After the last post ... I googled this Dr. Radar ... only to find a page plus in "quack watch," fraud claims, shading dealings, etc. It would appear that my desperation was/is in full bloom.
I will do much more research on any type of stem cell therapy I look to receiving in the future before I post.
Up until this point, I have researched doctors involved in the treatments I sought. Even prior to this venture, when I just needed a surgery. I would want to know where you went to school, were you board certified in your claimed specialty, how long you been in practice, etc.
I am sorry ... talk about slapping myself in the face!!! I know that money is going to be the biggest issue for me making my life a long lived reality. But I refuse to be stupid about it. Apparently, it would seem, that I still have some pulling of my head to do so that it isn't so far up my ass I can't see straight.
Time for bed as I am exhausted from the emotional roller coaster of this ride.
g'night!!
et
Monday, May 10, 2010
Does intervention come this fast ???
I no sooner hit post on the last blog entry when my cell phone rang.
I had inquired about a stem cell procedure to be done outside the US.
The call came from a man who lives right here in AZ. He and his wife had their son treated for a "can't do anything more" seizure disorder. Hope was dim. They took him to be treated by Dr. William Radar, two years ago. They have had remarkable results. This gentleman shared my outlook about the US government, politics, religion and what happens when you tie all three together in regard to healthcare and those we love.
I am in yet another process. To save my life and hopefully, my hope anyway, to make some noise about why and who is holding up these sorts of treatments in this country. How shameful is it that I would have to travel to another country where these sorts of treatments have been going on for 15-20 years. This particular doctor, treating patients, many type one diabetics, for 15 years!!!
I may not be completely "cured" but this would not require antirejection drugs, and if nothing more, will, as would the islet cell transplant, stop my critical lows allowing me to regain better control.
The problem for me will remain, the funds to get me there and pay for the procedure.
So ... now .... how do I get people to support me in my effort to undergo stem cell therapy??? I know that there are many people out there that believe in this science, and I have stated for a long time that I believe this is where many diseases will eventually end. Please help me continue with the fight.
I should be getting another couple of calls in the next few days in regard to what is expected, review of my case, and approximate expectations of such a treatment on my current status.
Thanks again for the continued support.
PS: The quilt tickets are not yet gone, we contemplated pulling a name from the hundred we sold already, but were holding out hope that something else would come along. Perhaps .... that something has arrived.
et
I had inquired about a stem cell procedure to be done outside the US.
The call came from a man who lives right here in AZ. He and his wife had their son treated for a "can't do anything more" seizure disorder. Hope was dim. They took him to be treated by Dr. William Radar, two years ago. They have had remarkable results. This gentleman shared my outlook about the US government, politics, religion and what happens when you tie all three together in regard to healthcare and those we love.
I am in yet another process. To save my life and hopefully, my hope anyway, to make some noise about why and who is holding up these sorts of treatments in this country. How shameful is it that I would have to travel to another country where these sorts of treatments have been going on for 15-20 years. This particular doctor, treating patients, many type one diabetics, for 15 years!!!
I may not be completely "cured" but this would not require antirejection drugs, and if nothing more, will, as would the islet cell transplant, stop my critical lows allowing me to regain better control.
The problem for me will remain, the funds to get me there and pay for the procedure.
So ... now .... how do I get people to support me in my effort to undergo stem cell therapy??? I know that there are many people out there that believe in this science, and I have stated for a long time that I believe this is where many diseases will eventually end. Please help me continue with the fight.
I should be getting another couple of calls in the next few days in regard to what is expected, review of my case, and approximate expectations of such a treatment on my current status.
Thanks again for the continued support.
PS: The quilt tickets are not yet gone, we contemplated pulling a name from the hundred we sold already, but were holding out hope that something else would come along. Perhaps .... that something has arrived.
et
I need Divine Intervention ... and some guidance
Hello all!!
This could very well be one of the longest posts made to date.
I need to vent .... BIG TIME!!
1. I am a Jack Kervokian fan!!
2. I believe in euthanasia ... and hope that when I get to that point, I am allowed to just go, with my dignity in tact. Pain free of course.
3. I am so incredibly frustrated with the political happenings in this great country we live in. I am referring to the issue that effects me directly and has for a good portion of my life. HEALTH CARE!!
