Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 jules, hello. i agree with penny. normally people will consume more hidden carbs than they are aware of and that will keep them out of ketosis. thing like diet soda not to mention the carbonation which can make you retain water, as well as. crystal lite, cream. you might suggest the fat fast and see if that kicks starts her. is she using ketostix's to check to see what stage she is in. is she taking measurements? that can be a better determinent for some people. Especially, if you are starting to exercise at the same time you will gain muscle while losing fat and muscle by virtue is heavier which could explain no weight loss. Have a great evening, diana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 In a message dated 09/22/1999 3:51:16 PM !!!First Boot!!!, Lori72@... writes: << My husband and I have a 7 year old son we live in Florida ( from mass ) . >> Hi Lori! Welcome to the list...post away!!! ) What part of Florida do you live in? I am originally from Orlando, but now live in S. Florida....Homestead! Glad you found us! Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 Hi , I live in Englewood , that is about 20 minutes from Sarasota . Hey ...... I thought I knew those eye's , LOL . Lori Re: Hello >From: GRSHOPER1@... > >In a message dated 09/22/1999 3:51:16 PM !!!First Boot!!!, Lori72@... >writes: > ><< My husband and I have a 7 year old son > we live in Florida ( from mass ) . >> > >Hi Lori! > > Welcome to the list...post away!!! ) What part of Florida do you live >in? I am originally from Orlando, but now live in S. Florida....Homestead! >Glad you found us! > >Marilyn > >>Forget the rest We are the best. BIG AND BEAUTIFUL> BUT LOSING!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Hi Nicolas, I am so sorry that you had to hear the news that all of us on this list and many more in the world have. My son was diagnosed last year when he was 5 years old and it was, and still is devastating. It is an ugly disease but from what I hear, they keep talking about a cure soon. All I can do is live everyday we have to the fullest and give him and my other two children lots of love and care. My deepest condolences to you and your family.. I really do understand what you and your family are going through. BTW, my son has the same mutation as your son. I haven't talked to anyone who has it but you, the only thing Randy's Doctor told us was that it is more digestive than respiratory, but you never know with this disease. Love, & Randy Thigpen Thigpen mommy to: Randy Jr-6 wcf Sakari-4 Madison-1 drmsrt@... nenee@... http://kickme.to/nenee hello, My name is Nicolas. I'm the father of Timothé, little baby of 4 months 1/2. He's got the CF with a G542X mutation and an other non identified mutation. As young parents, my wyfe ( aurélia )and I were not prepared for this and it was a huge bad surprise. We would be very grateful to anybody for testimonies, advices... For the moment timothe is in good health, but what for the future ? thank you. ( sorry for my english, I'm french) *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- 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. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Oopsy! thought this note was going directly to Nicolas... Dont you hate it when that happens??!!! <blush> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Hi Nico, Glad to " see " you here I am also very glad we are more and more europeans on this list. Makes good interaction... Bisous ----- hello, My name is Nicolas. I'm the father of Timothé, little baby of 4 months 1/2. He's got the CF with a G542X mutation and an other non identified mutation. As young parents, my wyfe ( aurélia )and I were not prepared for this and it was a huge bad surprise. We would be very grateful to anybody for testimonies, advices... For the moment timothe is in good health, but what for the future ? thank you. ( sorry for my english, I'm french) *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- 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. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Hi Nico, Glad to " see " you here I am also very glad we are more and more europeans on this list. Makes good interaction... Bisous ----- hello, My name is Nicolas. I'm the father of Timothé, little baby of 4 months 1/2. He's got the CF with a G542X mutation and an other non identified mutation. As young parents, my wyfe ( aurélia )and I were not prepared for this and it was a huge bad surprise. We would be very grateful to anybody for testimonies, advices... For the moment timothe is in good health, but what for the future ? thank you. ( sorry for my english, I'm french) *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- 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. