Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 , Hello it is me, Bonita and i just wanted to say that what you said about RP is fatal, my nephew Gabby, is 21 and just those 3 words...( it's not fatal) you will never know how you have given me a blessing, my sister Stacey, mother of Gabby is going crazy thinking that he is has this fatal disease and she is such a mother hen, ( which of course, any mother or a caring heart and loving support goes threw on her own which she feels she has only one day with him and is set on thinking her son is close to death) which honestly it upsets me so, that i explain to her stopping putting your mind set that way, enjoy what you have and live it the fullest but again i don't understand, she has him so unidependent he wants to work not full time but some and he does goes to college but she only has him 2 times per week and he tells her constantly he feels OK, of course he does have his bad days, but still he wants to do something besides stay at home and be waited on...i have made many attempts to get them to join the group, because here he can pour all emotions with a loving and honest support group who can relate to him. but she doesn't see it that way, so i just now and then mention the group at times just to let him know i still support the group and now i consider us a part of the cyberspace family. And that i will always be within the group for always. So again let me thank you from the bottom of my heart for just those words. Love and my warm prayers and thoughts are with you and the group. Bonita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 In a message dated 1/5/02 7:46:45 AM Pacific Standard Time, katdavis@... writes: << Due to the permanent damage to the cartilage holding up my airways, >> . Did they ever mention stents as an option? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 In a message dated 1/5/02 11:13:44 AM Pacific Standard Time, katdavis@... writes: << Do you know anyone with a stent? >> Yes . I know Harvey has one and there might be more. If so I can't remember. I know would be glad to give you any information you want. She is only in her 20's. If you need her e mail addy just let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 Bonita, I wanted to let you know that I'm pulling for your nephew and hoping that his mother will realize that what she has today is a blessing and to be thankful and hopeful. I'm new to this group but learned last year that I have RP and Wegener's Granulomatosis. Due to the permanent damage to the cartilage holding up my airways, I have a pretty poor prognosis. BUT, that is the clinical prognosis that the doctors have given me. It really depresses my husband and two of my three kids who actually believe what they hear from the medical profession. I, however, believe that I can be an exception to this diagnosis and every morning I begin my day in a new fight for my life with prayer, exercise, volunteer work, taking care of my 5-yr old granddaughter, etc. I have faith in me and would love to have my family and certain friends have faith in me too. That seems to be something I have to convince them of every day. I have so much faith in God and myself that giving up is just not an option. " ...but with God, all things are possible. " ( 19:26) Re: re: A Big Thnk you > , > > > Hello it is me, Bonita and i just wanted to say that what you said about > RP is fatal, my nephew Gabby, is 21 and just those 3 words...( it's not > fatal) you will never know how you have given me a blessing, my sister > Stacey, mother of Gabby is going crazy thinking that he is has this fatal > disease and she is such a mother hen, ( which of course, any mother or a > caring heart and loving support goes threw on her own which she feels she has > only one day with him and is set on thinking her son is close to death) which > honestly it upsets me so, that i explain to her stopping putting your mind > set that way, enjoy what you have and live it the fullest but again i don't > understand, she has him so unidependent he wants to work not full time but > some and he does goes to college but she only has him 2 times per week and he > tells her constantly he feels OK, of course he does have his bad days, but > still he wants to do something besides stay at home and be waited on...i have > made many attempts to get them to join the group, because here he can pour > all emotions with a loving and honest support group who can relate to him. > but she doesn't see it that way, so i just now and then mention the group at > times just to let him know i still support the group and now i consider us a > part of the cyberspace family. And that i will always be within the group for > always. So again let me thank you from the bottom of my heart for just those > words. > > Love and my warm prayers and thoughts are with you and the group. > Bonita > > > DISCLAIMER!! > 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 January 5, 2002 Report Share Posted January 5, 2002 , Stents are an option. Mayo has measured me since mine will be a whopping 10 centimeters long (like an upside down Y). It has been manufactured for me and sits on a shelf for when I get to that point. The Mayo docs want to wait as long as possible to put in the stent because of the complications it can cause. I appreciate their cautious approach, but I would like more air! Do you know anyone with a stent? Re: re: A Big Thnk you > In a message dated 1/5/02 7:46:45 AM Pacific Standard Time, > katdavis@... writes: > > << Due to the permanent damage to the > cartilage holding up my airways, >> > . Did they ever mention stents as an option? > > > > > DISCLAIMER!! > 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 January 5, 2002 Report Share Posted January 5, 2002 I would really appreciate 's email address to learn more about the