Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 In a message dated 7/15/1999 11:15:36 AM Eastern Daylight Time, duffnb@... writes: << gosh - i am not sure why you can't have water - i am so sorry for you - are you a pastor of a church? what demonination? >> I cannot have water because it sets off my reflux. Personally, I think this is ridiculous. Yes, I am a Baptist Pastor at Jesus the Way Christian Fellowship Church in Lorain, Ohio. Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 Jim, Is that acid reflux?If it is do you have the head of your bed up? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 , My Mother and brother have the acid reflux,there is a second pill that is given when it is bad I will call my brother and ask the name of it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 In a message dated 7/15/1999 11:53:49 AM Eastern Daylight Time, VPolzin@... writes: << Jim, Is that acid reflux?If it is do you have the head of your bed up? >> Yes, it is, and yes, I do. I have a specially made, extra strong (for my weight) hospital bed, and I sleep with my upper body elevated, both for the acid reflux and sleep apnea. Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 In a message dated 7/15/1999 1:42:22 PM Eastern Daylight Time, ottercritter@... writes: << Is it porphyria cutanea tarda? >> Never heard of this. What is it? Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 Jim, I called my brother the other medicine that he takesfor his reflux is prevacid. He said none of them work for more then a few months,he takes the prevacid during the same period that he takes propulsid. Hope this helps some Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 Yes - we have it raised 6 " - not very comfortable but it does help - he also takes prilosic (sp?) for heartburn - but he is very ill with something called porphyria - so he has a lot to deal with - nancy At 11:51 AM 7/15/99 -0400, you wrote: >From: VPolzin@... > >Jim, >Is that acid reflux?If it is do you have the head of your bed up? > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 thanksa so much -- my dog appears to be in labor! We are going to have new babies - i hope that this is the real thing and not another one of her acts to get her tummy rubbed and ears scratched!!! hugs At 12:41 PM 7/15/99 -0400, you wrote: >From: VPolzin@... > >, >My Mother and brother have the acid reflux,there is a second pill that is >given when it is bad I will call my brother and ask the name of it. > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 Duff writes: << he is very ill with something called porphyria >> Which type of porphyria is it? I found quite a lot of info on the internet that may be helpful to you. Is it porphyria cutanea tarda? Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 acute intermitent and varigate porph - he is quickly becoming an expert on the subject and is teaching the docs - as they know very little about it!!!! He has actually dealt with a Dr Morton out in Oregon who has been most helpful - we live in New Jersey :>) he is very ill right now - very tough on everyone - At 01:41 PM 7/15/99 -0400, you wrote: > > > Duff writes: > ><< he is very ill with something called porphyria >> > >Which type of porphyria is it? I found quite a lot of info on the internet >that may be helpful to you. Is it porphyria cutanea tarda? > >Susie > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 Yes!!!!!!! A disease I don't have! And here I thought being pregnant was the only medical condition I didn't have! I'm doing okay, tomorrow I'm going to have 6 teeth pulled, the bones in my mouth are so weak that they are exposed to the root, and that kind of hurts when I eat; of course, if I followed my diet, I couldn't eat anyway! LOL Everything else is holding steady. Unfortunately that includes the high BS, fasting readings just shy of 500. Insulin doesn't seem to be helping. Other than that, I'm doing dandy! I've been on a leave of absence from my clinical counseling; I'm due to go back in September, so I have to get things improved by then. I saw one of the leading pulmonologists in the state yesterday -- he confirmed the diagnosis of pulmonary hypertension, he " staged " me a little farther along than the other doctor did, and he took the time to explain how he got to that conclusion. He seems to feel that I may not see the end of this year. I reminded him that only God can make that decision, and he agreed. The doctor also agreed that, considering my overall number and severity of medical problems, he doesn't know why I'm still alive! LOL When doctors' egos get too inflated, I come along with a pin and stick it to them! Seriously, he's probably right, I can tell from how I am progressing, how difficult it is to breathe, the climbing amount of CO2 in my