Samuel Kirton

Christie,

Every letter I have written to my donor family has been a love letter (and it does go by snail mail).

Sam …

Charlene

This is a great thread topic. This is one of those topics which can take on a life of its own. This applies to both pre-transplant and post-transplant.

I have always found others in our circle to be helpful but never pushy. If it was a task I thought I was able to accomplish I just had to say I needed to push myself. In other…[Read more]

Christie

I am sharing more about Larry as it relates to our unsolicited but invaluable membership in Club IPF in my column on February 7th.

Sam …

Hi Christie

This is an essential topic for those impacted by PF. Following a recent exacerbation, I am back to walking outdoors on a regular basis. That can be a game of chance in the winter months here in Virginia. I also have a recumbent bike set-up with a great view if I have to move my exercise indoors.

Sam …

Happy New Year Charlene! My favorite 2022 moment was traveling aboard Amtrak’s California Zephyr from Chicago to San Francisco. The highlight was crossing the continental divide with my new lungs just 16 months post-transplant. In 2023 I want to continue to make every breath count while discovering more of America.

Sam …

I use a weekly tray and carry enough of the meds for the planned length of the trip plus a buffer in case the return home is…[Read more]

Chris,

As Margaret said, vaccination decisions are personal choices. I am a post-transplant IPF patient. I have had the bivalent mRNA vaccine and Evusheld. I encourage you to talk to your care team about any consequences of not being fully vaccinated. Some care centers have declined to consider a patient for a transplant who is not fully vaccinated.

Clinicaltrials.gov shows the PRM-151 is still in Phase 3. (I did not include a clickable link so this would post.)  Sam …

Alan,

I would look at the PACT Act again. Originally intended to cover those exposed to burn pits it has expanded to cover Agent Orange in Vietnam and includes a section on other toxic substances. Try this link to the VA page on PACT Act coverage.  Sam …

Cecil,

You have asked an eternal question. In many cases, including mine, there was no series of baseline CT scans to document the progression of PF prior to treatment. The CT scans taken during treatment show progression between scans. The presumption is that the anti-fibrotic, either Ofev or Esbriet, is working. Your pulmonologist is likely the…[Read more]

Hi Garry,

First, let me thank you for your service.

I was diagnosed in January 2017 at age 59 with IPF. I started Esbriet (Pirfenidone) in Feb/Mar of 2017 and took it until the day before my bilateral lung transplant in July 2021. I never had serious side effects beyond sensitivity to the sun. There were no significant GI issues. I did meet…[Read more]

I have had arterial blood draws several times (2-3) over 4.5 years during testing conducted as part of the pre-transplant qualification process. Yes, the arterial blood gas test is indeed painful. In each case, the draws were done by a Respiratory Therapist. I have never heard of an ABG being done to determine if someone is smoking. This is…[Read more]

Thank you Christie for curating a nice list for this thread. I did receive a bilateral lung transplant on July 10, 2021, and I was discharged from the hospital 10 days later. The first 14 months post-transplant were relatively uneventful. I had my first exacerbation post-transplant at the end of September 2022 when I had pneumonia. I was in the…[Read more]

Thanks Charlene. As an update, I am now 24 days post-discharge. The pneumonia is significantly diminished. I will now do a 12-day course of prednisone to put this speed bump behind me.

I completely agree Charlene and I do. By way of background, I was diagnosed with IPF in January 2017 and I received a bilateral lung transplant in July 2021.

Here in the U.S. individuals can become organ donors by checking a box on their motor vehicle license. For so many it is almost a reflex action there is little or no education around that…[Read more]

A warrior among warriors!

Sam …