Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 This is wonderful!! Your pride is completely understandable and I know that we on this list feel it with you. I also can appreciate the fact that the politicians may be more willing to understand things about children with DS because Trista did such a good job as ambassador:) Congrats to her. If you have pics, could you email them to me as an attachment? Elaine WOW! This state just keeps on giving to our kids. Trista (14 w/ds) was asked to attend a luncheon with our senator's wives/husbands(called the Palmetto Cabinet). She was asked to make a speech (about 2 minutes).They wanted to acknowledge her accomplishments in gymnastics/sports and being a member of World Games Team USA. My husband took her to the luncheon. he said he felt like he was rubbing elbows with the elite of the elite. he said hold incredibly wonderful they all were to her. Afterward, they were both surprised by being escorted over to the Capital. The Lieutenant Gorvernor took Trista into the senate chambers and presented her on the house floor. They honored her with a " resolution " and it all ended with a standing ovation. Joe said he was soooooo proud and she handled it all so well....made great eye contact, initiated conversation, and was gracious with thank yous. They then had a photo session with a few notables outside the senate. They framed the resoluton on a 2 foot by 3 foot matted frame. South Carolina has been sooooo good to this child! While I am happy for her, I am most happy about the effects this could have on the politicians who came in contact with her today. Will they think twice when approached about a bill concerning our kids? Will they understand better how times have changed for kids with DS? I sure hope so! That is the BIG picture! The one that means the most! Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 I want to know where you live in South Carolina. We are looking at moving there within 5 years. WOW! This state just keeps on giving to our kids. Trista (14 w/ds) was asked to attend a luncheon with our senator's wives/husbands(called the Palmetto Cabinet). She was asked to make a speech (about 2 minutes).They wanted to acknowledge her accomplishments in gymnastics/sports and being a member of World Games Team USA. My husband took her to the luncheon. he said he felt like he was rubbing elbows with the elite of the elite. he said hold incredibly wonderful they all were to her. Afterward, they were both surprised by being escorted over to the Capital. The Lieutenant Gorvernor took Trista into the senate chambers and presented her on the house floor. They honored her with a " resolution " and it all ended with a standing ovation. Joe said he was soooooo proud and she handled it all so well....made great eye contact, initiated conversation, and was gracious with thank yous. They then had a photo session with a few notables outside the senate. They framed the resoluton on a 2 foot by 3 foot matted frame. South Carolina has been sooooo good to this child! While I am happy for her, I am most happy about the effects this could have on the politicians who came in contact with her today. Will they think twice when approached about a bill concerning our kids? Will they understand better how times have changed for kids with DS? I sure hope so! That is the BIG picture! The one that means the most! Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 - And I haven't even had time to say anything yet but I love your site and I'm not even a Mom - hope to be someday. But your enthusiasm was contagious and I added your site to my favorites. And when I do get to be a Mom I'll know that the work I'm doing now will NOT be undone. Thanks!! _____ From: Berger [mailto:michelle@...] Sent: Monday, 04 April, 2005 2:11 PM Subject: Wow! I can't believe all the great feedback I am getting from this group!!! I really appreciate all your comments and look forward to enjoying your synergy- Thanks and Get Buff! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2005 Report Share Posted December 27, 2005 Everyday is a new day Angie. Being sore is a good sign you're on the right track. Tia > > Good Morning ladies! I'm not feeling so bad about my not so good first day. I must have done some good because I am SORE this morning! I haven't felt that in a long time and it sure does feel good!I will be working overtime today and hopefully which ever station I go to will have some decent equipment so I can do another workout. I feel so good! > Have a wonderful day! > Angie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Does anyone know if there will be a video of it? I would particularly like to hear what they say since Dr. K is who treats Ian. Noelle (12-2-01) Ian (8-15-04) wow! i don't know if anyone has been to the isop website recently, but carly's family (mom pam and dad chris) are hosting an event to benefit erie shriners and isop with miss mehta and dr. khoury speaking. good luck and wish i could come! deshea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hey Deshea, I had forgotten about that event. is gonna be tired.She is in Philly now, Chicago early next week, then the event in Tennesse. I am trying to get ahold of her, but she is swamped I am sure. Can't wait to hear how they all go. Shellie " Deshea L. " <deshea@...