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
Colleen, I am doing pretty good. I have my moments and probably will for a long time. But, I have so much to be thankful for and I'm blessed in so many ways. I am glad we moved near family. I have been telling all my friends that they need to be near whoever is going to be their caregiver. I am thankful for the wonderful Hospice team that our son already had in place when we moved. I try to get people to realize Hospice is not like it used to be. They are there to help for however long they are needed. I am making new friends and doing some traveling. God has brought me comfort and peace. Thank you for asking.
Colleen, I am doing pretty good. I have my moments and probably will for a long time. But, I have so much to be thankful for and I'm blessed in so many ways. I am glad we moved near family. I have been telling all my friends that they need to be near whoever is going to be their caregiver. I am thankful for the wonderful Hospice team that our son already had in place when we moved. I try to get people to realize Hospice is not like it used to be. They are there to help for however long they are needed. I am making new friends and doing some traveling. God has brought me comfort and peace. Thank you for asking.
Wreath, what a comfort that you have an excellent Hospice team in place. You're so right that many people are not aware of what hospice is and the services they offer to both the patient, the family caregiver and extended family members.
What aspects of hospice pleasantly surprised you or are you particularly grateful to have that you didn't know they offered?
Wreath, what a comfort that you have an excellent Hospice team in place. You're so right that many people are not aware of what hospice is and the services they offer to both the patient, the family caregiver and extended family members.
What aspects of hospice pleasantly surprised you or are you particularly grateful to have that you didn't know they offered?
Colleen, I didn't realize that Hospice is a whole team of people on each case. My husband had a Dr., nurse, counselor, chaplain, and aides that were available 24-7. All of these people were very caring and became like family. One of his aides even came over on a Sat to help get him dressed for our granddaughter's wedding. Then she actually went to the wedding and reception to care for him so that I could enjoy myself. I have seen so many caregivers worn out, so having a Hospice team was a blessing to me. And the chaplain was able to give my husband some peace in his assurance that because he was a Christian there was no doubt that he would be going to heaven. Then Hospice had trained me on what to do to make him comfortable when his time to leave came. So his passing was peaceful, and I knew he was tired and ready to go. I don't think it would have been that way without Hospice. I think many times people wait too long to contact Hospice. Thanks to his Dr at the Mayo Clinic for suggesting that we get in touch with Hospice before we actually needed them. He was under their care for 8 mons. I was told that you can be under Hospice care for much longer periods of time if needed and your Dr prescribes such care. Hospice also supplied us with every piece of medical equipment I could imagine. Having a hospital bed and wheelchair made a huge difference. I don't know if all Hospice care is the same, but the team we had was awesome.
I have hypersensitivity pneumonitis with fibrosis. I have been improving thru exercise and medication. Is there anyone who has gotten off oxygen after improving?
I don't know if you are still on this forum. I have just been diagnosed with hypersensitivity pneumonitis with fibrosis. Since this is so unusual, I don't know if I can find anyone else with this diagnosis. Are you still on the forum? If so, I would love some information from your case, as I see it is 5 years ago that you posted. Thank you!
Hello. I'm new here. I haven't officially been diagnosed with Pulmonay Fibrosis, but I have worsening breathing issues. I have had worsening exhaled breathing from 2020 after the flu, but I think my lung was damaged from my recalled CPAP machine. I was 47 years old when I started using the Philips CPAP machine and now at 49 years old, my exhaled breathing has been worsening. I had a CT scan and breathing test done in December 2022, but nothing showing. My lung volume is declining, but not abnormal yet. I did get Covid in Sept 2022, which worsned my condition. I don't have a diagnosis yet and getting really frustrated with no answers. Anyone have any idea? I suspect I am developing IPF or some kind of ILD, which scares me, but I really need to know. My breathing problems do not respond to inhalers. Has anyone followed the same history as me or anything similar?
Side note: Has anyone acquired pulmonary fibrosis after using a recalled CPAP machine?
No meds now my dr had put me on cellcept which was shutting down my kidneys within 3 weeks and imuran which made me violently ill throwing up and diarrhea for 6 days so bad I got dehydrated and went to the emergency room for meds to stop throwing up and 3 bags of fluids my doc this past week tried to get me to try them again I refused they both MAYBE will stop progression of fibrosis for a maybe in not willing to take either strong drug with huge side effects I've read a lot about esbret on this thread if I happen to get worse I will ask about this drug although I read also with insurance it's 3000 a month
I have ILD and have been on Cellcept for more than two years with no side effects. My pulmonologist has been reducing my dosage and I am now taking 500 mg a.m. and p.m. Maybe you should give the drug a second chance?
Hello. I'm new here. I haven't officially been diagnosed with Pulmonay Fibrosis, but I have worsening breathing issues. I have had worsening exhaled breathing from 2020 after the flu, but I think my lung was damaged from my recalled CPAP machine. I was 47 years old when I started using the Philips CPAP machine and now at 49 years old, my exhaled breathing has been worsening. I had a CT scan and breathing test done in December 2022, but nothing showing. My lung volume is declining, but not abnormal yet. I did get Covid in Sept 2022, which worsned my condition. I don't have a diagnosis yet and getting really frustrated with no answers. Anyone have any idea? I suspect I am developing IPF or some kind of ILD, which scares me, but I really need to know. My breathing problems do not respond to inhalers. Has anyone followed the same history as me or anything similar?
