A Life Interrupted and Then Somehow Regained

While I am finishing the post  "Falls and Stroke Survivors: Sooner or Later, Don't Be Surprised If You Tumble," I had to write something in the meantime because...well, I had to. 

Brain post stroke

I am still in the hospital for one more day. Blood clots in my leg. And lung. I have been here for what seems like a long time. Truth is, 2 weeks is all. I have seen some things that you don't want to see. Ever. It was a reminder, how I reacted to therapy, hospitals. I met all of them in therapy, and they were stroke survivors. Confused, unhappy, filter-less, poor judgment stroke survivors.

The man who didn't know where he was in space and time. He was fixed on looking to his right and the therapist put the plastic cones on his left. He saw the box that used to contain the cones on his right. But the therapist had to gently push his face to the left in order for the task of replacing the cones in the box to be accomplished. The patient therapist and the man who only saw to his right. It was me. 

The woman who was crying. Her mouth always in a frown. The therapist tried to make her laugh, something about if she touched her feet, she would giggle. The patient managed to give a half smile and then cried again. A family member talked to her in a hushed tone. More crying. It was me.

Another woman who wanted to share in my therapy. She was churning on the Nu-Step. "Do the cones falling down mean that it's bad for Joyce?" "Uh oh, you missed getting it on the ring." I knew what it was. No filters. But the therapist told her to keep pedaling on the Nu-Step. That it didn't concern her. It was me.

Still another woman who always wanted to get up from her wheelchair. She was belted in but still, she wanted to go. Anywhere. The therapist threatened her, that if she was trying to stand up, the nurse would put a buzzer beneath her wheelchair cushion and bed that would bring everybody come running. It was me.

Fact is, you can see yourself as you are now--clear-minded, joyous, level-headed, sensical--how much progress you made, only by looking back to where you were. It is me.

You. Never. Know. aka The Shit Misses the Fan

I wrote a post called "The Chances of Getting a Second Stroke, aka Who Me? Worry?"(http://stroketales.blogspot.com/search?updated-min=2015-03-01T00:00:00-05:00&updated-max=2015-04-01T00:00:00-04:00&max-results=1) with the mindset that I was past the 5-year danger zone of getting a second stroke when the 6th year post-stroke approached. 

I bought an exercise bike, learned how to stretch, and used leg weights religiously. I ate healthy, was energetic, and kept my post-stroke hospital weight (size 8-10).

But the trouble started about a year and a half ago when I moved to Pittsburgh and saw a well-known hematologist. He told me, in no uncertain terms, that some doctor, a long time ago, should have taken me off of Coumadin [a blood thinner]. 

So in three days, I weaned off of Coumadin and I was free--no more weekly blood monitoring, no more foods to avoid like cranberries, leafy green vegetables, and a lot of Vitamin K. 

But on Wednesday night, April 22, my knee was swollen, I was more tired than usual, and I was randomly winded. I attributed my swelling to too much exercise (no pain, no gain, right?), my fatigue to too much activity (shop 'til you drop), and my breathlessness to allergies (wheeze, cough). 

My knee was getting increasingly worse, and now it was crimson and warm, my whole leg swollen. Fatigue and breathing difficulty continued, too, through the weekend. I went to the internist on Monday.


"If I were to take an educated guess," she said slowly and paused, as if she didn't want to give me bad news, "I would say it's a blood clot. Go to the hospital and take a Doppler."

Color ultrasound showing blood flow

Of course, I knew what a Doppler was. I had a few of them. The Mayo Clinic defines it best: "A Doppler ultrasound is a noninvasive test that can be used to estimate your blood flow through blood vessels by bouncing high-frequency sound waves (ultrasound) off circulating red blood cells." (A regular ultrasound can't show blood flow).

I went and it was, just like the doctor had educationally guessed. But there was more. On the advice of the ER doc, I took an ultrasound of my lungs and his educated guess proved right, a clot that traveled to my lungs called a pulmonary embolism. I had the vena cava (Greenfield) filter from the stroke 6 years ago, but it only takes care of big clots. The small ones get away and travel, to the lung or brain, for example. 