> wrote: i don't know if anyone has been to the isop website recently, but carly's family (mom pam and dad chris) are hosting an event to benefit erie shriners and isop with miss mehta and dr. khoury speaking. good luck and wish i could come! deshea --------------------------------- How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 Hello, All. I read the posts this morning about 's schedule, so I thought I'd drop a line and let you all know what's happening. She and Dr. Mehta are journeying back to Denver from the Philadelphia ETTP today. Miss Mehta examined 10 children on Wednesday and they cast 3 kiddos yesterday. Now the team at Shriners--Philly are officially trained in Early Treatment and they will be offering it as part of their services. Unfortunately, the tentatively-planned Chicago ETTP could not happen because the state of Illinois could not provide temporary privileges for Miss Mehta to work in the O.R. - they needed several weeks to process the paperwork, and the hospital made the decision to host the ETTP and started the process too late. It was disappointing for everyone. I know that Dr. Sturm from Chicago was planning to attend in Philly yesterday, but I forgot to ask this morning whether he made it or not. and Miss Mehta will be back here in Denver tonight for a few days' reprieve and will leave for the " Straight Forward " fundraiser in Tennessee next Thursday morning. The s family has been amazing and diligent in their enthusiasm for and organization of the event-we are so grateful for their efforts! Proceeds from the event will be shared between ISOP and Shriners-Erie. Miss Mehta and Dr. Khoury will also address the Mid Tennessee Medical Center's orthopaedists with a lecture on Friday morning. I have not heard whether they will videotape either of these presentations. And, maybe you are aware that attended the Scoliosis Research Society meeting in Monterrey, CA, last week with Dr. Mehta. There were over 800 spine surgeons from across the globe in attendance, and Early Treatment was a hot topic! Drs. D'Astous and presented their work, and Miss Mehta was acknowledged and appreciated. We need to figure out how to get an honorary M.D. She learned a great deal at the conference and got to mix and mingle with all of the world-renowned experts in orthopaedics. It was a fantastic thing for ISOP, and we intend to have a greater presence as an organization next year when the event will be held in Scotland. Of course all of this globetrotting is exhausting for both Dr. Mehta and (who, of course, also has to be away from Olivia). We are devising a plan to hold one gianormous ETTP next time, possibly in San Diego. We would make it longer and invite a broader audience of physicians. That way, we don't have to drag Miss Mehta all over Tarnation - better for the students to come to her. She is our very precious resource and we have to protect her! Right now, riding the wave of energy from the SRS meeting, she is eager to get back to home England and complete her next two papers. Thanks to everyone out there for being a part of this amazing community. We are, most definitely, having an impact and being heard. Our babies are growing straight, and there is so much hope for the future of Early Treatment. Autumn blessings to all. Holly LeMaster Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 > > i don't know if anyone has been to the isop website recently, but carly's family (mom pam and dad chris) are hosting an event to benefit erie shriners and isop with miss mehta and dr. khoury speaking. good luck and wish i could come! > > deshea > Hello, All. I read the posts this morning about 's schedule, so I thought I'd drop a line and let you all know what's happening. She and Dr. Mehta are journeying back to Denver from the Philadelphia ETTP today. Miss Mehta examined 10 children on Wednesday and they cast 3 kiddos yesterday. Now the team at Shriners--Philly are officially trained in Early Treatment and they will be offering it as part of their services. Unfortunately, the tentatively-planned Chicago ETTP could not happen because the state of Illinois could not provide temporary privileges for Miss Mehta to work in the O.R. – they needed several weeks to process the paperwork, and the hospital made the decision to host the ETTP and started the process too late. It was disappointing for everyone. I know that Dr. Sturm from Chicago was planning to attend in Philly yesterday, but I forgot to ask this morning whether he made it or not. and Miss Mehta will be back here in Denver tonight for a few days' reprieve and will leave for the " Straight Forward " fundraiser in Tennessee next Thursday morning. The s family has been amazing and diligent in their enthusiasm for and organization of the event—we are so grateful for their efforts! Proceeds from the event will be shared between ISOP and Shriners—Erie. Miss Mehta and Dr. Khoury will also address the Mid Tennessee Medical Center's orthopaedists with a lecture on Friday morning. I have not heard whether they will videotape either of these presentations. And, maybe you