I don't think it has been any great secret that I have been deeply down, depressed for the last several weeks since learning of my rejection from the Islet Cell Transplant Trial. It was all looking so good, to the point they gave me the green light to wrap up the process, and BOOM!! That last blood test, the PRA antibody at 63%. Well .... in the real world, this result would NOT play the part it played in the trial. I believe that my daughter was right on the $$$ with her thought that the FDA and the NIH want only the best possible outcomes for the trial process so that it can be FDA approved. If this was the "REAL WORLD" ... and it become very clear in the aspect that the whole organ pancrease transplant has been offered to me three times now.
Ok ... lets look at this picture.
Why .... because I am/would still wait a little longer for a potential donor. That PRA reading is still going to be 63%, and at the current time, I still have very good kidney function. That was one risk/benefit I was willing to take with the islet trial that I am not willing to take with the pancrease transplant. I would risk losing my kidney function, no doubt sooner than later, and then I would be on the long waiting list for a kidney. Something my loving daughter isn't willing to give up "cause they don't grow back." LOL
So ... lets go to another irk ... WHY .... why is the USA holding up this process? Why are therapies such as adult stem cell therapy (such as that in which Sandra took her son to South America to have done)being done all over the world with excellent results. Why ... is the US so far behind that of other countries in finding a cure, or at this point, a much more human method of treating and managing Type I diabetes. Let me sum it up .... in one word!!! PROFIT !!!
That's right... money ... think about it. Why would the US want to come close to a cure when there are so many phamaceutical companies sitting on Capital Hill with all those politians. Who is getting rich here ... who is benefitting ... well it most certainly is not those of us who suffer with these dreaded diseases. WHY ... would a cure be unleased when there is all this money to be made.
Let me tell you a little bit about my life. I have spent my whole adult life, since turning 18 and falling off my mom's insurance trying to maintain health insurance that would cover my medications. Think of how pissed I was when I wasn't working and pregnant with my daughter to have found out my husband at the time had lost his job and didn't even tell me!!! That she was delivered and then the two of us spending 7 days in the hospital, her in ICU for a day or two. A pricely little venture. Or those insurance companies that required me to be on the job for a year before they would even cover me due to a pre-existing illness. People can bash places like France, Italy, Canada for thier socialized medicine, but it has more pluses than we have going on here in the US. I spent almost $15,000 last year on doctor visits, medications, and pump supplies. Then my tax adviser wants to know what I do for fun?? REALLY !!! What the hell is left when I dish out that sort of $$ just to maintain my life force?? NOTHING!! I have a mortgage, your basic utilities, my yard looks like it belongs to someone who is from the ghetto. There is nothing extra by any means. I spent ten years out of work because I was told to "put your affairs in order." That was in 1996 ... I tried to keep working, but who wants to employ someone that keeps crashing to the point she doesn't even know where she is, never mind what she is doing or who she is talking too? So ... I stopped. Then I spent the next two years trying to prove that this was killing me and making my life totally unmanagable. My PCP at the time finally told me "It's time to hang your pride up and let them know what you live with." You have no idea what that did to me.
That would bring me back to my current mental status. I have been hit that hard again. I am devastated. I am frustrated. I am PISSED!!! I am pissed that like so many others in this country, I am fighting to stay alive, fighting to remain a vital participant in society. During that time, I move across the country. A move I don't not for one minute regret because the weather here in AZ is very good to my bones and body. I am stiff... but no where near what I was living in the cold, humid atomosphere of New England. I went back to college, figured I would use my medical knowledge to make some money. Got certified in medical transcription. Got a job, by shear stroke of luck, and have since (5years) gone even further in my education and last November became certified as a Medical Coding Associate. Now, I had plans to continue my education even a little further and go for the next level and get my BA in Health Information Technology. Well ... I have to be honest. Lately, I don't give a rats ass if I wake up. I am that tired. But, then I get pissed at our society and our govenment for the hold they have on our doctors, researchers, and scientists. Those who had dedicated thier careers to finding cures and acceptable treatments for some of the worst disease on the planet.
