My husband 61, was diagnosed with IPF in November of 2011, he is deteriorating very quickly, a set of lungs is his only hope. We have been turned down my Tampa General and Jackson Miami Hospital. He has to be an "otherwise Healthy being" the first dr we had did nothing, and now I find the issues he has are related to the IPF and disqualify him for lungs. I am desperate, I want him to live.....on and off of steroids and xanax, spent a week in hospital three weeks ago for respiratory failure. Anything anyone knows of to help, please send me info....
I am so sorry you two are going through this!! We are just in the beginning and the future does not look so great. What can I say, except that I too care for you.
Thank you again. Mayo said they will try to get him in for a PCP since he has so many issues. hoping/praying. My daughter just sent me these two links also, just in case.
We are waiting for the VA to decide if they will get him the medicine, but it takes two months to get an appointment. Is there anything he can take during that time to slow the scarring? Just vitamins? or any other medicine?
We are waiting for the VA to decide if they will get him the medicine, but it takes two months to get an appointment. Is there anything he can take during that time to slow the scarring? Just vitamins? or any other medicine?
Sadly, there is nothing that one can take. There is a lot of snake oil promises out there too. So be careful and not waste your money on those. There are only the two meds approved for treatment of pulmonary fibrosis. And as you have found out they are very expensive. My husband had very good insurance and was able to try both treatments. Unfortunately they didn't help him and the side effects were so terrible for him that he decided he had rather have some quality of life than quantity. We explored every avenue possible. Even was granted an interview for a possible lung transplant. But was denied because of his age,75, and other health issues. So, he said "It is what it is" and lived out his last days doing what he enjoyed and preparing me for life without him. For that I am thankful. I hope I don't sound too harsh, and every case is different. Just enjoy whatever time you have left together and never give up hope. But try to be realistic also. May God be with you on your journey.
Sadly, there is nothing that one can take. There is a lot of snake oil promises out there too. So be careful and not waste your money on those. There are only the two meds approved for treatment of pulmonary fibrosis. And as you have found out they are very expensive. My husband had very good insurance and was able to try both treatments. Unfortunately they didn't help him and the side effects were so terrible for him that he decided he had rather have some quality of life than quantity. We explored every avenue possible. Even was granted an interview for a possible lung transplant. But was denied because of his age,75, and other health issues. So, he said "It is what it is" and lived out his last days doing what he enjoyed and preparing me for life without him. For that I am thankful. I hope I don't sound too harsh, and every case is different. Just enjoy whatever time you have left together and never give up hope. But try to be realistic also. May God be with you on your journey.
I do try to be realistic. Mine is also 75 and not in good health, with diabetes and a kidney transplant 3 years ago. He does not yet know that this is not a cure. I've told him but it is not registering. He's only been diagnosed a little over a month ago. But, we have to go through every possible route. The VA doctor is prescribing him Esbriet and she said she has many patients doing pretty well with it. We are trying to enjoy every day and be cheerful. What did you plan to do when he was gone? I don't want to live with my children, although the girls have offered. I have 11 grown children now. Will you please tell me your story so I can learn from it? thank you.
I do try to be realistic. Mine is also 75 and not in good health, with diabetes and a kidney transplant 3 years ago. He does not yet know that this is not a cure. I've told him but it is not registering. He's only been diagnosed a little over a month ago. But, we have to go through every possible route. The VA doctor is prescribing him Esbriet and she said she has many patients doing pretty well with it. We are trying to enjoy every day and be cheerful. What did you plan to do when he was gone? I don't want to live with my children, although the girls have offered. I have 11 grown children now. Will you please tell me your story so I can learn from it? thank you.
Mary, I will be happy to share with you the seven year journey after my husband was diagnosed with pulmonary fibrosis. He felt like he had it way before then because he was always easily winded. We went to the Mayo Clinic in Jacksonville to get his acid reflux fixed. It was there that the Drs confirmed what his pulmonary Dr in Georgia had already suspected. They think that his acid reflux was probably a contributing factor. Also, he had two uncles to die with the same thing years ago. So, we traveled to the Mayo Clinic every six months to monitor his progress. They really didn't offer him any kind of treatment at first because there wasn't any. The first medication was just coming on the market and his Dr was reluctant to prescribe it because of the terrible side effects. His care was more of a preventive treatment because he easily caught everything. And every time he got any type of infection it was a set back. And you never recover back to where you were. He did pretty good for several years. Then as his breathing declined, he was on oxygen at night or as needed. He got a portable oxygen concentrator and we made several trips. But he often would tell me his breathing was getting worse. And as his need for oxygen increased, we had to get the tanks and a large concentrator for home. At that time, I started to think about what we needed to do. And when the Dr at the Mayo told me I was going to need some help and that we needed to get in touch with a good Hospice program, I suggested that we sell our home and move close to our son. He is the director at a senior living home and I felt like he would have all the contacts we were going to need. So, that's what we did and I am so thankful with God's help everything just fell into place. We had eight months in the house our son found for us to rent. I am now currently building a small pool house in my son's back yard and hopefully that's where I will be.