are aware that attended the Scoliosis Research Society meeting in Monterrey, CA, last week with Dr. Mehta. There were over 800 spine surgeons from across the globe in attendance, and Early Treatment was a hot topic! Drs. D'Astous and presented their work, and Miss Mehta was acknowledged and appreciated. We need to figure out how to get an honorary M.D. She learned a great deal at the conference and got to mix and mingle with all of the world-renowned experts in orthopaedics. It was a fantastic thing for ISOP, and we intend to have a greater presence as an organization next year when the event will be held in Scotland. Of course all of this globetrotting is exhausting for both Dr. Mehta and (who, of course, also has to be away from Olivia). We are devising a plan to hold one gianormous ETTP next time, possibly in San Diego. We would make it longer and invite a broader audience of physicians. That way, we don't have to drag Miss Mehta all over Tarnation – better for the students to come to her. She is our very precious resource and we have to protect her! Right now, riding the wave of energy from the SRS meeting, she is eager to get back to home England and complete her next two papers. Thanks to everyone out there for being a part of this amazing community. We are, most definitely, having an impact and being heard. Our babies are growing straight, and there is so much hope for the future of Early Treatment. Autumn blessings to all. Holly LeMaster Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 Holly, Thanks for updating us. I've been so curious!!! Shellie Grant (Moriah's Mom) hollylemaster <holly@...> wrote: > > i don't know if anyone has been to the isop website recently, but carly's family (mom pam and dad chris) are hosting an event to benefit erie shriners and isop with miss mehta and dr. khoury speaking. good luck and wish i could come! > > deshea > Hello, All. I read the posts this morning about 's schedule, so I thought I'd drop a line and let you all know what's happening. She and Dr. Mehta are journeying back to Denver from the Philadelphia ETTP today. Miss Mehta examined 10 children on Wednesday and they cast 3 kiddos yesterday. Now the team at Shriners--Philly are officially trained in Early Treatment and they will be offering it as part of their services. Unfortunately, the tentatively-planned Chicago ETTP could not happen because the state of Illinois could not provide temporary privileges for Miss Mehta to work in the O.R. – they needed several weeks to process the paperwork, and the hospital made the decision to host the ETTP and started the process too late. It was disappointing for everyone. I know that Dr. Sturm from Chicago was planning to attend in Philly yesterday, but I forgot to ask this morning whether he made it or not. and Miss Mehta will be back here in Denver tonight for a few days' reprieve and will leave for the " Straight Forward " fundraiser in Tennessee next Thursday morning. The s family has been amazing and diligent in their enthusiasm for and organization of the event—we are so grateful for their efforts! Proceeds from the event will be shared between ISOP and Shriners—Erie. Miss Mehta and Dr. Khoury will also address the Mid Tennessee Medical Center's orthopaedists with a lecture on Friday morning. I have not heard whether they will videotape either of these presentations. And, maybe you are aware that attended the Scoliosis Research Society meeting in Monterrey, CA, last week with Dr. Mehta. There were over 800 spine surgeons from across the globe in attendance, and Early Treatment was a hot topic! Drs. D'Astous and presented their work, and Miss Mehta was acknowledged and appreciated. We need to figure out how to get an honorary M.D. She learned a great deal at the conference and got to mix and mingle with all of the world-renowned experts in orthopaedics. It was a fantastic thing for ISOP, and we intend to have a greater presence as an organization next year when the event will be held in Scotland. Of course all of this globetrotting is exhausting for both Dr. Mehta and (who, of course, also has to be away from Olivia). We are devising a plan to hold one gianormous ETTP next time, possibly in San Diego. We would make it longer and invite a broader audience of physicians. That way, we don't have to drag Miss Mehta all over Tarnation – better for the students to come to her. She is our very precious resource and we have to protect her! Right now, riding the wave of energy from the SRS meeting, she is eager to get back to home England and complete her next two papers. Thanks to everyone out there for being a part of this amazing community. We are, most definitely, having an impact and being heard. Our babies are growing straight, and there is so much hope for the future of Early Treatment. Autumn blessings to all. Holly LeMaster --------------------------------- Stay in the know. Pulse on the new .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2006 Report Share Posted September 23, 2006 ---Hi,What kind of funraiser are they having? Where are they holding it? Just wounder if it was going to be in Erie. Thanks, Bridgette In infantile scoliosis treatment , " Deshea L. " <deshea@...