samuel-kirton
Forum Replies Created
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I read your profile to understand a bit more about your journey. Can I ask why you are not eligible for transplant and if you are being seen at a PFF Care Center Network site?
Sam…
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I used a Respironics CPAP until I was transplanted in July 2021. Following my bilateral lung transplant I was advised to no longer use my CPAP. My device was subject to the recall and I received a new machine from Phillips.
The issue was the breakdown of the foam used to reduce sound and vibration from the units. One factor that is often overlooked is the surge in the number of users who utilize ozone and ultraviolet cleaners. This is recognized in the linked FDA report. It was discovered the use of these cleaners may have accelerated the breakdown of the foam material.
The FDA in October 2023 stated: “Ozone gas and UV light machines that claim to clean CPAPs do not have FDA clearance or approval, meaning that the FDA has not found that ozone gas and UV light cleaners work to kill germs on CPAPs and are safe. The FDA has not received data or evidence from manufacturers that says UV light can clean the inside surface of CPAP hoses, or information to confirm that UV light does not damage CPAP machines. The FDA does not have evidence that machines using UV light protect you from unsafe levels of UV radiation exposure.”
Sam …
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Hi Momo
I would suggest you first consult with your care team. There are so many questions here… is your fibrosis the result of ____? What medications are you taking? Is there a treatment available that must be prescribed? Is there an OTC remedy available?
Sam …
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Hi Jan,
I did apply for SSDI following my diagnosis in 2017. I had to stop working in my profession and went out on disability from work. The insurance company paying my disability claim engaged a law firm to file my claim. The paperwork is daunting. I do have to agree with you that a law firm will relieve a great deal of stress which is something neither the patient nor caregiver need. The law firm was paid by the insurance company as it was in their best interest to reduce their liability by the amount social security paid. Because IPF is a compassionate case the turn-around time was short.
Sam …
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I agree with Brian. I would offer that I was diagnosed in Jan 2017 and transplanted in July 2021. My decline increased rapidly the year prior to my transplant and I was on 7lpm of oxygen 24/7. Another alternative to consider is to talk with your pulmonologist about trying Esbriet. I took Esbriet for over 4 years prior to my transplant with little impact on my activities. Each of us is different in the speed of progression and impact of the medications.
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Hi Dee,
I am not sure where you are located and you mentioned U of U. I am going to guess that Univ of Utah which is a part of the Pulmonary Fibrosis Foundation Care Center Network. You have a local pulmonologist who has referred you to Univ of Utah. Can I suggest you contact that local pulmonologist’s office again for two reasons:
– Your local pulmonologist can prescribe oxygen. If you share the numbers you are experiencing for oxygen saturation they should be more than willing to test you for oxygen needs.
– That pulmonologist can contact the care center at U of U to advocate for an earlier appointment.
Sam …
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Have you tried the U.S. clinical trials site? There is also a matching tool for clinical trials on the Pulmonary Fibrosis Foundation site. Most convenient though you will find a Clinical Trial page at Pulmonary Fibrosis News on the top banner of the page.
Sam …
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Charlene – I would offer a couple of comments. First, consult your care team on any supplements you should be taking with Ofev. I am not sure where you are located. The Pulmonary Fibrosis Foundation has a support group locator on their website if you are in the United States. You can search based on your zip code. The PFF also has a monthly virtual support group. You can find information on those groups on the page linked above. I am sorry to learn of the way this horrific disease has impacted your family. Can you come back to let us know if you find a support group? Sam …
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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 “Pirfenidone reduces subchondral bone loss and fibrosis after murine knee cartilage injury”. I took Esbriet (pirfenidone) from Feb 2017 until July 2021 and it was never suggested it contributed to the loss of bone density.
Sam …
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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.
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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 worth noting to your care team.
Not all exacerbations are equal. In my experience communicating a change in your condition to your care team early is important. I was diagnosed with pneumonia and I started communicating as soon as I saw my first symptom. As my symptoms progressed they were aware of each change and ultimately made a decision to hospitalize me. They know me and where I am on my journey. Communication is something my care team has asked for since we began our relationship.
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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.
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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 …
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I agree!
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Welcome back Katie and thanks for sharing that story. I was also diagnosed at age 59 in January 2017.
Sam …
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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 was my “permission slip” and daily reminder. Sam …
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I had a reader of my column looking for a discussion on this topic. I will send him to this discussion.
Sam …
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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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Christie,
Every letter I have written to my donor family has been a love letter (and it does go by snail mail).
Sam …
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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 situations, we found we only had to ask. People were generally willing to help load or unload our car. Your grocery example is spot on. Our neighbors seemed to just know when my wife returned with groceries. Delivery people (UPS/FedEx) took the extra steps to bring packages right to the front door. FedEx told us they put it in their system to alert the driver when a delivery was scheduled for our address. Meals, especially after tough clinic days or following a procedure were welcome pre-transplant. Post-transplant there were more restrictions which made that less practical.
Sam …
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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 …
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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 am familiar with is Special Needs At Sea. If you google their name it should provide their info.
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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 the amount of oxygen provided. If memory serves me correctly the highest setting provides an “equivalent” of 1.25 – 1.6 lpm. Those levels are consistent with over-the-shoulder carried POCs. The G5 is one of the better models on the market. I own one. It is just not adequate for your need. There are some wheeled portable concentrators but I have not used one.
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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 …