complications that come with the stent. I'd really like one without complications, but the docs say they just don't sell 'em that way! Re: re: A Big Thnk you > In a message dated 1/5/02 11:13:44 AM Pacific Standard Time, > katdavis@... writes: > > << Do you know anyone with a stent? > >> > Yes . I know Harvey has one and there might be more. If so I > can't remember. I know would be glad to give you any information > you want. She is only in her 20's. If you need her e mail addy just let me > know. > > > > > DISCLAIMER!! > 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 January 5, 2002 Report Share Posted January 5, 2002 , Hi here again. I have not had any real trouble with my stent. I only have one and that is is in my left main bronch. My right side is fine. I get my stent checked out every 3 months and i get chest x-ray done when i visit my doctor. From my experience, as long as your doctor stay of top of your medical needs and take precautions if he thinks something maybe wrong, you'll be fine. I don't think you will have any trouble as long as they dont put the stent in and then send you on your way. I am breathing so much better with my stent. I just started doing low impact aerobic again. I have more energy now, i can tell a difference in my breathing. When i got my stent, i was in a life or death situation. I woke up with all of my " hardware". I would love to go back to not having a stent and trach. I know right now that is not possible. I just have to do the next best thing that's going to make me better. I hope this helps you feel a little bit more comfortable about getting a stent put in. One more thing, i keep asking you questions about yourself and as i read more of the post my questions are being answered. So I just want to let you know that i am not crazy-ha ha ha ha. Okay have a good day. Take care Re: re: A Big Thnk you> >> << Due to the permanent damage to the> cartilage holding up my airways, >>> . Did they ever mention stents as an option?>> >>> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT ISRECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTORBEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOURPHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT ANDTREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 Hi , here is e mail address. She is a sweetie and will help you with all your ?. Ronnielyn27@... Heidi > I would really appreciate 's email address to learn more about the > complications that come with the stent. I'd really like one without > complications, but the docs say they just don't sell 'em that way! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 Hi, . Thanks for your insights. My pulmonologist at Mayo will put in the stent. He's overly cautious because he's had to take out several that other doctors have put in and says it's not pretty. Mine will be put in when it's really a quality of life issue. When I started Cytoxan last April, I was told that I'd feel like a noodle after I'd been on it for one year. I love pasta, but I took the doctor's statement as a challenge. I was already walking 1 mile a day, so I've been increasing my physical exercise and now walk 3.1 miles on the treadmill each morning and then 3 days a week, I life weights and the other 3 days I do lower body exercises (ab curls, etc, leg lifts, etc.) It's worse than having a real job! But I think it's kept me healthy so far. I also use a C-PAP at night to blow air continuously into my airways and keep them open. My goal now is to get some of this "fluff" off before I go back to Mayo in April. My prednisone consumption is down to 7.5 mg per day, but my fluff is not paying attention! Thanks for the info. If it becomes inevitable by next April, I'll look forward to it. Re: re: A Big Thnk you> >> << Due to the permanent damage to the> cartilage holding up my airways, >>> . Did they ever mention stents as an option?>> >>> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT ISRECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTORBEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOURPHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT ANDTREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2002 Report Share Posted January 6, 2002 Hi , I've been on Cytoxan for about 4 months now and I already feel like a noodle. My Md. did not tell me this is one of the side effects. LOL Can't wait to see what I feel like after a year. Sandy When I started Cytoxan last April, I was told that I'd feel like a noodle after I'd been on it for one year. I love pasta, but I took the doctor's statement as a challenge. I was already walking 1 mile a day, so I've been increasing my physical exercise and now walk 3.1 miles on the treadmill each morning and then 3 days a week, I life weights and the other 3 days I do lower body exercises (ab curls, etc, leg lifts, etc.) It's worse than having a real job! But I think it's kept me healthy so far. I also use a C-PAP at night to blow air continuously into my airways and keep them open. My goal now is to get some of this "fluff" off before I go back to Mayo in April. My prednisone consumption is down to 7.5 mg per day, but my fluff is not paying attention! Thanks for the info. If it becomes inevitable by next April, I'll look forward to it. Re: re: A Big Thnk you> >> << Due to the permanent damage to the> cartilage holding up my airways, >>> . Did they ever mention stents as an option?>> >>> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT ISRECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTORBEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOURPHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT ANDTREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU>> Quote Link to comment Share on other sites More sharing options...
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