Tag: TIA

App Fatigue Is Real

There is an app.

There is always an app. This one is a link to Rich’s medical records in abbreviated form. Results of blood work. Results of MRIs, CAT scans, X-rays. Reports of his implanted loop monitor. A little microcosm of our journey in abbreviations and code numbers assigned by health care professionals.

In that app are ambulatory documents that pop up after each visit to a specialist. There we find whatever changes to medications or protocols that were discussed. But before you get to that, there is a list of every single side effect and problem that has come Rich’s way. There are listed forty-five issues. When we first saw our oncologist seventeen years ago there was one. A diagnosis of Non-Hodgkin’s Lymphoma. At that point, the specific type was not yet known.  Our first visit with the oncologist had a humorous moment when, lifting up a single piece of paper from his file folder he said “This is it? This is all you have?”

And it was.

As we’ve discussed before, our journey began in 2003 as we were getting ready for a family vacation along the St Lawrence Seaway in a rented houseboat. To make things easier on the water, the guys were all getting a buzz cut, no flyaway hair for my men!

As I began Rich’s barbering, there were two tiny raised bumps on his scalp. Little cysts that I said casually he should have looked at. A few weeks after our return from the locks, islands, bays, passing cargo ships, lighthouses big and small, swimming, fishing, cooking and stargazing into the night, Rich had those cysts removed. The surgeon said they looked like nothing to be concerned about. That single page report begged to differ.

We’re now seventeen years since that trip on the river. The one little piece of paper has grown one by one, and now forty-four of those problems have been addressed. Like that river we boated on in 2003, Rich keeps on keeping on, sometimes with a bit of a stop and wait like the locks along the way.

In a few weeks, what we hope is the last of these problems will be taken care of. Rich has had a left bundle branch blockage since he ended his first rounds of chemo in 2004. It was never really on our radar until it was discussed that heart issues can come from the chemo proposed in 2014. Anyone who has been a reader here, knows that the last two years, that LBB has been problematic and compounded by the beneficial poisons that brought Rich to remission.

Our doctors have been talking about giving our former Borg an implanted CRT-D device which is a combined pacemaker/defibrillator for a couple of years. CRT stands for Cardiac Resynchronization Therapy… it works to get the heartbeats from the ventricles to work in sync. In this case, the D indicates a defibrillator is part of the package as well.

When he had his ketamine infusions this May, our pain relief guru shook his head and consulted with our cardiologist… “his heart wants to go into a-fib, but then it refuses to.” Ever the fighter!

A couple of weeks ago our patient ended up in the ER overnight from a combination of factors affecting a combination of his issues. A hot day, congestive heart failure, gardening work, reduced kidney function, sweating, how much water intake was viable… a fine line of where the tipping point involves several decisions. Staying outside in the heat, doing just a bit too much yardwork, drinking the limited but recommended amount of daily fluid yet not accounting for sweating brought Rich’s blood pressure down to 71/41. We tried to bring back up but he needed a bit more than we could provide at home. This time, even the walker couldn’t get him to the door; our doctor arranged for an ambulance. We had immediate thoughts of another TIA, but what it boiled down to is that his LBB is making his heart work too hard against himself.

That ER visit showed that now it was time for Rich to go full on Borg again. In two weeks, his loop monitor will be removed, and the CRT-D will be installed. This pacemaker/defibrillator will help his left and right ventricles beat at the same time. That LBB will not be able to have that little blip where the left ventricle doesn’t quite contract at the same time as the right. Resistance is futile!

In the meantime, we’re working on getting the little room on the first floor set up as a neutral level place to relax and recuperate. Testing is in progress now as Rich is a little more tired, a little more out of breath, retaining a little more fluid. Thankfully, we can now release it into the beta level… planning our meals out and figuring which streaming platforms might be fun for after. Because, ya know, there’s always an app.

TIA: Thanks In Advance

There has always been a certain serendipity to our journey that started in 2003. Moments when I was exactly where I needed to be at a very specific nanosecond of time. Moments when Rich ultimately was in distress and would have been alone if I hadn’t changed my plans for no reason I could have explained.

One such moment was this past week.

