Samuel Kirton

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 …

Just by way of an update, here in the US, the FDA issued a change to Evusheld dosage, essentially doubling each part of the infusion from 150 mg to 300 mg each.  I have been scheduled for the up-dosing this Sunday (3/6).  More information on the change can be found here.

Sam …

Hi Jenny,

I am glad to answer these from my experience/understanding.

I was able to drive myself after the appointment. Depending on traffic I also live ninety minutes – two hours away from my care center. I had no adverse effects from the Evusheld.

The injections did not hurt at all.  They were administered in the area just below the waist…[Read more]

Hi Christie,

I noticed no side effects at all. The infusion was given via two injections between the buttocks and beltline.  There was no redness, swelling, or discomfort in my case.

Hello all, I need to disclose first that I have received the Evusheld infusion on Jan 12th. This was six-months post-transplant for me. The infusion was a non-event but did require a one-hour wait following the infusion.
My care team lobbied their hospital to allocate their Evusheld allotment to lung transplant patients first. One other center…[Read more]