Has anyone had pulmonary rehab?

It looks like my doctors have figured out my lung issues and I am starting to get better but I have a long way to go. It seems that my CLL has infiltrated my lungs. I’m taking Brukinsa along with my monthly IVIG.

On 4 l/min supplemental oxygen my exercise tolerance is little better than nil and I am very weak. I have lost almost 40 lbs and it was mostly muscle. I am walking and trying a bit of very light resistance training.

My doctors have suggested pulmonary rehab. Any other ideas?

No ideas your doctors may not already have touched on, sorry, but as therapy, maybe start a singing program and playing a wind instrument, ask if that could help?


Bluey that is a very interesting idea. A basic recorder could be interesting. I would, however persue therapy to learn how to breathe properly. Many breathing techniques can also lower stress response, as a bonus

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I tried singing. The dachshunds thought it highly entertaining

Did they sing in harmony?
You may have the makings of a neat entertainment group. :wink:

One warning, if you are really short of breath, consider if they ask for an MRI that those require laying down flat on a narrow cold table for long time, like 25 minutes.
I had to go get one and, not realizing I was having a bad day, so that was a bad idea, I tried.
I didn’t last a minute before I was completely out of air and had to abort the MRI until another day, then premeditate heavily for it.

It is hard to get people to understand what being really short of air is, since you don’t look sick until you are in trouble.

Hope whatever they can help you will get you back breathing better. :hugs:

Interesting thought. I have not had an MRI on my torso just lots of xrays and CT’s.

I’m on continuous supplemental oxygen but coughing-which I do a lot-certainly is stressful. I know that eventually I will catch my breath but until I do it can be terrifying. I’ve learned that it WILL be ok but until it is…

My insurance changed specialty pharmacies and I worry how much my Brukinsa will cost

Sorry about the high cost of some of those medications.
Some times the manufacturer will help with those under certain situations, are you asking them, or have your Dr do so if cost is a problem?

If you have to get some procedure like MRI that will require something that makes it hard to breathe, ask your Dr about pre-medicating beforehand, it really can help.

The CT guided lung biopsy A year and a half ago was not fun…2 hours on my stomach with my arms over my head.

Slept through the bronchoscopy last October but ended up spending2 nights in the hospital because my oxygen saturation was too low