> wrote: > > i don't know if anyone has been to the isop website recently, but carly's family (mom pam and dad chris) are hosting an event to benefit erie shriners and isop with miss mehta and dr. khoury speaking. good luck and wish i could come! > > deshea > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2006 Report Share Posted September 23, 2006 sorry bridgette! i should have posted more information. the event is going to be in tennessee. that is where carly's family lives. hope all is well. deshea On Sep 22, 2006, at 10:07 PM, murphybridgette wrote: > ---Hi,What kind of funraiser are they having? Where are they holding > it? Just wounder if it was going to be in Erie. > > Thanks, > Bridgette > > In infantile scoliosis treatment , " Deshea L. " > <deshea@...> wrote: > > > > i don't know if anyone has been to the isop website recently, but > carly's family (mom pam and dad chris) are hosting an event to benefit > erie shriners and isop with miss mehta and dr. khoury speaking. good > luck and wish i could come! > > > > deshea > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2006 Report Share Posted September 23, 2006 The fundraiser is a formal dinner in Murfressboro, TN--the s' community. Dr. Metha and Dr. Khoury will address the group. They've secured both corporate and individual donors for the event. It should be lovely! The invitation, including the list of sponsors, is on the ISOP website if you'd like to have a look. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2009 Report Share Posted May 2, 2009 >Hi, thanks ya'll. I just had some lab tests done yesterday, but I don't have the results yet. I have had low potassium in the past during all the years I've been on a diauretic for high blood pressure. They kept having to increase the Klor-Con as time went by. Thanks for the welcome, ya'll, Deb > don't apologize DJ. what you described is where I was about a year ago > ... immense, overwhelming, disabling fatigue. it may the chemo or > radiation. And it may be hyperaldo. you don't report any potassium > test. what is it? hang in. sounds like you're on the right track. > a > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2009 Report Share Posted May 2, 2009 As you will note this is a very common problem in the folks who end up here.How did your Drs explain your low K?How many times a night do you have to get up to pee?  and when did this start to get to be a bother?Trust you don't eat licorice every day and that your Endo asked that early on.Tell us where you are and we may be able to recommend a Dr. Clarence Grim BS, MS, MDClinical Professor of MedicineMedical College of WisconsinSenior Consultant to Shared Care Research and Education Consulting, Inc.Specializing in Difficult to control high blood pressure. On May 2, 2009, at 10:26 PM, Deborah wrote:>Hi, thanks ya'll. I just had some lab tests done yesterday, but I don't have the results yet. I have had low potassium in the past during all the years I've been on a diauretic for high blood pressure. They kept having to increase the Klor-Con as time went by. Thanks for the welcome, ya'll,Deb> don't apologize DJ. what you described is where I was about a year ago > ... immense, overwhelming, disabling fatigue. it may the chemo or > radiation. And it may be hyperaldo. you don't report any potassium > test. what is it? hang in. sounds like you're on the right track.> a> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 > > >Hi, thanks ya'll. I just had some lab tests done yesterday, but I > > don't have the results yet. I have had low potassium in the past > > during all the years I've been on a diauretic for high blood > > pressure. They kept having to increase the Klor-Con as time went by. > > > > Thanks for the welcome, ya'll, > > Deb > > > > > don't apologize DJ. what you described is where I was about a > > year ago > > > ... immense, overwhelming, disabling fatigue. it may the chemo or > > > radiation. And it may be hyperaldo. you don't report any potassium > > > test. what is it? hang in. sounds like you're on the right track. > > > a > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 Deb, your low K and peeing lots at night are both characteristic of PA. You are very fortunate to have found an endo who knows anything about PA. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Deborah > > >Hi, thanks ya'll. I just had some lab tests done yesterday, but I > > don't have the results yet. I have had low potassium in the past > > during all the years I've been on a diauretic for high blood > > pressure. They kept having to increase the Klor-Con as time went by. > > > > Thanks for the welcome, ya'll, > > Deb > > > > > don't apologize DJ. what you described is where I was about a > > year ago > > > ... immense, overwhelming, disabling fatigue. it may the chemo or > > > radiation. And it may be hyperaldo. you don't report any potassium > > > test. what is it? hang in. sounds like you're on the right track. > > > a > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 > > > >Hi, thanks ya'll. I just had some lab tests done yesterday, but I > > > don't have the results yet. I have had low potassium in the past > > > during all the years I've been on a diauretic for