Samuel Kirton
Forum Replies Created
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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 …
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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 delayed.
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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.
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Clinicaltrials.gov shows the PRM-151 is still in Phase 3. (I did not include a clickable link so this would post.) Sam …
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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 early on with the Genetech Clinical Education Manager to learn more about the drug. I believe my success with Esbriet was the information on how to take the drug to avoid GI issues. As Christie
pointed out each of us has a slightly different experience with each of the drugs in our therapy based on not only our body but also any other medications we may be taking.
I also wanted to respond to your insurance question. When I was first diagnosed my insurance and prescription coverage were both from Tricare. Tricare initially denied my Esbriet and my pulmonologist appealed resulting in an approval. Each January my pulmonologist had to renew the continuing need for the medication. I suggest you work with your pulmonologist to get the medication right for you approved. Sam …
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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 definitely a question for the member of your care team who ordered the test.
Sam …
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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 hospital 5 nights before being sent home with a 10-day course of broad-spectrum anti-biotics which took care of most of my pneumonia. I am now on a 12-day course of hi-dose prednisone.
Life post is good for me. I had a strong care team who prepared me pre-transplant. Rehab made me strong.
Not all transplants are easy. It is a personal decision and each of us will have a unique experience. It is not necessarily going to be sunshine and roses for everyone but it has given me the opportunity to meet some amazing people on my journey.
As @Christie mentioned I do write a weekly column here at Pulmonary Fibrosis News that includes more details on my transplant experience. Sam …
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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.
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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 decision. In some cases, their family does not know of their decision to be organ donors.
I try to increase awareness through my writing, speaking with support groups about my journey, and honoring the gift from my donor. When I speak about transplantation I try not to present a “roses and rainbows” version. It is tough physically, and I would absolutely do it again. Also, you are absolutely correct it is not a cure. Most transplant patients will tell you it is trading one chronic condition for another.
I was listed on March 19, 2021, and received a call that a set of lungs were available on July 9, 2021. When I hung up the phone, the first thing I did was say a prayer for my donor and donor family. I still do not know anything about my donor. My joy of receiving a second lease on life was muted by the grief my donor’s family was experiencing. I had to take every opportunity to honor their gift.
I wear a Donate Life – Recipient pin which is a conversation starter. I share my story at the drop of a hat. My IPF journey, thanks to both an amazing care team and my generous donor, has allowed me to experience walking my daughter down the aisle, seeing the birth of two granddaughters, and another complete trip around the sun.
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A warrior among warriors!
Sam …
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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 …
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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 nearby did establish a lottery, while another prioritized solid organ transplant (SOT) patients.
Oddly enough, there is specific guidance from NIH on the prioritization of Evusheld recipients at the NIH website. You have to scroll down to “Patient Prioritization for Pre-Exposure Prophylaxis” and click-through links in the article to connect the dots of their recommendation. The bottom line, SOT patients who are being immunosuppressed and otherwise meet the criteria for the infusion need it! -
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 …
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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 best source to answer that question or offer an opinion on your specific case.
Personally, I believe Esbriet did slow the progression of my disease. I was taking the 3 tabs three times daily for the first year then I switched to the single tab three times a day. The effective dosage was the same. I found it easier to take the single tab than the three tab dosage. Sam…
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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 and above the buttocks.
As for the use of the term infusion, it is my understanding that is because there are two different medications administered together. They will join forces to create the protection barrier offered by Evusheld.
Sam …
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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.