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They kept telling me in hospital both times, even after my 6 min walks that I dont require home oxygen. My doctor agreed with them and added if it's not medically warranted he has to write me a prescription for it which will cost me $3000. I'm in Canada. The shortness of breath is getting better, but the high heart rate is worrisome and again all heart tests normal. Drs and specialists toyed with the idea it might be Interstitial lung disease. But then decided it was a pneumonia that wasnt killed my first hospital stay so during the 2 weeks I was home it re grew and add in sepsis and here we go again but 2nd trip involved intubation and life support. I dont know if that scenario spells pneumonia or interstitial lung disease and neither do they.
The second go round happened Sept 20. It's now Nov 13 and I'm better but still have mucous, still hearing slight crackles, still cant do much and the doctors do not appear concerned! I'm thinking my life is on hold, I'm on no meds or puffers, and can we please get on with this?? Frustrated!
Replies to "They kept telling me in hospital both times, even after my 6 min walks that I..."
yikes! on a vent 2x? I would be a long goner as even tho I'm only 67 I want to be DNR.... probably cause I've been depressed for so long, feeling like crap.
have u had a sleep study done? that at least got me on cpap which has been helpful to some degree. now I have 02 plummed into cpap and my 02 sat average during nite was 97%.
I have asthma but only take montelukast pill every nite.... but I'm quick to use nebulizer with levoalbutetol (doesn't make me so shakey), along with ipatropium if I start to feel any chest congestion.
I also do better in dryer climates (sw az). I grew up in wis and then lived in wa/or. I was always sick with sinus inf and bronchitis.
at least ya know there r a few others of us that feel ur frustrations....
Having lived wth an impaired immune system all my life, your situation has the odor of an infection your body is having difficulty suppressing. My successive bouts of pneumonia resulted in needing my arterial valve replaced 8 years ago, and prior to the surery, my imunologist puttng me on gamma globulin relacement so my new pig valve would not be destroyed by the same pneumonia pathogen, thought to be streptococcus pneumoniae. The downward spiral of destruction of my own arterial valve happened within 6 mos, a process that normally takes many many years. So my advice is 1. check your IgG, IgA, and IgM titers; 2. Identify the pneumonia pathogen; 3. Have a cardiologist consult check heart function and valves; If your gamma globulin titers warrant, or if low normal titers, consider pushing for IVIG therapy until you are out of pneumonia vulnerabilty. My Hizentra infusions for the past 8 1/2 years have probably saved my life. My open heart surgery was not elective. I've been on supplemental O2 since then, 8 years ago, going from 24/7 use to O2 use on reclining/sleeping 3 years later. I hope you successfully overcome the pneumonias and any other health challenges successfully. Blessings.
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I had pneumonia and have interstitial lung disease brought on by Covid. I am on oxygen 24/7 for the past 11 months exactly today. Was in the hospital for 2 months. My resting heart rate increased pretty high last Dec, and resting was in the low 100s. Then out of nowhere I got high blood pressure. I had been having chest pains for months as well. When they put me on BP meds my resting heart rate went down and so did my exercise heart rate. They are doing blood tests and a kidney ultrasound this week to see if my kidneys were the cause of all that. They want my O2 to be at 88 or above. My 6 min walk is at 6 liters now and I used to use 25 so I have improved greatly. Hang in there and keep asking for more tests until they figure out the root cause.