high blood > > > pressure. They kept having to increase the Klor-Con as time went by. > > > > > > Thanks for the welcome, ya'll, > > > Deb > > > > > > > don't apologize DJ. what you described is where I was about a > > > year ago > > > > ... immense, overwhelming, disabling fatigue. it may the chemo or > > > > radiation. And it may be hyperaldo. you don't report any potassium > > > > test. what is it? hang in. sounds like you're on the right track. > > > > a > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 On May 3, 2009, at 10:01 AM, Deborah wrote:>Hi. In answer to your questions, here goes;1. My regular physician, (Internal Medicine) told me that it was from the diaretic that I took with Toprol. I first was on Prinzide and began 1 Klor-con tablet per day. Over many years, I'd have Hypokalemic episodes that I'd go to the Emergency room for. I'd be experiencing alot of palpitations and new something was wrong. I just didn't feel right. The ER Drs would give me potassium and then send me home and told me to follow up with my phyisican. When I went, he increased my klor-con. It happened 3 times in total throughout a 10 year period and each time I was increased by one pill. So the last time it happened, I was taking 4 Klor-con tablets a day. About 6 years ago, he switched me to Maxide from the Prinzide because my blood pressure got too low. It seemed when I lost weight, ( down to 130 lbs) I was on a much higher dose of blood pressure medicines both with Toprol and Prinzide, when I gained my weight back is when my medications strengths were lowered and I went on Maxide. The first low K on Prinizide should have been a clue as the prini should counter act the K losing effects fo the zide in most people.  Take all these Drs my article so they do not make the same mistake in all the future patients.  You are doing them a service.2. I never thought about peeing at night. Sometimes I get up 1 or 2 times a night, other times I don't. But I had an awakening last night when I was collecting my Urine for the 24 hr test. When I got up after only sleeping for 3 & 12 hours, I urinated as much one time, that I did several times during the day. The volumn doubled in the container. I was shocked. This is also classic for PA.  This is because the low K blocks the effect of ADH on the kidney combined with the fact that BP does not go down at night you get a pressure induced natriuresis(peeing our Na) and diuresis (peeing our water). 3. I don't eat licorice. I guess its a good thing I don't like it. :)4. I live in Biloxi, MS-right along the Gulf coast. I saw a Dr. Frieze (endocrinologist) Friday and I was really impressed with him. He's the one that told me that he suspects I have this. Also, he's started the testing process. I've just had the lab tests, done. I'm on Spironolactone already for leg edema, so he's going to have a phone conference with my reg. dr to see how to go about taking me off of it for 6 weeks prior to another blood test. I do know that I have a quarter sized mass on my left adrenal gland. If spiro is controlling the BP and K and peeing and muscle cramps and you are back to normal (DASHing will help with this) I would wait till the tests come back.anyways, I hope I've put this is the right place. I've read through the Evolution document and based on my symptoms, I believe I'm in stage 4. I've printed the document and will take it to my next appt. I'm going to work on my Conn's history document today and post it, also. Good sounds  like your story will add to the others we have.  You cannot give us too much detail esp on symptoms and low K problems.We look forward to it and I would take it to your Endo to make his understanding of how it is affecting you as well.I am happy to consult with your Endo if he or she is interested.  I have been doing this for 45 years and trained with Conn himself.  Ain't many of us left.Ask where your Endo trained as this will give me a better idea of his credentials.CE Grim MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 Your story of giving birth reminds me of my 16-minute labor. No one believed that I would only be there an hour, total. By the time it was over, they were all believers. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Deborah >thank you, Val. I finished my Conn's Story, too. Boy, it was something thinking back 20 years and more. Take care, Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 this is the crazymaker: the diuretic goes in, the potassium goes down, the BP goes up, the diuretic goes up, the potassium goes down ... the potassium goes in, it doesn't do any good, etc. vicious cycle. my PC had me up to 40 MEQ potassium bid briefly until my cardiologist looked at my continued low potassium and said " so where is it all going? ..... Out? " And this should be one of the high-priority targets for a campaign of consciousness-raising re PA. this is specific and simple and doesn't take 5000 words to explain. this is doable. NCQA could make it into a screening indicator and it would be all over the place within 2 years. On May 3, 2009, at 11:26 AM, Valarie wrote: > > > Deb, your low K and peeing lots at night are both characteristic of > PA. You are very fortunate to have