Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 This is very informative: http://www.pulmonaryfibrosis.org/patient.pdf Love and Prayers, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hi sweetheart, I feel for you. Hang tight and find another Dr. If there is a teaching Hospital close by go there. keep searching until you find a caring Dr. It will help so very much. Is he on an anti-depressant? You will get answers here. Just ask, someone will help with information. God Bless you... Peggy 09/04 ipf I am so new to all of this. My husband and the love of my life was diagonsed with IPF in May. When I spoke to the doctor he told me that 1/3 can live for 5 years,1/3 can live for 10 years and the other 1/3 need a lung transplant and is treated with heavy doses of steroids. Well my husband is in the last 1/3, and is too old for a lung transplant. We are learning and I am trying to be patient with him. He is getting very demanding which I feel is probably his frustration and anger coming out. Ell is on oxygen 24/7 and tries to keep active. We are noticing dizziness and being very unsteady. Ell's coordination is also getting bad. That is just a couple of things that are happening. I called the doctor and asked for some info or reading material that might help me understand and it is the same old story, " Make an appointment and we can talk " . I do that and I learn absolutely nothing. If anyone can shed some light I would greatly appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 , make you a list of questions. write them down and take them to the dr with you. leave space so you can note the answers as to not forget anything. if the dr refuses to answer your questions in a quality that you see fit,then i would definitely look for a new dr. i had that same problem when i was first diagnosed in Oct, 2005 at age 29. you could always ask questions to us here in the group and we will answer to the best of our knowledge and ability. jaime PF 10-05 > > I am so new to all of this. My husband and the love of my life was > diagonsed with IPF in May. When I spoke to the doctor he told me that > 1/3 can live for 5 years,1/3 can live for 10 years and the other 1/3 > need a lung transplant and is treated with heavy doses of steroids. > Well my husband is in the last 1/3, and is too old for a lung > transplant. We are learning and I am trying to be patient with him. > He is getting very demanding which I feel is probably his frustration > and anger coming out. Ell is on oxygen 24/7 and tries to keep active. > We are noticing dizziness and being very unsteady. Ell's coordination > is also getting bad. That is just a couple of things that are > happening. I called the doctor and asked for some info or reading > material that might help me understand and it is the same old > story, " Make an appointment and we can talk " . I do that and I learn > absolutely nothing. If anyone can shed some light I would greatly > appreciate it. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Thank you I will go there. cacklecathy@... wrote: This is very informative: http://www.pulmonaryfibrosis.org/patient.pdf Love and Prayers, __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Unfortunately we are limited here. To go too much farther away I will have to take time off from work. That sounds selfish but I need to save all my time for the next hospital stint. Peggy wrote: Hi sweetheart, I feel for you. Hang tight and find another Dr. If there is a teaching Hospital close by go there. keep searching until you find a caring Dr. It will help so very much. Is he on an anti-depressant? You will get answers here. Just ask, someone will help with information. God Bless you... Peggy 09/04 ipf I am so new to all of this. My husband and the love of my life was diagonsed with IPF in May. When I spoke to the doctor he told me that 1/3 can live for 5 years,1/3 can live for 10 years and the other 1/3 need a lung transplant and is treated with heavy doses of steroids. Well my husband is in the last 1/3, and is too old for a lung transplant. We are learning and I am trying to be patient with him. He is getting very demanding which I feel is probably his frustration and anger coming out. Ell is on oxygen 24/7 and tries to keep active. We are noticing dizziness and being very unsteady. Ell's coordination is also getting bad. That is just a couple of things that are happening. I called the doctor and asked for some info or reading material that might help me understand and it is the same old story, "Make an appointment and we can talk". I do that and I learn absolutely nothing. If anyone can shed some light I would greatly appreciate it. Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 You are way too young to have this nasty disease. Everyone is!!! I will take your suggestion. I do usually write down questions. Since his disease my memory isn't the best. Too much on the brain. Thanks jaime wrote: ,make you a list of questions. write them down and take them to the dr with you. leave space so you can note the answers as to not forget anything. if the dr refuses to answer your questions in a quality that you see fit,then i would definitely look for a new dr. i had that same problem when i was first diagnosed in Oct, 2005 at age 29. you could always ask questions to us here in the group and we will answer to the best of our knowledge and ability.jaime PF 10-05>> I am so new to all of this. My husband and the love of my life was > diagonsed with IPF in May. When I spoke to the doctor he told me that > 1/3 can live for 5 years,1/3 can live for 10 years and the other 1/3 > need a lung transplant and is treated with heavy doses of steroids. > Well my husband is in the last 1/3, and is too old for a lung > transplant. We are learning and I am trying to be patient with him. > He is getting very demanding which I feel is probably his frustration > and anger coming out. Ell is on oxygen 24/7 and tries to keep active. > We are noticing dizziness and being very unsteady. Ell's coordination > is also getting bad. That is just a couple of things that are > happening. I called the doctor and asked for some info or reading > material that might help me understand and it is the same old > story, "Make an appointment and we can talk". I do that and I learn > absolutely nothing. If anyone can shed some light I would greatly > appreciate it.