Guest guest Posted September 7, 2000 Report Share Posted September 7, 2000 In a message dated 9/6/2000 10:55:56 PM Eastern Daylight Time, katherin@... writes: << I was wondering how the experience has gone for those patients who live outside NC? I'd like to hear from anyone who has had problems once they have returned home. Thanks >> Hi Katherin! I'm absolutely no help, as I'm still a pre-op, but thought I'd say that you'd be lucky to hear from anyone on your question... not many people (that I've heard from on this list and via private email) have had any complications/problems, at least other than the norm of mild discomfort the first few days and getting used to their new eating habits. Good luck and I'm sure this list will be very educational for you, as it has been for me! ~Robin BMI of 39.5 CALLING HER PCP TODAY, PROMISE!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 In a message dated 4/22/02 5:42:20 PM Pacific Daylight Time, TheNavigator01@... writes: << Dear , Got your welcome and thanks. I am new to computers and is there a chat room you can go to or do you send e-mails only? Sally >> Sally, I'm going to but in her okay.LOl We have a chat on Wed mornings at 9:30am pacific time and on Friday evenings at 6:30 pacific time. It is open to us all day, so if you see someone on line and would rather chat, please feel free to invite them. I know I will always come. LOL There is voice there too so it is really fun. Oh.. the chat is at http://groups.yahoo.com/group/rpolychondritis/chat Hope to see you there soon. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Hi Sally, Welcome to the RP group. Looking forward to getting to know you. Sandy Dear , Got your welcome and thanks. I am new to computers and is there a chat room you can go to or do you send e-mails only? Sally 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 November 11, 2003 Report Share Posted November 11, 2003 Welcome aboard--best ship around! Love, n Rojas, wcf, mom of 3 adults, youngest wcf; other 2 are carriers New member > I have been reading the e-mails from this board for a while but just > now I have time to introduce myself. I am the mum of a 10 months old > boy with CF, his name is torin. I am from Brazil and my husband from > USA and we met at the internet, ICQ, 3 years ago. Such odd situation > to find the love of my life...I would never thought about us being > the carrier of some genetic mutation. But I belive that fate put as > together and fate gave us our wonderful and spoiled baby. we live in > GA, and I have no family or friends here. I miss my family a lot and > I had no idea how to take care of a baby...and a baby w/cf is sorta > a chalanger to me. I needed to quit my job coz we decide to wait > till torin is 2 years old to put him at day care. > Torin had meconiun ileus ( I have no idea how to write it), and went > to surgery 6 hours after birth. after the surgery was the first time > in my life I heard about CF. But the next day they were not thinking > it was cf...well, it took them almost 2 months to confirm the Dx, > firt they did 1 sweat test ( 65) and them 3 genetic test , believe > or not they lost the firt 2. then they called a GI Doc, wonderful > person and the first one in that nicu to do something to really help > my son. we left the nicu when my baby was 43 days. and no one really > explain to us what cf was...I got in the internet to learn, get > scared...8 months later...I know a little bit about cf ...and about > how to take care of my baby...everything is so new..to nurse him, to > feed him, neb him, medication, etc.......we are luck he've had no > real problem since we left the hospital and is such a happy , > spoiled child. > well..be ready to listen from me...I have so many doubts... > see u soon > > val ( mom of Torin 10 m with cf and 1 tooth) > ps: I am sorry about my english...hope you all are able to > understand me > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 Val, It's so nice that you have joined the discussion. It sounds like you are doing a great job with your son. Do you miss Brazil or mostly just the family and friends in Brazil? I have seen pictures of Brazil and it looks pretty. I just started working with a company located in Brazil. I am hoping to visit this company sometime next year. Would you have access to good CF medical care in Brazil? You're english is very good. I am always impressed with people that can speak more than one language. I have a 23 month old grand daughter that has CF. She was diagnosed at 3 months age. She is doing well. You are right. The treatment is a lot of work. Can your mother come stay with you for