found an endo who knows anything > about PA. > >  > > Val > >  > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Deborah > > > > > > >Hi, thanks ya'll. I just had some lab tests done yesterday, but I > > > don't have the results yet. I have had low potassium in the past > > > during all the years I've been on a diauretic for high blood > > > pressure. They kept having to increase the Klor-Con as time went > by. > > > > > > Thanks for the welcome, ya'll, > > > Deb > > > > > > > don't apologize DJ. what you described is where I was about a > > > year ago > > > > ... immense, overwhelming, disabling fatigue. it may the chemo > or > > > > radiation. And it may be hyperaldo. you don't report any > potassium > > > > test. what is it? hang in. sounds like you're on the right > track. > > > > a > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 It has been taught and stressed in Medical School since at least 1958 that anytime low K and HTN are found PA must be suspected and tested for.  The beauty of today is that one can easily measure P-Aldo and P-renin to exclude the Dx.And every medical student learned about Conn's. They were just told it is so rare that they will likely never see a case.  But with easier testing it became much more common. It used to take 14 days in the hosp when I first started in this business.CEG  On May 3, 2009, at 6:43 PM, arthur springer wrote:this is the crazymaker:the diuretic goes in, the potassium goes down, the BP goes up, the diuretic goes up,the potassium goes down ... the potassium goes in, it doesn't do any good, etc. vicious cycle. my PC had me up to 40 MEQ potassium bid briefly until my cardiologist looked at my continued low potassium and said"so where is it all going? ..... Out?" And this should be one of the high-priority targets for a campaign of consciousness-raising re PA. this is specific and simple and doesn't take 5000 words to explain. this is doable. NCQA could make it into a screening indicator and it would be all over the place within 2 years. On May 3, 2009, at 11:26 AM, Valarie wrote: Deb, your low K and peeing lots at night are both characteristic of PA. You are very fortunate to have found an endo who knows anything about PA. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Deborah > > >Hi, thanks ya'll. I just had some lab tests done yesterday, but I  > > don't have the results yet. I have had low potassium in the past  > > during all the years I've been on a diauretic for high blood  > > pressure. They kept having to increase the Klor-Con as time went by. > > > > Thanks for the welcome, ya'll, > > Deb > > > > > don't apologize DJ. what you described is where I was about a  > > year ago > > > ... immense, overwhelming, disabling fatigue. it may the chemo or > > > radiation. And it may be hyperaldo. you don't report any potassium > > > test. what is it? hang in. sounds like you're on the right track. > > > a > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 NCQA indicators are the fastest way to get the right information around and force people to pay attention to whatever they have forgotten since med school or never learned. On May 3, 2009, at 8:32 PM, Clarence Grim wrote: > > > It has been taught and stressed in Medical School since at least 1958 > that anytime low K and HTN are found PA must be suspected and tested > for.  The beauty of today is that one can easily measure P-Aldo and > P-renin to exclude the Dx. > > And every medical student learned about Conn's. They were just told it > is so rare that they will likely never see a case.  But with easier > testing it became much more common. > > It used to take 14 days in the hosp when I first started in this > business. > > CEG  > > > On May 3, 2009, at 6:43 PM, arthur springer wrote: > >> this is the crazymaker: >> the diuretic goes in, the potassium goes down, the BP goes up, the >> diuretic goes up, >> the potassium goes down ... the potassium goes in, it doesn't do any >> good, etc. vicious cycle. my PC had me up to 40 MEQ potassium bid >> briefly until my cardiologist looked at my continued low potassium >> and said >> " so where is it all going? ..... Out? " And this should be one of the >> high-priority targets for a campaign of consciousness-raising re PA. >> this is specific and simple and doesn't take 5000 words to explain. >> this is doable. NCQA could make it into a screening indicator and it >> would be all over the place within 2 years. >> >> >> On May 3, 2009, at 11:26 AM, Valarie wrote: >> >>> >>> >>> Deb, your low K and peeing lots at night are both characteristic of >>> PA. You are very fortunate to have found an endo who knows anything >>> about PA. >>> >>> >>>  >>> >>> Val >>> >>> >>>  >>> >>> From: hyperaldosteronism >>> [mailto:hyperaldosteronism ] On Behalf Of Deborah >>> >>> >>> >>>  > > >Hi, thanks ya'll. I just had some lab tests done yesterday, >>> but I >>>  > > don't have the results yet. I have had low potassium in the >>> past >>>  > > during all the years I've been on a diauretic for high blood >>>  > > pressure. They kept having to increase the Klor-Con as time >>> went by. >>>  > > >>>  > > Thanks for the welcome, ya'll, >>>  > > Deb >>>  > > >>>  > > > don't apologize DJ. what you