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 Kim, So glad to hear that all is going well with you and . Sounds like he's keeping you on your toes! Thanks for the prayers. I need 'em! Joy http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 Kim, So glad to hear that all is going well with you and . Sounds like he's keeping you on your toes! Thanks for the prayers. I need 'em! Joy http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 Hi Kim, There were 2 doctors from the Hollywood Florida area who were at the Ponseti method training clinic, but as to whether or not they have implemented it and how well they are doing with it I don't know. For a child who is now 4-5 months old, I would suggest that she gets a reference from Dr. Ponseti. Perhaps Dr. Ponseti can refer her to someone in Florida or the southeast. As you realize, if she went to Iowa, she could either stay or travel and could be done with the possible tenotomy in 3 weeks or so and then have the final casts removed in Florida. I assume that she knows that they can travel to Iowa for free on Angel Flights. If she is interested in the French method, it is possible that someone might be doing it in Florida, but the Dallas Scotish Rite Hospital groups says that they typically will not accept a child into treatment who is over 3 months old. She can call Holly at Dallas Scotish Rite to see if she knows anyone in Florida. You mentioned her doctor was going to do a tenotomy and some other things. A tenotomy is essentially a simple method of lengthening the achilles tendon while only creating a minimal amount of of internal scar tissue. If her doctor is doing an open incision, it is more than likely going to be at least a posterior release. Has she asked him what he is planning on doing during the surgery. and (3-17-99) > I don't get much of a chance to write in anymore...and there are so many > new people...welcome! > > My name is Kim and my son was born 9/99 with bilateral > clubfoot. We flew out to Iowa last February (I can't believe it's > already been a year) to see Dr. Ponseti. is now almost 17 > months and he's walking and climbing and running and climbing and jumping > and climbing...well, y'all get the picture... > > Joy, I'm praying for you to have that baby soon...I thought > was never coming out...lol. > > Lori...what was your due date? I've been thinking about you, too. > > I have a friend whose baby was born last October with bilateral clubfeet, > and she's been seeing the doctor in Gainesville that we've followed up > with. The baby is scheduled for surgery for the tenotomy and also to > have the tendon (or something) around his ankle lengthened. She's talked > to Dr. P, but Iowa is too far for them to go. ...you had mentioned > some doctors in Florida that had gone to the meeting back in > September...do you still have those names or are they on the virtual > hospital website? Also, she's looking into massage therapy instead of > the ankle surgery...and she asked me yesterday about the French > Physiotherapy method. I know Pam has gone through that with , but I > didn't see any posts from her today. Any links or anything would be > greatly appreciated. She's trying to stay as local as possible. > > Well, back to my corner of the world here > > In Him, > Kim > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 Hi Kim, It is great to hear from you and that all is going well for you all. It sounds like Christpher is keeping you busy! It is hard to believe that it has been almost a year! Sara and IVy 8/17/99 www.clubfoot.net hello > I don't get much of a chance to write in anymore...and there are so many > new people...welcome! > > My name is Kim and my son was born 9/99 with bilateral > clubfoot. We flew out to Iowa last February (I can't believe it's > already been a year) to see Dr. Ponseti. is now almost 17 > months and he's walking and climbing and running and climbing and jumping > and climbing...well, y'all get the picture... > > Joy, I'm praying for you to have that baby soon...I thought > was never coming out...lol. > > Lori...what was your due date? I've been thinking about you, too. > > I have a friend whose baby was born last October with bilateral clubfeet, > and she's been seeing the doctor in Gainesville that we've followed up > with. The baby is scheduled for surgery for the tenotomy and also to > have the tendon (or something) around his ankle lengthened. She's talked > to Dr. P, but Iowa is too far for them to go. ...you had mentioned > some doctors in Florida that had gone to the meeting back in > September...do you still have those names or are they on the virtual > hospital website? Also, she's looking into massage therapy instead of > the ankle surgery...and she asked me yesterday about the French > Physiotherapy method. I know Pam has gone through that with , but I > didn't see any posts from her today. Any links or anything would be > greatly appreciated. She's trying to stay as local as possible. > > Well, back to my corner of the world here > > In Him, > Kim > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/tagj. