Barbara’s Story

Site created on September 11, 2021


Hi everyone.

A couple of weeks ago, Barb started feeling tired. This was more than the usual busy professor / wife / mom kind of tired. She was struggling to do the things she normally does. She tried to work through it - as she does - and we just chalked it up to the fact that we have had a lot going on at home lately. Willie transitioned to a new group home (after a stay at NC Start), school started for Liz and Justin (and Justin had some adjustment challenges), the war in Afghanistan ended (and in a way that had real life implications for our Marine wife daughter and Air Force son), and the anniversary of 9/11 (a hugely impactful day for our family) was just around the corner.

We really thought the fact that Barb wasn't feeling her best was a function of the stress we have been under. In addition to all the family stuff, Barb's job is a constant source of stress. Add it all together and it seems logical that a person would feel run down.

After a few days, though, we realized what was happening was not just stress. She began to have a constellation of other symptoms. Muscle weakness, dizziness, and blurry vision. Her voice started to warble and then disappear. She either sounded like a pack a day smoker, or spoke so softly no one could hear her. The fatigue worsened to the point that she couldn't walk across the room, or even talk, without feeling completely out of breath.

This past Friday, she had an acute event. She was on the back porch talking with I and one of our pastors from church when she began struggling to breathe and holding her chest. I have never been around someone having a heart attack, but I have seen a lot on TV. And it looked exactly like the Hollywood version of a heart attack. I was able to walk her to the bed in our office / guest room (the Ogre) and help her lay down. A few hours later the intense pain had subsided, but she was still super tired.

I made an appointment for her at UNC Family Medicine for first thing Saturday. They transferred her to the Emergency Department at UNC Hospital to get a more complete cardiac workup and determine next steps. After an hour or so at the ED, it was clear that she would need to be admitted for further testing, monitoring and care so they began working on finding her a bed. This proved to be challenging because Covid has filled hospital beds everywhere in the state. Luckily, she tested negative for Covid. Twice. Even more luckily, they were able to find a bed at UNC-Hillsborough, where she is now.

She has spent the last few days getting tested and evaluated. Her symptoms are challenging and mysterious. None of the physical or lab tests suggest that she has had a cardiac event. Her heart seems to be working just fine. The origin of her symptoms is a mystery.

This all happened about a year ago, but she was never admitted to the hospital. She did have dozens of diagnostic tests done, and in the end there was no final, definitive diagnosis. Just the possibility that it could happen again.

Which it has.

It's been a lot.

Welcome to our CaringBridge website. Jeff and Alex will be updating on Barb as updates come in. We will also be updating this site with different needs as they arise, so please check back. Thank you for everyone's offers to help, we are truly blessed with such amazing people in our family's lives!


Newest Update

Journal entry by Jeff Hall

Hey all. This is Jeff. 

One final update before we shut the site down.

This is the latest on Barbara.
 
And I have one big favor to ask. I'll get to that in a bit.
 
Yesterday was the first visit from Barb's in home physical therapist. Tomorrow she will receive a visit from a speech therapist, and next week, OT will begin. All of these therapists will be ongoing for at least the next few months.
 
Barb continues to have tests and consults. The rheumatology consult was doctor to doctor (she was not examined in person, it was just a review of tests and records), and the consulting rheumatologist did not see convincing evidence of an autoimmune disorder. The doctors have ruled out her brain, her heart, and now her immune system. We are still left with no good evidence and no good idea for what is causing any of this. She DOES have a spinal MRI on Friday which may provide more info. We'll see.
 
That's where things are. It is frustrating, but we are working forward with our new normal.
 
The good news is that Barb has some energy back and seems close to her "old" self sometimes. There are some lingering cognitive issues, and her body is still easily fatigued. We are all hopeful that the in home PT, OT, and speech will help.
 
Justin has one goal for mommy. That she is able to walk up the stairs to play with him in his room, and read him stories. To be honest, I think that is her biggest goal too.
 
The last few weeks have been among the most challenging of our marriage. And we have gone through a lot. And we are still here. And will be here after this.
 
We are grateful for all the ways that people have reached out and sought ways to support us. The meals, the dog walks, the rides to appointments, the time with Justin. All were hugely helpful.
 
Now for the big ask. One big favor you can do to help Barb, to help me, to help our family.
 
Barb is turning 50 in about a week - October 9.
 
This is not how we pictured that day. A few months ago we had hoped to have a big outdoor party at our house, with friends and family and people from around the country coming to celebrate with Barb. Between her health challenges, the Delta variant, and life in general here in 2021, that won't happen now.
 
I still want to make her day as special as possible, and YOU are a big part of that. YOU. The people who have supported her. Her family, friends, colleagues, and community. YOU can still make her day special.
 
Here is what I need.
 
Those of you who have had your life touched by Barb's incredible spirit and presence... I would like for you to make a happy birthday message for Barb. It doesn't have to be some fancy Hollywood production. Just a simple, short (less than a minute) video or a picture or even some words sending your thoughts and wishes for a complete recovery and a happy birthday. That's it. A good friend had the brilliant suggestion to create a Kudoboard for Barb's birthday - one central place where people can upload videos, photos, gifs, messages, whatever. PLEASE PLEASE PLEASE add your video (or whatever you feel comfortable with) to Barb's board. 
 
 
Just tell her how you feel. Be real and be open. That's how she is.
 
Thanks y'all. For everything.
 
This post will be up on CaringBridge until Sunday, when we will be shuttering this site. Hopefully for good. Because that will mean that Barb is fully back, and fabulous at 50.
 
PS. Some of you will see this same message in a lot of different ways (text, email, etc.) If you get the message multiple times, just know how much it would mean if you made a short video. I really want to do all I can do to make her birthday special.

- Jeff

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