Thanks Charles, that is encouraging..

God bless

Thanks a lot Dave for sharing your transplant story. It is encouraging. I am 71 and soon will be listed for a single lung transplant at UCSF. The coughing issue continuing after the transplant was concerning to me. If it is temporary until the IPF infected lung times out, it is ok I guess. Is the cough as bad as before LT? Do u take medication… Read more

Hi Herold, I am glad that you are doing great with a single lung transplant.  I have IPF and I am going for a transplant. I was told that patient above 65 are given a single lung transplant. My worry was that the IPF affected other lung may progress and give the same coughing and shortness of breath symptoms. Looks like you are experiencing… Read more

Thanks John for sharing your experience.
My IPF is even more aggressive. I went from normal to requiring oxygen 24 hours in a matter of 8-9 months. I started OFEV 3 months ago and have not seen any improvement or stability.  I am hoping the laser therapy may bring some stability.
Tomorrow is my first appointment for laser therapy. Let us see… Read more

Very nice Jack! Do you have any updates?
I was hoping new updates in 2022. As I am planning to start this therapy. I am still searching for one that can do this in the Sanfran Bay Area.
thanks
kris

Thanks Christie for that great information.
I also read your column about your mothers journey..Absolutely amazing. Thanks for sharing such valuable information. God bless
kris

Hi Jeff thanks for sharing valuable information. Are you still continuing with Plavix with Ofev? Is it working for you?

I am going to have stent put in this week and will be on Plavix along with Ofev. So would like to know your experience.
thanks

kris

Hi Dr. Don thanks for sharing your experience with Ofev. I am curious about Metformin. Did you take it for  diabetes?

how did that help with your PFT? Is it by controlling the blood sugar level?
thanks

kris

I forgot to check the notify button☹️

Hi Patti,

if your mom has Medicare the health provider will automatically arrange for one. May be she is not in Medicare I guess. I have a portable pulse oxygen concentrator made by Inogen.. it has 4 hour rechargeable battery,

I have a bigger noisy one that plugs in to the wall outlet, but has a long tube that is 50’ long, so I can move around… Read more

Hi Brian,

I just read your message with great interest as I have to go for a stent procedure and blood thinners after that. I will check with my cardiologist if this will work for me. I also do not want to quit Ofev.
I just started using it.

please update your current status if that worked for you. Thank you very much.

kris

Can OFev help with sarcoidosis,

has any one tried it?

I just came to know that one of my friends was diagnosed with this  so I am curios to know

thanks

kris
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Thanks Christie. Good to hear that stent will not stop the tx.
thanks

kris

Thanks Chas for your feedback.
Can a stent patient be with out blood thinners and use alternate medication?

thanks

kris

Thanks Dave!

They did not do the stent as part of catheterization as they wanted the referring cardiologist to opine on it and she was not available.

I just wanted to confirm. Thanks

kris

I am in the process of qualifying for transplant and getting tests after tests. I just got my angio and one of the arteries is clogged 70-80%. Was suggested to have stent. Will that disqualify me from getting a transplant?
has any one had such experience?

 

appreciate your feed back🙏

Wow! God bless

continue strong

kris

Hi Christie,

I absolutely love the wealth of knowledge you have on this subject and I am glad that you share it. It really helps prepare for the transplant procedure.

Again thanks a million🙏

kris

Hi Dave awesome indeed. God bless you with a long and good life🙏

 

Thanks Dave for sharing the valuable info. How long was your post operation stay in hospital?

God bless🙏

kris

Hi David, thanks for that information.I am also of your size, height and weight.

I have another question for the transplant. How long is the average stay in hospital post operation. I know it varies based on several conditions.
thanks

kris

Thanks Christie for that detailed information. Very useful to understand the process. Thanks Dennis for your reassuring message.

kris

Lot of good information. It is my fourth day on Ofev. My mouth is getting dry. Is that due to Ofev?
has any one experienced this dry mouth with Ofev?

are there any meds for dry mouth? I have been waiting to hear from my doctors

thanks

kris

 

Thanks Colin, that was very helpful.

Excellent information. Thanks for sharing. I have advanced IPF and I am considering transplantation.

I am going through the qualification test phase. If some one can shed light on those tests, how to prepare and look for will be good.

Also, what blood group that each of you had and how did that impact the wait for suitable lung… Read more

I absolutely loved this discussion and thanks for all those feedback from transplant heroes.

I am looking in to transplant for myself and this helped a lot.

can any one tell the average wait time after qualification?

thanks

kris

Thanks for the great information on transplants. I am 71 and will need a transplant. I am in good physic except for IPF.

jack congrats for a successful transplant and nearing 2 years after that. God bless and live long.
how long is the wait after qualifying for transplant?

I live in Sanfrancisco Bay Area and UCSF will be the center… Read more

Thanks Charlene for that excellent article. I was blissfully ignorant and did not do any of it. Thankfully I am ok so far. I will start doing all you said.
Kris

kris

Hi Michael,

when you go for walks do you carry an oxygen concentrator or tank. If oxygen level drops that low it can impact other organs. So please take care.
Kris

Wow! Hope it is much better than the current two drugs.

Thanks Patriotic for that valuable info. I sure understand that you are not a doctor but you have gained knowledge and sharing it is valuable with honesty and openness.

God bless🙏

I forgot to mention that I do have supplemental oxygen.
Another question:

can being around a dog cause inflammation? In the past week my daughters dog is with us

Kris

 

Thanks Charlene and Patrick. I am taking Prednasone for inflammation a steroid. Is Symbicort a steroid. Is it better than Prednasone?
yesterday my doctor prescribed Ofev. I am going for a second opinion on Monday.

thanks

Kris

Thanks for sharing great information.
I have a basic question probably for a Pulmonologist but I will ask any way as some of you may know already.
what causes shortness of breath? Is it scaring/fibrosis of the lungs or inflammation of the lungs. If it is former then the anti-fibrotic drugs should help. Right?

thanks

Kris

My ILD is progressing way too fast. In a matter of 6 months I went from almost normal, only go out of breath when going up hill to not able to walk a few feet breathing heavy and loosing oxygen level below 90.
is this normal?

what causes breathlessness, is it fibrosis or inflammation?

Thanks Linda for that great feedback information.
My ILD is progressing way too fast. In a matter of 6 months I went from almost normal, only go out of breath when going up hill to not able to walk a few feet breathing heavy and loosing oxygen level below 90.

so I don’t have time to wait and do further tests. Will taking Ofer at this stage help… Read more

Thanks Don for that info. My doc says since I am already on oxygen it is not advisable to undergo biopsy. Is that correct?
thanks

Kris

Dear Don and Christie,

thank you very much for your kind and valuable response to my question. I really appreciate this support group for sharing their knowledge and experiences.

Don, can you elaborate about theVATS lung biopsy?
thank you very much

kris

Piet,

Thank you very much for that valuable info on Cipla generic. I am originally from India and familiar with the company Cipla, a reputed company.  how do you order the drug from US? Is it possible now that Esbriet is FDA approved?

thanks

kris

I am diagnosed with IDL in the past couple of weeks. But my physician started off with immune suppression and non inflammatory drugs. No anti. Fibrotic medicines yet, even though I asked for it.
she says only after stabilizing anti fibrotic scan be given.
is this true?

thanks