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 Hi Kim: Thanks to , I found a young mother in Winter Park who had taken her son to the Nemour's Childrens Hospital in Orlando - Bobby was born with bilateral club foot. She saw Dr. Knapp who is practicing the Ponseti method. She sent snapshots of before and after pics to Dr. Ponseti and he was greatly impressed. You may want to give your friend this information. As you know, my unborn baby has been diagnosed with left clubfoot and I have scheduled an appt with Nemours for a few days after the supposed due date. They have been great working with me on this. They want to see my baby about 5 days after delivery so they can get started with the castings right away. I was encouraged by Kathleen and Bobby's story. I did email Dr. Ponseti w/this information. If I don't like the way things are going in Orlando, I will still have time to fly to Iowa and see Dr. P - but Orlando is so close and even closer for you. Hope all is well with you and your family. and Baby Cypert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 , Thanks for the information. We talked quite a while on Monday about the baby's upcoming surgery and she's really not comfortable with it. The tenotomy she expected. But the other surgery had to do something with his ankle...she wasn't sure what the doctor had called it. She has spoken to Dr. Ponseti and he told her not to have the ankle surgery done. She called Dr. Price in Orlando, but he's not accepting new patients. I'll let her know to call Dr. Ponseti for a referral closer to home for her. I told her that I was only in Iowa for 2 weeks (I wouldn't have minded staying longer...I enjoyed the snow after this lovely Florida heat!). In fact, she was one of my pray-ers while I was there! In Him, Kim ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2001 Report Share Posted September 26, 2001 Hi, Janet. Thanks for the reply. I do trust Dr. Herzenberg completely. I just had never heard of having to do a second tenotomy. His first one was in March of this year, and he seemed to have been doing well until our last visit, although the left foot was never quite as flexible as the right. The left foot is also shorter, something I have been meaning to ask about but keep forgetting! Thanks again, and maybe we will run into each other in Baltimore one day. Do you have a very long drive, or are you from the Balto area? We are from Virginia, and since Dr. Herzenberg's office moved to Sinai our trip takes about 2 1/4 hours depending on traffic. Bonnie, mom to Zack,8/3/93, ,12/29/97, and Dylan,10/26/00-bilateral CF On Tue, 25 Sep 2001 21:07:55 -0400 " MICHAEL W COSTER " writes: Bonnie, my name is Janet. My son , 10 weeks also is a patient of Dr. Herzenberg. I can't say enough good things about him. My son was born with " severe " bilateral club feet and had his first casts at 2 days old. According to Dr. Herzenberg's rating scale, he started out as a " 6 " and is now to " 0 " !!! I would totally trust him if he feels a second tenotomy is needed, however I have never heard of having a second one done, although I am new to the world of clubfeet. I know that after having a tenotomy done the tendon regenerates in 3 weeks, so possibly it did not heal in a way to give him enough mobility of the heel (??) Hello > I have been a lurker for quite a while now. I figured it was about > time to get active in the group. My name is Bonnie, and I am 28 years > old. My husband is Jack, we have been married for 9 years. We also > have 3 sons, Zachary,8, ,3, and Dylan,10 1/2 months. We live > in Fredericksburg, VA. > > Dylan was born with bilateral clubfeet. We began treatment with a > doctor in Richmond that said she was using the Ponseti method,but > after 11 casts, we contacted doctor Ponseti, and he referred us to > Dr. Herzenberg. We began treatment in the Ponseti method in February. > So far we have been very pleased with Dr. Herzenberg. > > Of course, I do have a question for you all. LOL. Has anyone here > ever had to have a second tenotomy done? We went to Dr. Herzenberg > yesterday for a follow up appt. Dylan has been in the DBB since > march, and only part time since June. His left foot has always been a > little tighter than his right. Yesterday Dr. Herzenberg could barely > bend it upwards at all. So, he felt it was wise to recast Dylan. He > feels he may need to have 1-2 more castings and there is a 50/50 > chance he may need a second tenotomy on his left foot. Has this ever > happened