Good news for Stroke Bleeds

There is good news for people having hemmoraghic strokes.  The clot busting drug, tPa, which was previously reserved for people having ischemic (blood clot) strokes, might become available for those having a hemmoraghic stroke.  Research at Johns Hopkins University School of Medicine is currently being conducted, with good results, on people that have “bleeds.” The amount of tPa is reduced and controlled to a greater degree compared to the amount of tPa given to someone having an ischemic stroke.  The affects of the stroke took several days to resolve itself.  Some of the stroke survivors participating in the study actually returned to work.  The small study is being expanded to a larger group of 500 people.  This is DEFINITELY exciting news!  I think tPa is a wonderful drug and has made its mark on massive stroke.

The aftermath of my stroke

Now, hopefully, you know what having a stroke is REALLY like.  It is the worst experience in your life.  I cannot empathize enough how frightening it is what you go through.   Your lifestyle is totally changed forever; in a flash your family is devastated!   If you do not have long-term disability insurance your family is immediately thrown into financial chaos.  Your children no longer have a normal child life.  Forget about having fun family events.  Annual vacations, spontaneous things like playing games with your kids, attending ball games and going out with the family for fast food on Friday nights, etc, will stop.  All enjoyable family events will immediately be forever cancelled.  Forget about things like going to the bathroom in private.  You lose every shred of humility you ever had.  There are so many more nightmares to talk about.  Most of what I should warn you about is too personal and private!  You REALLY do not want to know.

My wife went through it ALL with me.  My company flew her to France and put her in my hotel for over two weeks.  She would visit me in the hospital everyday getting there around 8 am every morning and staying in the hospital with me each day until after 8 pm each night.  Support is absolutely essential after a loved one has a stroke.

Something else I should tell you is that stroke does not just affect you.  Besides your spouse and kids your extended family is also affected; your brothers, sisters, nieces, nephews, mothers, fathers, in-laws and their families all will be affected.  Oh, and you think you have good friends?  At least 99% of stroke survivors have told me that their friends have stopped coming around.  Many will visit you right after the stroke, while you are in the hospital, but be prepared to lose every friend from coming around.  Your friends will not suddenly stop liking you but chances are VERY good that not one will EVER hang out with you again!  It is amazing how quickly your friends will ALL disappear.

Be prepared for an uncontrollable emotional rollercoaster, too.  Your ability to control laughter or crying at inappropriate times will be lost.  Seriously, it is called, emotional lability.   Emotional lability is totally frustrating and can be very embarrassing.  You will learn to hate the powerful lack of control.  Also, severe depression is common and may creep in when you least need this burden.    Depression for stroke survivors can be very dark and can rule every aspect of your life.  You cannot realize how painful depression is unless you have experienced it.

Bottom line is that having a stroke is permanent.  You cannot reverse the effects of stroke.  You must learn to live with the devastating disabilities that it causes.  I apologize for such a lengthy blog but this was my reality.  Millions of people go through similar nightmares.  According to the American Stroke Association, stroke happens to about 780,000 people per year.  About 5,800,000 stroke survivors are alive today.

Stroke cannot be prevented but you can prevent the risk of it.  High blood pressure is the most obvious sign.  Eating a diet that is high in salt can cause the high blood pressure.  Lack of exercise and leading a dormant lifestyle can lead to being overweight and having high blood pressure, too.  Cigarette smoking and excessive drinking of alcohol also increases the risk of stroke.

Go to http://www.StrokeEducation.info/ for information about stroke.  New stroke caregivers should download and print our Stroke Caregivers Handbook at http://www.strokecaregiver.org/handbook.htm.

Stroke through Post-stroke

After the nurses assembled around me they pinned me down and pulled out a needle.  The shot did not fully knock me out but it took the fight out of me.  I remember several people rolling me down the hall.  They rolled me into another room and transferred me to a hospital bed.  People were all around me working franticly.  I remember someone cutting my jeans off with scissors.  Someone else was hooking up my air supply and somebody injected me with something, which I later learned was Heparin, right below my belly button.  A middle age doctor started talking to me in English with a heavy French accent.  Every five minutes he would ask me to touch my nose with either hand.  The first few times I could do it with no problem.  Each time thereafter my arms grew heavier and heavier until I could no longer move.  I was half asleep and very confused.  I did not ever pass out and was ALWAYS cognizant of EVERYTHING going on around me.  I had a breathing tube down my throat and another tube that went into my lungs to remove the fluids that were quickly building up.  Someone then threaded a tube down my nose for feeding purposes.  Also, my hand was pricked and an IV line was started.   I HAD to be in a unit equivalent to the American ICU.  People were swarming around me rattling off French and did not leave until mid-afternoon when I finally stabilized.

