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Samuel Kirton

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@samuel-kirton

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  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic Using supplemental oxygen in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 day, 15 hours ago

    Paul,

     

    Your first step might be to contact your oxygen provider. My provider was a national company in the U.S.. I could schedule trips ahead of time to have a concentrator delivered to where I was staying. Alternatively, there are companies who work to deliver oxygen equipment to cruise ships for example. While not an endorsement, one that I…[Read more]

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    Samuel Kirton replied to the topic Bone Density Issues for IPF Patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 3 days ago

    Charlene,

    I have bone density issues primarily related to prednisone. I now have to get a Dexa scan annually. I take 800 units of Vitamin D daily which has helped show signs of improvement in my bone density. My prednisone has also been tapered to 5mg daily except during exacerbations. There is a paper from 2018 on the NIH site titled…[Read more]

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    Samuel Kirton replied to the topic Using supplemental oxygen in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 weeks ago

    The pulse system provides oxygen only when you inhale while a continuous flow source such as a tank pushes oxygen without being triggered by a breath.

    If you are already at 2lpm the Inogen G5 will not provide that level of oxygen. I suggest you Google the Inogen G5 technical manual. There is a table in the manual that translates their settings to…[Read more]

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    Samuel Kirton replied to the topic Using supplemental oxygen in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 weeks ago

    The short answer is yes it will. I would also suggest you do your research on a POC. A shoulder-carried POC will not provide continuous flow oxygen at 2lpm.

  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic Symptoms vs O2 levels in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 weeks, 1 day ago

    I am not sure what your diagnosis is other than PF. I am an IPF patient currently 19 months post-transplant. The relationship between shortness of breath and oxygen saturation levels rarely correlates to provide a meaningful diagnosis. As you have demonstrated, increased shortness of breath does not indicate a low oxygen saturation level. Both are…[Read more]

  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic Let's Unite for Rare Disease Day 2023! in the forum Pulmonary Fibrosis Awareness & Advocacy 2 weeks, 4 days ago

    Charlene,

    The good thing about advocacy is there is a role for everyone. For RDD this year I focused on the power of many voices uniting for a common goal. I spent a part of the day working on appropriation requests for government funding of more research in support of the rare disease community.

  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic The Story of my Father's IPF journey in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month ago

    Grady,

    Thanks for sharing your Dad’s journey through your eyes. Patients and caregivers often speak about how quickly the journey can change and you illustrate that so well.

    Sam …

  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic Covid causing pulmonary fibrosis in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 month ago

    I agree!

  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic Hello from the UK in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month ago

    Welcome back Katie and thanks for sharing that story. I was also diagnosed at age 59 in January 2017.

    Sam …

  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic What do you need a permission slip for? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 1 week ago

    Good question Christie. Shortly after my diagnosis, I decided surrender was not an option. That decision led to me living my life to the fullest. If you have ever looked at the profile picture here in the Forums or in my column there is a tattoo… Make Every Breath Count runs from my wrist to my elbow. It is also the name of my column here. It…[Read more]

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    Samuel Kirton replied to the topic The inevitable…. in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 1 week ago

    I had a reader of my column looking for a discussion on this topic. I will send him to this discussion.

    Sam …

  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic Side effects of exposure to the sun in the forum Esbriet (Pirfenidone) 1 month, 1 week ago

    I had the same experience with sun exposure while on Esbriet. I live on the water so I would cover up and use sunscreen to reduce the risk of a burn or skin cancer. My skin would feel like it was on fire if I missed a spot. Sam …

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    Samuel Kirton replied to the topic Love Letters in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 2 weeks ago

    Christie,

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

    Sam …

  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic How Can Others Support Those Living with PF? in the forum Living with Pulmonary Fibrosis: 50+ 1 month, 2 weeks ago

    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]

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    Samuel Kirton replied to the topic Larry Runyon in the forum In Loving Memory 1 month, 3 weeks ago

    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 …

  • Profile picture of Samuel Kirton

    Samuel Kirton started the topic Larry Runyon in the forum In Loving Memory 2 months ago

    On January 18, 2023, Larry Runyon’s long battle with pulmonary fibrosis came to an end as he went home to his eternal rest. I had known Larry for more than 30 years, long before either of us knew PF would impact our lives.

  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic Winter Fitness & PF in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 1 week ago

    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 …

  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic Welcome 2023! in the forum Living with Pulmonary Fibrosis: 50+ 2 months, 2 weeks ago

    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 …

  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic Medication Storage & Transport in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months ago

    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]

  • Profile picture of Samuel Kirton

    Samuel Kirton replied to the topic Saw PF on xray now what in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 months, 1 week ago

    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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