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Trouble With Doctors In Australia
A mother of a young boy with congestive heart failure and dilated cardiomyopathy in Australia illustrates that stem cell research ignorance is not limited to only the United States. In the latest
Repair Stem Cell Institute's newsletter, Michaela writes how the doctors (cardiologists) in Australia have mistreated her son Lee, 16, and ridiculed the adult stem cell treatment that has already improved Lee's condition greatly.
Adult Stem Cell Therapy Ridiculed
Lee went to Thailand in February 2009 and was treated with his own adult stem cells taken from his blood. The stem cells were injected into Lee's heart for his congestive heart failure and cardiomyopathy. The therapy has helped Lee and at this time, he is living life like a normal child.
This is from Michaela (Lee's mother):
For many years I'd taken note of the progress with stem cell research believing this was the road I'd take for Lee but I had no idea it was already being done overseas. If I had known, I would have sought help sooner.
There is very little info being put out in Australia and the Doc's do a great job of dismissing what is there as fantasy. The treatment we have received from the Medical Profession is unbelievable! I have been ridiculed, portrayed as a bad mother and have been threatened with treatment being withheld for Lee if I continued to believe in the ability of stem cells and didn't consent to transplant.
I now take a representative from the Consumer Health Advocate org with me to each appointment just to keep things civil. Lee wasn't born with the condition Dilated Cardiomyopathy, corrective surgeries for Aortic Stenosis is to blame. His case has been one “stuff-up” after another and they'd like nothing more than to sweep him under the carpet and I feel transplant was how they planned to do this. They left him for
11 years with no attempt to fix his valves knowing the heart couldn't continue to work at that rate.
So far, I haven't put Lee forward as an advocate for stem cell therapy in Australia. I've posted the odd thing on Facebook groups but mostly I have kept quiet. I've just sat back watching him go from strength to strength praying for the day I can put him out there as proof that this is the future in medicine. Lee's heart is still way too big and his EF is low, on paper he's in a bad way. I'm in regular contact with the surgeon Dr Permyos and he has a strong belief that Lee will be successful.
When you get to end stage Congestive Heart Failure you don't have reductions in heart size & BNP and your dependancy on Lasix increases, it doesn't cease. He no longer suffers shortness of breath or palpitations and he plays Squash for school sport. Something is at work David and it's more than wishful thinking! If you think Lee's case may give hope to someone else than I'm prepared to provide you with any info you need. I know Lee was the first child treated for heart failure, maybe others might consider the surgery for their child rather than take the dreaded transplant alternative. I'm so glad I took the chance with stem cell therapy and I'll do it again if I have to. Lee would not be alive and living an active life without it!
Mother Takes Control Of Son's Health Care
Earlier, Michaela
had written to Dr. Davis at the Heart Scan Blog (I slightly changed the title of his post for this post) bemoaning Australia's cardiologists for being uninformed on the issue of nutritional supplements (in particular Vitamin D) and stem cell research. Most importantly, she reports that her son Lee is doing better thanks to the adult stem cells. Here is her letter from the Heart Scan Blog :
Hi Dr Davis,
I wrote to you back in July regarding my 15 year old son's need for a Heart Transplant through a failed Ross Repair and the possible Vitamin D connection. You sent me some valuable links and I thank you again for that.
I just wanted to let you know, I think you have given me the answers. I increased Lee's Vitamin D supplement to 6000U a day and, along with the recommended nutritional supplements of US Cardiologist Dr Stephen T Sinatra, there have been remarkable improvements! Lee also had 70 million of his own Adult Stem Cells injected into his heart in February. As we know, Stem Cell Therapy takes time and Lee was looking like time was quickly running out.
I have removed him from the transplant list. He is now reading normal Kidney function, the BNP (Brain Natriuretic Peptide, a measure of heart failure] has dropped by 7000 and his liver size has reduced to where it no longer causes him discomfort. The liver tests show it's still affected but it's function is improving each month. His last Echo was in early July and there had been a reduction in the size of his heart, which is so important.
To the Doc's, Lee can't get better, there is only transplant or death so you can imagine the surprise on their faces to see him looking and feeling so well with their tests to back it up. Still, even though it's staring them in the face, they don't want to know about it. They have no interest in what supplements he is on or Stem Cell therapy. God help their other patients. I view them in the waiting room and think of them as lambs to the slaughter.
We are not spoiled for choice with Doc's here in Western Australia. I have to take what I can get and there is not many who would take on Lee's case. He was number 1 on the transplant list and a most urgent case. Not many were willing to even look at him with his cardiac history and all I had to help was the arrogant Doc's at the Advanced Heart Failure Unit. They were not at all interested in his secondary hyperparathyroidism. I suppose it didn't matter what else he had compared to his heart problems.
Anyway, I'm writing to thank you. Lee would be transplanted or dead now if it wasn't for Dr's like you sharing their knowledge online. I wish I had researched things years ago, Lee might not have sunk so low if I had. I don't know if the transplant can be held off indefinitely, but like I tell Lee, "Stay well. There are amazing people out there doing amazing things, if you can just hang on. The miracle is around the corner." He's so well, you'd have to see him to believe it. But I have 7 kids and Lee is as physically active and as well as the other 6! For how long he can stay like this, I don't know but if his ejection fraction [a measure of left ventricular strength] can keep climbing and his body gets stronger, I have hope for another attempt at valve replacement.
I'm still shocked and angry that nutritional supplements have never been mentioned in the 15 years I've been dealing with cardiologists. Surely they know about them. I have read through dozens of reports online of the benefits of them--Why haven't they?! Thank God for the online Doc's such as yourself, the valuable info would never make it out of a Doctor's office in Western Australia! I've had to leave my country for Stem Cell therapy and then implore overseas Doc's for advice and information. What does that say for the Australian Medical Profession? Not a lot! They put him in the position he is in yet don't want to help get him out.
I'm so very grateful to you, thank you and God bless.
Michaela
Taking Control Of Your Own Health
Michaela and Lee still face a long battle as though the stem cells have helped Lee tremendously, he is still far from perfectly healthy. However, it is unfortunate that their battles have been with the doctors, rather than concentrating on Lee's heart. I imagine there are many of you out there who face similar battles with your doctors who tell you to wait for the long term studies on adult stem cells to be done. Unfortunately, many of us won't be alive to see the long term results of studies that haven't even started yet. Do your own research - similar to what Michaela has done. Be proactive and take control of your health- decide what is right for you. These days, with the internet, all the information is at our fingertips.