Lung issues/discouraged

[Graymaresrule]

This whole mess started with pneumonia back in March 2020.
Short version I was admitted to our local hospital and then had several bouts of pneumonia, a CT guided lung biopsy (neg for just about everything but inflamation) diagnosed with CLL,and last Dec was put on monthly IVIG.

I was doing pretty well until early July when I was diagnosed with pneumonia and treated with 2 weeks of Augmentum. My lungs have been getting steadily worse. I have NO stamina, even going up a flight of stairs is hard and I have to stop and catch my breath. CTscan last week showed all sorts of weirdness, tree in Bud, ground glass, lymph nodes and mucus. I spent 4 days in the hospital while the doctors debated about a bronchoscopy then decided they didn’t need it because I responded to the antibiotics.

So here we are. We still don’t know what is going on. My pulmonologist has started being evasive about my chances of ever regaining any cardiopulmonary fitness.
Any ideas?

[Simkie]

When our current doctors don’t have answers, seeking further input from specialists in higher level centers is a worthwhile exercise.

IIRC, one of the best hospitals in the country for pulmonary problems is National Jewish in Colorado. Have you considered sending your records there for a review?

[2tempe]

sending you a pm

[Graymaresrule]

I’m going to wait and see what shows up in this next round. Right now the oncologist and pulmonologist aren’t in agreement and I hesitate to add a third party into the mix. They are at UVa hospital

[Simkie]

If they did agree, would you be discouraged, and asking this question?

Info is always good. I’m really sorry you’re not getting answers where you are now. Don’t be afraid to look elsewhere

[Graymaresrule]

@Simkie

f they did agree, would you be discouraged, and asking this question?

If they agreed and formulated a plan I would feel encouraged.

[Simkie]

@Graymaresrule

If they agreed and formulated a plan I would feel encouraged.

Definitely consider sending your records to a nationally recognized center–call it a tie breaker.

[3PonyFarm]

I am sorry to hear you are going through this. I hope you can get some answers soon and good plan going forward.

[2DogsFarm]

Sorry for your problems.
I side with @Simkie re: 3rd opinion.
Can’t hurt, might help.

Meantime:
Could you get relief from one of the new lightweight oxygen concentrators?

[Bluey]

I also have lung issues, last spirometer test was a measly 41%, after medication!
Doctor wants me to move to town, preferably to an assisted living facility, as out of control asthma is no joke when you have a crisis, as you seem to be experiencing, things can go wrong in a hurry.

My opinion, pulmonologists I have known are the worst clinicians of all, their guesses the less valid, so, yes, get a third and maybe fourth opinion.

A friend had a clinical picture similar to yours decades ago for the longest time.
Ended up in the hospital a few times, her pulmonologist was not helping her any.
She was a smoker and he kept telling her that was her problem.
While in the hospital yet again, one day he came in and said “how is my pain in the azz patient today”.
She fired him on the spot, found another doctor, they found an abscess in her lung the other doctor had been missing for who knows how long, got that resolved and she was fine after that, other than still mad at that first doctor.

Keep being the squeaky wheel, may be best way to get some attention, even if it may get you also called some names.

[Willesdon]

Has anyone mentioned Long Covid to you? Thing is, Covid19 frequently (most of the time) doesn’t show up in the standard tests and scans. Timing, starting in March 2020 is suggestive, as is the extreme fatigue, breathlessness and ‘ground glass’ on the x rays. The thing with any medical issue is that the doctor has to believe one’s problem really exists. I’m 20 months into Long Covid and slowly improving. I’ve never tested positive for COVID-19, I have no apparent antibodies and my GP isn’t interested in my “deranged” blood results because they are only slightly odd, not up in the red zone. I’m in a Facebook support group with 47,000 other people who list multiple symptoms lasting beyond 12 weeks.

[Graymaresrule]

I’ve been tested negative 3 times for the virus, not antibodies. My blood results are certainly odd since I have CLL, which complicates things. This is the first time my CT has shown “ground glass”

[Graymaresrule]

@2DogsFarm

e re: 3rd opinion.
Can’t hurt, might help.

Meantime:
Could you get relief from one of the new lightweight oxygen concentrators?

My pulse ox rarely goes below 90 though it probably would if I walked faster for example.

I have my IVIG infusion Oct 11 and a pulmonology consult on the 12th and another CT tomorrow. The pulmonologist and oncologist will probably want some sort of samples from my lungs but for now they have not agreed on a CT guided biopsy of the biggest mass or some sort of bronchoscopy. I had a biopsy of that mass last year that showed histocytes, no malignancy.

The biopsy kinda sucked, 2 hours on my stomach with my arms over my head

[2DogsFarm]

Jingling for some answers & relief for you!
Biopsies suck

[Graymaresrule]

Current possible diagnosis are mycobacterial infection or lymphocyte infiltration from the CLL.

Bronchoscopy Monday

[Graymaresrule]

I’m now on full time supplemental oxygen. It sucks

[Bluey]

@Graymaresrule

I’m now on full time supplemental oxygen. It sucks

Sorry you are there now.
Portables like Inogen sure help …
Did you get any kind of diagnosis yet?

[Graymaresrule]

They are very expensive and not covered by my health insurance

It’s looking more and more like a fungus

[Akogler]

Carol, Im late to the thread… Im so sorry you are having to deal with this!! Please keep us posted, it all sounds frustrating and miserable.

[Graymaresrule]

That’s about right. As long as I sit here with my oxygen and don’t do much I’m Ok. Bored but Ok. I get out of breath if I move around much and my lung capacity is diminished because of inflammation etc.

And the thought of a yeast or fungal infection on top of the CLL is concerning.
Well see what grows out in a fee days and what it might be sensitive to.