Guest guest Posted April 22, 2001 Report Share Posted April 22, 2001 Good Luck Rosemary! I have a very good friend going for the consultation this week also. Hopefully it will be a good week!Jodie W.Age 28BMI 49.9Dr. HessMarch 28, 01/325 lbsPaid By Coresource and Aetna04-06-01 Down 20 pounds!04-09-01 297 1/2 lbs Down 27 1/2 lbs!04-20-01 288, Down 37 lbs! ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.237 / Virus Database: 115 - Release Date: 3/7/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2001 Report Share Posted April 22, 2001 Good Luck Rosemary! I have a very good friend going for the consultation this week also. Hopefully it will be a good week!Jodie W.Age 28BMI 49.9Dr. HessMarch 28, 01/325 lbsPaid By Coresource and Aetna04-06-01 Down 20 pounds!04-09-01 297 1/2 lbs Down 27 1/2 lbs!04-20-01 288, Down 37 lbs! ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.237 / Virus Database: 115 - Release Date: 3/7/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2001 Report Share Posted April 22, 2001 Good Luck Rosemary! I have a very good friend going for the consultation this week also. Hopefully it will be a good week!Jodie W.Age 28BMI 49.9Dr. HessMarch 28, 01/325 lbsPaid By Coresource and Aetna04-06-01 Down 20 pounds!04-09-01 297 1/2 lbs Down 27 1/2 lbs!04-20-01 288, Down 37 lbs! ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.237 / Virus Database: 115 - Release Date: 3/7/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 Lori, just wait until that child hits the schools--look out!! Impressive! n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 In a message dated 5/26/2002 7:18:40 AM Eastern Daylight Time, Mcesana@... writes: << What breed or breeds is Tobi? Irish? Watch out! You predicted it! And we on this list do take seriously your axioms! >> Tobi is part black lab, shepard and rottweiler (?) or terrier(?). He is a mutt. They found him abandoned in a park in January in a box with 4 other puppies. On Friday I told the kids it was the last Tobi - Dylan (5) thought we were getting rid of the dog. I love the first few days of no Tobi - I feel so free and relaxed. Rosemary in New York with three children with CF - they are 11.9, 9.5, 5..7...... I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named Tobi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 In a message dated 5/26/2002 7:18:40 AM Eastern Daylight Time, Mcesana@... writes: << What breed or breeds is Tobi? Irish? Watch out! You predicted it! And we on this list do take seriously your axioms! >> Tobi is part black lab, shepard and rottweiler (?) or terrier(?). He is a mutt. They found him abandoned in a park in January in a box with 4 other puppies. On Friday I told the kids it was the last Tobi - Dylan (5) thought we were getting rid of the dog. I love the first few days of no Tobi - I feel so free and relaxed. Rosemary in New York with three children with CF - they are 11.9, 9.5, 5..7...... I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named Tobi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 In a message dated 5/26/2002 7:18:40 AM Eastern Daylight Time, Mcesana@... writes: << What breed or breeds is Tobi? Irish? Watch out! You predicted it! And we on this list do take seriously your axioms! >> Tobi is part black lab, shepard and rottweiler (?) or terrier(?). He is a mutt. They found him abandoned in a park in January in a box with 4 other puppies. On Friday I told the kids it was the last Tobi - Dylan (5) thought we were getting rid of the dog. I love the first few days of no Tobi - I feel so free and relaxed. Rosemary in New York with three children with CF - they are 11.9, 9.5, 5..7...... I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named Tobi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2002 Report Share Posted June 30, 2002 Rosemary, I think, as I am both a patient wcf and a parent of a child/adult wcf, that the more difficult role is hard to determine. It can be so hard for the kids to adjust (and to what?), and can make the parents feel so sad. It's enough to strain the relationship between any husband and wife. Wishing you all well as you cope with all that you must, n whose life was probably made easier in an odd way, during parenting, by the fact that the middle child had serious allergies and actually caused more rucous, complained more and probably, over her first years, felt worse, as she is more sensitive to physical pain and discomfort than is her younger sister wcf. marion rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 --- Thank you for the info. The 2nd link tho didn't work..I