The hematologist said the clots must have been from the painful flexor tenotomy (http://stroketales.blogspot.com/search?updated-min=2015-04-01T00:00:00-04:00&updated-max=2015-05-01T00:00:00-04:00&max-results=2) that I had 3 weeks ago when I laid on the sofa for days. But who really knows? It was just another educated guess.

So the takeaway is this (do you see the pattern?): don't do as I did.
1. If you have swelling, redness, and/or increasing heat on any part of your body, especially your legs, don't diagnose yourself with an uneducated guess. Go to the ER or call 911.
2. If you're more tired than usual for no particular reason, go to the ER or call 911.
3. If you're breathless, go to the ER or call 911.

I've been in the hospital for 5 days and counting. I am expecting I'll be here for 2 or 3 weeks. My balance is good, but my endurance sucks. So they transferred me to the in-patient rehab floor where I'll build up to where I was.   

Bad news: blood clots suck. Good news: I'm still writing this blog. And I'm back on Coumadin to keep the clots from forming again.

The hematologist said, "I made a mistake in taking you off Coumadin. 

I was tempted to say, "Fuck, yeah!" But for once, I kept my mouth shut. 

Question: How often do doctors admit they made a mistake? Answer: Rarely to never! I was glad he admitted it. And that was enough for me, making me believe, once again, that doctors sometimes don't know what the fuck they're talking about. Just educated guesses is all.

The AFO and Toes, aka There's Nothing Cute about Curly Piggies

 

I was in the 7th grade of Junior High School (they call it Middle School now), when I first learned from Lydie Miller during a pajama party that I had funny-looking feet--teeny, tiny toes like my rather portly father and sharp bunions like my mother.

Tweens are more sophisticated today, with conversations about getting higher on E, listening to the "good kind" of rap, or deleting unwanted photos on Instagram. But 54 years ago, it was feet. It wasn't the first time that I said, "I have rotten genes."

Anyway, Lydie was right. After that bit about my feet, I never exposed my toes to strangers again. I always wore shoes, never sandals, to the pool, and covered my feet with a towel. On the beach, I dug my toes into the hot sand. I had my bunions straightened, but there was nothing I could do for the exceptionally short toes. That realization changed my being. I always stare at feet to evaluate them: better or uglier than mine. It's a slam dunk. "Better" always wins.

After the stroke, the only news that made me happy was I could only wear sneakers. My toes' secrets were safe forever.

I was fitted for an AFO (ankle/foot orthotic) somewhere around the middle of my 15-week stay in rehab. But somewhere after the 5th year post-stroke, I learned of a new problem with the AFO. My 2nd toe began to curl, so much so that it inhibited my walking at times.

It's not a new problem. Just new to me, and probably you, too.  

Dr. Stanley Beekman, a Cleveland-based DPM, did a flexor tenotomy (cutting the tendon of a metatarsal) on many patients wearing an AFO post-stroke, or anybody who suffered a brain injury of a different sort. 

He said in 2005 (the brackets are my interpretation], "Patients post-CVA do not have a normal [forward-walking] gait, and therefore do not need the digital flexors to [lift off] the ground at push off to off-load the metatarsals because there is no push off. This is why this procedure will work in this situation." This procedure, the flexor tenotomy, will work on hammertoes and other lower-digit problems, too.

In 2008, the Podiatry Institute said, "The simplified technique [flexor tenotomy] utilizes an 18-gauge needle to perform the surgery but does not require suturing and the patient may get the foot wet the next day. 

"This technique is performed in the office under a local digital block. After the digital block is performed and the toe prepped, the same needle used to draw up the local anesthetic to administer the digital block can be used for the surgery. An adhesive bandage is often the only dressing required postoperatively."

If you want to see a video of the procedure that takes about 30 minutes for 1 or 2 toes, watch this: https://www.youtube.com/watch?v=GHx8-GyHhcQ 

So I did it--flexor tenotomy--and I didn't see a thing, aka blood and gore. My foot was elevated to shoulder height and the 2nd toe had the tendon cut.

Just like the Podiatry Institute said, I was up and about in one hour. The pain: minimal. The result: it's too early to tell, but my toe is straighter than it was. And for me, I'm walking faster, and that's good enough for now.