Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Eileen, Yea she said straight out that her interests take her toward the science side of things and that she does not want to be a doctor who sees paitients for regular care associated with the disease. When I was first told I had ILD in 10/08 I starting seeing her, but for her it was the excitement of trying to find out what I have, like solving a puzzle. But after the VATS in 11/09 and it came back UIP, she is basically not interested in me anymore unless I go on one of the trials. I respect her decision to take her career in the path that she chooses, but I would have liked to have been told in the beginning where her interests lye. And that I really need to see someone else for regular care associated with the disease unless I go on a trial. I though it was a little strange that the last 3 times I seen her since 6/09 that she would never even listen to my lung using the stethiscope. She would go straight to the CT Scan pictures and say " I am still not sure you have IPF - see you in three months " . Bye, Dave > > > > > > > > I think Bruce gave a site to meet people for hobbies, etc.. There is also a site called " Createthegood. org " . You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > > > > It's just another way to get involved with people of similar interests. > > > > Terre, IPF, 6-09, FL > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Eileen Part of center of excellence is their involvement in research and trials and it appears thats the part Miami is interested in. They are a newer center of excellence and not one I would recommend at all based on what I've read here. They appear to pretty much be a one person show and caring for the number of patients in the area would seem impossible. One of the reasons I don't live in South Florida today is concern about medical care. The only field in which I know the University of Miami to be highly rated is Opthalmology. I hope you've found local doctors you do have confidence in while seeing National Jewish for the diagnosis and big picture as you did. > > > > > > > > I think Bruce gave a site to meet people for hobbies, etc.. There is also a site called " Createthegood. org " . You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > > > > It's just another way to get involved with people of similar interests. > > > > Terre, IPF, 6-09, FL > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Dave Yes, I respect her wanting to perhaps find a cure but like you said they need to say that upfront. I have a local pulmo doc in Delray and he is nice but I have learned far more about IPF from this support group than from him. In fact, he got mad when I told him I found this support group and got an oximeter. His major concern is that I lose weight so I can be tested for a lung transplant. Every time I go to his office he checks my weight. He thinks Pulm Rehab is for " older people " who perhaps cannot get a transplant. I sometimes feel like I am going to weight watchers instead of a pulmo. Eileen > > > > > > > > > > I think Bruce gave a site to meet people for hobbies, etc.. There is also a site called " Createthegood. org " . You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > > > > > It's just another way to get involved with people of similar interests. > > > > > Terre, IPF, 6-09, FL > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Hi Bruce Yes, I have researched Miami myself and definitely would not go there for IPF care. My local pulmo also sent me to the Mayo Clinic in ville to their transplant center - they told me I have to lose weight before they would even consider me for transplant. So, for the past year, I have been trying to lose weight. I have lost some - very slowly - but have about 20 more before they will test me and then another 30 before they will list me. I am starting to think that perhaps I should go to Shands or Mayo - not to the transplant center but to the ILD center just to make sure my local pulmo is correct. He basically does nothing except check my weight. Once a year he sends me for a cat scan, twice a year I have the breathing tests and that is it. Eileen 58, IPF/UIP May 07 Boca Raton FL > > > > > > > > > > I think Bruce gave a site to meet people for hobbies, etc.. > There is also a site called " Createthegood. org " . You can meet people > here and help out if you want. You enter your zip code and it brings up > many, many, places and positions for which you can volunteer. > > > > > It's just another way to get involved with people of similar > interests. > > > > > Terre, IPF, 6-09, FL > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Eileen I would definitely go to an ILD center. I wouldn't carry this disease around without having a second opinion and without the best medical oversight I could get. While losing weight is good and thinking ahead to transplant is too if thats something you're pursuing, there's much more than just getting transplant ready. It's making the most of every moment until then. It's also getting every mile out of the first set of lungs you can get. I don't have surgeries without second opinions and I don't have terminal diseases without them. In fact, my doctors are right now pushing me to get another opinion so I'll be well beyond second opinion especially on the rheumatology side. > > > > > > > > > > > > I think Bruce gave a site to meet people for hobbies, etc.. > > There is also a site called " Createthegood. org " . You can meet people > > here and help out if you want. You enter your zip code and it brings up > > many, many, places and positions for which you can volunteer. > > > > > > It's just another way to get involved with people of similar > > interests. > > > > > > Terre, IPF, 6-09, FL > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Eileen, I disagree with your doctor's interpretation of pulmonary rehab it is beneficial and may even be a pre-requisite for lung transplant patients too. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Tue, January 12, 2010 11:26:59 AMSubject: Re: Miami DaveYes, I respect her wanting to perhaps find a cure but like you said they need to say that upfront. I have a local pulmo doc in Delray and he is nice but I have learned far more about IPF from this support group than from him. In fact, he got mad when I told him I found this support group and got an oximeter. His major concern is that I lose weight so I can be tested for a lung transplant. Every time I go to his office he checks my weight. He thinks Pulm Rehab is for "older people" who perhaps cannot get a transplant. I sometimes feel like I am going to weight watchers instead of a pulmo.Eileen> > > > >> > > > > I think Bruce gave a site to meet people for hobbies, etc.. There is also a site called "Createthegood. org". You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > > > > > It's just another way to get involved with people of similar interests..> > > > > Terre, IPF, 6-09, FL> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Eileen, Dr. Raghu at the University of Washington Medical Center says we have to have a BMI of less than 30 to be listed for lung transplant. So, I need to lose weight to reach that goal too. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Tue, January 12, 2010 11:32:38 AMSubject: Re: Miami Hi BruceYes, I have researched Miami myself and definitely would not go there for IPF care. My local pulmo also sent me to the Mayo Clinic in ville to their transplant center - they told me I have to lose weight before they would even consider me for transplant. So, for the past year, I have been trying to lose weight. I have lost some - very slowly - but have about 20 more before they will test me and then another 30 before they will list me. I am starting to think that perhaps I should go to Shands or Mayo - not to the transplant center but to the ILD center just to make sure my local pulmo is correct. He basically does nothing except check my weight. Once a year he sends me for a cat scan, twice a year I have the breathing tests and that is it. Eileen 58, IPF/UIP May 07Boca Raton FL> > > > >> > > > > I think Bruce gave a site to meet people for hobbies, etc..> There is also a site called "Createthegood. org". You can meet people> here and help out if you want. You enter your zip code and it brings up> many, many, places and positions for which you can volunteer.> > > > > It's just another way to get involved with people of similar> interests.> > > > > Terre, IPF, 6-09, FL> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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