blood, the episodes of lung spasms becoming more frequent and intense. But, I'm going to keep up my ministry work till the last minute. Once I hit " end stage " it will be quick, at that point I will be hospitalized, probably ICU, and it will be over within 2 - 4 weeks, on average. I have agreed to be an organ donor, and will only allow heroic measures to the degree necessary to keep my organs viable for transplant. Jim In a message dated 7/15/1999 4:15:27 PM Eastern Daylight Time, ottercritter@... writes: << < ... porphyria cutanea tarda ... Never heard of this. What is it? >> Jim! Here's one you don't have!! Seriously ... you are you doing, Jim? Sounds like a lot has been going on in your life lately >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 Love you and prayer for you my brother in Christ. Hugs Shelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 , I'll send this search link to you in private email too: acute intermittent porphyria and variegate porphyria links galore ... http://www.altavista.com/cgi-bin/query?q=acute+intermittent+porphyria & pg=q & q e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 Jim writes: << ... porphyria cutanea tarda ... Never heard of this. What is it? >> Jim! Here's one you don't have!! Seriously ... you are you doing, Jim? Sounds like a lot has been going on in your life lately. Susie Some links to porphyria cutanea tarda ... http://www.altavista.com/cgi-bin/querypg=q & kl=XX & stype=stext & q=porphyria+cut anea+tarda hmmm ... it isn't going to work .. it's broken ... Well ... go to http://www.altavista.com and type in porphyria cutanea tarda ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 Jim, I tease you because I don't know how else to respond. Your posts and your bravery rip my heart out ... I can't help crying. I take it they have decided that your Cushing's is not caused by a tumor? I keep hoping we can find somewhere to begin turning something around ... Hugs, Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 1999 Report Share Posted July 16, 1999 don't understand " no water " --- Carolyn D. Kaminski >From: RevJSutter@... > >In a message dated 7/14/1999 10:35:40 PM Eastern Daylight Time, >duffnb@... writes: > ><< > no water either? >> > > >Nope, no water. > >Jim > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 1999 Report Share Posted July 16, 1999 I use Prevacid and it is great. My sister lin law takes Prilosec and thinks it is great, too. Toni VPolzin@... wrote: > From: VPolzin@... > > Jim, > I called my brother the other medicine that he takesfor his reflux is > prevacid. He said none of them work for more then a few months,he takes the > prevacid during the same period that he takes propulsid. Hope this helps some > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 1999 Report Share Posted July 16, 1999 Thanks for the info. I do have a primary physician who is playing traffic cop, medical care coordinator, and advocate all at once. He is a great guy, and when he tells someone to jump, they say " Is this high enough, sir! " He is overseeing all the other doctors, and checking every prescription they give me to watch for interactions and allergies. Up until recently, he was most heavily concerned about the PH, but now he has placed mroe urgency on the diabetes adn Cushings. BTW, I had several CTs of the brain, there was some talk about " microcellular tumors " , but I don't know what exactly they found. I am told they did a scan of my adrenals that was negative, but I don't remember it. This new doc, who's a specialist in Cushings and DM, will probably want to run all the tests again. Thanks again. Jim In a message dated 7/16/1999 4:46:38 PM Eastern Daylight Time, ottercritter@... writes: << Jim, you have so many serious illnesses affecting you concurrently. You are having to see several doctors ... I wish one doctor would appoint him/herself the " boss doctor " and help you prioritize your health issues. It is too much to expect you to become an expert on every illness you are trying to manage. First, have you determined that the Cushing's is NOT caused by a tumor? >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 1999 Report Share Posted July 16, 1999 Thanks for the info. I do have a primary physician who is playing traffic cop, medical care coordinator, and advocate all at once. He is a great guy, and when he tells someone to jump, they say " Is this high enough, sir! " He is overseeing all the other doctors, and checking every prescription they give me to watch for interactions and allergies. Up until recently, he was most heavily concerned about the PH, but now he has placed mroe urgency on the diabetes adn Cushings. BTW, I had several CTs of the brain, there was some talk about " microcellular tumors " , but I don't know what exactly