> > Sneak preview the all-new Yahoo.com. It's not radically different. Just radically better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 , Truth is....you don't know what to expect. Pray for the best, hope for the best and work like crazy to make the years stretch. I am nine years from diagnosis. When oxygen levels are low it impairs your ability to to think, reason, move around, control emotions. Throw in a pile of steroids and you have shakiness, emotional instability, sleeplessness, weakness, etc. So, your poor husband is a wreck. I, too, get frustrated and angry. Spouses get the brunt of all this. My husband, who used to be fairly explosive, is sooooo patient with me. I can be so hateful. I realize it as soon as it happens, but feel too bad to even care sometimes. Being a caregiver is the hardest task. There is a lot of good readig posted on this site. Especially from . Go through his posts and hit on the links. Good reading. We will help you as much as we can. We all need our caregivers. Leanne is working on setting up a place where caregivers can talk and support one another. Hugs, Joyce PF 1997>> I am so new to all of this. My husband and the love of my life was > diagonsed with IPF in May. When I spoke to the doctor he told me that > 1/3 can live for 5 years,1/3 can live for 10 years and the other 1/3 > need a lung transplant and is treated with heavy doses of steroids. > Well my husband is in the last 1/3, and is too old for a lung > transplant. We are learning and I am trying to be patient with him. > He is getting very demanding which I feel is probably his frustration > and anger coming out. Ell is on oxygen 24/7 and tries to keep active. > We are noticing dizziness and being very unsteady. Ell's coordination > is also getting bad. That is just a couple of things that are > happening. I called the doctor and asked for some info or reading > material that might help me understand and it is the same old > story, "Make an appointment and we can talk". I do that and I learn > absolutely nothing. If anyone can shed some light I would greatly > appreciate it.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 , You may have already done this......fill out a FMLA form and turn it into the human rescources/personel dept. at work. This protects your job in the event that you need to take off work to care for him, travel with him for care or take him for medical care. We fill ours out and write in "on an as needed basis". That allows you to take off a day at a time for these chores without being harrassed about it. We have one on file at my husband's work. We update it once a year. It has been a life saver! Hugs, Joyce PF 1997> >> > I am so new to all of this. My husband and the love of my life > was > > diagonsed with IPF in May. When I spoke to the doctor he told me > that > > 1/3 can live for 5 years,1/3 can live for 10 years and the other > 1/3 > > need a lung transplant and is treated with heavy doses of > steroids. > > Well my husband is in the last 1/3, and is too old for a lung > > transplant. We are learning and I am trying to be patient with > him. > > He is getting very demanding which I feel is probably his > frustration > > and anger coming out. Ell is on oxygen 24/7 and tries to keep > active. > > We are noticing dizziness and being very unsteady. Ell's > coordination > > is also getting bad. That is just a couple of things that are > > happening. I called the doctor and asked for some info or reading > > material that might help me understand and it is the same old > > story, "Make an appointment and we can talk". I do that and I > learn > > absolutely nothing. If anyone can shed some light I would greatly > > appreciate it.> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Hey , I am 72 and was dx in oct 05. Am on ox 24/7. Have done some crying and wishing I was not so sick. We have to face the fact that something is going to take us out of this world. This is not something you want to hear. We can't afford not to pray to god and ask for forgiveness of our sins and ask him to welcome us into heaven. As time goes on and you get over the shock. Enjoy every day you have together and do things both of you like. I am in rehab and doc reduced my ox from 3 to 2. I have a lot of things that are going bad. Work with the docs so you can have him around as long as possible. Grey What do I expect? I am so new to all of this. My husband and the love of my life was diagonsed with IPF in May. When I spoke to the doctor he told me that 1/3 can live for 5 years,1/3 can live for 10 years and the other 1/3 need a lung transplant and is treated with heavy doses of steroids. Well my husband is in the last 1/3, and is too old for a lung transplant. We are learning and I am trying to be patient with him. He is getting very demanding which I feel is probably his frustration and anger coming out. Ell is on oxygen 24/7 and tries to keep active. We are noticing dizziness and being very unsteady. Ell's coordination is also getting bad. That is just a couple of things that are happening. I called the doctor and asked for some info or reading material that might help me understand and it is the same old story, "Make an appointment and we can talk". I do that and I learn absolutely nothing. If anyone can shed some light I would greatly appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 thank you for the information Louisecacklecathy@... wrote: This is very informative: http://www.pulmonaryfibrosis.org/patient.pdf Love and Prayers, Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 -- , Thank you for the information Louise - In Breathe-Support , cacklecathy@... wrote: > > This is very informative: > > > _http://www.pulmonaryfibrosis.org/patient.pdf_ > (http://www.pulmonaryfibrosis.org/patient.pdf) > > Love and Prayers, > > Quote Link to comment Share on other sites More sharing options...
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