Marsha
Forum Replies Created
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Charlene-
I am 62 and was diagnosed with IPF in 2018. I understand the feelings you’re having. My PFT’s are severe however I have not been able to complete the test to satisfaction due to incessant cough.
I have been told there is nothing else that can be done for me. I’ve been told that I am not a candidate for lung transplants due to GERD. I wonder if I need to have CT’s and PFT’s and continue all the meds when all I learn is that I’m worse. Stopping these tests and treatments may be a decision we will make on our own. I don’t know about you but almost every question I ask is answered with we don’t know. I feel unsupported, alone and scared. And I agree, I need ell. to be told if the benefits outweigh the risk of these meds and tests at this point. All I am learning is that I’m getting worse.
I am sorry you are going through this as well. I understand the fear and isolation and other emotions with no name! Anger! I hope you may continue to enjoy a good quality of life. I am sorry I cannot help much more than offering empathy. Take care of you.
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Aloha- I am 62 and was diagnosed with IPF in 2018. I have tried both of these methods. Reducing taking OFEV to once a day and using infant liquid Imodium to control symptoms.Both methods have allowed me to travel with much less side effects.
Recently I did fly on an airplane for the first time since I began using O2. My lungs reacted poorly to air travel even while on O2. I needed to stay where I flew to for a few months before I was cleared to fly home. I was never told that this might be an issue. Since I did not know this, maybe others would appreciate this information. Has anyone else had difficulty with air travel? I often feel like I’m the only one experiencing this life altering disease. Thank you!
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Alex-
i was diagnosed with IPF in 2018. I began taking Ofev shortly after diagnosis. I had a Moh’s procedure for basal cell carcinoma on my scalp, 12/2020. I’ve had crazy nerve pain and other unexplained symptoms. The wound has been slow to heal and my scalp is still numb. I get terrible migraines as well.I had no idea that some of this may stem from the Ofev. I’ve also had plenty of skin cancer removed prior to Ofev without incident. Thank you for your post! I will research this. Marsha
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I was diagnosed with IPF in 2018. I was put on prednisone, slow taper, for an acute exacerbation in early 2020. I’m now taking 10 mg per day. I’m 60 and have now been diagnosed with Osteoporosis. The prednisone did improve my breathing a small bit but I’m not convinced this was worth the trade off. If you are taking prednisone, be sure to see an endocrinologist and have bone scans to track your bone health.
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I’m so sorry to hear others also have these painful muscle spasms! Thank you for sharing! Those back spasms sound terrible, they all sound terrible! My muscle spasm feels like it could be related to my diaphragm but I’ve been told that’s not possible. I’m going to ask if what I’m feeling could possibly be nerve related, as was shared with me. I’m told I have a moderate hiatal hernia but I’m again told that would not cause spasms. Clearly the symptoms must be related to the incision site since that’s where I feel the sensation. I think the worst part is always feeling it in some way, numbness, tingling, pressure and heaviness then wondering when the next painful episode will start. I’m going to keep asking questions and I hope I can one day post something that will help others who deal with this strange symptom. I appreciate others sharing their stories with me! Stay well and keep smiling!
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Thank you so much for this heartbreaking, groundbreaking and so important video! We need this on every news station! This message needs to reach everyone. So many people are still putting others at risk daily. I cannot believe the things my eyes see and my heart aches. I’ve had to put a sign on my front door so people will stop dropping by without a mask or social distancing. Right now I’m facing the decision to return to my special education teaching job where children will not be required to wear masks and we teachers are not allowed to social distance because it’s not in our job description. If I was wavering, this awesome and informative video cemented my decision to not return to work presently. Yes, I miss the students, however I’d like to live to teach again. Thank you so very much for such a clear and important message! Very timely and well done!
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John,
Thank you so very much for this excellent and useful video! This is exactly what I need right now and moving forward. You are fortunate to have found such a good resource so quickly. I also utilize the pulmonary wellness/boot camp by Noah Greenspan as Charlene suggested. Also a great resource. My pulmonary function class shut down due to the COVID pandemic so it’s great to have classes and lectures available virtually. Good luck and thanks again for sharing!
Marsha