Heather
Forum Replies Created
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I am so grateful for this forum and all of these posts. We learned yesterday that my husband’s (48, diagnosed in March 2020) IPF has gotten worse and his pulmonologist has suggested he start the process of getting on the transplant list. While I knew this would happen eventually, I honestly thought there would be more time. I had it in my head that there would be some progression that had him go from coughing to being on oxygen to then being listed for transplant. He’s not on oxygen, but the coughing is non-stop and his lung capacity has gotten worse. He’s getting a CT scan next Saturday which will be the first one since getting diagnosed. I assume this will show us exactly how damaged his lungs now are.
I’m sure he’ll follow the doctor’s recommendations. If they say a lung transplant is the way to go, he’ll do it. I just hope he qualifies as he also has short-telomere syndrome. I am so incredibly scared for him and his life expectancy but feel encouraged when I read about all of your experiences. Thank you.
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Hi Terry – What jumped out to me was that your doctor doesn’t seem to be giving you the information you want/need to feel informed about your condition. I would encourage you to have a conversation with your doctor about that. Tell him/her you want to learn more and what level of information you need. If nothing changes perhaps you could find someone who is more willing to listen and spend more time with you. My husband has PF and when she sees his pulmonologist he goes in with a list of questions and comes home with all the numbers (he keeps a spreadsheet). Be your advocate. And stay in touch her. I find this group so helpful.
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My husband is the patient and his cough started a year before his PF diagnosis. It was more of a tickle ana alight throat clearing but it was constant. Now, 2 years later it’s a constant cough. Gaba didn’t help him but he is now taking an off-label anti-depressant (A tri-cyclide but I can’t recall the name.) While it helps, he still coughs all day but not like raging fits as he did between medicines. Fisherman’s Friend cough drops help a bit.
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@jgeigle
Hi James – I’m on the forum here as a spouse of an IPF patient. I have found this to be immensely helpful. As for getting a second opinion, I am on the east coast so can’t really help with anything in-person, but Dr. Cheilonda Johnson at UPenn is amazing and maybe she will do a remote consultation?
https://www.pennmedicine.org/providers/profile/cheilonda-johnson
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Hello Vishal – Thank you for sharing this with us. I’m wishing you, your dad, and entire family well during this difficult time.
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Chiming in on the use of gabapentin. My husband was diagnosed a year ago (at 45), and several months ago he tried gaba to control his cough which has gotten progressively worse. He didn’t feel it was helping, and because he’s not big on taking medications (he takes a lot of pills now- Esbriet, the GERD one, etc.), he tapered off. Now that he’s fully off, we realize that the gabapentin WAS helping. He now coughs non-stop all day long which is interrupting his work and quality of life. The coughing is so bad that his ribs and muscles ache, he has headaches, etc. He’s going to discuss going back on it with his doctor. I just wanted to chime in as this discussion has been very helpful as I tend to do all of the research as it pertains to his care.
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This is timely as my husband – diagnosed in March 2020 – and I haven’t told anyone yet about his diagnosis. We need to though. For one thing, he was diagnosed with a genetic condition called short telomere syndrome which is likely the root cause of his PF (though the docs still call it IPF). We need to tell his sister (who has children) about the genetic condition so she can decide whether or not to get tested for it. As part of that conversation, he would like to tell her about the pulmonary fibrosis. Also, his cough is increasingly difficult to ignore or pass off as allergies.
I would welcome any insights in how to share his diagnosis with friends and family. Thank you.
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Thanks for this information. I am looking into it for my husband. His cough has gotten so bad that he has rib pain. Thank you all for sharing.
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I’d like to help my husband manage his “dry cough” — it was the first indicator that something was wrong. It’s gotten so bad that his co-workers ask/comment on it and he’s not comfortable telling them that he has IPF. I want him to be able to have meetings and phone calls without the persistent cough. I really appreciate all the tips and will be sharing them with him.
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Hi All,
I’m here because my husband was diagnosed with IPF in March 2020, at the age of 45. I’m learning from everyone here. He went on Ofev in March, and it made it him so ill he had to stop taking it (dropped 10 pounds off his already lean frame.) During that time he had no appetite and developed an aversion to eggs. We used to eat eggs at least once a week. He can no longer eat them at all. And he used to drink a lot of milk but no longer wants it. But he still enjoys yogurt. It’s been hit or miss. I’m glad to know he’s not alone in this.
–Heather