@josephcollins
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Joseph Collins replied to the topic Decreasing DLCO……..40-35 %in a month in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 1 week ago
Hi Peggy it is not unusual for the numbers to vary from one PFT to the next. I was diagnosed in early 2014 and have accumulated 14 readings between then and 2022. Here is the DLCO readings I have had over that time. Hope they will be helpful. 11/14~42. 5/15~39. 11/16~36. 11/17~50.…[Read more]
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Jorge Ríos and
Joseph Collins are now friends 10 months, 2 weeks ago
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janis gorsline and
Joseph Collins are now friends 10 months, 2 weeks ago
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Andrew (Randy) Hicks and
Joseph Collins are now friends 3 years ago
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Jim Dawson and
Joseph Collins are now friends 3 years ago
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Joseph Collins posted an update 3 years, 5 months ago
I have completed 19 laser treatments so far the last 4 using the new protocol. Although my last DLCO was 26 I found, today, that I could, while at rest, maintain 96% O2 while BREATHING THROUGH MY NOSE! I still have stamina problems but I think that is due to my cardiac problem not my lung problem. I am slowly getting back to my normal activities…[Read more]
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Joseph Collins posted an update 3 years, 5 months ago
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Joseph Collins replied to the topic Laser Therapy Results in the forum Pulmonary Fibrosis Awareness & Advocacy 3 years, 5 months ago
For those that may be interested below are the results of all the PFT’s I have had since I was diagnosed. I tried to post it as a spread sheet but can’t seem to get it right so you will need to adapt as I did. Below each date is four stacked numbers. These represent FVC, FEV1, TLC and DLCO. Not the way that I had hoped but the info is there if you…[Read more]
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Joseph Collins replied to the topic Laser Therapy Results in the forum Pulmonary Fibrosis Awareness & Advocacy 3 years, 5 months ago
Piet and Leontis, when I was diagnosed the Ofev trial was still ongoing. My pulmonologist asked if I would be interested in joining it. After he told me how rough the side effects were and how expensive it would’ve once approved I opted not to get involved. I refused all medications until 4/17/2018 when it appeared that the disease was on the m…[Read more]
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Joseph Collins replied to the topic Laser Therapy Results in the forum Pulmonary Fibrosis Awareness & Advocacy 3 years, 5 months ago
Yesterday, 8/6/19, I had a PFT at my pulmonologist’s office. This was exactly 5 months since my last one, (3/6/19), and the first since I have been receiving laser therapy.
MY MARCH READINGS WERE, FEC/FEV1/TLC/DLCO = 37/45/61/21
MY AUGUST READINGS WERE, FEC/FEV1/TLC/DLCO =. 43/51/52/26
“The pulmonologist comment was that I was “REM…[Read more]
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Joseph Collins joined the group
Research and Development 3 years, 5 months ago
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Joseph Collins replied to the topic Laser Therapy Results in the forum Pulmonary Fibrosis Awareness & Advocacy 3 years, 5 months ago
@drandyhall Andy, in the first paragraph Of your personal story it states that you were diagnosed in 2004. I believe that to be in error. Please verify date as I was diagnosed in May of 2014 and thought my IPF was paralleling yours.
Regards,
Joe Collins
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Joseph Collins posted a new activity comment 3 years, 6 months ago
Hi Mark and thanks for the welcome. I have been browsing the site trying to decide where and when to post. The most amazing thing is that my symptoms are quite different from most of the ones here. I have been diagnosed for over 5 years and still have a resting O2 concentration in the mid 90s. I have never taken anything other than 20 mg of…[Read more]
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Joseph Collins replied to the topic Perks To Using Supplemental Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 6 months ago
When first prescribed supplemental oxygen I was hesitant to use it in public. My pulmonologist casually mentioned that he had seen me put on glasses when I need to see something clearly so why should I not go to oxygen when I needed to breath? Nuff said!
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Joseph Collins posted an update 3 years, 6 months ago
I am an 85 yo maie, new to this forum, but an old hand at IPF. I was diagnosed with it in May of 2014. I was offered a chance to join the Ofev trials but opted not to do so as I was told that the side effects were bad and the pricing would be worse. For the first three years my digression was less than in the study group. My pulmonologist said…[Read more]
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Hello Joseph, trust me this was not tmi. This forum is to tell your story. Regarding the laser therapy there are some members who are well versed in this treatment. I am not one of them. Hopefully some others can chime in. I am glad you are feeling better and I hope your heart rate comes back down to normal. It seems like have been through some…[Read more]
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Hi Mark and thanks for the welcome. I have been browsing the site trying to decide where and when to post. The most amazing thing is that my symptoms are quite different from most of the ones here. I have been diagnosed for over 5 years and still have a resting O2 concentration in the mid 90s. I have never taken anything other than 20 mg of…[Read more]
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Hello Joseph, I am happy to hear the prednisone is helping with the inflammation; fibrosis and your arthritis. It sounds like scarring is progressing at a slow rate and hopefully it has stopped. Good luck with laser therapy and yes, please keep us updated. Mark
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Joseph Collins became a registered member 3 years, 6 months ago