Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Joyce, No Y connector? 10,10,6,6? Puhlleeeeze!!! I'm speechless. Do you mean that you have a liquid 02 reservoir that goes up to 10? Did you decide against the experimental med? On Friday my doctor mentioned two drugs that he wants to read up on for me. They're both scary but he's really wanting to DO something for me. One is a cancer drug called Gleevec. He isn't advocating it yet, and said even if it got to that point, it would be my decision (just like in your case). I'm sure the side effects can be terrible.These kinds of decisions make you old and grumpy before your time. x-[ Irene, I hope you're getting much-needed rest and feeling better. ((((((((Hugs))))))))) Mama Sher, Geeeeeez, all that withholding of information from you makes me want to screeeeeeaaaaaammmmm. To me, this behavior falls under the heading of seriously incompetent, not to mention negligent, discompassionate, arrogant, and totally irresponsible. I've been angry off and on for three and a half years due to poor communications or record-keeping at my transplant center, but at least (I think) my doctor has always been forthright with me in stating what my health status is. He stays frustrated that there isn't more he can do to help me. He's never pretended to have all the answers for the big unknowns, although he vows to keep searching for me. He's never minimized the severity of my disease. If your questions intimidate some people, TOUGH! Don't they know that " If Mama ain't happy, ain't nobody happy! " ? It's a very good move to change doctors! Tammy, You're a star!!! I hope you are very proud of your huge accomplishment. I'll bet you are also going to start feeling better, if you aren't already. , We'll be cheering you on at . Sounds like you'll be there when I'm meeting the transplant folks in San . It does seem like they ought to have 02 for you in one form or another. Jane, It's good that is going to church and things like that. A little exploring is good for the soul as well as for self-confidence. I'm glad you are doing better and staying warm... me, too. Eddie's decency and love for you are obvious in your posts. Lucky girl. Tina, It's a parent's nightmare that was taken to to London clubs at that age. I would have been livid. My daughter Kate was poorly supervised on a college trip to China, and I was horrified. I went to Paris to summer school in Paris for 6 weeks once. It's a wonder any of us grows up, when you consider the stuff that happens to us or that we do when we're young! Leanne and Peggy, The most recent doggie photos from you two didn't come through to me. Fortunately, I've seen photos of your cuties before. They're lucky to be loved so much, and we're lucky to have them! Peggy, the only red and BURNING feeling I ever had in my hand was accompanied by a wart-like rash, which was an allergic reaction to cutting up raw shrimp. It does sound like maybe another dermatologist visit's in order. Do you think you need to see a neurologist? That may be a dumb idea, but I'm stumped. Hope you feel better today. I found out that I'm required to take with me to San Antone the person who will be caring for me post- transplant. My son insists on being that person, whether it's in Dallas or San , for at least two months. He's the best. My sister-in-law and father will also be going with me. will also be here the end of this week for a visit. He'll get to come to the first organizational meeting of the nonprofit I told you guys about. I think it's so cool that he wants to go, plus I love to show him off. :-) Tina, You're a strong woman. I know Kaleb gives you much of your strength, bless his heart. He's a little doll, and he will continue to do just fine because of the type of mother you are. I'm grateful that you have each other. God loves you both. Sandie, I SO apologize if I've forgotten, but was a pulmonologist one of the docs you saw? It just seems like you haven't gotten all the info you deserve, or had the appropriate tests done, by a competent pulmonology physician. I can tell your attitude is better though. That a girl - stay strong. , Thank you GIO. You're always so thoughtful, and I appreciate it. Big hugs from across the pond. Love and blessings, Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Gwynne: Nothing says it better than...thank you....thank you for your well wishes. Good luck to you with the transplant docs in San . My care-person had to go with me to UPMC in Pittsburgh for the whole evaluation process. Actually, it was quite boring for her (daughter ), other than being there to assist me, when needed. They did have one informal meeting where we watched a video and received lots of reading material, but other than that, she didn't really need to be there. I was glad for the company though and we did take in some museums in between appointments. The coordinators emphasized that UPMC was committed to each transplantee having a full-time support person and that it was a requirement of the transplant evaluation. I have learned it is always better to have a second set of ears and someone with a better memory than me! God Bless, Tina IPF 04/07 PH 11/07 Ohio > > thanks Gwynne! > Irene > > ---- Original Message ---- > > To: BREATHE-SUPPORT Information <Breathe-Support > > Sent: Sun, 20 Jan 2008 9:04 pm > Subject: misc. > > > > > > > Joyce, > No Y connector? 