Pulmonary Fibrosis*

wba3721 You sound exactly like me. All I can say is I understand. I've been like this since 2014. I'm not taking Esbriet or Ofev because I fear the side effects, plus I understand it's very expensive. Nor am I going to Pulmonary Rehab because it's never been mentioned. Does it help you? PLEASE respond. Good luck in your research. cognac

Yes, Pulmonary Rehab helps. Tiring while doing it, but feel much better after. I mainly do the treadmill, ride the bike and do some weights.

I actually look forward to going.

Airlines control the
O2 level on commercial aircrafts.just set the POC a few notches above what. You normally use and you should be ok. I had the same problem so setting the poc to higher setting took care of the problem,

hi, just got back in touch,as I said before I have Pulmonary Fibrosis & now also have pulmonary hypertension. I am 74 & was diagnosed in 2016 with IPF & this last yr.pulmonary hypertension. Am on Esberit ..maybe a year or not but close.I had so many health issues & surgery before the diagnosis which started around 2010 before that a healthy woman. But with the surgery on my feet I got infections & had to have surgery for those plus knee replacement & both shoulder need surgery which I will not have..Was in & out of wheelchair with foot surgeries also & put on to much wt. (need to lose it it wil help with the IPF &PH after all that ...then 2016 The IPF so now have to work hard again because of lung issues. I have one son & 3 grandchildren @ greats too (TWINS) I am blessed but still a little fed up but certainly not giving up..Kathleen....to all of you I wish you peace & to feel better.

Hi. I just wanted to respond to your post as I wanted to let you know that the meds you have listed; I am only familiar with one. My husband was diagnosed in May with IPF and elected to go on Ofev. We finally finished the paperwork and got approved from the manufacturer of Ofev to receive the medicine free of charge. There are many grants that are available to you depending on your income. In our case, we had to go directly to the manufacturer and were qualified. We received the meds and within the first month, my husband was feeling much better and his breathing test increased by a large number. He had the overnight test for oxygen prior to taking the meds and tested positive for needing oxygen during the night. After being on Ofev for a month, he had an additional test and he did not need the meds. While I understand that medicine for one person is not the same for another person. I just wanted to let you know that some meds do work. My husband who could not go out to pick up the paper and be exhausted can not do so many things that he had not been able to do. Ofev may not be the right medicine for you but I would encourage you to try something that will slow the progress of the disease; while it may not be a cure, it can certainly make ones life easier and the quality of life is so important with this disease. I being the wife hate seeing the degradation the disease causes; I also rejoiced at the sight of him feeling so much better and returning to the man I married. With that said, I hope you will give some thought to the medicine that is available to you. Best regards. A loving wife.

My husband has been diagnosed with pulmonary fibrosis. I’m looking for someone who has been treated for that at Mayo.

Hi @ligreen welcome to Connect. That must be awful to hear that diagnosis for you and your husband.

You may have noticed that I moved your post to this pulmonary fibrosis discussion so that you can read past post on pulmonary fibrosis and can connect with others who have PF.

If you call any of this Mayo Clinic webpage http://mayocl.in/1mtmR63 you can find out more about being treated at Mayo.

@llwortman has been treated at Mayo and may be able to offer her experience with doctors at both Mayo Rochester and Mayo Arizona.

@francko @penlee and @keira also have Pulmonary Fibrosis and can sympathize with what you and your husband are going through.

ligreen, where was your husband diagnosed? And how is he doing?

Thank you for your reply! My husband was diagnosed with chronic inflammation and fibrosis at Mercy Hospital in Ft. Smith, AR. They sent his biopsy to Mayo for second opinion & it came back exactly the same. I read on Mayo website that the only meds they mentioned have some BAD possible side effects like liver damage. So it’s scary! His condition is he is not oxygen dependent. Just doesn’t have energy to move around much & no appetite!! We’ve addressed the chronic inflammation by giving up the stressful lifestyle/employment, staying out of the carcinogenic environment that he has spent most of his life in, & changing diet to mostly non-inflammatory foods, & taking anti-inflammatory supplements. It’s only been 2 weeks since his Dr received the 2nd opinion diagnosis from Mayo.

@ligreen Hello. I am sorry to hear of your husband's diagnosis. I do not know a great deal about pulmonary fibrosis except that it is serious and is progressive. I am battling a different lung disease myself. Mine is serious and progressive also, but more easily managed than P.F. I can sympathize with your husband in having a lack of energy. Same here. May I ask what his dr is recommending to him for treatment? Also, will you please tell him that I am thinking of him and wishing him the best. That goes for you too. I know that his diagnosis affects you also. If you need help researching P.F. or have questions, I am here for you and can help look things up.

@windwalker Thank you! I am a constant googler myself & have learned so much about pf since my husbands diagnosis. I knew nothing about it before. I would really like to hear from some who have been treated for pf by Mayo. The side effects of the new meds scare us.