Side note: Has anyone acquired pulmonary fibrosis after using a recalled CPAP machine?
I was diagnosed in 2020 with ILD. The best advice my outstanding pulmonologist gave me was "walking is super important." I have walked every day since. I am also on Cellcept. My PFTs are normal and I feel fabulous. I may discontinue cellcept by the end of the year. There can be light at the end of the tunnel. Make sure you have a great pulmonologist!
I have IPF. LabCorp cultured my sputem and yesterday evening reported I had a colony or pseudomonas aeruginosa in my lungs. What does this mean? What should I do for myself while waiting for the pulmonologist to weigh in? To protect others? And, in a related question, why do you always learn these things on Saturday night?
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Gail, I was looking through some old posts and was wondering how your husband is doing. And more about how you are doing.
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2 ReactionsHi @wreath, how nice of you to check in with @gailb. I'd like to hear more too.
In the meantime, how are you doing?
Colleen, I am doing pretty good. I have my moments and probably will for a long time. But, I have so much to be thankful for and I'm blessed in so many ways. I am glad we moved near family. I have been telling all my friends that they need to be near whoever is going to be their caregiver. I am thankful for the wonderful Hospice team that our son already had in place when we moved. I try to get people to realize Hospice is not like it used to be. They are there to help for however long they are needed. I am making new friends and doing some traveling. God has brought me comfort and peace. Thank you for asking.
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Helpful -
Hug
1 ReactionWreath, what a comfort that you have an excellent Hospice team in place. You're so right that many people are not aware of what hospice is and the services they offer to both the patient, the family caregiver and extended family members.
What aspects of hospice pleasantly surprised you or are you particularly grateful to have that you didn't know they offered?
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Like -
Helpful -
Hug
1 ReactionColleen, I didn't realize that Hospice is a whole team of people on each case. My husband had a Dr., nurse, counselor, chaplain, and aides that were available 24-7. All of these people were very caring and became like family. One of his aides even came over on a Sat to help get him dressed for our granddaughter's wedding. Then she actually went to the wedding and reception to care for him so that I could enjoy myself. I have seen so many caregivers worn out, so having a Hospice team was a blessing to me. And the chaplain was able to give my husband some peace in his assurance that because he was a Christian there was no doubt that he would be going to heaven. Then Hospice had trained me on what to do to make him comfortable when his time to leave came. So his passing was peaceful, and I knew he was tired and ready to go. I don't think it would have been that way without Hospice. I think many times people wait too long to contact Hospice. Thanks to his Dr at the Mayo Clinic for suggesting that we get in touch with Hospice before we actually needed them. He was under their care for 8 mons. I was told that you can be under Hospice care for much longer periods of time if needed and your Dr prescribes such care. Hospice also supplied us with every piece of medical equipment I could imagine. Having a hospital bed and wheelchair made a huge difference. I don't know if all Hospice care is the same, but the team we had was awesome.
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Like -
Helpful -
Hug
3 ReactionsI don't know if you are still on this forum. I have just been diagnosed with hypersensitivity pneumonitis with fibrosis. Since this is so unusual, I don't know if I can find anyone else with this diagnosis. Are you still on the forum? If so, I would love some information from your case, as I see it is 5 years ago that you posted. Thank you!
Hello. I'm new here. I haven't officially been diagnosed with Pulmonay Fibrosis, but I have worsening breathing issues. I have had worsening exhaled breathing from 2020 after the flu, but I think my lung was damaged from my recalled CPAP machine. I was 47 years old when I started using the Philips CPAP machine and now at 49 years old, my exhaled breathing has been worsening. I had a CT scan and breathing test done in December 2022, but nothing showing. My lung volume is declining, but not abnormal yet. I did get Covid in Sept 2022, which worsned my condition. I don't have a diagnosis yet and getting really frustrated with no answers. Anyone have any idea? I suspect I am developing IPF or some kind of ILD, which scares me, but I really need to know. My breathing problems do not respond to inhalers. Has anyone followed the same history as me or anything similar?
Side note: Has anyone acquired pulmonary fibrosis after using a recalled CPAP machine?
I have ILD and have been on Cellcept for more than two years with no side effects. My pulmonologist has been reducing my dosage and I am now taking 500 mg a.m. and p.m. Maybe you should give the drug a second chance?
I was diagnosed in 2020 with ILD. The best advice my outstanding pulmonologist gave me was "walking is super important." I have walked every day since. I am also on Cellcept. My PFTs are normal and I feel fabulous. I may discontinue cellcept by the end of the year. There can be light at the end of the tunnel. Make sure you have a great pulmonologist!
I have IPF. LabCorp cultured my sputem and yesterday evening reported I had a colony or pseudomonas aeruginosa in my lungs. What does this mean? What should I do for myself while waiting for the pulmonologist to weigh in? To protect others? And, in a related question, why do you always learn these things on Saturday night?