to reasonable health. Thanks to the support of family and friends and those on this site. Handed out so many pen so now there are people asking what amyloidosis is. Best of luck to all and hope to catch up on our travels |
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Ron Carby
Nambour
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Hello to you all and my deepest sympathy to those who have lost loved ones.
I am due to have a kidney biopsy on Monday. I have recently been diagnosed with moderate to high proteinurea. I have moderate peripheral neuropathy in my feet and toes and of late in my hands.
I have started suffering from hypotension , my normally high blood pressure is dropping nd I find I have to alter my blood pressure meds to try to minimise the dissiness.
I am not new to life threatening conditions . In 1998 I was dx with stage 3 colon cancer into six lymph glands. I had chemotherapy every Tuesday for a year. I have been ca free ever since. Unfortunately I have suffered other problems including pancreatitis, loss of gallbladder,kidney stones ,insulin intolerance,high cholesterol and subsequently intolerance to statins which break down my muscles.
My wife could not take the constant illness and left me a year ago. I now live alone and at age 58 i don't know how to feel about amyloidosis.
My nephrologist has not delayed in getting me in for the biopsy and he is fairly certain that it will be positive.
I am hoping for some form of nephritis but if i go with my gut feeling I fear the worst. When I was dx with ca I knew it would not kill me. The moment I learned of my proteinurea I felt a shadow fall over me. I will have to consider my options if I am dx ,I am not sure I can face chemo or even the thought of chemo again particularly if there is little to gain. My best wishes to you all.
Ron. |
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Kevin Cole
Perth
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I am sorry to say that Diane Cole died on day 10 of her melphalan chemo after her SCT. Her direct cause of death was from a staph. infection.The family has many concerns and many regrets about this unexpected loss. The heavy duty Chemo path is a tough and risky way to go particularly if you have a reduced heart function. With hindsight, and given the choice, we may have chosen alternatives, but Diane may have been a little too positive about her outcome.
So collect as much information as you can, ask the right questions, and take extra care to avoid a staph infection when in hospital.
Kevcol7@gmail.com |
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Linda
Melbourne
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Hello Ellen, true to me word I have accessed your website to do some research and learn more about amyloidosis.
Linda (Podiatrist) |
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Fran Jones
Orange Park, Fl. USA
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 ear Ellen,
It was with dejavu feelings I read your story about the trials you and your husband went thru when he first became ill.
I guess my Billy was one of the pioneers of amyloidiosis.
He became ill shortly after employment at the Oak Ridge Tennessee Nuclear plants in the USA.
He was around and over exposed to toxic chemicals, nuclear chemicals, gases, and one of the Oak Ridge reports said just about everything in the Periodic Table.
Ever since the Internet I have been searching for information on the disease and in 2001 ran across the amyloidosis information I found, and later the website for all the others who have been attacked by the disease.
I will always believe the disease was from the chemicals. He was 36 years old and in perfect health, and after working 2 years in the plants, his health was so poor, he was not able to work. In August 1985 he was diagnosed, and at that time there were only chemo treatments as trials, or at least that is what we remember about what the doctors told us. He was 41 when he passed away, and he had only been ill from 1983-87. The Myeloma cells were only 6% when he was diagnosed and I often wonder if he had myeloma along with the amyloid. After the initial diagnosis, and wer were told there was nothing they could do in 1985, we didnt have anywhere else to go.
I would be thankful if you or any other of the amyloid patients had the same type of diagnosis, or if when they were first diagnosed with amyloidosis, if there was a small amount of myeloma cells, and not many other results.
Thanks
fran
In Jan 1987, after the amyloidosis ravaged his organs, from his feet thru his heart, he passed away.
He did have the heart amyloid in the last part of his disease. we would have to go to the hospital and be on medication for congestive heart failure. He would lose 20 pounds of weight overnight from the fluid buildup.
I am so happy to see that medical research has improved and the prognosis is not what is was then.
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Kaye Burgess
Murray Bridge, SA
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I've read the recent entry by Jackie Forster and would like to extend an invitation her to feel free to contact me any time. I also have Cardiac AL Amyloidosis, and am interested in others' experiences with this illness.
