I hope the doctors come up with an effective treatment plan soon. So sorry to hear you are dealing with this. Prayers for you for better health soon.
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So far nothing has grown out on the cultures.
The report of my last CT is grim.
I have an appointment with my oncologist next week and an IVIG treatment and an appointment with my pulmonologist. The following week I have an appointment with the infectious disease doctor.
I should be getting a nebulizer maybe tomorrow and possibly another needle biopsy soon. The bronchoscopy was rough and resulted in 2 nights in the hospitalâŠand no new info though it is possible that a fungus or mycobacteria could still culture.
Itâs discouraging
I just wanted to say Iâm so sorry youâre going through this and I hope you get some answers and some relief. My mom struggled with COPD and congestive heart failure for a decade and I know the hardest thing for her was doctors not having any clarity about what to expect.
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I am sorry, not knowing is making it harder.
Maybe someone will come up with something soon.
Undetermined lung troubles are bad for everyone.
They start taking away your quality of life, but I think no one realizes it and gets on the ball to find something to do about it until your complaining gets loud enough.
Become that loud voice now, keep pushing them best you can.
Sorry the bronchoscopy was so tough, maybe something will come out of it yet.
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Being unable to catch my breath is scary and being scared makes it worse. Iâve been dealing with this since March 2020 when I was hospitalized for pneumonia, probably not COVID. Itâs escalated in the last 4 months or so. Iâve been on antibiotics twice since then, oral antibiotics for 2 weeks and later on IV antibiotics for a week. I always get better on the antibiotics but the doctors are reluctant to keep administering them since they canât find whatâs causing the problems.
Nothing ever cultures out from the sputum samples but my already wonky WBCâs get wonkier.
The bronchoscopy involved putting saline into my lungs to try to wash out any signs of infection and get something to culture. I had trouble clearing the fluid left in my lungs, hence the 2 days in the hospital.
Even with the oxygen I can walk maybe 25 feet before I have to stop to rest. Iâm afraid if I go see my horse I will start to cryâŠnot advisable with a nasal cannula.
They better hurry to find some way to help, quality of life is not so good when we canât breathe.
Maybe those lazy cultures will get on the ball and come up with something shortly, to help clear the mystery, lets jingle for that now, worry when more is known?
I am so sorry Carol. Jingles your oncologist has a solid plan to get you back on your feet again.
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Iâm sorry youâre going through this. Having trouble breathing really is scary.
Massive jingles for healing and feeling better!
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Thanks. This really sucks and I am not at all sure the doctors can do anything about the assorted scar tissue/inflamation in my lungs.
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Thanks. I am bored and worried and frustrated. My family has been great but I feel like a pet rock
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My best friend had pain in her hip and thought she needed a hip replacement. Instead they found lung cancer that metastasized to her hip, spine and brain. Itâs such a heartbreaking shock. She has a pulmonary embolism which is making her feel so incapacitated. I am not hijacking your thread so nobody jump down my throat, just a round about way of saying I have an idea what you are going through and wish you the best.
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(((hugs))))
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{{{{HUGS}}}} to your friend.
It wouldnât be so bad for me if I could do something other than sit on my butt but my lung capacity is so limited I can only walk a few feet before I get out of breath, even with oxygen.
I miss my horses but I am afraid if I go see them I will start to cry and be unable to breathe.
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Go see your horses. Even if you need someone to take you and use a wheelchair, you need them.
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So scary.
Jingles for a clear diagnosis and treatment plan.
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At least I can see them from my window.
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I have 2 new nebulizers and appointments with my oncologist and pulmonologist and one with an infectious disease specialist the following week so hopefully they can come up with something.
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Looks like I am allergic to the Atrovent
I have used Ventolin for decades and works fine.
They came out with Levalbuterol tartrate, a âbetterâ more refined albuterol and first try it knocked me on my behind, literally, had to lay down, the world was spinning and waving back at me, took a good 20 minutes before I could stand up and walk straight. 
Ventolin still works fine, go figure.
We are our own ginea pigs, are we.
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Yup, pet rock/science project.
We pick up the levalbuterol tonight