So ... again ... WHY!??!! Why are we going to allow the government to hold the keys to if we live or die?? Or that the next generation of children will have to go one day knowing what I have had to learn and know from an age that was just way too young. We have diabetes, childhood cancer, Parkinson's disease (this one has a personal meaning for me as well, my mother suffered from this), spinal injuries. They all sit on the cusp of great advancement ... and that advancement has been proven in other countries for many years. I have discovered in the last couple of weeks that I too, could pursue the adult stem cell therapy in which Sandra took her son out of the country for. One big problem. I don't have the money. I have been a single mother for the past 17 years. I could make lots of excuses as to why I don't have that sort of cash, but why? A good portion of the country is living below the poverty level. I wonder ... how many of those families are dealing with a chronic, deadly, or incurable disease??
My latest quest is that I leave the US to undergo this treatment. With much less risk than a whole organ transplant. In Germany, I can have the procedure done ... 7 days in country with follow up labs that can be done here, for the bargin price of $17,000 .... and that is just for the procedure. I wonder how some of these facilities feel when they have so many patients coming from the US. I can't help but feel that people that can afford to take this sort of action, are so very blessed. As Sandra had stated to me, and what parent wouldn't, do all they can to save thier child?? KUDOS to her and her husband for making that choice!! and that they were able to financially do it.
I told my daughter last week that I was seriously thinking of smoking lots of dope, and becoming some sort of political radical for the healthcare movement!! Oh, by the way, I am all for the legalization of marijuana as well.
I don't know where to turn, I don't know how to come up with these sorts of funds. I am tired of those people who scream religious fanaticism when the term "stem cell" is mentioned. Perhaps they don't know anyone who has ever had to deal with a devastating, deadly, life altering disease. Maybe they should, as I have LOTS of faith in a God that I believe has placed me here on earth for a very good reason. I wish I knew what that reason is, but if it means I have to die for it, so be it. I will do what I have to do to make sure that the science that is out there and ready to be put into place ... takes place!! and sooner rather than later.
I need to seek out some professional guidance. I am going to drill every medical professional I know with intelligence and a working knowledge of the science for guidance in my search. Of all the doctors I deal with on a regular basis in my own life, only one of them, and she isn't a doctor, she is a PA, was in enthusiastic support of my undergoing the trial. Someone out there must have the balls (sorry, I can't think of any better word as my fingers type along this fast) to help and give thier opinions in helping me achieve this goal. I want to maintain my hope. I have prayed hard, and tried to clear my head as to what I should do. Not one person who has been supporting me in this venture has told me to give it all up. On the contrary, they all have told me to take the time I need to regroup, but PLEASE DON'T GIVE UP!!
For that sort of support, I can not thank them enough. They see far further into me than I do at times. I have a knack for turning certain things off until I feel I am ready to plow ahead and let it all go.
We have been working with Maggie to train her to pick up on the scent of my low blood sugars. Which I think she is actually catching onto. The problem is getting her to grab my attention when my blood sugar is 28 like it apparently was last week when I have absolutely no recollection as to how or when I somehow managed to plow my way to the kitchen, or shut my pump off... it is all becoming too familiar, and too damn frightening to think of what might happen if I am alone. A trainer will be working with us in a couple of weeks. Hopefully, and she feels confident, we can teach Maggie to act as my service dog when alone.
For me to undergo a stem cell therapy, would, if nothing else, bring me the joy of lessened lows, less drastic, less fatal/critical. How can I possibly explain these situations to someone who has never witnessed one, or experienced on themselves?? I wouldn't wish an episode of such on anyone.
Please help!!!! I am begging that anyone, someone you know, or a friend knows, help me find the funding, the knowledge to get to where I want to go, and help the others that are deperately waiting for positive results and not empty political promises.
Thanks for letting me rant off ... these are things I am very passionate about and I will not in any way, shape, or form, apoligize for my beliefs. I have been listening to these sorts of promises since the mid-70's "Oh, one day scientists hope" .... come on people ... the scientists are hoping that the politians get thier hands out of the pot!!!
Peace and Love to all for the continued love and support!!
eliza
This could very well be one of the longest posts made to date.
I need to vent .... BIG TIME!!
1. I am a Jack Kervokian fan!!
2. I believe in euthanasia ... and hope that when I get to that point, I am allowed to just go, with my dignity in tact. Pain free of course.
