Smorgass Bored Supporters - Please Read
- Thread starter Bigtruck
- Start date
jackson said:
Fellow AZ'ers I have received the following response to my e-mail - it seems this doctor is at least willing to speak with Doug to possibly help determine his medical circumstances for this trial - anyone know how to get this directly to Doug? - Jackson
Thank you and many others who have emailed me today. However, community support is not a consideration for inclusion in this, or any other clinical trial I've ever been involved with.
Federal law and the FDA regulate very exactly what medical circumstances are allowable for participation in this research, and exemptions are not issued based on community petition.
I would be glad to speak to your friend, or to any interested patient or doctors about percutaneous aortic valve replacement for patients at high risk for complications of surgical valve replacement.
Please convey to the billiards forum my respect for the support you've shown Mr. Wiley.
Regards,
Alan W. Heldman, MD, FSCAI
Professor of Medicine, Interventional Cardiology
Vice Chief, Cardiovascular Division
Director of Translational Programs, Interdisciplinary Stem Cell Institute
University of Miami, Miller School of Medicine
technically yes but . . .
Probably time to cease the e-mails, we got their attention! Although Doug has to meet the criteria, doctors are human too. Never hurts to encourage them to do what you want them to do.
I'd say this e-mail project is a success, now we have to get Doug's doctor moving. I think we have people working on that end already.
Hu
Probably time to cease the e-mails, we got their attention! Although Doug has to meet the criteria, doctors are human too. Never hurts to encourage them to do what you want them to do.
I'd say this e-mail project is a success, now we have to get Doug's doctor moving. I think we have people working on that end already.
Hu
jackson said:
I thought it was AMA rules that you couldn't take into account community support, or really any type of encouragement like that, into making a decision on treating a patient?
Bleh.
So my dad up until recently studied and was a specialist in cardiology. If Smorgie or someone else could give me a heads up on exactly what is wrong with his heart, I could talk to my father and see if there's anything that could help that may have been overlooked. No promises though.
Bleh.
So my dad up until recently studied and was a specialist in cardiology. If Smorgie or someone else could give me a heads up on exactly what is wrong with his heart, I could talk to my father and see if there's anything that could help that may have been overlooked. No promises though.
Agree
I agree with Hu. We should probably not flood them with any more e-mails.
Additionally, I appreciate what they are saying concerning following protocol, but I assure you that if Doug is a viable candidate for this procedure he WILL get in. I believe it.
JoeyA has been in contact with Doug & Barbara. They have the information about the clinical trial. I have also pm'd Doug myself.
Now come on Doug!!! Time for a Smorgass Bored Z shot! You might not get in, but you gotta try!!
Ray
ShootingArts said:
I agree with Hu. We should probably not flood them with any more e-mails.
Additionally, I appreciate what they are saying concerning following protocol, but I assure you that if Doug is a viable candidate for this procedure he WILL get in. I believe it.
JoeyA has been in contact with Doug & Barbara. They have the information about the clinical trial. I have also pm'd Doug myself.
Now come on Doug!!! Time for a Smorgass Bored Z shot! You might not get in, but you gotta try!!
Ray
gray area
I have participated in a few clinical trials myself. Generally there is a little more gray area than the doctor seems to indicate and there are exceptions made if they shouldn't damage the validity of the study. That doesn't mean that Doug can get in regardless but if some areas are a little marginal there are decisions made, or that has been my experience. Doug might get in, no question. He may not qualify, no question. However if he falls in that gray area a doctor can be swayed one way or the other by various things including our e-mails.
Hu
I have participated in a few clinical trials myself. Generally there is a little more gray area than the doctor seems to indicate and there are exceptions made if they shouldn't damage the validity of the study. That doesn't mean that Doug can get in regardless but if some areas are a little marginal there are decisions made, or that has been my experience. Doug might get in, no question. He may not qualify, no question. However if he falls in that gray area a doctor can be swayed one way or the other by various things including our e-mails.
Hu
Bigtruck said:
You know, whenever someone new joins AZB I tell them there are some good folks here. I'm going to have to reword that in future.
I can honestly say I've never known so many good, caring & thoughtful people in one place in my life. Hell, I can't even think of the words that sum up just how good the members of AZB are! Not only am I glad that Doug has so many great friends here, I'm truly humbled by you all, and so very pleased to be a part of this forum.
I'm really not the most religious person you'll find, but God bless you all.
I can honestly say I've never known so many good, caring & thoughtful people in one place in my life. Hell, I can't even think of the words that sum up just how good the members of AZB are! Not only am I glad that Doug has so many great friends here, I'm truly humbled by you all, and so very pleased to be a part of this forum.
I'm really not the most religious person you'll find, but God bless you all.
I would bet that when these types of clinical trials come up then those that run them probably get all kinds of pleas for people to be included. I am equally sure that there are rules and criteria and that those rules and criteria can be bent and tweaked as they can in all other areas of life.
However getting attention is not a bad thing and hopefully it gets them to look a little closer at Doug's situation and IF he is on the line of meeting the criteria then perhaps the outpouring of support will help tip the decision in Doug's favor.
You people truly are the greatest!
However getting attention is not a bad thing and hopefully it gets them to look a little closer at Doug's situation and IF he is on the line of meeting the criteria then perhaps the outpouring of support will help tip the decision in Doug's favor.
You people truly are the greatest!
