Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 Hi All, I joined the group this week, as someone very close to me was recently diagnosed with PF. The news 'so' new that we don't even know exactly which type of PF it is. We are waiting for more information from the Dr. who has told my loved one that they will be placed on the lung transplant list, for either a single or double transplant.... whichever becomes available first. We have so much to learn... and have started surfing the net looking for information. I started a notebook to keep all the data in including IPF Patient Guide, EOB's, Bills, Diagnosis (don't have yet), etc. I wasn't included in the initial visits to the Dr., but have since told my loved one that they are no longer allowed to be their own advocate. You have to ask questions, and research to know what you're up against, and that wasn't being done. We are also looking into joining a local support group. Thanks for listening.... Kimmie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 Kimmie You may not have known but there is a board for caregivers where you can discuss all the issues with those in the same situation as you. Even though we all deal with the disease, it is different from the patient and caregiver sides. Honestly, I think in many ways being the caregiver is tougher. I'm fortunate enough to know and even to have met a few of the caregivers and I'm sure they would be of tremendous support to you. Here is the link to that forum which is sponsored by the Pulmonary Fibrosis Foundation as well. There are actually three forums they sponsor-one for patients, one for caregivers and one for grief. http://health.groups.yahoo.com/group/Breathe-SupportCaregivers/ > > Hi All, > > I joined the group this week, as someone very close to me was recently diagnosed with PF. > > The news 'so' new that we don't even know exactly which type of PF it is. We are waiting for more information from the Dr. who has told my loved one that they will be placed on the lung transplant list, for either a single or double transplant.... whichever becomes available first. > > We have so much to learn... and have started surfing the net looking for information. I started a notebook to keep all the data in including IPF Patient Guide, EOB's, Bills, Diagnosis (don't have yet), etc. > > I wasn't included in the initial visits to the Dr., but have since told my loved one that they are no longer allowed to be their own advocate. You have to ask questions, and research to know what you're up against, and that wasn't being done. > > We are also looking into joining a local support group. > > Thanks for listening.... Kimmie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 Kimmie You may not have known but there is a board for caregivers where you can discuss all the issues with those in the same situation as you. Even though we all deal with the disease, it is different from the patient and caregiver sides. Honestly, I think in many ways being the caregiver is tougher. I'm fortunate enough to know and even to have met a few of the caregivers and I'm sure they would be of tremendous support to you. Here is the link to that forum which is sponsored by the Pulmonary Fibrosis Foundation as well. There are actually three forums they sponsor-one for patients, one for caregivers and one for grief. http://health.groups.yahoo.com/group/Breathe-SupportCaregivers/ > > Hi All, > > I joined the group this week, as someone very close to me was recently diagnosed with PF. > > The news 'so' new that we don't even know exactly which type of PF it is. We are waiting for more information from the Dr. who has told my loved one that they will be placed on the lung transplant list, for either a single or double transplant.... whichever becomes available first. > > We have so much to learn... and have started surfing the net looking for information. I started a notebook to keep all the data in including IPF Patient Guide, EOB's, Bills, Diagnosis (don't have yet), etc. > > I wasn't included in the initial visits to the Dr., but have since told my loved one that they are no longer allowed to be their own advocate. You have to ask questions, and research to know what you're up against, and that wasn't being done. > > We are also looking into joining a local support group. > > Thanks for listening.... Kimmie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 Kimmie You may not have known but there is a board for caregivers where you can discuss all the issues with those in the same situation as you. Even though we all deal with the disease, it is different from the patient and caregiver sides. Honestly, I think in many ways being the caregiver is tougher. I'm fortunate enough to know and even to have met a few of the caregivers and I'm sure they would be of tremendous support to you. Here is the link to that forum which is sponsored by the Pulmonary Fibrosis Foundation as well. There are actually three forums they sponsor-one for patients, one for caregivers and one for grief. http://health.groups.yahoo.com/group/Breathe-SupportCaregivers/ > > Hi All, > > I