really want to get it done (genetic testing) because I need to know if I have HP for my kids sake and my mom...my mom has been sick so many years and they diagnosed her with AIP (Porphyria) and I have it also, it is a genetic blood disease, but all her pains are treated as the porphyria, she might be having Pancreas pains all this time and never knew!!!! Such a misdianosed disease, huh?? Rosemary In pancreatitis@y..., " SHANNON TUTEN " wrote: > > Hi: > The University of Pittsburgh has its on pancreas web site. iT has a lot of > information on Hereditary Pancreatitis. here is the link. > > http://pancreas.org/patients/patients_other_gentesting.html > > also you can find alot of other information on CP at the Hopkins site. > > www.hopkins-gi.org > > I hope these help. > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 --- Thank you for the info. The 2nd link tho didn't work..I really want to get it done (genetic testing) because I need to know if I have HP for my kids sake and my mom...my mom has been sick so many years and they diagnosed her with AIP (Porphyria) and I have it also, it is a genetic blood disease, but all her pains are treated as the porphyria, she might be having Pancreas pains all this time and never knew!!!! Such a misdianosed disease, huh?? Rosemary In pancreatitis@y..., " SHANNON TUTEN " wrote: > > Hi: > The University of Pittsburgh has its on pancreas web site. iT has a lot of > information on Hereditary Pancreatitis. here is the link. > > http://pancreas.org/patients/patients_other_gentesting.html > > also you can find alot of other information on CP at the Hopkins site. > > www.hopkins-gi.org > > I hope these help. > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 --- Thank you for the info. The 2nd link tho didn't work..I really want to get it done (genetic testing) because I need to know if I have HP for my kids sake and my mom...my mom has been sick so many years and they diagnosed her with AIP (Porphyria) and I have it also, it is a genetic blood disease, but all her pains are treated as the porphyria, she might be having Pancreas pains all this time and never knew!!!! Such a misdianosed disease, huh?? Rosemary In pancreatitis@y..., " SHANNON TUTEN " wrote: > > Hi: > The University of Pittsburgh has its on pancreas web site. iT has a lot of > information on Hereditary Pancreatitis. here is the link. > > http://pancreas.org/patients/patients_other_gentesting.html > > also you can find alot of other information on CP at the Hopkins site. > > www.hopkins-gi.org > > I hope these help. > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Rosemary, http://hopkins-gi.org/pages/latin/templates/ Try this. I had tried that link a week or so ago from my favorites list and it was no longer valid. This link should take you to the s Hopkins Medical Institutions Gastroenterology & Hepatology Resource Center. Hope this helps. Jill Re: Rosemary --- Thank you for the info. The 2nd link tho didn't work..I really want to get it done (genetic testing) because I need to know if I have HP for my kids sake and my mom...my mom has been sick so many years and they diagnosed her with AIP (Porphyria) and I have it also, it is a genetic blood disease, but all her pains are treated as the porphyria, she might be having Pancreas pains all this time and never knew!!!! Such a misdianosed disease, huh?? Rosemary In pancreatitis@y..., " SHANNON TUTEN " wrote: > > Hi: > The University of Pittsburgh has its on pancreas web site. iT has a lot of > information on Hereditary Pancreatitis. here is the link. > > http://pancreas.org/patients/patients_other_gentesting.html > > also you can find alot of other information on CP at the Hopkins site. > > www.hopkins-gi.org > > I hope these help. > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Rosemary, http://hopkins-gi.org/pages/latin/templates/ Try this. I had tried that link a week or so ago from my favorites list and it was no longer valid. This link should take you to the s Hopkins Medical Institutions Gastroenterology & Hepatology Resource Center. Hope this helps. Jill Re: Rosemary --- Thank you for the info. The 2nd link tho didn't work..I really want to get it done (genetic testing) because I need to know if I have HP for my kids sake and my mom...my mom has been sick so many years and they diagnosed her with AIP (Porphyria) and I have it also, it is a genetic blood disease, but all her pains are treated as the porphyria, she might be having Pancreas pains all this time and never knew!!!! Such a misdianosed disease, huh?? Rosemary In pancreatitis@y..., " SHANNON TUTEN " wrote: > > Hi: > The University of Pittsburgh has its on pancreas web site. iT has a lot of > information on Hereditary Pancreatitis. here is the link. > > http://pancreas.org/patients/patients_other_gentesting.html > > also you can find alot of other information on CP at the Hopkins site. > > www.hopkins-gi.org > > I hope these help. > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Rosemary, http://hopkins-gi.org/pages/latin/templates/ Try this. I had tried that link a week or so ago from my favorites list and it was no longer valid. This link should take you to the s Hopkins Medical Institutions Gastroenterology & Hepatology Resource Center. Hope this helps. Jill Re: Rosemary --- Thank you for the info. The 2nd link tho didn't work..I really want to get it done (genetic testing) because I need to know if I have HP for my kids sake and my mom...my mom has been sick so many years and they diagnosed her with AIP (Porphyria) and I have it also, it is a genetic blood disease, but all her pains are treated as the porphyria, she might be having Pancreas pains all this time and never knew!!!! Such a misdianosed disease, huh?? Rosemary In pancreatitis@y..., " SHANNON TUTEN " wrote: > > Hi: > The University of Pittsburgh has its on pancreas web site. iT has a lot of > information on Hereditary Pancreatitis. here is the link. > > http://pancreas.org/patients/patients_other_gentesting.html > > also you can find alot of other information on CP at the Hopkins site. > > www.hopkins-gi.org > > I hope these help. > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 --- Thanks Jill..This one went through! In pancreatitis@y..., " jgecker " wrote: > Rosemary, > > http://hopkins-gi.org/pages/latin/templates/ > > Try this. I had tried that link a week or so ago from my favorites list and it was no longer valid. This link should take you to the s Hopkins Medical Institutions Gastroenterology & Hepatology Resource Center. > > Hope this helps. > > Jill > Re: Rosemary > > > --- > Thank you for the info. The 2nd link tho didn't work..I > really want to get it done (genetic testing) because I need to know > if I have HP for my kids sake and my mom...my mom has been sick so > many years and they diagnosed her with AIP (Porphyria) and I have it > also, it is a genetic blood disease, but all her pains are treated as > the porphyria, she might be having Pancreas pains all this time and > never knew!!!! Such a misdianosed disease, huh?? > Rosemary > > > > > In pancreatitis@y..., " SHANNON TUTEN " wrote: > > > > Hi: > > The University of Pittsburgh has its on pancreas web site. iT has a > lot of > > information on Hereditary Pancreatitis. here is the link. > > > > http://pancreas.org/patients/patients_other_gentesting.html > > > > also you can find alot of other information on CP at the > Hopkins site. > > > > www.hopkins-gi.org > > > > I hope these help. > > > > > > > > > > > > _________________________________________________________________ > > Join the world's largest e-mail service with MSN Hotmail. > > http://www.hotmail.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 --- Thanks Jill..This one went through! In pancreatitis@y..., " jgecker " wrote: > Rosemary, > > http://hopkins-gi.org/pages/latin/templates/ > > Try this. I had tried that link a week or so ago from my favorites list and it was no longer valid. This link should take you to the s Hopkins Medical Institutions Gastroenterology & Hepatology Resource Center. > > Hope this helps. > > Jill > Re: Rosemary > > > --- > Thank you for the info. The 2nd link tho didn't work..I > really want to get it done (genetic testing) because I need to know > if I have HP for my kids sake and my mom...my mom has been sick so > many years and they diagnosed her with AIP (Porphyria) and I have it > also, it is a genetic blood disease, but all her pains are treated as > the porphyria, she might be having Pancreas pains all this time and > never knew!!!! Such a misdianosed disease, huh?? > Rosemary > > > > > In pancreatitis@y..., " SHANNON TUTEN " wrote: > > > > Hi: > > The University of Pittsburgh has its on pancreas web site. iT has a > lot of > > information on Hereditary Pancreatitis. here is the link. > > > > http://pancreas.org/patients/patients_other_gentesting.html > > > > also you can find alot of other information on CP at the > Hopkins site. > > > > www.hopkins-gi.org > > > > I hope these help. > > > > > > > > > > > > _________________________________________________________________ > > Join the world's largest e-mail service with MSN Hotmail. > > http://www.hotmail.