I was living a real life nightmare.  I could not talk, I thought only because I had a breathing tube down my throat (I did not find out that I had permanent speech loss for three weeks), nor move.    I could see and hear and understand everything going on around me.  The only movement that I had was eye movement.  Later, I would learn that this is called being locked-in.  I could understand bits and pieces of what was being said about me.  I had been in France several times and this trip had just started its third month.  I could understand the French language much better than my speaking skills.  What I picked up was scaring me to death.

Immediately after my stroke I could not speak.  While I was in the hospital in France, I had a tube down my throat because my lungs were constantly filling with fluid.  I thought that this was obviously the reason that I could not talk.  Also, I knew that there was a small diameter tube threaded into my nostril, through my throat and into my stomach.  I was awake when they put the feeding tube down my nose and I was angry because it was so uncomfortable.  The doctors put a breathing tube down my throat, too.  I could imagine how I must have looked and I did not like it one bit!  I was ticked off because, in my mind, all of these tubes were unnecessary.  In my mind, I could still eat and breathe on my own.  I was angry that they had forced me to submit while they did all of these things to me without my permission.  Let me tell you the story of why the breathing tube was removed.

On the second day after my stroke, I was woken up early when a gurney was wheeled into my room.  I had no idea of what was going on.  The attendants seemed to know what they were doing and occasionally muttered something in French to each other.  Keep in mind that I was cognizant of EVERYTHING going on but did not have the ability to move anything below my nose.

The attendants transferred me to the gurney, made sure I was covered with a blanket and they guided me out of the room.  They push me out of the room and made a sharp right turn past the nurse’s station.  We went a few more feet and made a sharp left.  We rode down a long corridor and then I lost my bearings.  It is not easy to lay flat on your back on a fast moving gurney and remember where you are going.  Your only point of reference is the ceiling.  I could not even turn my head.  I just remember the halls being poorly lit with individual light bulbs.  The hospital had the feel of being something out of WWII.

We made a couple more sharp turns and then went into a narrow elevator.  We obviously were going down because I heard the whine of the elevator and felt the downward movement as we dropped several floors.  We I could hear the doors open and suddenly I was moving again.  Several dozen ceiling panels passed, as we must have moved straight forward a short distance and then we abruptly stopped.  I heard a male and female voice speaking softly in French and then my gurney was pushed into a small dark room that had a bright light coming from the center.

I was very confused about what was going on.  I had no idea of why I was moved from my room or where we were now.  The only voices that I heard were speaking French and nobody had even tried to tell me what was going on.  The next thing I know I was being transferred to a narrow bed.  Again, I felt myself being covered up with a blanket.  The next thing I saw and felt was a plastic mask being placed over my mouth and nose.  The room went completely dark in seconds and I remembered nothing of what happened next.

I woke up back in my room still on the gurney.  The gurney was positioned parallel with my bed, as if they were about to transfer me back to bed but had suddenly been called away.  I opened my eyes and looked around the room.  The windows must have been open.  A hot breeze was coming across the room.  The hospital had no air conditioning.  In this hospital that meant that every window was ALWAYS open.

I was not in pain but I could feel something hard on my throat and could feel gauze on my neck.  Had I been operated on… without me knowing about it?  Yes!  The bastards had given me a tracheotomy and did not even have the decency to forewarn me!  I was immediately livid with anger and frustration.  I was in disbelief.   What kinds of people were these?  They just gave me a tracheotomy and did not say one word to me about it?  I was also upset that they would leave someone in my condition unattended?  It was almost as if they did not care how I felt.  It made me feel violated!  I had been warned months ago about the French disdain for Americans.  Was this what I had been experiencing all along at this hospital?  My French friends at work were terrific and were generally warm.  The French people at the hospital were cold and unfriendly.  What was next?  I was soon to find out.

Suddenly, a figure walked in and I immediately noticed his black suit and white collar.  I almost fell off of the gurney, figuratively, of course!  My immediate thought was that he was there to administer my last rites.  I could not believe that this was happening to me!  I just knew that I had just had a stroke and was in VERY bad shape; I must be getting ready to die!  To be continued ….

