Paul B ~ Lakeland

There is a grief support counsellor at the hospice where I receive palliative care. She helped me immensely in dealing with the death of my son, my only child, at age 43. Afterward, I started CBT with her for managing my own grief as I have moved closer to my own death. The one thing she said to me about my own death was asking what it was about…[Read more]

Prabir

Double Lung Transplant at Dignity/St Joes in Phoenix.  May, 2016, I was 55 years old at the time.

Have you received the Evusheld injections for the immunocompromised?

“AstraZeneca’s Evusheld, the only monoclonal antibody authorized as a periodic injection to prevent infection, has become an essential shot for roughly 17,000 Americans wi…[Read more]

Prabir

From Phoenix, the 1st flight was to Florida, around 4 hours in the air. The next day Orlando to Aruba about 3 hours.

I have not not needed oxygen since the transplant.

Your flights are long flights!

I was diagnosed to be in rejection at my 4th anniversary clinic visit.

For me, there were no signs of ‘rejection’. The diagnosis was bas…[Read more]

Prabir

Congratulations on dodging Covid for 2 1/2 years. I’m 6+ years post transplant and am in chronic rejection.  I’m guessing a transcontinental trip means flying.  My wife and I just got back from Aruba, we shut down any flying trips through the pandemic and finally got on a plane in July.

Tip 1. Bring enough medicine for twice as long as yo…[Read more]

Hi Charles,

There’s been a lot of conversation about Zinc on these forums. If you use the search feature by going to the top right-hand side of the page and start typing in Zinc slowly, all the conversation threads should come up. I don’t have any personal experience to share with you, but I know a lot of people have started or continued taking…[Read more]

Hi Susan,

Thanks for sharing. Sorry to hear you deal with a terrible cough with lots of phlegm, that sounds terrible. I think the prescription of inhalers likely depends on what type of cough you have with IPF, dry or wet etc. Hopefully your doctors can find something else to help manage the cough!
Take care,
Charlene.

Thanks for sharing your experience with us Michael, and sorry you can relate to medications making you feel worse. I am on the Respimat as well, but can no longer take Symbicort as its too hard for me to take a turbuhaler. I hope the discussion with your pulmonologist about this goes well.
Take care,
Char.

Hi Jen,

Thanks for writing – what an important topic to discuss! It is really important to look at credible research behind these wristband pulse oximeter’s, as you say, so kudos for doing that and looking into the reliability of them. I wear an AppleWatch personally, version 6 I believe, because it looks at my oxygen levels and heart rate. I was…[Read more]

Hi Steve,

Interesting post – thanks for sharing your experience! Its albuterol that I’m struggling with actually, along with another inhaler. When the prescribed inhaler dose went up, my symptoms seems to get worse. Goodluck and I hope your symptoms and test results continue to stay stable; sometimes that the best we can ask for.

Take care,
Char.

Great advice Jim, it certainly doesn’t sound like you’re a “dumb old carpenter” to me 😉 Glad you have your wife there as a strong advocate for you too!
Take care, and thanks for taking the time to write,
Char.

Hi Brenda,

Thanks for writing and contributing to this topic. I hope you’re finding the forums helpful; there is a ton of information here and some really great people. It is hard when doctors share conflicting information, I agree, and questioning him as to whether it was mild or moderate was good. We certainly have to advocate for ourselves! I…[Read more]

Hi Willie,

Thanks for taking the time to write and share your experience with this topic. So sorry to hear COVID wreaked so much havoc on your lungs and body, that sucks. I do have an appointment to revisit the regimen I’m now on for my inhalers, I don’t like how they make me feel so I’m hoping to go back down a step. My increase was due to…[Read more]

Hi Gary,

No, the only two FDA-approved drugs on the market to slow down the progression of IPF are Ofev and Esbriet. I take Ofev, and its actually not that drug I’m struggling with; its my inhaler regimen. I find when I increase one of them in particular, my symptoms tend to get worse so I was curious about others’ experience with this.
Char.