I would love to talk to you and anyone else. I did join a group on line called Inspire. The pulmonary fibrosis group was most helpful. I know you probably have a lot of questions. I would love to hear from you.
Thank you, but I don't know how to even ask them. My husband does not know this is as serious as it is, and I am not strong enough to tell him. We are only on Social Security, and our kids would help but they are not wealthy. What do the others in this link do? Are they all wealthy?
My husband also has IPF, and our situation is similar to yours financially. He has applied for VA benefits and has a lawyer working on it. Since your post is 6 months ago, were you able to apply for VA benefits?
My husband's IPF has suddenly gotten worse. His cough sounds as if he's full of liquid now and he uses oxygen all the time. He's had it probably since 2018 when he discovered he couldn't snorkel anymore. His cough started in 2019, but he was OK until our last 6 week visit to Hawaii in November, 2021. He started being short of breath then. His pulmonologist put him on oxygen when we got home. He's no longer able to walk with me, and his cough now sounds like he's drowning because of fluid. He opted out of taking the meds that prolong life due to side effects. He never complains ad says he's not in pain.
Why doesn't your husband know how bad his disease is? Personally, I think that's a mistake. My husband and I talk about his wishes for end of life, and we've had a family meeting to let everyone know what's happening. It has allowed my husband to work on projects that are meaningful to him so he can leave a heritage to his children, stepson, and grandchildren. Our granddaughter is making videos where she interviews him every 2 weeks or so. She's an actor and is very attentive to his needs. He's working on family genealogy and has about 1500 family ancestors recorded now. By allowing him and others to know his situation, everyone has the opportunity to visit him, including former employees, and let him know how much they love him and share the positive difference he's made in their lives. Closure is very important.
I am getting personal counseling plus I attend a Caregiver Group and a Senior Counseling Group. We've been married 40 years and are still in love. Spending time going down memory lane reviewing the many adventures we've had has been so wonderful. I cry when I need to, and then we talk about my future. Only by being honest and transparent about his disease can we do these things.
I don't know your situation, but if possible I encourage you to share his information with him, and then with family if he agrees. Ask the doctor to share the prognosis of his disease with him with you there for support. GailB
Sadly, there is nothing that one can take. There is a lot of snake oil promises out there too. So be careful and not waste your money on those. There are only the two meds approved for treatment of pulmonary fibrosis. And as you have found out they are very expensive. My husband had very good insurance and was able to try both treatments. Unfortunately they didn't help him and the side effects were so terrible for him that he decided he had rather have some quality of life than quantity. We explored every avenue possible. Even was granted an interview for a possible lung transplant. But was denied because of his age,75, and other health issues. So, he said "It is what it is" and lived out his last days doing what he enjoyed and preparing me for life without him. For that I am thankful. I hope I don't sound too harsh, and every case is different. Just enjoy whatever time you have left together and never give up hope. But try to be realistic also. May God be with you on your journey.
My husband is 76 and has IPF. He has done well for 2 years after his diagnosis, until last November. He suddenly got worse and was immediately put on an oxygen concentrator at night and portable oxygen as needed. 4 1/2 months later and he's on oxygen all the time and can no longer take walks with me or go to the grocery store. A couple of weeks ago his cough got much worse and sounds like there's a ton of fluid he's trying to cough up.
He also turned down the medication due to the side effects, not to mention the cost. His statement was the same as your husband's; "It is what it is." We now spend time walking through our memories of 40 years of love and life together. He's working on legacy projects for the kids and grandchildren. We became great grandparents last November. We're working on his end of life arrangements and Palliative Care for both of us. I'm in counseling, support groups, and physical therapy in preparation for living without him. I'm grateful for our time together.
How long did your husband live after he was at the point mine is? I have the feeling that he won't last as long as I hoped at first. He's going to end his life when it becomes too difficult. He's not in pain, just drowning. Thanks for posting your experiences on Mayo Connect. GailB
My husband is 76 and has IPF. He has done well for 2 years after his diagnosis, until last November. He suddenly got worse and was immediately put on an oxygen concentrator at night and portable oxygen as needed. 4 1/2 months later and he's on oxygen all the time and can no longer take walks with me or go to the grocery store. A couple of weeks ago his cough got much worse and sounds like there's a ton of fluid he's trying to cough up.
