Does anyone know which air purifier is safe and the best one to use with the lung disease. I’m thinking of purchasing one, but I don’t want to purchase one that could do any harm to my lungs. Linda

Cynthia, I am glad you got better news. I saw a relative of mine and she is on oxygen. She has a Phillips Simply Go that she uses when out and about. She felt like its not working for her that good,but she has other issues with her lungs than IPF. The only thing I know about the machine is she left me hold it and I can tell you it is heavier… Read more

Charlene, I under stand what you are saying. They believe my lung disease was caused from an antibiotic used for UTI infections. I was on predisone for 2 months until middle of June. Right now I’m not taking anything. I go see my doctor at KU Med in Kansas City, Ks. at the end of Sept. to see how I’m doing. If I need to be put on a med my… Read more

Why are most of the clinical trials for new drugs to stop fibrsis for people with just ipf? Are there clinical trials being done for new meds for someone that is taking cellcept and predisone for there fibrosis? It seems that the ones you read about are always for the people taking Ofev or Esbriet.

I use 3l oxygen when active. When sitting or sleeping I do not need to use oxygen. At home on 3l oxygen I use continuous, and when I go somewhere I use pulse at 3l. We always enjoyed going gambling twice a year, but one of the closest places is Black Hawk, Colorado that says it is non smoking casinos, as I do not want to go to one that… Read more

Thanks Mark for your in put as I do not want to do anything that could irritate my lungs.

 

 

 

 

 

 

 

 

 

For the people that travel a lot I have a question. When traveling to a place that has a higher elevation  than from where you live ? how do you know how much higher you have to set your oxygen? Also your are not to be around anyone that smokes, so does that mean you can not go into any place  where there could be some people that smoke? I did… Read more

I go to my local pulmonologist which is 10 miles away in hays,ks. But my main pulmomologists that I really trust and feel comfortable with is at KU Medical Center in Kansas City, Kansas which is about 4 hours from where I live.

@tammy-ansley, I am from Victoria,ks. It is a small town about 3 hours west of Topeka. You are the first person that I found on this site from Kansas, that has a lung disease.

 

@drandyhall Is the cold laser therapy for any lung disease? As I am now told I have ILD and if I need any meds, I would be put on cellcept.

@Steve-Dragoo, I’m confused, on one of your posts about WEI products in May you said you might try the products. Your response to my question, I take it that you have taken the WEI products. How long did you take the WEI products for amonth or several months? Did you receive positive results from taking them?

@steve-dragoo, how do you get the wei products? I went to their web site and it says you have to get the products from a practioner.

What are the post op rules?

I was told from a case manager that live expectancy from lung transplant is from 2-5 years. What does anyone that had a transplant know about this?

Does anyone know if the lung scarring is there by the time you are diagnosed. It sais this on the Mayo clinic web site. Is anyone else familiar with this. Also does anyone have discomfort in the middle of their chest especilly when exercising?

 

@katiebagshawe , At what point did your father receive anxiety meds or pain meds like morphine? What level of oxygen was he on when he passed. Also my heart goes out to you for the lose of your father. He was blessed to have a daughter like you.

@Ruth, Did your spouse pass away or do you have the disease?

My throat clearing is during the day, like i have something stuck in my throat. I have some heartburn. I’ve tried allergy meds and did not notice any difference. Any body have suggestions. And could it be part of having this disease.

Denny How do I get in on these trials.  Thanks Linda

How can I get in on trying one of these drugs. Thanks Linda

Dr. Hall, I found a person in Hays,ks. that does cold Laser theraphy. I do not know if this is what you are talking about. I would be interesed in trying it. The name of the place is Stephens Chiropractic and wellness. It is in Hays,ks. They have a website. I would appreaciate it if you could check it out and let me know if this laser… Read more

Steve, Is it the  cold laser  therapy that you are talking about. I found a chiropactor near me that does this. I might give it a try. Do you of other people that had the cold laser therapy and that it helped them.

Steve, Are your doctors ok with you taking these products? What do serrapeptase, Nattokinase and astragalus help with? Some people say the Wei products do not work,and they are very expensive,but do you feel they are working for you.

Charlene Thanks I will try that.

Charlene, I read the post. This helps to know that they can try to keep you comfortable. It helps give you hope. It would be nice if caregivers thats patients had a good experience would share with all of us to help ease our minds. I do not know how you deal with this at such a young age. You must be a very strong person. I admire you for… Read more

Cynthia ( @cynthia-comery-ferguson ) , Are you going to consider a lung transplant? I know this is so new to you like it is to me. How are you dealing with it ? I am not dealing that well with it.It is good to find someone that is new to this like I am.

It did not work. Maybe you could look at my site. I do not know why a message up there that I had submitted. I would like to be able to add more friends as this helps to see what others are going through because this is so new to me.

How do I get my icon back up to request friends. I am new to this and am not to computer savy.

David Ota,  What do you mean by another set of health horrors.

I was never diagnosed with gerd but i have had some heartburn sometimes mild but sometimes severe. For probably 7 years I have had to clear my throat because it feels like something is struck in my throat. Has anyone have experience with this.

This is a topic I am also interested in. I  was diagnosed in April 2019. I am 63 years old. How old are you?

Does anyone feel like if they went to the doctor sooner, they wouldn’t have ended with ipf. If coughing started a once in a while a few weeks before being admitted to hospital. Also had one time of shortness of breath when doing stairs and had chills one day. the more severe shortness of breath was a week to a week and a half of going to… Read more