to anyone else? I am totally unprepared for this, and not > quite sure what to expect. Dylan, needless to say, is NOT happy about > the casts AT ALL. Thanks! > > Bonnie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Bonnie, I think I actually may have met you. I recall a mother in the cast room that said she was from Virginia, I believe the father was there too, maybe it was you. I am from BelAir land, just north of Baltimore. It takes about 45 minutes to an hour for us to get to Dr. Herzenberg's office. I will be there this Thursday to finally have the last cast taken off, and the DBB will be put on for the first time. I am worried about him banging up the crib with it, I heard you can buy a soft cover for the bar?? Have you heard of a place or website that sells them?? Janet, mom to (7/18/01) Hello > > > > I have been a lurker for quite a while now. I figured it was about > > time to get active in the group. My name is Bonnie, and I am 28 years > > old. My husband is Jack, we have been married for 9 years. We also > > have 3 sons, Zachary,8, ,3, and Dylan,10 1/2 months. We live > > in Fredericksburg, VA. > > > > Dylan was born with bilateral clubfeet. We began treatment with a > > doctor in Richmond that said she was using the Ponseti method,but > > after 11 casts, we contacted doctor Ponseti, and he referred us to > > Dr. Herzenberg. We began treatment in the Ponseti method in February. > > So far we have been very pleased with Dr. Herzenberg. > > > > Of course, I do have a question for you all. LOL. Has anyone here > > ever had to have a second tenotomy done? We went to Dr. Herzenberg > > yesterday for a follow up appt. Dylan has been in the DBB since > > march, and only part time since June. His left foot has always been a > > little tighter than his right. Yesterday Dr. Herzenberg could barely > > bend it upwards at all. So, he felt it was wise to recast Dylan. He > > feels he may need to have 1-2 more castings and there is a 50/50 > > chance he may need a second tenotomy on his left foot. Has this ever > > happened to anyone else? I am totally unprepared for this, and not > > quite sure what to expect. Dylan, needless to say, is NOT happy about > > the casts AT ALL. Thanks! > > > > Bonnie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Janet, The soft cover I have for Jakob's bar was sent to me my Beth Meyers (the Cast Lady from Twin Cities Shriner's). Others have used bicycle handlebar covers or car seat strap covers to cover the bar, MICHAEL W COSTER wrote: > Bonnie, > > I think I actually may have met you. I recall a mother in the cast > room > that said she was from Virginia, I believe the father was there too, > maybe > it was you. I am from BelAir land, just north of Baltimore. It > takes > about 45 minutes to an hour for us to get to Dr. Herzenberg's office. > I > will be there this Thursday to finally have the last cast taken off, > and the > DBB will be put on for the first time. I am worried about him banging > up > the crib with it, I heard you can buy a soft cover for the bar?? Have > you > heard of a place or website that sells them?? > > Janet, mom to (7/18/01) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 I don't think it was me. The last time I was up there (before these last visits) was in June, and we didn't go in the cast room. Too bad your appointment wasn't this past Friday, we were there getting new casts on. We go back in 2 weeks to take these off and then Dr. Herzenberg will decide if he needs the 2nd tenotomy. Good Luck with the DBB. Bonnie, mom to Zack,8/3/93, ,12/29/97, and Dylan,10/26/00-bilateral CF On Sun, 30 Sep 2001 10:14:05 -0400 " MICHAEL W COSTER " writes: Bonnie, I think I actually may have met you. I recall a mother in the cast room that said she was from Virginia, I believe the father was there too, maybe it was you. I am from BelAir land, just north of Baltimore. It takes about 45 minutes to an hour for us to get to Dr. Herzenberg's office. I will be there this Thursday to finally have the last cast taken off, and the DBB will be put on for the first time. I am worried about him banging up the crib with it, I heard you can buy a soft cover for the bar?? Have you heard of a place or website that sells them?? Janet, mom to (7/18/01) Hello > > > > I have been a lurker for quite a while now. I figured it was about > > time to get active in the group. My name is Bonnie, and I am 28 years > > old. My husband is Jack, we have been married for 9 years. We also > > have 3 sons, Zachary,8, ,3, and Dylan,10 1/2 months. We live > > in Fredericksburg, VA. > > > > Dylan was born with bilateral clubfeet. We began treatment with a > > doctor in Richmond that said she was using the Ponseti method,but > > after 11 casts, we contacted doctor Ponseti, and he referred us to > > Dr. Herzenberg. We