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Hi Charlene!  I don’t know if this is just a coincidence or some divine intervention but when I saw this topic my jaw dropped.  The last two days I have been dizzy, wobbly and even fell forward today when I tried to stand up. I wasn’t sure if it was because of the severe sinus headache I have or due to the fibrosis or dehydration or ??? Perhaps i…[Read more]

Hello Ruth, thank you for providing another avenue of support for our forum members. Mark

Hello Kristie, thank you for sharing.  Your sharing of information will help quite a few people. Thank you for engaging in discussion. Mark

This wife started a group on line and wrote a workbook as well.  She and her husband Tony are lovely and very helpful.

https://transplantrogues.com/ 

I fixed the face rubbing problem, I bought a completely different cannula.   It is made by a company called Oxy-tech.  It is a one sided nasal cannula they call an oxy-breather .  It uses a Bluetooth looking earpiece thing  to fit your tubing into and lightly pinches your septum. It is one sided.  There is a clip to keep the weight of the hose…[Read more]

@sandford

Hi Merle,

This is definitely the right place to discover opportunities to share, learn, find helpful ideas with supplements, K-laser, herbal concoctions, and find resources for clinical trials for starts.

I got the news while in the Philippines in October 2016 and it was confirmed when I returned stateside April 2018 and found this…[Read more]

Hi Charlene and other writers on this thread. I am learning this forum is a wonderful source of guidance on the many decisions we make as IPF patients. For me the discussions on one or more lung transplants is extremely helpful. I am 69 years old and except for the fact that I am overweight I think I fit the profile of a worthy transplant person.…[Read more]

Hello JoAnn, usually the cough the PF patient has is a dry cough, hopefully the antibiotics are working and eliminates your symptoms. PF patients have a compromised immune system, please take precautions to protect yourself. We are nearing the end of the flu season and entering the allergy season. Take care. Mark

I have been going thru the tons of phlegm both coughing and blowing my nose for the past two weeks. My pulmonologist put me on antibiotics a medrol dose pack and I am starting to feel better. I have IPF about 12 years and do usually have the cough but not as severe as lately.I think this is more than the IPF and as I said it is getting better. God…[Read more]

Merle your story is identical to me ,We are both 75 ant tried Elbert and couldn’t take it with issues. I have tons off phlegm and need to buy the Kleenex co. This has been going on for months and sometimes the phlegm red. I think we need to enjoy what we have until the end. I live in a split entry house and have electric stairs going in on Sat. I…[Read more]

Hello Beckie, if you can’t receive the call because of bad reception, make sure you give as many numbers possible for them to reach you. I have heard of instances where they send the police or sheriffs out to contact you if they think there is trouble with the reception. There are plans in place regarding how far you are out. Everything will be…[Read more]

My husband just went through the test and they found a heart blockage. They put a stent in this Monday. After 6 months of Plavix, he will be put on the list. It is a bit scary. I worry we won’t get the call for some reason(poor phone reception or some other reason) and we live 3 hrs away from out transplant center so we have to leave our house i…[Read more]

Hi Charlene,

Thank you for your response re travel. As I am not on oxygen yet I have not had to check yet. Are there some airlines that do not allow a person to bring their oxygen concentrator onboard and use it?  I have started using wheelchair delivery to the gates at airports due to my arthritis. That helps not to tire me out so much…[Read more]

Thanks for breaking down the commonly-used acronyms Terry! I know this will be really helpful for folks new t the forum, or even those pondering our regular use of them. Appreciate your sharing about where you are in relation to these measurements/tests as well. 🙂

Take care,
Charlene.