I can be contacted by email at kytaka@bigpond.com.au or by phone at 08 85321402. |
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Jackie Forster
Swan Hill
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My husband was diagnosed with AL Amyloidosis in Nov 2006 and underwent a SCT that same year. He has been well now for 12 months and has 3 monthly checks with his haematologist at St Vincent's in Melbourne. His kidneys and heart are affected. I am interested in talking with anyone else with this disease. Cheers, Jackie |
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Vickie Hooson
Newcastle, NSW
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Dear Ellen and Jean,
Whilst catching up with the latest on Amy I read about your recent conference displays and would like to say thank you to the both of you for your wonderful persistence in fighting this disease. My family would like you to know how much we appreciate the work you do for all Amy patients in Australia. I was really pleased that you have found a way to reach the GPs, and many specialists involved in the care of patients who could very well have Amyloidosis. The comments from the GPs was very encouraging. Thanks to your role models I was able to help a family here in Newcastle when they were told a loved one had amyloidosis. They were grateful for the information in the brochure you designed and sent me. You are two very dedicated and special ladies. God bless you both.
The Hooson family. |
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Kaye Burgess
MurrayBridge, SA.
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I was so pleased to be able to meet up with Robert and Kevin, and their wives when in Perth recently. The three of us have cardiac amyloidosis, and as I've had no continuous contact with anyone else with this condition, they are both a great inspiration to me. I'd like to know if Robert (at nearly 9 yrs from diagnosis)is the longest surviving sufferer of this illness in Australia. He's obviously doing all the 'right' things, and having a great attitude about it all does helps. May the rest of us do as well??!! |
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E. M. C. Leibovitch
The Holy Land
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Ladies,
Your Melborne GP conference booth, looks so professional and immaculate.
You inspire me.
G-d bless you! |
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Robynne Siegert
Albany WA
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 G'Day! I am the twin sister of Robert Macdonald. (You know the guy who has cardiac amyloid and has been travelling this new journey for the past 8, nearly 9 years). It is not an easy path, I have seen, and if there is anything I would like to say, it is to remind anyone who has this disease and their families that we are a combination of body, mind and spirit. Survival depends on excellent health care, (which living in a place like Australia it is available) and remembering to also work on the mind and the spirit. I know my brother Robert maintains a beautiful garden which gives him a lot of joy and he feeds his sence of humour every day to find a laugh in the silliness of life.... Sometimes we can think doctors are born of an innate wisdom, giving them the ability to give you or your loved one a particular timespan left on this earth. Don't listen!!! Take the medicines these excellent people offer, but you be responsible for all the other facets of your life to enable the best outcome....... Take care and always be happy...
With love Robynne |
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Robert Macdonald
Western Australia
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Greetings from W.A. a meeting of three cardiac amyloid patients took place on Sat. 24th Nov. at Perth Airport, as Kaye from S.A. was on transit to Bali for a 2 week holiday. Present was Kaye Burgess age 53 diagnosed one & half years ago, Kevin Ashworth age 67 diagnosed two years ago who has just been on a 7 day holiday in Australia and Robert Macdonald age 56 diagnosed eight & three-quarter years ago who went on a 7 week holiday to England and Scotland in July/Aug 2007.
Anyone wishing to make contact with any of us forward your details to Ellen or Jean Reid.
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mona ponsock
baton rouge la usa
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My hudband was diagnosed with amyloidosis in the brain tissue in january, 2003. have not seen as much info in one sight as yours. can you furnish any additional info on amyloidosis in brain tissue. God bless you! mona ponsock |
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Tom Brown
Rylstone NSW
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Just like to say hello to Ellen Reid who I went to school with at Mt Victoria many many years ago, it is wonderful to see someones name from years ago, though sorry to say in rather sad circumstances, and see what they have done with their lives. all the best for the future Ellen from Tom.
I am semi retired and living with my wife on a 400 acre farm at Rylstone near Mudgee NSW so haven't moved to far from Mt Victoria. |
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Christine Knight
Toowoomba
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Hi there
I just came across Gordon Hooson's name by accident - knowing that I went to school with him in Taree - and when I was led to this website and have just read his story I am in awe at the dedication and love his family showed throughout and still do. I will stop crying regroup and get back in touch to see what I can do. I have just taken two years to confirm a diagnosis of fibromyalgia for my 23 year old daughter and feel very lucky considering what the diagnosis might have been. Well done to you all
CK |
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rosie brick
mount martha victoria
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My husband was diagnosed October 2005. His Cardiologist said " I have had three patients with cardiac amyloidosis and they all died within six months"!
After chemo through the Alfred with Merrol Cole-Sinclair taking care of us he is back playing golf and walking an hour a day. It's nearly two years. Never give up!! |
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Jean from Amyloidosis Australia.
Melbourne, Australia
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