Guest guest Posted December 10, 2009 Report Share Posted December 10, 2009 Bill - is talking about a support group that i know nothing about i am talking about the lung transplant support group-- it meets the 2nd monday of the month pre and post transplant people are included it includes all diseases that require a lung transplant because after transplant, the disease becomes the "disease of transplant" it is a physical party i have gone to 2 of them in the Rhoads atrium on the ground floor i have only been to a couple of support group meetings -- 4th floor Penn Tower topics include fundraising for transplants, research in transplantation, medications post transplant, etc i found the medications topic to be extremely interesting, i happen to be taking some of them already the better breathers support group at the local hospital has mostly copd patients, but learning about oxygen equipment and other supplies was informative the people who run it are sensitive to the needs of people with PF and they will try to include our issues when we attend Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Bill from NE PaTo: Breathe-Support Date: Thursday, December 10, 2009, 1:15 AM Bill, BTW..The party is a cyber-space party!The support group from HUP is not for PF but for COPD, etc.My HUP pulmonologist said that they did not have a group for PF.The other group needs totally different information than we do.We have restrictivelung disease...usually without a known cause. They have obstructive lung diseasewith much more known causes...smoking, environmental hazards, etc.They do not use O2in the way we do. Their exercise is different too. Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Paradis3 (AT) aol (DOT) com wrote: No, I'd not heard about a party. I have to go to the dentist anyway. I never hear anything out of HUP except for appointment reminders and bills. Once when I was there one of the doctors gave me a schedule of support meetings for a few months, but I misplaced that. It does sort of look like they'd have a mailing list for stuff like that for their patients. Bill IPF 10/08 NE P.A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2009 Report Share Posted December 10, 2009 Bill, Z and Joyce R., Since all of you go to Penn, do you think since they already have a support group for transplants that one could be started for PF. I know that they have several patients who have PF. Maybe the leader could alternate between PF and transplants so it wouldn't cost them more money. Just a thought. Maybe patients from Temple could be included so there would be a large enough group. We should think about it.Adrienne To: Breathe-Support Sent: Thu, December 10, 2009 8:44:53 AMSubject: Re: Bill from NE Pa Bill - is talking about a support group that i know nothing about i am talking about the lung transplant support group-- it meets the 2nd monday of the month pre and post transplant people are included it includes all diseases that require a lung transplant because after transplant, the disease becomes the "disease of transplant" it is a physical party i have gone to 2 of them in the Rhoads atrium on the ground floor i have only been to a couple of support group meetings -- 4th floor Penn Tower topics include fundraising for transplants, research in transplantation, medications post transplant, etc i found the medications topic to be extremely interesting, i happen to be taking some of them already the better breathers support group at the local hospital has mostly copd patients, but learning about oxygen equipment and other supplies was informative the people who run it are sensitive to the needs of people with PF and they will try to include our issues when we attend Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org No, I'd not heard about a party. I have to go to the dentist anyway. I never hear anything out of HUP except for appointment reminders and bills. Once when I was there one of the doctors gave me a schedule of support meetings for a few months, but I misplaced that. It does sort of look like they'd have a mailing list for stuff like that for their patients. Bill IPF 10/08 NE P.A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2009 Report Share Posted December 10, 2009 great idea i thimk Temple has a support group, they used to, maybe it was for all lung diseases Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Bill from NE PaTo: Breathe-Support Date: Thursday, December 10, 2009, 6:45 PM Bill, Z and Joyce R., Since all of you go to Penn, do you think since they already have a support group for transplants that one could be started for PF. I know that they have several patients who have PF. Maybe the leader could alternate between PF and transplants so it wouldn't cost them more money. Just a thought. Maybe patients from Temple could be included so there would be a large enough group. We should think about it.Adrienne From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, December 10, 2009 8:44:53 AMSubject: Re: Bill from NE Pa Bill - is talking about a support group that i know nothing about i am talking about the lung transplant support group-- it meets the 2nd monday of the month pre and post transplant people are included it includes all diseases that require a lung transplant because after transplant, the disease becomes the "disease of transplant" it is a physical party i have gone to 2 of them in the Rhoads atrium on the ground floor i have only been to a couple of support group meetings -- 4th floor Penn Tower topics include fundraising for transplants, research in transplantation, medications post transplant, etc i found the medications topic to be extremely interesting, i happen to be taking some of them already the better breathers support group at the local hospital has mostly copd patients, but learning about oxygen equipment and other supplies was informative the people who run it are sensitive to the needs of people with PF and they will try to include our issues when we attend Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org No, I'd not heard about a party. I have to go to the dentist anyway. I never hear anything out of HUP except for appointment reminders and bills. Once when I was there one of the doctors gave me a schedule of support meetings for a few months, but I misplaced that. It does sort of look like they'd have a mailing list for stuff like that for their patients. Bill IPF 10/08 NE P.A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2009 Report Share Posted December 11, 2009 Unfortunately the group at Temple which was for PF patients ran out of money so they don't do it anymore. It is so frustrating that folks with our illness don't get the same support at the COPD folks. Oh well. I'm sure we'll come up with something. AB To: Breathe-Support Sent: Thu, December 10, 2009 7:13:58 PMSubject: Re: Bill from NE Pa great idea i thimk Temple has a support group, they used to, maybe it was for all lung diseases Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org No, I'd not heard about a party. I have to go to the dentist anyway. I never hear anything out of HUP except for appointment reminders and bills. Once when I was there one of the doctors gave me a schedule of support meetings for a few months, but I misplaced that. It does sort of look like they'd have a mailing list for stuff like that for their patients. Bill IPF 10/08 NE P.A. Quote Link to comment Share on other sites More sharing options...
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