they found. I am told they did a scan of my adrenals that was negative, but I don't remember it. This new doc, who's a specialist in Cushings and DM, will probably want to run all the tests again. Thanks again. Jim In a message dated 7/16/1999 4:46:38 PM Eastern Daylight Time, ottercritter@... writes: << Jim, you have so many serious illnesses affecting you concurrently. You are having to see several doctors ... I wish one doctor would appoint him/herself the " boss doctor " and help you prioritize your health issues. It is too much to expect you to become an expert on every illness you are trying to manage. First, have you determined that the Cushing's is NOT caused by a tumor? >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 1999 Report Share Posted July 16, 1999 Anyone else notice the listserve is hiccupping and repeating emails? Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 1999 Report Share Posted July 16, 1999 Jim ... I just gotta say something here ... Your bravery amazes me ... In addition, I am old enough to know just how incredibly cool you being an actual Navy SEAL is ... For anybody out there who is a youngster, this is like being Rambo, Chuck Norris, and - um - an Olympic synchronized swimmer - all rolled into one!! ) Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 1999 Report Share Posted July 16, 1999 Aw, shucks, ma'am. I got to shoot guns and blow things up, and get paid for it -- every man's dream. LOL Actually, my job was more along the lines of keeping things from blowing up, I " recovered " and disarmed nuclear, chemical and biological weapons. Three Purple Hearts, a Bronze Star and the Navy Cross, which gives me bragging rights at the American Legion meetings. LOL In a message dated 7/16/1999 8:25:17 PM Eastern Daylight Time, ottercritter@... writes: << Jim ... I just gotta say something here ... Your bravery amazes me ... In addition, I am old enough to know just how incredibly cool you being an actual Navy SEAL is ... For anybody out there who is a youngster, this is like being Rambo, Chuck Norris, and - um - an Olympic synchronized swimmer - all rolled into one!! ) Susie >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 1999 Report Share Posted July 16, 1999 Susie...You should watch JAG on CBS! Toni OtterCritter wrote: > > > Jim ... I just gotta say something here ... Your bravery amazes me ... In > addition, I am old enough to know just how incredibly cool you being an > actual Navy SEAL is ... For anybody out there who is a youngster, this is > like being Rambo, Chuck Norris, and - um - an Olympic synchronized swimmer - > all rolled into one!! ) > > Susie > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 1999 Report Share Posted July 16, 1999 I thought the hiccup was me! I would delete a post and there it was again. I sort by thread, so my mails stack. I thought I was missing the delete key! Toni RevJSutter@... wrote: > From: RevJSutter@... > > Anyone else notice the listserve is hiccupping and repeating emails? > > Jim > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 1999 Report Share Posted July 16, 1999 Hi Reverend Sutter, My hats off to you with your great sense of humor in the face of your poor health. Not too many would laugh. I believe that laughter prolongs life. If so I'll be immortal. cimi75 RevJSutter@... wrote: > > From: RevJSutter@... > > Thanks for the info. I do have a primary physician who is playing traffic > cop, medical care coordinator, and advocate all at once. He is a great guy, > and when he tells someone to jump, they say " Is this high enough, sir! " He > is overseeing all the other doctors, and checking every prescription they > give me to watch for interactions and allergies. Up until recently, he was > most heavily concerned about the PH, but now he has placed mroe urgency on > the diabetes adn Cushings. BTW, I had several CTs of the brain, there was > some talk about " microcellular tumors " , but I don't know what exactly they > found. I am told they did a scan of my adrenals that was negative, but I > don't remember it. This new doc, who's a specialist in Cushings and DM, will > probably want to run all the tests again. > > Thanks again. > > Jim > > In a message dated 7/16/1999 4:46:38 PM Eastern Daylight Time, > ottercritter@... writes: > > << > Jim, you have so many serious illnesses affecting you concurrently. You are > having to see several doctors ... I wish one doctor would appoint > him/herself the " boss doctor " and help you prioritize your health issues. It > is too much to expect you to become an expert on every illness you are > trying to manage. > > First, have you determined that the Cushing's is NOT caused by a tumor? >> > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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