Joseph Collins
Forum Replies Created
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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. 4/18~37. 8/18~55. 3/19~21. 8/19~26. 12/19~25. 6/20~24. 1/21~38. 6/21~30. 12\21~6. 6/22~16
with DLCO being the measurement for oxygen transfer it is one of the important readings. With all the gyrations I still am able to go without oxygen during the daytime. I use supplemental oxygen while sleeping as my oxygen level will drop off during sleep and I want to provide my heart and brain with all the oxygen they need. I have a heart condition also which slows me down too. I was a young and healthy 80 years old when diagnosed with IPF then, 4 years later I added a stent to my heart then 9 months later a second one. I have learned to live zero stamina. I still enjoy life and as long as my mail isn’t being delivered by a gopher I am a happy camper. I have never any of the fibrosis drugs since the onset. I do take Prednisone 15mg. daily. I also have a laser treatment once a week. The laser treatments started just before the 6/18 PFT.
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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 care to work for it.
Joe
Date
FVC
FEV1
TLC
DLCO
11/14/2014
47
58
71
42
5/18/2015
52
60
65
39
11/16/2016
45
55
53
36
11/15/2017
44
55
44
50
4/17/2018
41
50
51
37
8/16/2018
43
53
46
55
3/6/2019
37
45
61
21
8/6/2019
43
51
52
26
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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 move again. At that time I was put on 30 mg Prednisone per day for a 30 day evaluation. On the 28 th day I suffered a heart attack which stopped the trial and resulted in me getting my first stent. Both my cardiologist and pulmonologist were convinced that the blockage was likely the cause of my breathing problem. From that point until recently I had zero stamina and could barely walk from the den to the bathroom. Bathing and combing my hair was pure torture! Then on February 10; 2019 I acquired a second stent. Shortly after that I started to bleed internally. The first indication was a blood test in March which showed my hemoglobin level to be one point below the normal range. Unknown to me the level kept dropping until June 27 when another blood test found I was critical. This resulted in being hospitalized for two units of blood and a search for the source of the blood loss. I was scoped from the lower end as well as the top then swallowed a camera capsule but no source was found. I was sent home but two weeks later blood tested positive in my stool. Back to the hospital where they found and cauterized two small lesions just above the entrance to the small intestine. Another unit of blood and back home. Still not feeling well I scheduled an appointment with my cardiologist to see if my heart could be the problem. She found nothing but did agree to order a blood test to check my hemoglobin which was back critical again. Four more days in the hospital and three more units of blood. Another capsule scope which was negative for blood leak so back home. That was last Saturday August 3. Another blood test on August 6 showed my hemoglobin improving so, hopefully, I have that behind me. It was during this time period that I managed to log 13 laser treatments. My DC could not have been more accommodating. I suggested we postpone the treatments until I had sorted out the bleeding problem but knowing I had a PFT scheduled for August 6 and at least as curious as I was as to what the result would be he juggled his schedule so we could push on. We are both happy with the results and looking forward to the next PFT in four months. With any luck the results will be even better! I am Darrel’s first and only IPF patient but after my first results he is inclined to offer the service to others who need it. A positive result this next period would really convince him that he needs to do this.
Sorry for the length of this but I wanted to show the whole picture. For any treatment, including laser, to work under these conditions is, in my opinion, absolute magic!
joe
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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 “REMARKABLY STABLE overall from a lung standpoint, is stronger today.” This was followed by, “He now relates he’s been getting laser therapy from a chiropractor and he believes that the laser therapy what made it better. This of course is likely nonsense but it’s not likely to be hurting anything.”
I am going into my sixth year of this disease and only have had the one pulmonologist so I have a hard time understanding his position on laser therapy since I have never, not once, showed the improvement that was evident yesterday. He has seen me gradually slip away but is totally blind to my effort to climb back and hold on. Further down in his comments he doubled down on his earlier comment. Perhaps the time has come to go Doctor shopping! If the next eleven treatments work as well as the first eleven I may look for a half marathon to run in!!
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@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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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!