Jul 28, 2014

Ho Hum: Life in the Hospital Is Mostly the Same, Except Sometimes....

The most famous definition of "crazy" comes down to doing the same things over and over again and expecting a different result. I think I am borderline crazy.

When I first go in the hospital, I think that I have a few days off, a vacation of sorts, but then I realize, no more than a half an hour in, that I want to be some place else other than the hospital. It's not the hospital's fault. I own this one.

Here is what happens every time: the nurses, due to liability issues (their liabilities, not mine), take vitals--that is, listen to my chest, take blood pressure with the cuff, and record my temperature--every 4 to 6 hours, especially when I first come out of surgery. Then comes the phlebotamist (some people say "vampire") to take the blood samples. The phlebotamists start at 4:30 am. 

Then I attempt to go back to sleep, but the nurse comes in again to check your vitals before she goes off shift at 7am. Then bathroom, dressing, brushing teeth, breakfast, therapy, lunch, more therapy, dinner which is served around 5pm, and I'm in bed by 7 pm. And I am exhausted.

Also, as a patient, I always look the same, no matter what mood I'm in, as shown in the photo on the left. If I'm sad, I put on a happy face. If I'm angry at the nurse, I won't show it, especially because maybe she'll leave out the pain meds and then say "whoops" when I call her on it. And nobody likes to be around a depressed person or one who is in pain or tired. So I hide those emotions more often than not. I don't like surprises so I don't acknowledge them. We already went over the mentally ill part.

So I was surprised, a day before I left the same old, same old hospital, that a break in the routine occurred. I had the lights out at 7 and was watching some television show about country singers when a gangly, middle-aged man opened the hallway door and wandered into my cluttered room. My gut said to me, "Danger, Will Robinson." My gut was the only body part who was talking to me. I didn't hear a peep out of my brain.

"Where's the bathroom?" the man said as he rifled through some clothes in my closet. The only thing I thought of is, I'd have to wash the clothes at some point--all of them. 

Then I spoke. "The bathroom is on the opposite wall," but he went straight ahead to the hospital bureau and opened a few drawers, touching personal items. I'd definitely wash that stuff, too.

The bed and bathroom were all that remained. Fortunately, he went into the bathroom, and I called the nursing station.

"A man just went into my bathroom. I don't think this is allowed because...." I didn't finish the sentence because the nurse already hung up.

Four nurses arrived in the blink of an eye and got the man out of there. I don't know if he was "finished" or not. Apparently, they didn't care.

The man turned around toward my bed. "Thank you, lady," he said.

"Did he hurt you?" one nurse remaining said. Once again, the nurse was worrying about her liability. I can't blame her. Jobs are hard to find in this economy. The nurse continued. "He just had a stroke and he didn't know what room was his."

"No, he didn't hurt me," I said, sorry that I called the nurses at all, considering that he was now a member of the infamous club.

Wake Up, Stroke Survivors, Before It's Too Late to Do Anything!

Nobody told me about tendon transfer surgery while I was in New Jersey. Or Philadelphia. Or what I read on the Internet. So what is it? 

Tendon transfer surgery may be needed on the hand and/or foot if muscle function has been lost due to a disorder of the nervous system, like stroke. 

You probably read my post called My Upcoming Surgery for Foot Drop, aka My 50/50 Gamble.(http://stroketales.blogspot.com/search?updated-min=2014-06-01T00:00:00-04:00&updated-max=2014-07-01T00:00:00-04:00&max-results=3)

Well, I had tendon transfer surgery, by Dr. Dane Wukich at the University of Pittsburgh Medical Center (UPMC), two  weeks ago. This is the first time I could write about it to all of you because of the ongoing pain that should slow down in another two or three weeks. The surgeon called it successful, but here's the detour he had to take because he encountered two problems:

The tendon, when he got to it, was atrophied, meaning that the tendon lost the power it once had. I was 5 years post-stroke. Here's a picture of what it looked like:



Also, the bone around the tendon was too thin to safely transfer it. I had osteopenia, a step before osteoporosis. 



So the surgeon cut the tendon rather than transfer it, allowing my foot to be flat. (The tendons shorten after a stroke from non-use). That's good enough for me. I still can't wiggle my toes, but it was worth it, not having drop foot any longer. It might take more than a year to discard the brace, but at least there is hope.

Again I ask, why didn't some doctor tell me about tendon transfer surgery before it was too late to do anything?

Folks, if you had a stroke or know people who had a stroke a year ago or less, investigate about tendon transfer surgery. You'll be doing yourself or them a great favor before it's too late, and before atrophy sets in.

Jul 13, 2014

The Day Before My Self-Elected, Drop Foot Surgery

My grandmother, on my father's side, was born in Russia, circa 1884. She escaped to Paris for 6 months to avoid the Russian pogroms, primarily aimed against the Jews, in the late 1800s. And then, when she found a ship going anywhere but Russia, she settled in Canada. If you asked my grandmother about her nationality, given that there were a few choices, she always said that she was French because she learned the language or, at least, enough to get by. 

Sarah Bernhardt
While in Paris, my grandmother saw Sarah Bernhardt, known as "The Divine Sarah" for her flamboyant roles, on the Parisian stage a few times when Grandmom was very young. That's where my father got the idea, from his mother, that as a teenager, I was the dramatic Sarah Bernhardt, as he addressed me, complete with exaggerated expressions, dramatic entrances and exits, and sullen moods. As nicknames went, it wasn't so bad.