a while? That would be so nice. What is " the internet, ICQ? Please keep in touch. Gale > I have been reading the e-mails from this board for a while but just > now I have time to introduce myself. I am the mum of a 10 months old > boy with CF, his name is torin. I am from Brazil and my husband from > USA and we met at the internet, ICQ, 3 years ago. Such odd situation > to find the love of my life...I would never thought about us being > the carrier of some genetic mutation. But I belive that fate put as > together and fate gave us our wonderful and spoiled baby. we live in > GA, and I have no family or friends here. I miss my family a lot and > I had no idea how to take care of a baby...and a baby w/cf is sorta > a chalanger to me. I needed to quit my job coz we decide to wait > till torin is 2 years old to put him at day care. > Torin had meconiun ileus ( I have no idea how to write it), and went > to surgery 6 hours after birth. after the surgery was the first time > in my life I heard about CF. But the next day they were not thinking > it was cf...well, it took them almost 2 months to confirm the Dx, > firt they did 1 sweat test ( 65) and them 3 genetic test , believe > or not they lost the firt 2. then they called a GI Doc, wonderful > person and the first one in that nicu to do something to really help > my son. we left the nicu when my baby was 43 days. and no one really > explain to us what cf was...I got in the internet to learn, get > scared...8 months later...I know a little bit about cf ...and about > how to take care of my baby...everything is so new..to nurse him, to > feed him, neb him, medication, etc.......we are luck he've had no > real problem since we left the hospital and is such a happy , > spoiled child. > well..be ready to listen from me...I have so many doubts... > see u soon > > val ( mom of Torin 10 m with cf and 1 tooth) > ps: I am sorry about my english...hope you all are able to > understand me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 WELCOME This is a very friendly and informed group of folks. Each are so helpful. If you would send me your mailing address, I will send you many items that will teach you even more about CF . The tapes are especially helpful . You & your hubby will like seeing these other folks who are either parents of a person .child with CF or they have CF themselves. I will send them out right away. The tapes are not very long , but are very good. The booklets aren't long at all but VERY helpful . They are written so all can understand. Your 1 st language is Spanish??? I have a few items in Spanish , if you would like??? LOVE & HUGS, GrandmomBEV Re: New member Welcome aboard--best ship around! Love, n Rojas, wcf, mom of 3 adults, youngest wcf; other 2 are carriers New member > I have been reading the e-mails from this board for a while but just > now I have time to introduce myself. I am the mum of a 10 months old > boy with CF, his name is torin. I am from Brazil and my husband from > USA and we met at the internet, ICQ, 3 years ago. Such odd situation > to find the love of my life...I would never thought about us being the > carrier of some genetic mutation. But I belive that fate put as > together and fate gave us our wonderful and spoiled baby. we live in > GA, and I have no family or friends here. I miss my family a lot and I > had no idea how to take care of a baby...and a baby w/cf is sorta a > chalanger to me. I needed to quit my job coz we decide to wait till > torin is 2 years old to put him at day care. Torin had meconiun ileus > ( I have no idea how to write it), and went to surgery 6 hours after > birth. after the surgery was the first time in my life I heard about > CF. But the next day they were not thinking it was cf...well, it took > them almost 2 months to confirm the Dx, firt they did 1 sweat test ( > 65) and them 3 genetic test , believe or not they lost the firt 2. > then they called a GI Doc, wonderful person and the first one in that > nicu to do something to really help my son. we left the nicu when my > baby was 43 days. and no one really explain to us what cf was...I got > in the internet to learn, get scared...8 months later...I know a > little bit about cf ...and about how to take care of my > baby...everything is so new..to nurse him, to feed him, neb him, > medication, etc.......we are luck he've had no real problem since we > left the hospital and is such a happy , spoiled child. > well..be ready to listen from me...I have so many doubts... > see u soon > > val ( mom of Torin 10 m with cf and 1 tooth) > ps: I am sorry about my english...hope you all are able to > understand me > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 Val, Welcome to the best place on the net. We are very happy to have you and don't worry about your English, it is great. I am originally from Venezuela, but now I live in Memphis, TN. We have people from all over the world on this wonderful list. I have a 10 year old with cf and she was diagnosed in May of 2002, I am also still learning, it is an ongoing process. Well, if you need help don't hesitate to ask, I know with a little one, time is something that we do not have. Once, again, welcome! mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf > I have been reading the e-mails from this board for a while but just > now I have time to introduce myself. I am the mum of a 10 months old > boy with CF, his name is torin. I am from Brazil and my husband from > USA and we met at the internet, ICQ, 3 years ago. Such odd situation > to find the love of my life...I would never thought about us being > the carrier of some genetic mutation. But I belive that fate put as > together and fate gave us our wonderful and spoiled baby. we live in > GA, and I have no family or friends here. I miss my family a lot and > I had no idea how to take care of a baby...and a baby w/cf is sorta > a chalanger to me. I needed to quit my job coz we decide to wait > till torin is 2 years old to put him at day care. > Torin had meconiun ileus ( I have no idea how to write it), and went > to surgery 6 hours after birth. after the surgery was the first time > in my life I heard about CF. But the next day they were not thinking > it was cf...well, it took them almost 2 months to confirm the Dx, > firt they did 1 sweat test ( 65) and them 3 genetic test , believe > or not they lost the firt 2. then they called a GI Doc, wonderful > person and the first one in that nicu to do something to really help > my son. we left the nicu when my baby was 43 days. and no one really > explain to us what cf was...I got in the internet to learn, get > scared...8 months later...I know a little bit about cf ...and about > how to take care of my baby...everything is so new..to nurse him, to > feed him, neb him, medication, etc.......we are luck he've had no > real problem since we left the hospital and is such a happy , > spoiled child. > well..be ready to listen from me...I have so many doubts... > see u soon > > val ( mom of Torin 10 m with cf and 1 tooth) > ps: I am sorry about my english...hope you all are able to > understand me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Val, Welcome! This is a great place to get help and support. don't worry about your English, it's fine. It sounds like Torin is as spoiled as my daughter! Mom of 5 with CF and ? New member I have been reading the e-mails from this board for a while but just now I have time to introduce myself. I am the mum of a 10 months old boy with CF, his name is torin. I am from Brazil and my husband from USA and we met at the internet, ICQ, 3 years ago. Such odd situation to find the love of my life...I would never thought about us being the carrier of some genetic mutation. But I belive that fate put as together and fate gave us our wonderful and spoiled baby. we live in GA, and I have no family or friends here. I miss my family a lot and I had no idea how to take care of a baby...and a baby w/cf is sorta a chalanger to me. I needed to quit my job coz we decide to wait till torin is 2 years old to put him at day care. Torin had meconiun ileus ( I have no idea how to write it), and went to surgery 6 hours after birth. after the surgery was the first time in my life I heard about CF. But the next day they were not thinking it was cf...well, it took them almost 2 months to confirm the Dx, firt they did 1 sweat test ( 65) and them 3 genetic test , believe or not they lost the firt 2. then they called a GI Doc, wonderful person and the first one in that nicu to do something to really help my son. we left the nicu when my baby was 43 days. and no one really explain to us what cf was...I got in the internet to learn, get scared...8 months later...I know a little bit about cf ...and about how to take care of my baby...everything is so new..to nurse him, to feed him, neb him, medication, etc.......we are luck he've had no real problem since we left the hospital and is such a happy , spoiled child. well..be ready to listen from me...I have so many doubts... see u soon val ( mom of Torin 10 m with cf and 1 tooth) ps: I am sorry about my english...hope you all are able to understand me Quote Link to comment Share on other sites More sharing options...
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