joined the group this week, as someone very close to me was recently diagnosed with PF. > > The news 'so' new that we don't even know exactly which type of PF it is. We are waiting for more information from the Dr. who has told my loved one that they will be placed on the lung transplant list, for either a single or double transplant.... whichever becomes available first. > > We have so much to learn... and have started surfing the net looking for information. I started a notebook to keep all the data in including IPF Patient Guide, EOB's, Bills, Diagnosis (don't have yet), etc. > > I wasn't included in the initial visits to the Dr., but have since told my loved one that they are no longer allowed to be their own advocate. You have to ask questions, and research to know what you're up against, and that wasn't being done. > > We are also looking into joining a local support group. > > Thanks for listening.... Kimmie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 Bruce, Thanks for the post. I just redirected her also in a private email. As usual we think along the same lines! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, March 22, 2009 9:03:16 PMSubject: Re: New Member - Kimmie KimmieYou may not have known but there is a board for caregivers where you candiscuss all the issues with those in the same situation as you. Eventhough we all deal with the disease, it is different from the patientand caregiver sides. Honestly, I think in many ways being the caregiveris tougher. I'm fortunate enough to know and even to have met a few ofthe caregivers and I'm sure they would be of tremendous support to you.Here is the link to that forum which is sponsored by the PulmonaryFibrosis Foundation as well. There are actually three forums theysponsor-one for patients, one for caregivers and one for grief.http://health. groups.yahoo. com/group/ Breathe-SupportC aregivers/>> Hi All,>> I joined the group this week, as someone very close to me was recentlydiagnosed with PF.>> The news 'so' new that we don't even know exactly which type of PF itis. We are waiting for more information from the Dr. who has told myloved one that they will be placed on the lung transplant list, foreither a single or double transplant.. .. whichever becomes availablefirst.>> We have so much to learn... and have started surfing the net lookingfor information. I started a notebook to keep all the data in includingIPF Patient Guide, EOB's, Bills, Diagnosis (don't have yet), etc.>> I wasn't included in the initial visits to the Dr., but have sincetold my loved one that they are no longer allowed to be their ownadvocate. You have to ask questions, and research to know what you're upagainst, and that wasn't being done.>> We are also looking into joining a local support group.>> Thanks for listening... . Kimmie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 Bruce, Thanks for the post. I just redirected her also in a private email. As usual we think along the same lines! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, March 22, 2009 9:03:16 PMSubject: Re: New Member - Kimmie KimmieYou may not have known but there is a board for caregivers where you candiscuss all the issues with those in the same situation as you. Eventhough we all deal with the disease, it is different from the patientand caregiver sides. Honestly, I think in many ways being the caregiveris tougher. I'm fortunate enough to know and even to have met a few ofthe caregivers and I'm sure they would be of tremendous support to you.Here is the link to that forum which is sponsored by the PulmonaryFibrosis Foundation as well. There are actually three forums theysponsor-one for patients, one for caregivers and one for grief.http://health. groups.yahoo. com/group/ Breathe-SupportC aregivers/>> Hi All,>> I joined the group this week, as someone very close to me was recentlydiagnosed with PF.>> The news 'so' new that we don't even know exactly which type of PF itis. We are waiting for more information from the Dr. who has told myloved one that they will be placed on the lung transplant list, foreither a single or double transplant.. .. whichever becomes availablefirst.>> We have so much to learn... and have started surfing the net lookingfor information. I started a notebook to keep all the data in includingIPF Patient Guide, EOB's, Bills, Diagnosis (don't have yet), etc.>> I wasn't included in the initial visits to the Dr., but have sincetold my loved one that they are no longer allowed to be their ownadvocate. You have to ask questions, and research to know what you're upagainst, and that wasn't being done.>> We are also looking into joining a local support group.>> Thanks for listening... . Kimmie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 Hi Kimmie, I am so sorry you have to go through with this monster we all face. You are doing the best thing you can possibly do for your loved one. Go with notebook and open ears to all appointments. Get the answers to all the questions you or your patient has. The caregivers site is a good place to gather information and do feel free to e-mail me privately if I can be of help. Sometimes we with the disease can tell you a little more so feel free to ask away.My husband is on the caregivers site and will help if he can. Again I am so sorry this has come into your lives. pac1773@... Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Hi All, I joined the group this week, as someone very close to me was recently diagnosed with PF. The news 'so' new that we don't even know exactly which type of PF it is. We are waiting for more information from the Dr. who has told my loved one that they will be placed on the lung transplant list, for either a single or double transplant.... whichever becomes available first.We have so much to learn... and have started surfing the net looking for information. I started a notebook to keep all the data in including IPF Patient Guide, EOB's, Bills, Diagnosis (don't have yet), etc.I wasn't included in the initial visits to the Dr., but have since told my loved one that they are no longer allowed to be their own advocate. You have to ask questions, and research to know what you're up against, and that wasn't being done.We are also looking into joining a local support group.Thanks for listening.... Kimmie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Thanks Everyone, I'll move over to the Caregivers area. Kimmie Subject: Re: Re: New Member - KimmieTo: Breathe-Support Date: Sunday, March 22, 2009, 9:06 PM Bruce, Thanks for the post. I just redirected her also in a private email. As usual we think along the same lines! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Bruce Moreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 22, 2009 9:03:16 PMSubject: Re: New Member - Kimmie KimmieYou may not have known but there is a board for caregivers where you candiscuss all the issues with those in the same situation as you. Eventhough we all deal with the disease, it is different from the patientand caregiver sides. Honestly, I think in many ways being the caregiveris tougher. I'm fortunate enough to know and even to have met a few ofthe caregivers and I'm sure they would be of tremendous support to you.Here is the link to that forum which is sponsored by the PulmonaryFibrosis Foundation as well. There are actually three forums theysponsor-one for patients, one for caregivers and one for grief.http://health. groups.yahoo. com/group/ Breathe-SupportC aregivers/>> Hi All,>> I joined the group this week, as someone very close to me was recentlydiagnosed with PF.>> The news 'so' new that we don't even know exactly which type of PF itis. We are waiting for more information from the Dr. who has told myloved one that they will be placed on the lung transplant list, foreither a single or double transplant.. .. whichever becomes availablefirst.>> We have so much to learn... and have started surfing the net lookingfor information. I started a notebook to keep all the data in includingIPF Patient Guide, EOB's, Bills, Diagnosis (don't have yet), etc.>> I wasn't included in the initial visits to the Dr., but have sincetold my loved one that they are no longer allowed to be their ownadvocate. You have to ask questions, and research to know what you're upagainst, and that wasn't being done.>> We are also looking into joining a local support group.>> Thanks for listening... . Kimmie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Welcome Kimmie, sorry you and your loved one need us but glad you found us glad you have an organized notebook i keep all of my labs, xrays, pfts, 6 min walks, etc in the notebook i also take a composition book to all doctor appointments to take notes, jerry takes note for me, my notebook is pink or red i take notes for Jerry in his blue notebook when we go to a doctor for him we also make notes in the notebook when something is happening in the house, so we can report it to the docs if necessary i am on the lung transplant list since January i hope your loved one does well with whatever choices he or she makes i am glad that he or she has you for support Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: New Member - KimmieTo: Breathe-Support Date: Sunday, March 22, 2009, 8:44 PM Hi All, I joined the group this week, as someone very close to me was recently diagnosed with PF. The news 'so' new that we don't even know exactly which type of PF it is. We are waiting for more information from the Dr. who has told my loved one that they will be placed on the lung transplant list, for either a single or double transplant.. .. whichever becomes available first.We have so much to learn... and have started surfing the net looking for information. I started a notebook to keep all the data in including IPF Patient Guide, EOB's, Bills, Diagnosis (don't have yet), etc.I wasn't included in the initial visits to the Dr., but have since told my loved one that they are no longer allowed to be their own advocate. You have to ask questions, and research to know what you're up against, and that wasn't being done.We are also looking into joining a local support group.Thanks for listening... . Kimmie 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.