[Debbie k]

Hello

I’m also interested in this program. I’m in Illinois. Not sure how the acupuncture would work?

Also could you share a bit of your history ex (age, a bit of your health history)

I’m 73 yrs old and with other health issues.

Also some idea of cost would be wonderful. Retired and on a budget.

Thank you very much for your time!😊

[Debbie k]

Sorry I reread my message and realized I didn’t state which machine I was talking about. The one I was interested in is the DR Burton V pep. That’s the main one I was talking about.

Thank you

[Debbie k]

Hello

Just wanted to share what I was told about the bloating. I too look about 9 months pregnant. But my abdomen isn’t hard. My primary doctor told me it could be extra o2 that I’m not expelling. I’m on O2. 24/7. At 7-8 liters. I’m always bloated and consipated. I’m on pain meds for other reasons which presents another bunch of problems. Blessings to all. 🙏🏻🙏🏻🙏🏻

[Debbie k]

Don’t believe they would do that
Your body would be in almost perfect condition to go through that?

Talk to your Doctors on that subject.

[Debbie k]

May I ask why is he on the ventilator?? I was IPF and have been on Ofev and off. A lot of sign effects and my doc said my lungs are past being helped by the two meds for fibrosis. I have my O2 set at 7 and I cease it for doing things. Not doing much anymore. Interested as to why dad is on ventilator. Hope u can respond.
Thank you

[Debbie k]

<p style=”text-align: right;”>I to have been rejected for transplant at the university of Chicago. My sister also had IPF and was waiting for lungs. Her antibodies were very different and she passed before lungs were available. My health history is extensive which is why I was rejected. Also After talking to several pulmonologist they all said the same thing. There is a reason you were turned down. I was a surgical nurse and did transplants. Please make sure to are fully informed of the post-op procedures. Recovery is very hard. Fatally rate is 50%. Rejection is also high. I chose to live my life as I am. I am pretty far along with my illness. I also didn’t feel I would be able to make it through the surgery and or the recovery. I’m 72 and not healthy.   I wish u all the best and pray things work out for you. Blessings to all. </p>

[Debbie k]

<p style=”text-align: right;”>I to have been rejected for transplant at the university of Chicago. My sister also had IPF and was waiting for lungs. Her antibodies were very different and she passed before lungs were available. My health history is extensive which is why I was rejected. Also Alfred talking to several pulmonologist they all said the same thing. There is a reason you were turned down. I was a surgical nurse and did transplants. Please make sure to are fully informed of the post-op procedures. Recovery is very hard. Fatally rate is 50%. Rejection is also high. I chose to live my life as I am. I am pretty far along with my illness. I also didn’t feel I would be able to make it through the surgery and or the recovery. I’m 72 and not healthy.   I wish u all the best and pray things work out for you. Blessings to all. </p>

[Debbie k]

<p style=”text-align: right;”>I to have been rejected for transplant at the university of Chicago. My sister also had IPF and was waiting for lungs. Her antibodies were very different and she passed before lungs were available. My health history is extensive which is why I was rejected. Also Alfred talking to several pulmonologist they all said the same thing. There is a reason you were turned down. I was a surgical nurse and did transplants. Please make sure to are fully informed of the post-op procedures. Recovery is very hard. Fatally rate is 50%. Rejection is also high. I chose to live my life as I am. I am pretty far along with my illness. I also didn’t feel I would be able to make it through the surgery and or the recovery. I’m 72 and not healthy.   I wish u all the best and pray things work out for you. Blessings to all. </p>

[Debbie k]

Hi I have had two exacerbation  and with each my O2 level has increased. I’m now at 6 or 7. Talk to you pulmonologist and cardiologist. U need to be evaluated. I also had pneumonia with each exacerbation and things got worse.   Also I can’t remember exactly but my pulmonologist explained that my carbon monoxide can’t be exhaled which causes difficulty with breathing   Good luck and God bless. I lost my sis to PF. It’s a horrible disease. 🙏🏻🙏🏻

[Debbie k]

Hi Carol

May I ask your age age what stage u r at?? I had considered it. But I don’t have a good support system to get me there. I’m not sure I have enough of energy at this point to get through the testing. I was all setup for the testing and changed my mind. Of course now I’m questioning my decision. I’m 73 and was rejected for transplant. My age and health history made me a bad candidate. So I’m very happy with my current pulmonologist. I think I’ve waited to long for changes to my treatments. Have been on two meds and had to be taken off. My side effects were so bad I was admitted twice almost didn’t make it.

Any info would be appreciated.

Thank u Debbie

[Debbie k]

Hi Dawn. My name is Debbie. Just wondering what you mean by pulmonary therapy? I tried pulmonary rehab and failed. I can’t walk more then 10-15 ft and I’m not breathing well

I’ve been on Ofev for 1 1/2 years had to get off I had every side effect that was posted plus some very odd ones I was dealing with ulcers all over and ended up needing grafts and wound treatments for months it was horrible also explosive diarrhea 3-4 times a day Again horrible none of the medication helped me enough So my doctor said no more I was so weak He felt I couldn’t try anything in the shape I was in Asked about the other drug and he didn’t think my body could tolerate any more I have a lot of other medical problems

Anyway do u know of a O2 concentrator

that goes to 15 L I only know up to 10 I’m already at 8 or 9 was told that 10 was it

U responded to someone to go up to 15L

If that machine is available I would love to inquire about it Maybe where u live they have different things I’m in a suburb of Chicago

Sorry this message is all over Not sure why and don’t know how to fix 😊

TIA if u can help me

[Debbie k]

Could you let us know where you found this item. Very interested. I’ve tried a few and didn’t do much for me. Willing to try one more. Don’t have much of a cough and no mucous. It’s kind of strange that I don’t. I’m going on year four and no to many symptoms. I’m getting off of steroids. I think that’s making me feel better! My problem is I’m very fatigued and fall asleep all the time. Sleep most of the day and most of the night. My O 2 is at 8. That also presents a problem when I go out. Still trying to use the inogen portable. It only goes to 6. So I struggle with that. My other option is tanks but bc I’m so high I would need many tanks. Almost impossible to navigate with all that. If anyone has that problem please let me know what u do. I’m not ready to just sit in my home. I’m kind of confused as to what I can do. Even at 8 when I get up I don’t last long. Tried rehab and couldn’t do it.

Can’t really walk much bc my breathing gets so bad and my level drops to 80 which I have to stop and recoup.

Please let me know if anyone has those same problems and if they have solutions.

Thanks so much. Hope I heard from someone!! Have a good day 😊

[Debbie k]

Denny

hi I have one questions for u please. How were u diagnosed with pneumonia?? Thank you. My pulmonologist said I have a constant infection. Thinking that’s the same thing??
I meant pneumonitis. Sorry

[Debbie k]

Denny

hi I have one questions for u please. How were u diagnosed with pneumonia?? Thank you. My pulmonologist said I have a constant infection. Thinking that’s the same thing??

[Debbie k]

Hello Cheryl

Glad you’re doing well. I’m in my 5th year with PF. I was misdiagnosed for the first two yrs. Long story. I also have emphysema. But was told my main problem is the PF. Just wanted to ask you the drug too going to take I’ve not heard of is it a newer one. I was on Ofev but had too many side effects and I’m taking a break. I developed skin ulcers often and they weren’t healing. After 5 months they are healed. I’m deciding if I want to try the other drug. Would like to hear about the drug you’re going to try. I had a lot of other side effects also. I had to get off. I’m concerned if the other drugs will be the same way. If u have any info on your drug. I would love to hear. Thank you and Good Luck. Blessings to you.