Barbara Lee - Jan 31st

Oh my goodness....This Barbara woman is superhuman! She is amazing and such a fighter. I hope you read this Barbara and that you will be posting on your own again soon.
You are truly my Hero! A true testament of a strong woman. I only hope to be as brave as you are in the future. 😉

Monday, February 22.

Checked in with Barbara Lee - she wanted me to let you all know how much she appreciates your care, concern, prayers, and support.

Barbara's lungs/heart are not able to get enough air into her blood stream to give her much energy, so she's unable to post at this time. She pretty much turns purple just moving from laying down to sitting up, although she stubbornly tries everything she can. Part of this is due to damage in her lungs, part due to the blood clot resting near her heart, keeping the oxygenated blood from even reaching the heart, so it doesn't get pumped anywhere else.

She now has large oxygen tanks that she is unable to move around on her own, so she really can't drive. A tank only lasts her an hour or two. It's taking a while to get a motorized cart for the house. In general, nothing is moving along as rapidly or as smoothly as anyone would like.

I wish I had better news to share -- Barbara might not like this, but her birthday is Sunday, so let's have a virtual party! (((Hugs to Barbara!)))

Hugs to Barbara!

I hope you get exactly what you want for your birthday.

Continued thoughts and prayers Barbara.

Stacey
(Jake'sMom)

Thnx Lynnwood...

Gentle hugs Barbara

Thanks, Nikita. Give her a hug from us all. I hope she feels better soon.

Texted briefly with Barbara - she is hanging out in ICU (says her nurse is a cute guy) trying not to turn purple. She's getting oxygen thru a mask (13 liters!) and isn't really supposed to talk. They've changed her from oral steroids to IV steroids.

Doctors are trying to figure out what to recommend, Barbara says she'll ask Nikita to put out a more detailed update about options this weekend.

Happy Birthday Barbara! I so wish you weren't spending it in ICU. My prayers are with you. Love You, Donna

Hi all, Nikita posting again.

It appears that she has Interstitial Lung Disease (ILD) which is a condition in which the air pockets in your lungs are permanently deflated and scarred. Ultimately the disease can be fatal if they do not slow it down or give a lung transplant. Today she had a bronchoscopy to check the lungs one final time for a possible infection (although an infection is unlikely). Doctors are inquiring about a lung transplant and if she would be a candidate for one or not. We are not sure when she will be leaving the ICU or the hospital. The disease appears to be progressing very rapidly and could not end well if they are unable to slow it down or get her a lung transplant. She is currently on 25 liters of oxygen and is unable to speak, move, or breathe deeply without her o2 stats dropping in to the 70's and 80's.

If you have any questions please feel free to ask and I will answer as best as I can. I will continue to post updates as we learn more about her progression and/or a proposed plan of action.

Nikita

Sorry to hear this my aunt had ILD.
Give her a hug from me and I hope she is a good candidate for lung transplant.

Thanks for the update.

Thnx for update.

I am thinking, if I were very sick, "what would I want my family & friends to do for me right now?"

I don't know. My father could chose & verbalize so I know what he wanted.

Unlike your mom, my dad's condition reached a point of no return (which he knew). Those last days He chose to mainly talk about how proud he was of his children & grandchildren. Years of mental confusion disappeared. Together we remembered, laughed, & joked. Amazing !! It was a blessing I treasure. That feeling is what I hope I am able to get AND give those I love . I try to remember that Every day.

Barbara asked me to post a few words -- late this afternoon she was moved from ICU to a regular ward. She asked for prayers that they find the right drug to give her to slow down the progression of what's damaging her lungs - in hopes of a future lung transplant.