I dont' think I've had time to stop and post here, today, but I was glad I saw the thread. I did say thanks to Big Truck for posting the thread. I'm real glad someone is able to do some research on SmorgassBored's situation and help him find real help. I haven't written anyone, yet. I haven't had time to slow down much and when I did have time, there was some controversy over what to write. So, I've been waiting until I could read through the thread to get started up. I've read some of the posts as they hit my inbox, all day. I will do what I can to help. I know he would do the same for any of us.
Thank you, SmorgassBored for being a good friend and keeping us laughing. We'll do our best to keep or make you well enough to continue.
Thank you, SmorgassBored for being a good friend and keeping us laughing. We'll do our best to keep or make you well enough to continue.
Bigtruck said:
If anyone else wants to e-mail the clinical trial people in Florida, Be sure and thank them for the important work they are doing!
It appears they will certainly consider Doug for the trial, but keep in mind that Doug must "qualify". Keep your fingers crossed, say a prayer, meditate.....whatever you can.
Thank you to everyone! I know Doug appreciates it.
Ray
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Bigtruck said:
Thanks Ray! Hey, just wondering... We know Doug has not posted in 5 days. It may be none of our biz, and don't feel shy about saying so, is he not posting because he is in bad pain (or maybe he's in the midst of a 5 day straight 50 ahead match with Alex the Lion?). I get the feeling Doug is a bit tentative to share too much on his condition, yet we are concerned and would like to know, hence a delicate situation... Ahhh heck nevermind. It's not about us. He's probably not up for anything more than a 20 ahead set right now anyway.
Feeling for ya Doug and sending out well wishes! I hope you have been reading this thread and that it brings you strength and comfort...
Unbelievable!
I would sure like to hear WHY someone thinks this is a terrible thread!
I got to believe that there are people, like myself, who didn't read the ratings and simply thought 1 star was better than NO star and 2 was a little better and so on.
It's NOT that way. 1 star means Terrible, 2 means Bad etc..
What made me think that people are mis-understanding the rating system is the #1 thread of ALL time, The funny pics and gifs thread is only rated (1) star. That's terrible! But most everyone will say that it's the best thread of ALL time! LOL.
Come on People Rate this thread accordingly, It's SMORG!!
Ray
I would sure like to hear WHY someone thinks this is a terrible thread!
I got to believe that there are people, like myself, who didn't read the ratings and simply thought 1 star was better than NO star and 2 was a little better and so on.
It's NOT that way. 1 star means Terrible, 2 means Bad etc..
What made me think that people are mis-understanding the rating system is the #1 thread of ALL time, The funny pics and gifs thread is only rated (1) star. That's terrible! But most everyone will say that it's the best thread of ALL time! LOL.
Come on People Rate this thread accordingly, It's SMORG!!
Ray
Attachments
WHERE IS DOUG LOCATED? (I KNOW I SHOULD KNOW THIS) IS IT TAMPA LIKE HIS ID SAYS?
THIS WAS WHAT I GOT BACK.......
Marcus,
Where is Doug Wiley located? He is certainly welcome to be evaluated at his closest participating clinical site. I can refer you once I know where he lives.
Thank you!
THIS WAS WHAT I GOT BACK.......
Marcus,
Where is Doug Wiley located? He is certainly welcome to be evaluated at his closest participating clinical site. I can refer you once I know where he lives.
Thank you!
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FAST_N_LOOSE said:
I'm guessing (not being a smartass here tho, lol) that he lives in Tampa FL. His profile states "location: Tampa-Tubby", which is his nickname.
Lol
Where is Tampa Tubby located? Tampa, Fl. LOL
Thanks for helping Marcus! At this point we are pretty sure they will at least discuss Doug's qualifications.
Now we need to get Doug's Doctors together with the trial people.
Ray
FAST_N_LOOSE said:
Where is Tampa Tubby located? Tampa, Fl. LOL
Thanks for helping Marcus! At this point we are pretty sure they will at least discuss Doug's qualifications.
Now we need to get Doug's Doctors together with the trial people.
Ray
KoolKat9Lives said:
I THOUGHT IT WAS TAMPA, BUT WHAT IF THAT WAS AN OLD NICKNAME,AND HE MOVED. I WANTED TO BE SURE BEFORE I REPLIED TO DOCTORS DO RESEARCH.
Bigtruck said:
THAT CAN BE TOUGH TOO,,,,,SOME DOCTORS DON'T LIKE NEW PROCEDURES. THEY CAN BE HARDER TO CONVINCE THAN THE PATIENTS INVOLVED. I HAVE MY FINGERS CROSSED, AND HIM AND HIS FAMILY IN MY PRAYERS.
Just In!!
Check this out guys! I just received this correspondence back from Jody with the Clinical Trials:
Dear Ray,
The closest study site would be University of Miami. I am copying the cardiologist, Doctor William O'Neill who can advise as to the screening process.
Good luck,
Thank you!
PS, Bill I have received about 20 requests from friends of this very special patient. Please let me know how things turn out.
Check this out guys! I just received this correspondence back from Jody with the Clinical Trials:
Dear Ray,
The closest study site would be University of Miami. I am copying the cardiologist, Doctor William O'Neill who can advise as to the screening process.
Good luck,
Thank you!
PS, Bill I have received about 20 requests from friends of this very special patient. Please let me know how things turn out.