June 15, 2019 at 2:07 am #19849Liam MullaneyParticipant
firstly I am new to the forum although I have been reading all the articles and discussions for many months and find them extremely useful.
I was diagnosed with IPF in July 2017 and started taking Nintedanib in Aug 2018. Thankfully I don’t have many of the side affects normally associated with this drug and it’s slowed down the progression of the fibrosis. However while the fibrosis hasn’t got worse I feel more breathlessness and more fatigued particularly in the last 3 months. The biggest change in the last 6 months has been my DLCO level which has dropped from 57 to 49 and I wondered if anyone in the forum has similar experiences of low DLCO levels. I am currently doing medical rehab to see if I need oxygen as my SpO2 drops to mid 80’s and heart rate increases to 150 on exertion.
June 17, 2019 at 1:14 pm #19886Susan HowittParticipant
Sorry can’t be of much help as I have CPFE and my readings are very different to some one with IPF and there is no tested drug treatment for CPFE my last CT scan showed very little advance of my diseases , however I did have again an exacerbation beginning of May, same as last year, no idea what causes these.
I am now on oxygen because of readings as low as 77/79 on exertion, heart rate can go up to 140 going up stairs or slope. I am permanently breathless and fatigued
June 17, 2019 at 5:59 pm #19905
Hi Liam, I posted this directly verbatim from Denny so you can see it. He had originally posted it as a status update instead of reply. Here is what he shared:
@lmull My DLCO is my bad number since my two pulmonologists diagnosed me with Usual Interstitial Pneumonitis (a form of IPF). However, my original number after diagnosis was 59% 2 years ago but I took Chinese herbs for 2 months back then and one month a year ago and just now finishing with another month. They got me back playing hockey and in my PFT last week it was up another 7% to 89%. Each of my last four tests have improved from the first one and I am feeling great right now. Other people on this site are having good luck with the herbs, especially Steve Dragoo and Dr Hall. WEI Lab herbs…
June 18, 2019 at 10:20 am #19913Michael LamkinParticipant
I think the normal DLCO level is between 89-110 so my reading of 30 isn’t good. My other numbers are in the 80’s so I’ll be asking my doctor what I can do to get the DLCO no. Up (if that’s possible) I’ve also noticed increased breathlessness over the past few months and that really …. I just finished 24 physical therapy sessions a few weeks ago which I feel were beneficial and now I need to force myself to continue the routine! 😟
i was diagnosed with IPF a year ago but having had Valley Fever for a couple years before diagnosis I was told that the IPF was an underlying condition and therefore was not diagnosed until after the Valley Fever had gone dormant. Unfortunately the Valley Fever returned a few months ago so that could also be having an affect on the DLCO. Don’t know but hopefully my doctor who I’ll be seeing in late July will have a clue about improving the DLCO.
Upon exertion my oxegyn level can drop into the mid 80’s but is usually in the low to mid 90’s. I very seldom use the oxygen but find when I do on a 4 setting my level goes as high as 100 while at rest and usually stays around 92 while exercising.
Wishing you the best Liam
June 18, 2019 at 5:40 pm #19921Bill KellyParticipant
@lmull (Liam) DLCO results can vary with the technician and with how you blew. You can’t be certain you did it exactly the same way as last time. Over a span of several tests you should at least get the trend. However if you Google DLCO together with asking how it’s calculated you will find all sorts of things including medications and fatness can affect the result, not always in the way you might think.
I’d be inclined to trust how you feel. Could you have an independent lung infection or inflammation? Ask your doctor.
- This reply was modified 3 weeks, 5 days ago by Charlene Marshall. Reason: tagging
June 18, 2019 at 6:14 pm #19923Steve DragooParticipant
It is possible you PAH which will make the heart rate increase fast. My DLCO is ok (don’t have results available now) but heart rate goes to 115 on mild exertion. I take a few things that I know help. If you are interested, please let me know – happy to help anyway I can. – Steve
June 18, 2019 at 6:51 pm #19914Liam MullaneyParticipant
Mike, according to Dr.Google a normal persons DLCO is 80. My physio has been monitoring me under exercise and without oxygen my SpO2 drops to 85 and heart rate goes to 150 and with oxygen I can exercise quite well with SpO2 staying around 92 and heart rate not going above 125. So the plan is to give me an Inogen machine to cope with exertion. However, I have no idea if it’s possible to reverse DLCO trend.
