Update it's getting better

I’ve been on my new med for6 months. Back then I could barely walk from my chair to the bathroom.

Yesterday I did ( 3 )2 /2 minutes on my elliptical at half speed. I’m still very weak and down 40 lbs but it’s slowly getting better. I’m still on 3 liters of oxygen per min and coughing up a lot of mucus but that is slacking off too

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I’m glad you are doing better!

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Good to read of improvements, can’t imagine what it’s like living with this.

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It’s been tough for sure. I’m at the point of feeling well enough to want to do things but have to be careful.

I’m on IVIG and brukinsa, A targeted therapy. I really didn’t want to go on it but I’m glad my oncologist convinced me. My blood counts will never be normal but they are getting better and I even have antibodies to the spike protein

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Glad to hear you are okay! Sending more jingles your way!

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So glad you’re improving!! I hope it continues.

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Me too! I did two three minute intervals on my elliptical this afternoon. A month ago I could do 15 seconds.
Now I have to start resistance exercises.

I alternate between wow three minutes and darn I used to do 45 at more than twice the speed

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Thats wonderful!

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Spoke to soon. In ED

Jingles.

I’m sorry! Hope you’re feeling better soon!

Jingles!!

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Hang in there @carolprudm! Sending positive thoughts your way!

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Jingles!

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!y hematocrit is down to8. Seven rates a transfusion.

They want to repeat the bronchoscopy they did last October which didn’t yield any actionable results and darn near killed me. Only slightly exagerating.

The radiologist thinks I have a mycobacterial infection but they ate hard to culture.

At any rate the oncology floor at UVa is very nice

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Woohoo something grew on the sputum culture! Now we have something concrete to treat

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I hope it responds quickly to meds!

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Fingers crossed for you @carolprudm!

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I hope you get some relief soon and feel better.

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Still leaking somewhere. Hemoglobin 7.5Gram negative rods from culture

I hope your doctors can get everything under control. How frustrating it must be for you.

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