began treatment in the Ponseti method in February. > > So far we have been very pleased with Dr. Herzenberg. > > > > Of course, I do have a question for you all. LOL. Has anyone here > > ever had to have a second tenotomy done? We went to Dr. Herzenberg > > yesterday for a follow up appt. Dylan has been in the DBB since > > march, and only part time since June. His left foot has always been a > > little tighter than his right. Yesterday Dr. Herzenberg could barely > > bend it upwards at all. So, he felt it was wise to recast Dylan. He > > feels he may need to have 1-2 more castings and there is a 50/50 > > chance he may need a second tenotomy on his left foot. Has this ever > > happened to anyone else? I am totally unprepared for this, and not > > quite sure what to expect. Dylan, needless to say, is NOT happy about > > the casts AT ALL. Thanks! > > > > Bonnie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 I don't think it was me. The last time I was up there (before these last visits) was in June, and we didn't go in the cast room. Too bad your appointment wasn't this past Friday, we were there getting new casts on. We go back in 2 weeks to take these off and then Dr. Herzenberg will decide if he needs the 2nd tenotomy. Good Luck with the DBB. Bonnie, mom to Zack,8/3/93, ,12/29/97, and Dylan,10/26/00-bilateral CF On Sun, 30 Sep 2001 10:14:05 -0400 " MICHAEL W COSTER " writes: Bonnie, I think I actually may have met you. I recall a mother in the cast room that said she was from Virginia, I believe the father was there too, maybe it was you. I am from BelAir land, just north of Baltimore. It takes about 45 minutes to an hour for us to get to Dr. Herzenberg's office. I will be there this Thursday to finally have the last cast taken off, and the DBB will be put on for the first time. I am worried about him banging up the crib with it, I heard you can buy a soft cover for the bar?? Have you heard of a place or website that sells them?? Janet, mom to (7/18/01) Hello > > > > I have been a lurker for quite a while now. I figured it was about > > time to get active in the group. My name is Bonnie, and I am 28 years > > old. My husband is Jack, we have been married for 9 years. We also > > have 3 sons, Zachary,8, ,3, and Dylan,10 1/2 months. We live > > in Fredericksburg, VA. > > > > Dylan was born with bilateral clubfeet. We began treatment with a > > doctor in Richmond that said she was using the Ponseti method,but > > after 11 casts, we contacted doctor Ponseti, and he referred us to > > Dr. Herzenberg. We began treatment in the Ponseti method in February. > > So far we have been very pleased with Dr. Herzenberg. > > > > Of course, I do have a question for you all. LOL. Has anyone here > > ever had to have a second tenotomy done? We went to Dr. Herzenberg > > yesterday for a follow up appt. Dylan has been in the DBB since > > march, and only part time since June. His left foot has always been a > > little tighter than his right. Yesterday Dr. Herzenberg could barely > > bend it upwards at all. So, he felt it was wise to recast Dylan. He > > feels he may need to have 1-2 more castings and there is a 50/50 > > chance he may need a second tenotomy on his left foot. Has this ever > > happened to anyone else? I am totally unprepared for this, and not > > quite sure what to expect. Dylan, needless to say, is NOT happy about > > the casts AT ALL. Thanks! > > > > Bonnie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 , I'm glad you are back with us. I am sorry about your mother. Thank you for sharing your thoughts with us. I know I felt many of the same things you experienced when my sister died two years ago: sadness, loneliness, but a constant awareness of how many blessings we had and still have. I am still overwhelmed with the feeling of gratitude that I had (still have really) such a wonderful sister. My sister also died of liver failure (her breast cancer spread to her liver). It was very sobering and scary to see the process first hand. My sister's death has caused my mother to be even more concerned for me. How has your health been through all of this? I hope your body held up as well as your spiritual and mental health seems to have held up. It will be good to hear from you more frequently. Cheryl Berg, Idaho 45Married 26 years, 4 children, 3 grchildrenPSC 01, UC 00, Fibromyalgia, gall baldder removed '93disability (retired English teacher) Hello , here. In case I haven't posted since...my mother passed away on May 3rd of this year. It was a long 5 months in hospice, but God was good to us in many ways. I miss her terribly, but I am healing. It had a real impact on my brothers, seeing first hand what such a condition can do, and knowing that I have PSC. The past several months have certainly brought us closer than ever. I'm