June 18, 2019 at 6:52 pm #19920MarshaParticipant
Hi, Liam and all…
I, too, am concerned about a decrease of my DLCO (I call it my “output” number) from 38 to 28 over the past year (my other numbers which I call “oxygen input”) went up to 78 and 82. While I am happy about the ones that went up (which are a direct result of Dr. Hall’s @drandyhall) laser therapy treatments which I’ve been getting since the end of February 2019) I am concerned about my DLCO. I totally understand your concern about your own. (Regarding my laser treatment therapy, I might add that my energy level is waaaaay (not a typo!) up from where it was prior to my treatments!!))! Laser therapy is doing EVERYTHING it promised: (I am running out out of juice on this phone right now and will continue after I charge it, so stay tuned….thanks!).
June 18, 2019 at 6:56 pm #19931
Love to hear your positivity Marsha, so glad you are feeling like your energy has improved. That sure is half the battle with the darned disease, isn’t it? Thrilled to hear from you and that you are doing alright. I know I owe you an email, promise I’ll get to it as soon as I can. As always, love hearing from you!
June 19, 2019 at 12:02 am #19947Terry MoriartyParticipant
My DLCO has been in the 25 – 35% since I went on oxygen in 2012. In early 2018, it dropped to 19%. I’ve lost 40 lbs. since then, in addition to the 100 lbs already lost since going off prednisone in 2014. FVC and TLC improved, but DLCO remained low. I know what DLCO measures (oxygen carbon dioxide diffusion), but I haven’t been able to find out what it means. It’s really low, but so what?
With the most recent weight loss, I’ve improved alot since that flareup in early 2018. But not the DLCO. I have Hypersensitivity Pnuemonitis, not IPF.
June 19, 2019 at 7:01 am #19951MarshaParticipant
Terry, I so appreciate your post! Makes me not quite so concerned about my DLCO at 28! I was diagnosed in 2015 and use oxygen at 3-4 24/7 at present. I us the Inogen system for all my oxygen needs and my rep’s name at Inogen is Fred. He is great and I recommend him when you call for your own system! Just ask for him! I find my system to be far superior over rentals! Thank you again for your comments, Terry. Best regards and a hug, too…!
- This reply was modified 3 weeks, 6 days ago by Charlene Marshall. Reason: tagging
June 20, 2019 at 12:22 pm #19960Bill KellyParticipant
Liam ( @lmull)
You don’t say what level O you need to exercise. I did extensive study into O supply for exercise about 3 years ago when I was told to expect 1 to 3 years of life, Far and away the best solution for exercise, unless you have very little impairment and don’t anticipate worsening, is liquid oxygen LOX. There is a direct relationship between the O output of a machine and its size. When a machine has, say, 6 settings, do not believe that 6 corresponds to 6 liters per minute for example. Some POC salesmen should be selling used cars.
- This reply was modified 3 weeks, 5 days ago by Charlene Marshall. Reason: tagging
June 20, 2019 at 1:02 pm #19973
Bill: your comment about how some oxygen suppliers should be selling cars, made me laugh! How true that is, sometimes I truly don’t think they understand our needs and certainly don’t answer my questions as thoroughly as I’d like. Thanks for the humour today – I really needed it.
June 20, 2019 at 4:01 pm #19986Terry MoriartyParticipant
I got my Inogen 1 G 2 in 2012. It was my life saver. I worked bi-coastal and racked up alot of air miles with that POC. Unfortunately, I didn’t understand that lpms and pulse rates weren’t the same thing. My lpm needs increased and I was still using the POC. That contributed to the exacerbation I suffered in early 2018. At that time, my lpms went up to 8 for activity. Had to go on tanks.
Started the diet in October, 2018 and my oxygen needs are back down to around 5 for activity. I did a 6 minute walk using the POC and it passed at 6 pulse rate (barely). I use it when driving and for short walks that aren’t far from the car. I carry tanks for backup. I wear a Vibe O2 to minitor my oxygen levels when out, so I can switch to the tank if it gets to low. Complicated, but atleast I’m independant again.
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