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Are you going through lack of oxygen and palpitations?
I was diagnosed almost 4 years ago. Since then, I have been using Esbriet. I had no symptoms at all until last August, when my O2 started dropping with exertion, and I was then put on oxygen during the night and when going out. In September, I had a respiratory test. My lung function went from 50% to 70%, but my oxygen production went from 37% to 29%, which my pulmonologist said was not usual. I started having bad palpitations, and in December, I had to call 911 and was hospitalized. The diagnosis is that, although the PF damage has not progressed, I’m not producing enough Oxygen and my heart is overworking. If I’m quiet, I’m OK, but even walking from one room to another or changing clothes gets me incredibly fatigued and causes palpitations. This is a big problem because I’m the caregiver to my husband with dementia. Anyone going through this?? How are you dealing with it? Thanks in advance for your replies.
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7 Replies
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I was diagnosed with 5 1/2 yrs ago. When I left the hospital I was oxygen full time my pulmonologist told me I needed to be full time. He said I may feel alright while I sitting but when getting up and moving my organs including my heart needs more oxygen to keep thing working right. I hated that at the time but got used to full time oxygen. Started with 2L sleeping and sitting and 3L with exercise. Now 3L and 4L accordingly. I do fine as long as I don’t mess up and forget to turn up oxygen. If I do I have the same problem with my heart that you spoke about. I still am able to walk 1 1/2 to 2 miles a day and do some weight training most days. I am 8years old
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My doctor told me to walk, but I get so fatigued even from changing my clothes. I’m 82 yrs
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I am on no drugs to slow my scarring. I experienced the same problem. I am on O2 all the time. I am on the transplant list and will probably be transplanted either this summer or next summer. Resting at level 10 I get to 90-92 blood O2, but at level 20 I get to 98-99 which feels much better, so I use level 20 when resting in my armchair. I have 2 – 10L oxygen concentrators connected with a Y pigtail which connects to my breathing nose piece or oxymask depending on which feels better, as I have frequent congestion in my nose from allergies – I can’t breath through my nose when that happens and the oxymask has holes in it for my breath to exit.
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What is a Y pigtail?
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Also I sleep in my armchair as I get exhausted climbing stairs and our bedroom is 2.5 stair levels up from my den where my armchair is. When I sleep my O2 is at level 20.
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I am going through this as well. I am on O2 24/7. I am feeling ok at rest but as soon as I try to get up, even to just go to the restroom, I feel somewhat short of breath and my heart will start racing. I wore a monitor and it showed sinus tach. The cardiac dr. wants me to try meds to slow the heart rate down a little. I let my pulmonologist know about it and he wants to see me this coming week to discuss things. I’m hoping he will just tell me it’s normal at this stage and my age and to adjust my O2 as needed. I feel okay at rest and my numbers stay stable overnight.
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My pulmonologist says that my palpitations are physiological, not pathological, because the heart needs to work twice as hard because my lungs don’t produce enough oxygen. Like you, if I’m resting, I’m ok
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