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 --- Thanks Jill..This one went through! In pancreatitis@y..., " jgecker " wrote: > Rosemary, > > http://hopkins-gi.org/pages/latin/templates/ > > Try this. I had tried that link a week or so ago from my favorites list and it was no longer valid. This link should take you to the s Hopkins Medical Institutions Gastroenterology & Hepatology Resource Center. > > Hope this helps. > > Jill > Re: Rosemary > > > --- > Thank you for the info. The 2nd link tho didn't work..I > really want to get it done (genetic testing) because I need to know > if I have HP for my kids sake and my mom...my mom has been sick so > many years and they diagnosed her with AIP (Porphyria) and I have it > also, it is a genetic blood disease, but all her pains are treated as > the porphyria, she might be having Pancreas pains all this time and > never knew!!!! Such a misdianosed disease, huh?? > Rosemary > > > > > In pancreatitis@y..., " SHANNON TUTEN " wrote: > > > > Hi: > > The University of Pittsburgh has its on pancreas web site. iT has a > lot of > > information on Hereditary Pancreatitis. here is the link. > > > > http://pancreas.org/patients/patients_other_gentesting.html > > > > also you can find alot of other information on CP at the > Hopkins site. > > > > www.hopkins-gi.org > > > > I hope these help. > > > > > > > > > > > > _________________________________________________________________ > > Join the world's largest e-mail service with MSN Hotmail. > > http://www.hotmail.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Rosemary, You are very welcome! Jill Re: Rosemary > > > --- > Thank you for the info. The 2nd link tho didn't work..I > really want to get it done (genetic testing) because I need to know > if I have HP for my kids sake and my mom...my mom has been sick so > many years and they diagnosed her with AIP (Porphyria) and I have it > also, it is a genetic blood disease, but all her pains are treated as > the porphyria, she might be having Pancreas pains all this time and > never knew!!!! Such a misdianosed disease, huh?? > Rosemary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 You are so sweet.....Spoke to Center today -- her FEV 25/75 dropped significantly. Will repeat in 2 weeks. RN kindof hinted about IV's etc...........blood work.......so the next 2 weeks are important. At least she didn't loose weight! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 Rosemary, Eilish doesn't see herself as sick either. Just before each Christmas we go through their toys and bag them to donate to her ward's play area. She tell's people she's taking them to the sick kid's, which isn't her. So that's good. But I'm sure she will learn how to play on it eventually. Must be early morning there? It's night here. Liam 8 wocf & Eilish 5wcf Re: sinuses She probably caught the cold (viral) in the hospital! My kids have known since we did they have CF. Dylan (5) will say I can't do my Homework I am sick I have CF - I tell him you may have CF but your not sick - go get a pencil!! I tell them just because they have CF doesn't mean they are sick! Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 Rosemary, I've only done it for 2 admissions myself. At first I was so panicky but it's really simple. Eilish does everything except swimming. She has a PICC line which leaves her arms free. She is very active. She still climbs and trampolines etc. You'll be fine. I hope she makes a quick recovery. Liam 8 wocf & Eilish 5wcf Crummy Day-Luck of the Irish Continues Hey went for her follow-up - numbers dropped AGAIN. Tom. we start home IV's - I never did home ones. Any tips? She is so freaked out. Doesn't want me telling anyone. I told my sister and she/husband were pissed at me. xray showed " stuff " a pneumonia if you will. My husband took her (damn) and I am baffled. Tom. I will call Dr. MYSELF. I know she needs the IV 3 x a day, vest 3times... She can go to school - when she isn't so tired. Can she play tennis? Would appreciate any/all advice............. Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 Rosemary, I got my oldest on a waive program this last July it took about 8 months to get them convinced she had a disability but now every three months we have to have someone come to our house and take over our stressful live for one day. The point is it is to give you a break. Well, we used it last night and WOW!! how great it was just to know I didn't have to fight with my girls to do there vest or to do irrigation's on 's nose. They were not on the nebulizer so she really had it easy but boy was it nice to get away and the program is paid by the state. You should look into and see if there is something in your state. YOU DESERVE A BREAK TOO ROSEMARY AND SO DOES EVERYONE ON THIS LIST!! I highly recommend everyone looking into this. They screen the people they take classes on taking care of disable people and check there back round so it is total save to leave them with these guys. Think about it it might save your sanity. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 Grandma Bev, It is a waiver program they help with the bills that our insurance doesn't pay for and you have to use something like someone give you a break or have someone come clean there room from bacteria or counseling. These are some of the choice and you have to use at least one hour in a three month time or you lose the program. So it really makes you take advantage of it. I know there are times I don't think anyone can do the treatments they way it is supposed to be done so it can be hard sometimes so at least this way it makes me use the program. The bad thing is it is hard to make them believe that CF is a disability. I think because has hydrocephalus too is why she was excepted. I still am working on Natalynn to be on it. She has never been hospitalized so they feel she lives a normal live so there is know disability. GO FIGURE!! They have know IDEA! I hope others will be able to get into this program it is such a relieve to know we can have a break. OH and we can use up to 10 hours in a three month period! And they are willing to watch my other two that are not on the program too! So it is really nice. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 What a wonderful program. What is it called in your state(?) ?I am sure you needed that greatly .I hope it was super nice for you.........Even to go & walk around arm free in a mall :) LOVE & HUGS, grandmomBEV Rosemary Rosemary, I got my oldest on a waive program this last July it took about 8 months to get them convinced she had a disability but now every three months we have to have someone come to our house and take over our stressful live for one day. The point is it is to give you a break. Well, we used it last night and WOW!! how great it was just to know I didn't have to fight with my girls to do there vest or to do irrigation's on 's nose. They were not on the nebulizer so she really had it easy but boy was it nice to get away and the program is paid by the state. You should look into and see if there is something in your state. YOU DESERVE A BREAK TOO ROSEMARY AND SO DOES EVERYONE ON THIS LIST!! I highly recommend everyone looking into this. They screen the people they take classes on taking care of disable people and check there back round so it is total save to leave them with these guys. Think about it it might save your sanity. Deb A 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. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 That is super ..Your right too that NO ONE knows the things that are to be done. Even writing a list doesn't seem much to those who haven't had to do it. Even the, the persons feelings your working with . Some kids are hard to get to do treatments & take meds, etc. That isn't on a list of things to do, Parents just do it in love for their child....I am so very happy you have this . I hope others will look into it also. LOVE & HUGS to you !! GrandmomBEV Re: Rosemary Grandma Bev, It is a waiver program they help with the bills that our insurance doesn't pay for and you have to use something like someone give you a break or have someone come clean there room from bacteria or counseling. These are some of the choice and you have to use at least one hour in a three month time or you lose the program. So it really makes you take advantage of it. I know there are times I don't think anyone can do the treatments they way it is supposed to be done so it can be hard sometimes so at least this way it makes me use the program. The bad thing is it is hard to make them believe that CF is a disability. I think because has hydrocephalus too is why she was excepted. I still am working on Natalynn to be on it. She has never been hospitalized so they feel she lives a normal live so there is know disability. GO FIGURE!! They have know IDEA! I hope others will be able to get into this program it is such a relieve to know we can have a break. OH and we can use up to 10 hours in a three month period! And they are willing to watch my other two that are not on the program too! So it is really nice. Deb A 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. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.