18) The Rest of the Story ~ Adjustments

August  3, 2021
Tuesday 

Integration Rationale:  I've been home adjusting to whatever my new wrinkle means... sitting back, percolating on my new medical situation, taking its perspectives and definitions into consideration.  Wrapping my mind around the frightening notion that I have had a STROKE!  Considering the daunting idea of the impermanence of MY life.  

I know that I am NOT my condition and the Me that's inside this vessel is studying the stroke instruction manual and finding tools to add to my "toolbox" to help modulate my emotional state and restore equilibrium. I need to step back into my strengths-based values and perspectives to "map" the outcomes I desire in this new situation. A visual metaphor might look like using a control console. 

There some physical, medical, and cognitive things to do that can bolster my overall system to achieve my desired outcomes in the new (as well as ongoing) medical issues. For example, I can make a point to "walk 30 minutes a day" (Dr. Manchanda and Dr. Wozniak); keep my blood pressure down (Dr. Baru and Wozniak);   remember to follow Dr.'s orders (pill times, increase frequency of taking Lactulose, low/no salt intake, eat more protein, etc.); and find out more about how all these things fit together to make a unified treatment approach.

Dr. Wozniak Appointment: Liz and I met with Dr. Wozniak and one of his nurses, Neva (who took lots of notes for him). He wanted to hear all about the hospitaliz-ation, what we knew about the stroke and how I am doing today.  He checked my chopped fistula and declared it a good thing since he thinks the blood pressure in my left arm is better. Came outa there feeling pretty good about heart stuff!

August 9, 2021

Monday 

Observation:  I've been realizing, as I watch Liz pull out of the driveway with Shayna; enroute to another St. David's Hospital for Liz's hip surgery, how it usually would be ME going with her in this kind of situation.  Liz is such an important part of our family that were something to happen to her we would not survive: we'd all be lost and untethered from our main cog. I stand at the door waving them away in the early morning darkness. The words to Morning Glory started playing in my mind as their tail lights disappeared around the bend.      

"Nighttime, to some a brief interlude

To others the fear of solitude

Brave Helios, wake up your steeds

Bring the warmth the countryside needs"   

 

It's weird being the stay-at-home parent who has to avoid the public because of the seriousness of the current exploding pandemic and my need to remain sequestered because of my immunocompromised status.

By late afternoon Shayna and I are making "She's all done. Things are good and they should release her tonight" calls to friends and relations. In the miracle of modern medicine people drop in to their local hospital, get a titanium hip replacement, and go home that night if there are no complications! Liz and Shayna return from the hospital around 6 pm. saying, "(I was) grateful to be home and amazed that my mobility".  Hospital staff had her up and walking a couple hours after she was out of the recovery room!  I was just happy to see her after this ordeal... smiling and using her walker to navigate to the living room sofa.  She said she had no pain to speak of and was thirsty. Thus started Liz's home recovery work with Shayna as her personal home health aide.  

August 12, 2021

Thursday 

Tele-Conference with Dr. Kienke:  Our next post-stroke appointment was a phone call with my Primary Care doctor for an update of my hospitalization and getting the MRI and other records to send to the HHT Center at Southwestern Hospital in Dallas. We also discussed my getting on the ARC list for the Pfizer booster vaccine.

  

Face-to-Face appointment with Dr. Manchanda: Shayna drove me out to Buda to meet with Dr. Manchanda and acted as scribe, Jack's short-term memory, and the stroke inquisitor (searcher of answers).  First we met with Nadya, Dr. Manchanda's Physician's Assistant who updated my record with dates of the hospitalization, my report of the stay there, and conducted a rudimentary MOCA.

Dr. Manchanda came in, pulled up my records from St. David's and made comments/recommendations as he was reviewing them, as follows:

• keep LDL below 70 (ammonia related)
• there are no blockages in major brain arteries
• the clot was slightly bigger than a "mini stroke" (1 mm)
• no need for any changes to meds

Then he pulled up the MRI on his computer screen, swiveled it around so we could see and went through the various video slices to show us the clot and a before and after of the clot, and then no clot. It was fascinating and really, from this visual patient's point of view, helpful in understanding.

Dr. Manchanda's final orders for now include:

• next appt. in 2 months
• walk 30 minutes a day
• have Shayna or Liz give me a driving test before I can drive on my own ~ there is no neurological reason I shouldn't be driving. 

August 13, 2021

Friday 

Face-to-Face appointment with Dr. Wells:  Our next appointment was a regular  meeting with Dr. Wells, my heptologist. Since I only see her every three months she came in and started asking me questions about my recent hospitalization and current situation and then she left the room briefly. I introduced Shayna as my note-taker and then she left to get my recent records, I thought.

A few minutes later Dr. Wells came in and introduced herself to Shayna... with the other woman (Naomi, PA) following her.  She then turned to me and remarked in a very animated way on how good I looked today compared to last visit in June. I was was caught off guard and embarrassed because I mistook the first woman for Dr. Wells! "They both look alike to me: tall, brunette, long hair, white coats..." I whispered to Shayna. So I didn't do anything...

Shayna and I informed her that we thought it was a TIA and Dr. Wells mentioned that it seems like this CVA Stroke (the medical term for a stroke is a Cerebrovascular accident) was not a TIA. The fact that the clot dissolved quickly could indicate another kind of stroke. (???) "Does this mean that they gave me medication to break up the clot, such as Alteplase or tPA, referred to as  a 'clot buster', which is the gold standard for treating ischemic stroke(s)" I really must check on this and will edit it, or the correct strategy.

Dr. Wells wants me to pay less attention to my ammonia numbers on lab tests because ammonia fluctuates throughout the day. She says what IS important is: 

• take the Lactulose and the Xifaxan to result in 3 BMs a day! 
• improve my upper body muscle mass by using 3 lb. weights
• "keep things the way they are" she finished with.