Anyway, I outgrew the extreme behavior patterns at twenty, right on schedule, not being a teenager any longer, and my life went on. I had a stroke in 2009, and the Sarah Bernhardt-isms returned, less dramatic but still there, like this picture I posted in Facebook about my operation tomorrow:


Everybody said I was brave and/or out of my mind to have an operation that would correct my drop foot. And that got me thinking: I was brave, but was I out of my mind?

I used to be a runner, and like most runners everywhere, I dreamed of running the Marathon. The drop foot surgery, if successful, would allow me to rotate the foot and ankle, where now, my foot always hangs there, like it's lost the fight. It might take me a year or more and a tad of money for a trainer, but the Marathon is on my bucket list, and so are square and round dancing and taking lengthy strolls. So "out of my mind"? I don't think so.

I write this post the day before my surgery because, well, who knows, from one second to the next, how "it" will go? The risks of surgery are hideous; for example, reactions to the anesthesia including anaphylactic shock or rashes, infection, vomiting, dizziness, and yes, but not likely, even death. But how can I not go through with it. I may not have drop foot any longer,  and that means I could shed the brace forever within the year! 

A little more than 24 hours to go and I'll be on the operating room table, knocked out, surrounded by the surgeon, the residents, the  anesthesiologist, the nurses.  I am going into surgery calm, collected. I'll keep a diary to share with you as soon as I can.

But even now, once again, I ask myself about the surgery, "Are you out of your mind?" 

And the answer to myself doesn't surprise me because it's always the same: "I don't think so." 

The time is ticking down, seemingly fast.





Jul 3, 2014

How Two Legal Drugs Caused My Hemorrhagic Stroke

Pittsburgh, PA, is the magical land of good health where people embark on a journey just to be here, with Pittsburgh's reputation of new discoveries and treatments. Just today, I heard about a doctor who gave a man an artificial lung machine in a unit no bigger than a BLT sandwich.

Pittsburgh is where I found out stuff I didn't know, like my upcoming surgery on July 14 with the famed Dr. Dane Wukich, foot and ankle expert extraordinaire, to correct my drop foot, (or foot drop), where the tendons and muscles are not working enough to pull the ankle up. I want to run the Marathon--any Marathon--so I have to get my ankle working. (But that's another story for another day).

Today, I learned even more stuff. I took Coumadin, the blood thinner, from the start of my stroke over 5 years ago until now. I had loads of doctors then, and the communication between them was, at best, lousy. So I was on Coumadin until today when the well-known hematologist, Dr. Dhaval R. Mehta, who took lots of tests last month, figured out that I didn't need Coumadin anymore.

"No Coumadin?" I asked.

"No, you're done," the doc replied.

"Do I have to ween off of it?" 

"No, you're done," he said again. "Somewhere down the line, you should have been taken off Coumadin," Dr. Mehta said.

I was satisfied with Dr. Mehta's response but not with the last part. Somebody screwed up. But he had all the test results and I listened intently. But there was still a piece missing: why did I have the stroke? I was the picture of health: low cholesterol, low blood pressure, a non-smoker, no diabetes, a runner. So I put together some of my research as well.

This is my own theory. Avelox, an antibiotic, could result in clots as the side effect of that drug. I was in the hospital two weeks before I had my stroke in 2009 for an ear infection. So the ear doctor in Philadelphia put me on Avelox, and as a result, I got clots in both legs and I went to the ER because of the pain. 

The ER doctor admitted me and I was put on Lovenox, a low-molecular form of Heparin, to break up the clots. (Now here's where the story gets interesting). As a result of being on Heparin, I developed Heparin-induced thrombocytopenia (HIT), a serious side effect that may occur when one is being treated with heparin.

HIT can lead to low blood platelet counts, which I had. My platelet count went down to 18,000 and a normal platelet count is around 237,000 per mcL in men and 266,000 per mcL in women. 

HIT occurs in about 3% of people who are treated with heparin. HIT is more likely to occur with use of higher doses of heparin, but HIT can also be caused by very small heparin doses, including the amount used to flush intravenous catheters. So the very drug that was supposed to help me gave me HIT.

HIT is sometimes referred to as “heparin allergy." However, this is not correct terminology because it is not a true allergy. In most cases, the body makes antibodies to protect us from infections. The immune system in some people, for some reason the docs haven't figured out yet, makes antibodies in response to treatment with heparin. 

After the antibodies bind to the platelets, they are removed together with the platelets from the blood stream, resulting in a low platelet count.  Thus, HIT. And HIT can cause bleeding in the brain. Thus, a hemorrhagic stroke. 

Again, it's my own theory. So no more weekly blood tests, now that my taking Coumadin has ended. No more worrying about Vitamin K and cranberries, the substances that determined, in part, my Partial Thromboplastin Time (PTT) blood result. 

I celebrated by going home and having a turkey sandwich without the leafy greens (Vitamin K). Tomorrow, as the celebration continues, I will have cranberry juice. This weekend, I'm going to have some wine. Alcohol wasn't allowed with Coumadin. 

It took me over 5 years to discover that my taking Coumadin is finally over. I am satisfied with Dr. Mehta's decision. And the mystery of why I got a stroke has ended, to my way of thinking. Two legal drugs.... You never know.