Susan’s Story

Site created on February 14, 2023


Hello to Sue's friends and family...hoping that this is a good way to keep you posted on the health journey our mom has embarked on.  
On Wednesday, February 8th, Sue visited her primary care physician due to concerning (and sudden) swelling in her feet and legs, and an irregular/racing heartbeat.  Upon examination, she was quickly directed to the emergency room at Mercy Hospital for further cardiac related tests.
That first afternoon and evening in the ER, it was determined that she was experiencing atrial fibrillation. The initial focus was treatment to prevent blood clots/stroke. It was also noted that her kidney function was of concern as creatinine levels were elevated.  Additional tests revealed stenosis of both the aortic and mitral valves, mitral valve leakage, and pulmonary hypertension….essentially, she was in acute heart failure.

Examinations and tests on Thursday, February 9th brought a day of increasingly concerning news from cardiologists and cardiac surgeons- we were told (very directly, in no uncertain terms) that she will have to have her mitral valve replaced and her tricuspid valve repaired soon. We were advised that, while it is a major surgery with serious risks, it really wouldn’t be optional - that without it, she would not recover.

(Yep…it’s a lot - and that was just the first 24 hours of this particular journey)

Friday, February 10th presented a new set of challenges and concerns…this was the day we began to truly understand the Jenga-like relationship between the heart and the kidneys. Sue was moved to the intensive care unit in the wee hours of the morning due to severely low blood pressure. Her kidneys began to deteriorate rapidly and by that afternoon, we were told she was essentially in kidney failure and that dialysis would have to be a consideration. As a result of all these various conditions, her right ventricle was not functioning (which will pose a significant challenge and risk during a valve replacement surgery and recovery).

Needless to say…Friday was a heavy and difficult day. Yet, heavy dark days often make the light in our lives ever more clear. Mom is blessed with a circle of amazing people who love her deeply! (Side note…we, her daughters, are held up by the support of the strongest badass women and the most tender and kind men ever!) Thankfully, the complicated cocktail of medications mom began to receive via just short of 1,000 IVs began to moderate and regulate her blood pressure, and improve her kidney function.

Over the weekend, the plan was to try to maintain that delicate balance….and that was successful enough to see moderate improvement in her kidney function and keep her blood pressure and heart rate fairly steady. Enough so that she spent Saturday sharing family stories and laughs, and Sunday evening watching Rihanna’s halftime show…never without a roomful of kids and grandkids.

On Monday, February 13th, Sue was stable enough to be transferred to Abbott Northwestern Hospital. This move was made in anticipation of the post-surgery support that may be necessary due to the complexity of her current condition(s).

It’s a good time to note that, even after only a few days at Mercy…there were some emotional goodbyes to and from her care team …those doctors and nurses had (unsurprisingly) fallen in love with Sue :)

On Tuesday, February 14th,  the Abbott team was getting up to speed and assessing her status. Rest assured, Valentine’s Day did not get lost in the shuffle…she and her brother Bob chatted it up on the phone, she received a card filled with love and wishes from her family of neighbors, and spent a galentines evening with her favorite fourth-born grandchild Natalie.

Whew…it’s been a ride of a week. Today (February 15th) - assessment continues in order to guide the final recommendations from her cardiologists and cardiac surgeons. Expecting to hear a decision from that team soon as to when they will be scheduling her heart valve replacement surgery.  Stay tuned….

Thank you for all the love and prayers…they are felt!

Newest Update

March 31, 2023

Journal entry by Mary Schultz —

Today is a lot of things… 
1. Friday
2.  A week that she’s been home…. a week of the new normal. 
3. It’s Mom’s 77th Birthday!!!

For reasons we can’t understand except that it’s just how the universe works… starting with that first one, when Sue’s kidneys shut down and everything was looking very bleak, FRIDAYS have been particularly challenging throughout this journey. Contrary to this society we live in, that focuses so much on making it to Friday (TGIF!!)…  Mom’s worst hospital days - the ones when her hemoglobin was too low, or her blood pressure was too low, or all her vitals were just not great -  were the Fridays. 

Last week, on the 7th Friday since she’s been admitted, we broke that streak! 
Mom came back to her home - her cute little apartment, in the building she’s loved for almost ten years now. We had put in a lot of work getting it ready for her return (all the BIG thank yous go to my sweet Jeff - he was a champ!!). “Ready” meant clearing out lots of stuff that no longer served any purpose, and preparing the space for me &/or Kathy to be here - all. the. time. 

That first night, a week ago… Kathy and I sipped chardonnay, watched the Sweet Sixteen, figured out how to provide nourishment through a feeding tube, and read Mom all of these caring bridge posts and  comments, pausing when one of us needed to ride out a surge of emotion. Picture the most surreal Girls Weekend imaginable. 

The week has gone well, all things considered. Mom is feeling good, and getting around the apartment swiftly. Each of her at home services (home health nursing, PT, OT, Speech, personal care attendant) have been here at least once,  and our first outing for an iron infusion and an in office doctor appt was accomplished without incident. 

Kath & I… hmm… we’re taking turns?  making it work? doing alright? completely overwhelmed? talking to each other more that we have in 35 years? beyond  grateful? juggling a lot? processing everything in our unique ways, as we always have? reflecting on family dynamics? happy our kids are grown, and thankful we both married incredibly capable partners? missing our dogs when we’re not home? taking it one day at a time?
ALL OF THE ABOVE. 

Back when it was becoming clear to Sue that she was in for a very long haul, she stated that her goal was “to be normal by my birthday”.  (I’m not going to dig into why I find the use of the word ‘normal’ problematic - this was her declaration). At many points, a more realistic goal became simply to be alive on her birthday. Here we are, on the morning she turns 77… somewhere in between Alive and Normal. Celebrating. 


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