Guest guest Posted August 23, 2001 Report Share Posted August 23, 2001 I'd like to welcome Cathy Donohoue to the group.... You have found a wonderful support group... Please feel free to jump right in and PLEASE ask all the questions you want.... We all learn from your questions... We are here to help you find the answers you need, listen to you vent and make you laugh a lot... My name is and I live in California.... have been dx with RP for 3 years...Please tell us a little about yourself...can't wait to get to know you. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2001 Report Share Posted August 23, 2001 Thank you for such a warm welcome. I wish I could meet all of you in a different way than this. My father has been diagnosed with RP. He started with the ear problems several years ago but nobody caught it then. He has lung problems anyway so they also thought it was just that. The doc finally did a CT scan and found that his windpipe is about 1/3 of what it ought to be. I am pretty scared right now. My Mom had a massive stroke 1 1/2 years ago and Dad and I care for her. His doc is consulting with some other doctors here (we live in Cincinnati, Ohio) because he has never seen this before and the first pulmonary guy he talked to only had seen one patient with this. How rare is it? Is it hereditary? Will his trachea just close up? I know none of you are doctors but I think people that have the problems are better able to explain what is going on than the experts on a more understandable level because you take the time to find out and research. Beyond this new development with Dad life is good. I am happily married. I have two grown sons and 3 dogs. I have so many more questions that I don't quite know where to start so I will leave it at this for now. Thanks for the welcome. Cathy Welcome new member I'd like to welcome Cathy Donohoue to the group.... You have found a wonderful support group... Please feel free to jump right in and PLEASE ask all the questions you want.... We all learn from your questions...We are here to help you find the answers you need, listen to you vent and make you laugh a lot... My name is and I live in California.... have been dx with RP for 3 years...Please tell us a little about yourself...can't wait to get to know you. hugsDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2001 Report Share Posted August 23, 2001 Cathy, Welcome to the RP list. It is not unusual to go years without a DX. What meds does your Dad take for the RP? I live in Ohio and am treated at the Cleveland Clinic. If you have questions just ask away and someone will be able to help you. Hugs, Sandy Thank you for such a warm welcome. I wish I could meet all of you in a different way than this. My father has been diagnosed with RP. He started with the ear problems several years ago but nobody caught it then. He has lung problems anyway so they also thought it was just that. The doc finally did a CT scan and found that his windpipe is about 1/3 of what it ought to be. I am pretty scared right now. My Mom had a massive stroke 1 1/2 years ago and Dad and I care for her. His doc is consulting with some other doctors here (we live in Cincinnati, Ohio) because he has never seen this before and the first pulmonary guy he talked to only had seen one patient with this. How rare is it? Is it hereditary? Will his trachea just close up? I know none of you are doctors but I think people that have the problems are better able to explain what is going on than the experts on a more understandable level because you take the time to find out and research. Beyond this new development with Dad life is good. I am happily married. I have two grown sons and 3 dogs. I have so many more questions that I don't quite know where to start so I will leave it at this for now. Thanks for the welcome. Cathy Welcome new member I'd like to welcome Cathy Donohoue to the group.... You have found a wonderful support group... Please feel free to jump right in and PLEASE ask all the questions you want.... We all learn from your questions...We are here to help you find the answers you need, listen to you vent and make you laugh a lot... My name is and I live in California.... have been dx with RP for 3 years...Please tell us a little about yourself...can't wait to get to know you. hugsDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2001 Report Share Posted August 23, 2001 In a message dated 8/23/01 4:43:51 PM Pacific Daylight Time, CDONOHOUE@... writes: << How rare is it? Is it hereditary? Will his trachea just close up? I know none of you are doctors >> Cathy, I know it is really rare... I don't know if I am right on this one and someone please correct me if I'm wrong, but I think it is 1 in 3 million... Don't know if it is hereditary, I myself think it can be, I think my mom had it and they never knew... just my opinion. RP is treatable with the proper meds.... Has your dad been to a rheumatologist? That is who usually handles RP. along with a ENT, pulmonologis, opthomalogist, cardiologist and just about any other ologist you can think of. LOL just kidding... I was diagnosed by an ENT and then sent to a rheumy. Please keep asking questions, there will always be someone to give you some input... and bring a smile to your face.... Sorry you need us, but glad you found us... hugs C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 So far Dad only takes the presnisone, but this is such a new diagnosis that I don't know if we will need to see a specialist. Would that be a better idea than a family doc? Cathy Welcome new member I'd like to welcome Cathy Donohoue to the group.... You have found a wonderful support group... Please feel free to jump right in and PLEASE ask all the questions you want.... We all learn from your questions...We are here to help you find the answers you need, listen to you vent and make you laugh a lot... My name is and I live in California.... have been dx with RP for 3 years...Please tell us a little about yourself...can't wait to get to know you. hugsDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 In a message dated 8/24/01 4:48:23 AM Pacific Daylight Time, CDONOHOUE@... writes: << Does anyone else have that? and if so what do you all do for it? Cathy >> Cathy, I use to have this problem... the ENT told me it was GERD (acid reflux) and put me on Prevacid. It has really helped.... It also protects the stomach from the pred.... It is important to protect your stomach... Don't want an ulcer from the pred on top of RP..... Ask for something for you dad's stomach. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 Has your dad been to a rheumatologist? That is who usually handles Dad has only been to our family doc, an internest that I really like. At least he kept plugging and looking when we kept going back. He is on prednisone and that is the only drug they have given him. He also has a problem with vomiting when he eats because the food gets caught and he can't get it up or down. Does anyone else have that? and if so what do you all do for it? Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 Cathy, I would recommend your Dad find a good Rheumotologist with Rp. experience. Does your family Doc seem knowledgable about RP.? Hugs, Sandy So far Dad only takes the presnisone, but this is such a new diagnosis that I don't know if we will need to see a specialist. Would that be a better idea than a family doc? Cathy Welcome new member I'd like to welcome Cathy Donohoue to the group.... You have found a wonderful support group... Please feel free to jump right in and PLEASE ask all the questions you want.... We all learn from your questions...We are here to help you find the answers you need, listen to you vent and make you laugh a lot... My name is and I live in California.... have been dx with RP for 3 years...Please tell us a little about yourself...can't wait to get to know you. hugsDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 Cathy, I would recommend your Dad find a good Rheumotologist with Rp. experience. Does your family Doc seem knowledgable about RP.? Hugs, Sandy Our family doc is pretty much in the dark and admits that. He is looking for help right now. I hope he will come up with someone soon. Cathy ----- Original Message ----- Quote Link to comment Share on other sites More sharing options...
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