10,10,6,6? Puhlleeeeze!!! I'm speechless. > Do you mean that you have a liquid 02 reservoir that goes > up to 10? > Did you decide against the experimental med? On Friday > my doctor mentioned two drugs that he wants to read up > on for me. They're both scary but he's really wanting to > DO something for me. One is a cancer drug called Gleevec. > He isn't advocating it yet, and said even if it got to that > point, it would be my decision (just like in your case). > I'm sure the side effects can be terrible.These kinds of > decisions make you old and grumpy before your time. x-[ > > Irene, > I hope you're getting much-needed rest and feeling > better. ((((((((Hugs))))))))) > > Mama Sher, > Geeeeeez, all that withholding of information from > you makes me want to screeeeeeaaaaaammmmm. > To me, this behavior falls under the heading of seriously > incompetent, not to mention negligent, discompassionate, > arrogant, and totally irresponsible. I've been angry off > and on for three and a half years due to poor > communications or record-keeping at my transplant > center, but at least (I think) my doctor has always been > forthright with me in stating what my health status is. > He stays frustrated that there isn't more he can do to help > me. He's never pretended to have all the answers for > the big unknowns, although he vows to keep searching > for me. He's never minimized the severity of my disease. > If your questions intimidate some people, TOUGH! Don't > they know that " If Mama ain't happy, ain't nobody happy! " ? > It's a very good move to change doctors! > > Tammy, > You're a star!!! I hope you are very proud of your > huge accomplishment. I'll bet you are also going > to start feeling better, if you aren't already. > > , > We'll be cheering you on at . Sounds like you'll > be there when I'm meeting the transplant folks in > San . It does seem like they ought to have 02 > for you in one form or another. > > Jane, > It's good that is going to church and things > like that. A little exploring is good for the soul as > well as for self-confidence. I'm glad you are doing > better and staying warm... me, too. Eddie's decency > and love for you are obvious in your posts. Lucky > girl. > > Tina, > It's a parent's nightmare that was taken to > to London clubs at that age. I would have been > livid. My daughter Kate was poorly supervised on a > college trip to China, and I was horrified. I went to > Paris to summer school in Paris for 6 weeks once. > It's a wonder any of us grows up, when you > consider the stuff that happens to us or that we do > when we're young! > > Leanne and Peggy, > The most recent doggie photos from you two didn't > come through to me. Fortunately, I've seen photos of > your cuties before. They're lucky to be loved so much, > and we're lucky to have them! Peggy, the only red and > BURNING feeling I ever had in my hand was accompanied > by a wart-like rash, which was an allergic reaction to > cutting up raw shrimp. It does sound like maybe another > dermatologist visit's in order. Do you think you need to > see a neurologist? That may be a dumb idea, but I'm > stumped. Hope you feel better today. > > I found out that I'm required to take with me to San > Antone the person who will be caring for me post- > transplant. My son insists on being that person, > whether it's in Dallas or San , for at least > two months. He's the best. My sister-in-law and > father will also be going with me. will > also be here the end of this week for a visit. He'll get > to come to the first organizational meeting of the > nonprofit I told you guys about. I think it's so > cool that he wants to go, plus I love to show him off. :-) > > Tina, > You're a strong woman. I know Kaleb gives you much > of your strength, bless his heart. He's a little doll, and > he will continue to do just fine because of the type of > mother you are. I'm grateful that you have each other. > God loves you both. > > Sandie, > I SO apologize if I've forgotten, but was a pulmonologist > one of the docs you saw? It just seems like you haven't > gotten all the info you deserve, or had the appropriate > tests done, by a competent pulmonology physician. I can > tell your attitude is better though. That a girl - stay strong. > > , > Thank you GIO. You're always so thoughtful, and I > appreciate it. Big hugs from across the pond. > > Love and blessings, > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > > > > > > _____________________________________________________________________ ___ > Meet the new AOL.ca. Free radio, music, videos, news & entertainment ? with a Canadian perspective. > Quote Link to comment Share on other sites More sharing options...
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