3. I am so incredibly frustrated with the political happenings in this great country we live in. I am referring to the issue that effects me directly and has for a good portion of my life. HEALTH CARE!!
I don't think it has been any great secret that I have been deeply down, depressed for the last several weeks since learning of my rejection from the Islet Cell Transplant Trial. It was all looking so good, to the point they gave me the green light to wrap up the process, and BOOM!! That last blood test, the PRA antibody at 63%. Well .... in the real world, this result would NOT play the part it played in the trial. I believe that my daughter was right on the $$$ with her thought that the FDA and the NIH want only the best possible outcomes for the trial process so that it can be FDA approved. If this was the "REAL WORLD" ... and it become very clear in the aspect that the whole organ pancrease transplant has been offered to me three times now.
Ok ... lets look at this picture.
Why .... because I am/would still wait a little longer for a potential donor. That PRA reading is still going to be 63%, and at the current time, I still have very good kidney function. That was one risk/benefit I was willing to take with the islet trial that I am not willing to take with the pancrease transplant. I would risk losing my kidney function, no doubt sooner than later, and then I would be on the long waiting list for a kidney. Something my loving daughter isn't willing to give up "cause they don't grow back." LOL
So ... lets go to another irk ... WHY .... why is the USA holding up this process? Why are therapies such as adult stem cell therapy (such as that in which Sandra took her son to South America to have done)being done all over the world with excellent results. Why ... is the US so far behind that of other countries in finding a cure, or at this point, a much more human method of treating and managing Type I diabetes. Let me sum it up .... in one word!!! PROFIT !!!
That's right... money ... think about it. Why would the US want to come close to a cure when there are so many phamaceutical companies sitting on Capital Hill with all those politians. Who is getting rich here ... who is benefitting ... well it most certainly is not those of us who suffer with these dreaded diseases. WHY ... would a cure be unleased when there is all this money to be made.
Let me tell you a little bit about my life. I have spent my whole adult life, since turning 18 and falling off my mom's insurance trying to maintain health insurance that would cover my medications. Think of how pissed I was when I wasn't working and pregnant with my daughter to have found out my husband at the time had lost his job and didn't even tell me!!! That she was delivered and then the two of us spending 7 days in the hospital, her in ICU for a day or two. A pricely little venture. Or those insurance companies that required me to be on the job for a year before they would even cover me due to a pre-existing illness. People can bash places like France, Italy, Canada for thier socialized medicine, but it has more pluses than we have going on here in the US. I spent almost $15,000 last year on doctor visits, medications, and pump supplies. Then my tax adviser wants to know what I do for fun?? REALLY !!! What the hell is left when I dish out that sort of $$ just to maintain my life force?? NOTHING!! I have a mortgage, your basic utilities, my yard looks like it belongs to someone who is from the ghetto. There is nothing extra by any means. I spent ten years out of work because I was told to "put your affairs in order." That was in 1996 ... I tried to keep working, but who wants to employ someone that keeps crashing to the point she doesn't even know where she is, never mind what she is doing or who she is talking too? So ... I stopped. Then I spent the next two years trying to prove that this was killing me and making my life totally unmanagable. My PCP at the time finally told me "It's time to hang your pride up and let them know what you live with." You have no idea what that did to me.
That would bring me back to my current mental status. I have been hit that hard again. I am devastated. I am frustrated. I am PISSED!!! I am pissed that like so many others in this country, I am fighting to stay alive, fighting to remain a vital participant in society. During that time, I move across the country. A move I don't not for one minute regret because the weather here in AZ is very good to my bones and body. I am stiff... but no where near what I was living in the cold, humid atomosphere of New England. I went back to college, figured I would use my medical knowledge to make some money. Got certified in medical transcription. Got a job, by shear stroke of luck, and have since (5years) gone even further in my education and last November became certified as a Medical Coding Associate. Now, I had plans to continue my education even a little further and go for the next level and get my BA in Health Information Technology. Well ... I have to be honest. Lately, I don't give a rats ass if I wake up. I am that tired. But, then I get pissed at our society and our govenment for the hold they have on our doctors, researchers, and scientists. Those who had dedicated thier careers to finding cures and acceptable treatments for some of the worst disease on the planet.