so glad that we found good in the middle of something less than.I plan to post more frequently now that life is beginning to calm down some. Talk to you all soon.PSC & UC 1984, chronic pancreatitis 1997 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 , I know that several people have had spontaneous pancreatitis attacks and that more of us get pancreatitis every time we have an ERCP, but that's very different from sclerosing of the pancreas which is what you seem to be implying. I don't know of anyone in our group that has that problem. I was not a caretaker for my sister. She lived about 2 1/2 hours away. You must have been under a tremendous amount of stress taking care of you mother during those months. I am positive that stress affects our health. My doctor worries about my levels of stress and absolutely insisted that I see a counselor. It has been a very positive experience for me. I have quite a few other problems besides PSC and my doctor says it's a very definite possibility that my body could give out before I ever qualify for a transplant. While a "permanent vaction" isn't practical, a change in our lives is necessary. For me, there have been drastic changes. I quit work; I don't do all the family activities I used to; I can't participate socially like we used to. When I over do it, I can hardly get out of bed. I was always a high energy, involved in everything, committee chairman type person. Big changes. I would say that my health is holding up fairly well. I haven't had a cholangitis attack for years. I still get itchy, but not nearly as bad as it used to be. I feel nauseated most of the time, but I'm learning to live with it. I still have some bouts of diarrhea, but they don't last more than a day or two. I have the upper abdomenal pain and early satiety problems most of the time. I get about 6 sinus infections a year that make me so miserable. I suffer from bad headaches and body aches that put me to bed, but I still consider myself lucky. I am only hospitalized once a year for my ERCPs which usually give me pancreatitis. I don't have ascites or varices. My weight is maintaining right now and I can eat at least two meals a day. I suffer from some depression, but see a counselor occasionally. I get pretty lonely. I loved my job and I miss the daily contact with colleagues. But I have all these friends here and have learned so much about life and living from all these challenges. If you have any specific questions, I would be happy to answer them. Do you have a MELD score? Where will you be transplanted? I'm interested in finding out what your tx team says. Stay in touch, Cheryl Berg, Idaho 45Married 26 years, 4 children, 3 grchildrenPSC 01, UC 00, Fibromyalgia, hypothyroid,hiatal hernia, ulcer, gall baldder removed '93disability (retired English teacher) Cheryl, I saw the transplant team 4/04 and we discussed a pancreas tx as well. He tells me that I can live several years after my pancreas 'burns out'. (My docs tell me that they do not have any other patients who's pancreas is involved in the PSC process. Is there anyone else out there that has experienced this?) I see the doc today (not tx team) at four to decide our plan of action. I know that he wants my gall bladder removed, but I am not sure if he will go in and do sphincterotomies again so soon. (I have never needed them done this close together before.) I'm sure the stress in my life has complicated things; I'm not sure how it couldn't. I took two days and stayed in a hotel in IL and spent a lot of time by the lake there, and did a lot of reading and writing. I had less pain, and took less compazine than I had in 2 mo. That tells me there is some correlation between stress and ailment. My solution...go on a permanent vacation! I know that you probably covered your history when you first entered the group so I apologize for asking you to repeat yourself. But...I see you were diagnosed in '01. How have you been holding up since that time? How are you currently? I am always interested in other's experiences as this disease is so diverse in so many ways. Missouri PSC & UC '84, chronic pancreatitis '97 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Ruth, I am not one of the old timers, but when I first found this site, I read back through the archives and read through the posts from you and . Seeing 's picture and reading his story, I told my husband there are people who have sons like ours. They'll understand. And then Dave began to build the PSC literature site to try to be of some help. So you and were among the reasons we got started. Thank you for having shared so much. God bless. Judy (mom of , 19 yrs old dx Psc 7/03, UC 8/03) Quote Link to comment Share on other sites More sharing options...
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