He also turned down the medication due to the side effects, not to mention the cost. His statement was the same as your husband's; "It is what it is." We now spend time walking through our memories of 40 years of love and life together. He's working on legacy projects for the kids and grandchildren. We became great grandparents last November. We're working on his end of life arrangements and Palliative Care for both of us. I'm in counseling, support groups, and physical therapy in preparation for living without him. I'm grateful for our time together.
How long did your husband live after he was at the point mine is? I have the feeling that he won't last as long as I hoped at first. He's going to end his life when it becomes too difficult. He's not in pain, just drowning. Thanks for posting your experiences on Mayo Connect. GailB
Gail, I am so sorry that you are going through exactly what I went through. Once the Dr told me I was going to need some help, we moved close to our son. He arranged for Hospice care which was wonderful. My husband was still walking some when we moved, but his oxygen need continued to increase. So Hospice provided him a wheelchair which was a big help in reserving his oxygen. He did pretty good for several months. We did exactly what y'all are doing. I went ahead and made funeral arrangements for both of us. He laughed and said it cost to Damn much. He told me everything I need to know about our finances and insurance policies. All that sure made my life easier after he was gone. He lasted 8 mons after our move. Hospice had prepared me to be able to make him comfortable. His death was quiet and very peaceful. He watched football games on New Years Day with the family. He said I'm ready to go to bed. We had noticed all day his oxygen level was dropping and no matter how much I increased it there was no getting it back. I was so afraid that he was going to be fighting and struggling to breathe, but he just simply went to sleep. I couldn't have asked for a passage into the next life to be any better. It sounds like y'all are doing all the right things. Will keep you in my prayers.
My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
@alexander , Just a note. I went to Mayo in Phoenix 6 years ago. They put in my record: "Your Fibrosis is getting worse rather rapidly." Interesting, because I have never actually been diagnosed with any kind of Fibrosis, especially Pulmonary. That came later, A YEAR AFTER the Mayo trip, and before I actually read the Mayo scrap. oldkarl
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I am so sorry you two are going through this!! We are just in the beginning and the future does not look so great. What can I say, except that I too care for you.
update: today we took his prescription to the VA and they are looking into it. HIs VA doctor really cares for his patients so we are hoping.
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1 ReactionWe are waiting for the VA to decide if they will get him the medicine, but it takes two months to get an appointment. Is there anything he can take during that time to slow the scarring? Just vitamins? or any other medicine?
Sadly, there is nothing that one can take. There is a lot of snake oil promises out there too. So be careful and not waste your money on those. There are only the two meds approved for treatment of pulmonary fibrosis. And as you have found out they are very expensive. My husband had very good insurance and was able to try both treatments. Unfortunately they didn't help him and the side effects were so terrible for him that he decided he had rather have some quality of life than quantity. We explored every avenue possible. Even was granted an interview for a possible lung transplant. But was denied because of his age,75, and other health issues. So, he said "It is what it is" and lived out his last days doing what he enjoyed and preparing me for life without him. For that I am thankful. I hope I don't sound too harsh, and every case is different. Just enjoy whatever time you have left together and never give up hope. But try to be realistic also. May God be with you on your journey.
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2 ReactionsI do try to be realistic. Mine is also 75 and not in good health, with diabetes and a kidney transplant 3 years ago. He does not yet know that this is not a cure. I've told him but it is not registering. He's only been diagnosed a little over a month ago. But, we have to go through every possible route. The VA doctor is prescribing him Esbriet and she said she has many patients doing pretty well with it. We are trying to enjoy every day and be cheerful. What did you plan to do when he was gone? I don't want to live with my children, although the girls have offered. I have 11 grown children now. Will you please tell me your story so I can learn from it? thank you.
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Helpful -
Hug
2 ReactionsMary, I will be happy to share with you the seven year journey after my husband was diagnosed with pulmonary fibrosis. He felt like he had it way before then because he was always easily winded. We went to the Mayo Clinic in Jacksonville to get his acid reflux fixed. It was there that the Drs confirmed what his pulmonary Dr in Georgia had already suspected. They think that his acid reflux was probably a contributing factor. Also, he had two uncles to die with the same thing years ago. So, we traveled to the Mayo Clinic every six months to monitor his progress. They really didn't offer him any kind of treatment at first because there wasn't any. The first medication was just coming on the market and his Dr was reluctant to prescribe it because of the terrible side effects. His care was more of a preventive treatment because he easily caught everything. And every time he got any type of infection it was a set back. And you never recover back to where you were. He did pretty good for several years. Then as his breathing declined, he was on oxygen at night or as needed. He got a portable oxygen concentrator and we made several trips. But he often would tell me his breathing was getting worse. And as his need for oxygen increased, we had to get the tanks and a large concentrator for home. At that time, I started to think about what we needed to do. And when the Dr at the Mayo told me I was going to need some help and that we needed to get in touch with a good Hospice program, I suggested that we sell our home and move close to our son. He is the director at a senior living home and I felt like he would have all the contacts we were going to need. So, that's what we did and I am so thankful with God's help everything just fell into place. We had eight months in the house our son found for us to rent. I am now currently building a small pool house in my son's back yard and hopefully that's where I will be.
