New and undiagnosed

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....

I'm scheduled for the 6 minute walk end of this month. my resting heart rate once 02 was started is in the hi 50s. before 02 anytime I'd get up and move around in house it would spike up and make me feel more SOB. that has really subsided alot!

my BP has been on the higher end the past 3 yrs but I've refused Rx for that as I feel it's somehow related to the SOB and low 02.
my mom had pulmonary hypertension so sometimes I wonder about that. she had bronchiectasis for almost 50 yrs.

my daughter had covid and went home on 02. but almost a year later she has moved to Albuquerque, over 6300 ft elevation without 02!. but she definitely has residual anxiety and PTSD.

honestly I don't mind using 02 as it has helped me feel so much better!

I definitely have major anxiety and PTSD. Wondering if I'm going to collapse again because this thing sneaks up with 0 warning. I had high bp but after this it's normal. I was thinking of DNR if this keeps happening without a reason. I'm not living life like this at 58. When my heart rate spikes like that I cant go far or do much so I cant make plans. I never know if my body will be good or crazy high from one day to the next. I'm definitely depressed and feeling isolated. Thank you for replying. ❤

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.

Thank you gillysmom for that extra info. I dont know a lot about either subject. You seem very knowledgeable. Do my symptoms sound like Interstitial lung to you? Right now, resting heart rate between 60 and 70. In the morning on movement 125- 145. In evening it's best and I can do small things and its 110-115. BP was high before this whole incident started. Now it's normal. Resting sats 96/97. Sats on moving, 90-93. No dizziness, fainting or lightheartedness. No blue lips or nail beds. Sats go back to normal quickly after returning to rest. An electrocardiogram was done and is normal. Bronchoscopy showed nothing. I'm losing weight (I need it) because I'm eating healthy. Yet some days my 02 sats stay at 93 while moving and heart rate stays down. That gives me hope and relief. Next day it could be bad again. I already have anxiety disorder so my anxiety is through the roof to the point I havent left my home since getting home from hospital Oct.2 This is no life.

Idon't think an electrocardiogram is sensitive enough to give you definitive answers about your heart. Get a cardio consult and check out the steps I suggested in my last post. Lungs can restore function, but not when your body cannot fight off the lung infection. Docs sometimes withdraw antibiotic treatment before your body can restore its own healing through your immune system. Your immune system may be the problem. A good infectious disease or immunologist specialist plus cardiologist, and a few tests to help idenitify the causes of your illness are essential. YOU need to figure out the reasons for your continued life challenging infections. When this same problem happened to me, I had to advocate for my immune spport treatments, or, for sure, I would likely have died years ago. I feel for your anxiety, because I believe you subtly realize something is wrong, and you are not getting better. Please try to toughen up and fight for your survival. There are hundreds of us who want you to get better. Try meditation and tough self love, and some new specialist consults.

I have a cardiologist after heart attack - 2 stents placed. No issues w/heart now. I also have a Pulmonologist, I have PF (pulmonary fibrosis) since Nov 2020. Your activity level and stats sound like mine. Finding great doctors like mine are hard to find but they are out there. Listen to friends for referrals and real experiences. Pray you get some answers soon.

Thank you for your comment. I made an error in my last post. It wasnt an electrocardiogram I had, it was an echo..and was great. Anyway, unfortunately where I live we have huge waiting lists for specialists. I dont get a ct scan till Dec. or a pulmonologist visit until January despite my insistence that 4 months is ridiculous. They know my history and what's happened with my trip to another city on life support after being septic.
That being said, in the last 2 days I feel I've turned a corner! My 02 is holding steady at 98 and 99% and I've been walking more and doing stationary light exercises led by a pulmonologist on a video. My heart rate is staying between 97 and 110 when I'm doing things and I feel better. Maybe this is just a brief break in the clouds, or maybe my patience, rest, going slow and nutritious eating are healing me. The mucous is clear and theres less of it, cough just in morning briefly. The doctor who said it was a very severe pneumonia said healing could take 6 months. Maybe it was pneumonia, I dont know and wont have any more answers until the specialists can see me. The specialist who did a bronchoscopy said nothing showed up there. It's one day at a time and trying to contain my anxiety till further tests 🙂

ALL GOOD NEWS. Yay. May you continue your progress and are back to enjoying life.

Slowly. As long as it keeps going forward!