So ... again ... WHY!??!! Why are we going to allow the government to hold the keys to if we live or die?? Or that the next generation of children will have to go one day knowing what I have had to learn and know from an age that was just way too young. We have diabetes, childhood cancer, Parkinson's disease (this one has a personal meaning for me as well, my mother suffered from this), spinal injuries. They all sit on the cusp of great advancement ... and that advancement has been proven in other countries for many years. I have discovered in the last couple of weeks that I too, could pursue the adult stem cell therapy in which Sandra took her son out of the country for. One big problem. I don't have the money. I have been a single mother for the past 17 years. I could make lots of excuses as to why I don't have that sort of cash, but why? A good portion of the country is living below the poverty level. I wonder ... how many of those families are dealing with a chronic, deadly, or incurable disease??
My latest quest is that I leave the US to undergo this treatment. With much less risk than a whole organ transplant. In Germany, I can have the procedure done ... 7 days in country with follow up labs that can be done here, for the bargin price of $17,000 .... and that is just for the procedure. I wonder how some of these facilities feel when they have so many patients coming from the US. I can't help but feel that people that can afford to take this sort of action, are so very blessed. As Sandra had stated to me, and what parent wouldn't, do all they can to save thier child?? KUDOS to her and her husband for making that choice!! and that they were able to financially do it.
I told my daughter last week that I was seriously thinking of smoking lots of dope, and becoming some sort of political radical for the healthcare movement!! Oh, by the way, I am all for the legalization of marijuana as well.
I don't know where to turn, I don't know how to come up with these sorts of funds. I am tired of those people who scream religious fanaticism when the term "stem cell" is mentioned. Perhaps they don't know anyone who has ever had to deal with a devastating, deadly, life altering disease. Maybe they should, as I have LOTS of faith in a God that I believe has placed me here on earth for a very good reason. I wish I knew what that reason is, but if it means I have to die for it, so be it. I will do what I have to do to make sure that the science that is out there and ready to be put into place ... takes place!! and sooner rather than later.
I need to seek out some professional guidance. I am going to drill every medical professional I know with intelligence and a working knowledge of the science for guidance in my search. Of all the doctors I deal with on a regular basis in my own life, only one of them, and she isn't a doctor, she is a PA, was in enthusiastic support of my undergoing the trial. Someone out there must have the balls (sorry, I can't think of any better word as my fingers type along this fast) to help and give thier opinions in helping me achieve this goal. I want to maintain my hope. I have prayed hard, and tried to clear my head as to what I should do. Not one person who has been supporting me in this venture has told me to give it all up. On the contrary, they all have told me to take the time I need to regroup, but PLEASE DON'T GIVE UP!!
For that sort of support, I can not thank them enough. They see far further into me than I do at times. I have a knack for turning certain things off until I feel I am ready to plow ahead and let it all go.
We have been working with Maggie to train her to pick up on the scent of my low blood sugars. Which I think she is actually catching onto. The problem is getting her to grab my attention when my blood sugar is 28 like it apparently was last week when I have absolutely no recollection as to how or when I somehow managed to plow my way to the kitchen, or shut my pump off... it is all becoming too familiar, and too damn frightening to think of what might happen if I am alone. A trainer will be working with us in a couple of weeks. Hopefully, and she feels confident, we can teach Maggie to act as my service dog when alone.
For me to undergo a stem cell therapy, would, if nothing else, bring me the joy of lessened lows, less drastic, less fatal/critical. How can I possibly explain these situations to someone who has never witnessed one, or experienced on themselves?? I wouldn't wish an episode of such on anyone.
Please help!!!! I am begging that anyone, someone you know, or a friend knows, help me find the funding, the knowledge to get to where I want to go, and help the others that are deperately waiting for positive results and not empty political promises.
Thanks for letting me rant off ... these are things I am very passionate about and I will not in any way, shape, or form, apoligize for my beliefs. I have been listening to these sorts of promises since the mid-70's "Oh, one day scientists hope" .... come on people ... the scientists are hoping that the politians get thier hands out of the pot!!!
Peace and Love to all for the continued love and support!!
eliza
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