described is where I was about a >>>  > > year ago >>>  > > > ... immense, overwhelming, disabling fatigue. it may the >>> chemo or >>>  > > > radiation. And it may be hyperaldo. you don't report any >>> potassium >>>  > > > test. what is it? hang in. sounds like you're on the right >>> track. >>>  > > > a >>>  > > > >>>  > > >>>  > > >>>  > > >>>  > >>> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 Deb, you stated that you are from South Mississippi. Where? I live in Hattiesburg. Who is your specialist? I was diagnosed with Conn's about 2 weeks ago but they said that I did not have a tumor on my adrenal gland. I go back to the specialist Tuesday and I am going to ask for a CT of my adrenals because one has not been specifically done as of yet--only my kidneys because of excessive uncontrollable high bp. From: Deborah <DJMackBJ@...>hyperaldosteronism Sent: Saturday, May 2, 2009 10:26:08 PMSubject: Re: wow! >Hi, thanks ya'll. I just had some lab tests done yesterday, but I don't have the results yet. I have had low potassium in the past during all the years I've been on a diauretic for high blood pressure. They kept having to increase the Klor-Con as time went by. Thanks for the welcome, ya'll,Deb> don't apologize DJ. what you described is where I was about a year ago > ... immense, overwhelming, disabling fatigue. it may the chemo or > radiation. And it may be hyperaldo. you don't report any potassium > test. what is it? hang in. sounds like you're on the right track.> a> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 Lets get one started just for BP that is good first.  The one they have is a poor one as it takes only the last BP measured and there is no Q Controls in how BP is measured.mismeasureing BP is the most common medical error made and because HTN is the most common chronic condition in the population it is one of the most dangerous errors.If BP is measured falsely low then HTN is missed and folks die or are disabled from untreated HTN.  If is is measured falsely high then folks are treated who dont need to be or meds are increased when they should not be increased.CE Grim MDOn May 3, 2009, at 8:03 PM, arthur springer wrote:NCQA indicators are the fastest way to get the right information around and force people to pay attention to whatever they have forgotten since med school or never learned.On May 3, 2009, at 8:32 PM, Clarence Grim wrote: It has been taught and stressed in Medical School since at least 1958 that anytime low K and HTN are found PA must be suspected and tested for.  The beauty of today is that one can easily measure P-Aldo and P-renin to exclude the Dx.And every medical student learned about Conn's. They were just told it is so rare that they will likely never see a case.  But with easier testing it became much more common. It used to take 14 days in the hosp when I first started in this business.CEG  On May 3, 2009, at 6:43 PM, arthur springer wrote: this is the crazymaker:the diuretic goes in, the potassium goes down, the BP goes up, the diuretic goes up,the potassium goes down ... the potassium goes in, it doesn't do any good, etc. vicious cycle. my PC had me up to 40 MEQ potassium bid briefly until my cardiologist looked at my continued low potassium and said"so where is it all going? ..... Out?" And this should be one of the high-priority targets for a campaign of consciousness-raising re PA. this is specific and simple and doesn't take 5000 words to explain. this is doable. NCQA could make it into a screening indicator and it would be all over the place within 2 years. On May 3, 2009, at 11:26 AM, Valarie wrote: Deb, your low K and peeing lots at night are both characteristic of PA. You are very fortunate to have found an endo who knows anything about PA.  Val  From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Deborah  > > >Hi, thanks ya'll. I just had some lab tests done yesterday, but I  > > don't have the results yet. I have had low potassium in the past  > > during all the years I've been on a diauretic for high blood  > > pressure. They kept having to increase the Klor-Con as time went by.  > >  > > Thanks for the welcome, ya'll,  > > Deb  > >  > > > don't apologize DJ. what you described is where I was about a  > > year ago  > > > ... immense, overwhelming, disabling fatigue. it may the chemo or  > > > radiation. And it may be hyperaldo. you don't report any potassium  > > > test. what is it? hang in. sounds like you're on the right track.  > > > a  > > >  > >  > >  > >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 Dave, without AVS, no one can say whether you have a tumor on your adrenal. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Echols Deb, you stated that you are from South Mississippi. Where? I live in Hattiesburg. Who is your specialist? I was diagnosed with Conn's about 2 weeks ago but they said that I did not have a tumor on my adrenal gland. I go back to the specialist Tuesday and I am going to ask for a CT of my adrenals because one has not been specifically done as of yet--only my kidneys because of excessive uncontrollable high bp. Quote Link to comment Share on other sites More sharing options...
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