Anatomy of a stroke – part 5

Have you ever stayed overnight in a hospital?  They pester you to death with taking your vital signs every few hours!  American hospitals are no place to rest.  This French hospital was totally different.  They let me sleep through the night and I woke up Sunday morning feeling well rested.  The day went on and was very uneventful.  One of my French friends came to see me as I was finishing dinner.  It must have been around 8 pm when she arrived.  We were having a nice conversation and all of the sudden, out of nowhere, the vertigo started.  She could see that I was in distress so she quickly said her goodbye.  I did not hesitate and dialed for the nurse.  It was only a matter of seconds before the nausea started.  All I had to throw up in was one of those shallow kidney shaped basins.  I did the best I could but still made a mess.  The nurse arrived in about 10 minutes and said what she could to comfort me.  She stayed about 10 minutes and left.  I felt nauseous again after about half an hour.  I called my nurse again and she arrived in my room 10 minutes later.  I had just finished throwing up again.  She comforted me but explained that all of the doctors were off due to the holiday weekend.  The nurse left without really doing anything to help me.  Fifteen minutes later and I was calling her again.  She told me that she could not help me and did not want to make the long walk to my room if she could not do anything for me.  It turns out that she was stationed in a completely different part of the hospital and was only supposed to keep an eye on me.  There would be a doctor coming in at 11 pm and she would have her check in on me then.  Some hospital!  I was ticked off but I did my best for another hour and did not care if I missed the basin or not. 

It was almost midnight before there was a knock at my door.  In walked the doctor.  She was probably about 30.  The French ALWAYS have a way of looking stylish.  They definitely do not have the word, NERD, spelled in their dictionary.  So she comes into my room and I am expecting more of the excuses to not do anything for me when she announces that she is from the neurology department.  She had an excellent bedside manner.  She asked me all about my history in between my bouts of puking.  My head was pounding now and my vertigo was terrible; I just wanted it to stop.  I still was fully dressed and was sweating profusely.  I honestly felt like dying.  By this time it was probably past 2 am.

Between the excessive sweating, maddening twirling, nagging migraine headache and constant retching I could not stand it anymore.   I complained to her that this was too much pain for me.  I felt totally exhausted yet could not get any rest because I was constantly up and down.  I begged for her to give me something that would put me to sleep and let me rest.  The first time I asked she was deadest against it.  I guess my constant nagging made her change her mind.  She said she had to go get the medicine and was gone for about 15 minutes.  When she returned she showed me a needle.  She swabbed my arm with an alcohol wipe and did not hesitate.  In a second she had pushed the drug in.  I do not know what it was but just remember drifting off.

I woke up in the morning from a knock at the door.  I was alone in the room and do not remember the doctor leaving.  I had been sleeping on my right side and my whole side felt like it was asleep; it had a numb tingling sensation.  It was around 7 am.  My two friends decided to visit me on their way to work.  They immediately could tell that something was wrong with me.  The one guy was absolutely furious that nobody from the hospital was with me.  The first thing he said was that we need to let my wife know what was going on.  He picked up the phone and dialed my wife.   France is six hours ahead of us in time zones in the states.  It was after 2 am when he reached my wife.  He told her that I was in the hospital and handed me the telephone.  I explained what had happen and told her I was okay.  Little did I know that nothing that I said remotely sounded like English.  I hung up the phone and had to lie back down.  My whole right side was still tingling and felt really strange.  By this time my friend was freaking out!  He called the nurse and was screaming at her to come to my room and to bring help.  He was very upset and making sure they realized I was in big trouble.  A staff of four people arrived within minutes.  He kept yelling at them to do SOMETHING!  Someone tried to intubate me, which made my very mad.  It hurt like heck and felt like they were smothering me.  My natural instinct was to fight back.  I guess they were prepared for this prospect because someone pulled out a needle.  Just before they stuck me I heard my friend tell the other, “Steve is having a stroke! ” To be continued…

 

 

Anatomy of a stroke – part 4

I lay back down in my bed and was there for another two minutes when I had to throw up AGAIN!  This pattern continued all night until after 6 am.  I would lie down for two minutes, maximum, and be back at the sink for 10.  I finally dozed off at around 7 am but was woken up by a lady dropping off my breakfast.  They gave me a cup of tea and a couple of plain cookies. I was moving very slowly and took my time finishing breakfast.  I was hungry but I was tired of throwing up so I gingerly ate my two cookies and only drank half of the tea. 