As we have been sheltering in place since the Covid19 pandemic hit New York in March, we’ve turned to tasks and projects around the house that usually get tossed on the back burner when the spring weather draws us elsewhere to join with family and friends for holidays and gatherings and outdoor activities. Slowly has Rich been clearing, cleaning and organizing the workshop in the basement. On this particular day, he set himself the task of labeling various tool cases; drill bits, chisels, socket heads. Certainly not tiring, playing with a label maker.

You would think that spending eighty-three days of covid lockdown we would be bumping into one another throughout the day, but as I work remotely from home, I’m in an upstairs bedroom/office. My usual schedule is to grab a bite and continue to work through lunch, emerging at 5pm to join the rest of the household. For some reason, I left my desk and went downstairs to sit with Rich in the porch.

He seemed tired and his words were a little slurred as if his tongue was thick. I advised him to stay hydrated and drink a little more on this warm day. It’s a thin line we walk with congestive heart failure and kidney failure- the line between too little and too much water. With not enough hydration, his blood pressure drops so we decide that we need some information. First I ask him to use his loop monitor wand to tag this moment on his implanted monitor as an event. We check his blood pressure and oxygen levels. And another adventure begins.

From 226/129 to 84/43 his BP is all over the map. Rich becomes fascinated with the numbers and keeps hitting the button to take another reading as the roller coaster of results continues.

His O2 monitor shows a reading of 99 and we’re content. Until it then drops to 77 and then back up to 96… another roller coaster.

Rich’s phone rings; our order from the local shop is ready. He stands to get payment information and barely makes it into the next room. I finish the call while he sits. We both wonder what is going on. It’s time for the ER.

Suddenly he complains of a headache. It is the first description he can give me of how he is feeling. His response until then is “I don’t feel right but I can’t explain it.” He has to use a walker to get out of the house. His legs don’t want to hold him.

We are so indebted to Amy who doesn’t hesitate to take us to the ER despite being unable to socially distance in the car. Rich’s numbers are still fluctuating wildly throughout the ride.

Like everything, it seems, covid has changed this ER from what we are used to. Masks have always been present, but it is eerily quiet. Social distancing at its best. No one wants to be here regardless of how badly they’re feeling. But most telling, when Rich and I complete his intake and he’s taken to be seen, I’m asked to leave. I’m given a number to call; they have my cell to call me. And the waiting begins.

From the very beginning, Rich and I have taken this journey together. However long he was in the hospital, I slept in the same room; whether on the floor or on my various broken vinyl recliners, I was there. It was the oddest feeling to walk away and leave him behind. In my place, he grasps our red book that holds all our notes, calendars, business cards, meds lists, latest reports… all our records of who what when where how. With Rich’s confusion, it was his lifeline to being able to answer the questions he would be asked.

Throughout the day I’m called to answer the parts Rich can’t remember and aren’t yet in our book… what happened today. I’m told they did bloodwork and a CT scan. They’re waiting for an MRI. I find out later they also download the recording from Rich’s loop monitor to check for the event moment he marked.

His web portal pings on my phone. He is covid negative. I keep refreshing the portal hoping for more results. And I wait.

At 10pm, the nurse calls to discharge Rich. I ask to speak to the doctor; I still don’t know any of the outcomes from the tests. At this point, the doctor who has just come on shift is unaware that the loop monitor readings have been reviewed. The disconnect being home instead of with Rich is thrown into sharp relief.

The tests have shown that Rich has had a very probable a TIA: a transient ischemic attack. The doctor explains that there are two areas where microvascular irregularities were detected. The transient or temporary near blockage was the cause of the weakness, headache and slurred speech. We are thankful to hear that there is no lasting damage. This warning is again serendipitous. Usually undetected or unnoticed, these TIA are usually an indicator of probable massive strokes in the future. This micro stroke is more than enough for us, thank you very much. But, ya know, thanks for the heads up… thanks in advance.

Now we add another specialist to our list of gurus and some new prescriptions to our list of meds.

Despite the lateness of the hour, Rich is standing around waiting for us outside the ER doors; looking for Amy and I to arrive. He looks and sounds as robust as he was in the morning as if nothing had happened.

Thank you, Universe. We accept this warning with much gratitude as we settle down for much needed sleep in our own bed. Together.