I would love to talk to you and anyone else. I did join a group on line called Inspire. The pulmonary fibrosis group was most helpful. I know you probably have a lot of questions. I would love to hear from you.
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Helpful -
Hug
3 ReactionsMy husband also has IPF, and our situation is similar to yours financially. He has applied for VA benefits and has a lawyer working on it. Since your post is 6 months ago, were you able to apply for VA benefits?
My husband's IPF has suddenly gotten worse. His cough sounds as if he's full of liquid now and he uses oxygen all the time. He's had it probably since 2018 when he discovered he couldn't snorkel anymore. His cough started in 2019, but he was OK until our last 6 week visit to Hawaii in November, 2021. He started being short of breath then. His pulmonologist put him on oxygen when we got home. He's no longer able to walk with me, and his cough now sounds like he's drowning because of fluid. He opted out of taking the meds that prolong life due to side effects. He never complains ad says he's not in pain.
Why doesn't your husband know how bad his disease is? Personally, I think that's a mistake. My husband and I talk about his wishes for end of life, and we've had a family meeting to let everyone know what's happening. It has allowed my husband to work on projects that are meaningful to him so he can leave a heritage to his children, stepson, and grandchildren. Our granddaughter is making videos where she interviews him every 2 weeks or so. She's an actor and is very attentive to his needs. He's working on family genealogy and has about 1500 family ancestors recorded now. By allowing him and others to know his situation, everyone has the opportunity to visit him, including former employees, and let him know how much they love him and share the positive difference he's made in their lives. Closure is very important.
I am getting personal counseling plus I attend a Caregiver Group and a Senior Counseling Group. We've been married 40 years and are still in love. Spending time going down memory lane reviewing the many adventures we've had has been so wonderful. I cry when I need to, and then we talk about my future. Only by being honest and transparent about his disease can we do these things.
I don't know your situation, but if possible I encourage you to share his information with him, and then with family if he agrees. Ask the doctor to share the prognosis of his disease with him with you there for support. GailB
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2 ReactionsMy husband is 76 and has IPF. He has done well for 2 years after his diagnosis, until last November. He suddenly got worse and was immediately put on an oxygen concentrator at night and portable oxygen as needed. 4 1/2 months later and he's on oxygen all the time and can no longer take walks with me or go to the grocery store. A couple of weeks ago his cough got much worse and sounds like there's a ton of fluid he's trying to cough up.
He also turned down the medication due to the side effects, not to mention the cost. His statement was the same as your husband's; "It is what it is." We now spend time walking through our memories of 40 years of love and life together. He's working on legacy projects for the kids and grandchildren. We became great grandparents last November. We're working on his end of life arrangements and Palliative Care for both of us. I'm in counseling, support groups, and physical therapy in preparation for living without him. I'm grateful for our time together.
How long did your husband live after he was at the point mine is? I have the feeling that he won't last as long as I hoped at first. He's going to end his life when it becomes too difficult. He's not in pain, just drowning. Thanks for posting your experiences on Mayo Connect. GailB
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Helpful -
Hug
1 ReactionGail, I am so sorry that you are going through exactly what I went through. Once the Dr told me I was going to need some help, we moved close to our son. He arranged for Hospice care which was wonderful. My husband was still walking some when we moved, but his oxygen need continued to increase. So Hospice provided him a wheelchair which was a big help in reserving his oxygen. He did pretty good for several months. We did exactly what y'all are doing. I went ahead and made funeral arrangements for both of us. He laughed and said it cost to Damn much. He told me everything I need to know about our finances and insurance policies. All that sure made my life easier after he was gone. He lasted 8 mons after our move. Hospice had prepared me to be able to make him comfortable. His death was quiet and very peaceful. He watched football games on New Years Day with the family. He said I'm ready to go to bed. We had noticed all day his oxygen level was dropping and no matter how much I increased it there was no getting it back. I was so afraid that he was going to be fighting and struggling to breathe, but he just simply went to sleep. I couldn't have asked for a passage into the next life to be any better. It sounds like y'all are doing all the right things. Will keep you in my prayers.
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Helpful -
Hug
3 Reactions@alexander , Just a note. I went to Mayo in Phoenix 6 years ago. They put in my record: "Your Fibrosis is getting worse rather rapidly." Interesting, because I have never actually been diagnosed with any kind of Fibrosis, especially Pulmonary. That came later, A YEAR AFTER the Mayo trip, and before I actually read the Mayo scrap. oldkarl