There was movement in the emergency room so I poked my head out of the room and asked for directions to the bathroom.  I started walking the halls trying to remember which way to turn.  I was marveling at how old the building looked when I found the toilette.  Toilettes are unisex in France so I did my business while looking over my shoulder and then headed back to my closet.

Actually, I started feeling pretty good.  Have you ever been sick and finally make an appointment with the doctor only to get there and you are suddenly not feeling sick anymore?  That is how I was feeling.  I cannot explain it but it was like I was spontaneously all better.  I just wanted to brush my teeth, take a long hot shower and crash for a couple of hours.  No sooner had I made it back to my room when a hospital attendant poked his head in the door.  He was there with an old beat up wheelchair and motioned for me to sit down.  Off we went down the hall making left and right turns.  I had no idea where we were going but wherever it was we were making good time.

The attendant made a sharp right turn and skidded to a stop in front of a long cylindrical machine.  I was to have an MRI.  Finally, they did something to me that made sense.  What was strange, though, was that no doctor ever came to see me.  I had no idea of who was treating me; I guess Doogie ordered the MRI when he was on duty the night before.   The MRI took about an hour and then speed racer whisked me back to room.

I was not there very long when they came and got me again.  This time I was taken through a maze of corridors and small and dank elevators.  I was pushed into a private room and told that I would be staying for the weekend by a nurse who was waiting for me.  My room was very plain but it was a REAL room.  It was about 15′ x 15′ and had a REAL bed in the middle of the room.  Also, there were nightstands on either side of the bed and one of them had an old black dial-up telephone sitting on it.  The walls looked like they were painted concrete block walls that went to the ceiling.  The window was opened and a warm summer breeze was flowing in.  Actually, my room was very comfortable.  The nurse spoke some English and told me that lunch would be there shortly.    The nurse was French but she spoke English well enough that we could have an intelligent conversation.  She had a French nurse uniform on, which was a loosely fitting light blue and white dress with a white scarf covering her hair.  She looked like a combination of nun and gypsy.  Immediately, I felt secure knowing that she was my nurse.  I felt a big sigh of relief as she introduced me to my room.  She showed me how to call in case I needed her.  This was REALLY weird because I had to use the telephone to contact her; I did not care, though.  Also, she informed me that the doctor said I could take the hard neck brace off.  Thank goodness!  I could not stand how awkward that hard plastic neck brace made me feel.  I was feeling human again, happy that I was not feeling abandoned, like last night, and glad that someone knew that I was alive!

It was almost noon when my lunch arrived.  I absolutely love French food.  Not only was this meal well balanced but the roll and fruit were fresh and delicious.  I was taking a nap when my two buddies knocked on the door and walked in.  These were the same two guys who were with me in my hotel room when I had the TIA episode last night.  They both immediately started teasing me about how bad my hotel room smelled from my puke fest last night.  They told me that the hotel maid had to leave the door to my room open along with the windows.  We all had a good laugh about the poor person that had to clean the bathroom.  I forgot to mention earlier that because I was drinking red wine with my dinner and that everything that came out of my stomach was red.  Sorry, I told you that my story was not pretty!  Anyway, what was funny about this was that the walls of my hotel bathroom were covered with red throw up, which made the clean up even grosser!

I made a list of what I needed from my hotel room and asked them to go get my stuff for me.  I wanted to spend my time in the hospital working.  I had some very important things for the aircraft we were working on and it was my job to verify that it would receive certification from the French FAA.  I had nothing but work on my mind.  There were so many tasks in various stages of completion and I could not afford to get behind in my work.  While they were gone, I decided to take a shower, shave and brush my teeth.  Here is another different thing about French hospitals.  The French hospitals do not supply towels.  If you need towels you are expected to bring whatever you need from home.  I did not find this out until my friends had left.  The nurse must have felt sorry for me and gave me some clean linen to use to dry myself off with.  I only had to wait about 45 minutes and then they were back.  I dismissed them immediately because I had a date with a hot shower.  They brought everything I requested, my briefcase, clean clothes and shaving bag that had all of my toiletries in it.

Oh, another strange thing was that the hospital was so old that the rooms did not have bathrooms in them.  If you had to relieve yourself you had to walk down the hall.  The communal bathroom also had communal showers.  Honestly, I was not really surprised.  The French are very casual about displaying body parts.  After all, their beaches are topless and the commercials display bare boobs all the time.  They even have a pornographic television station.  So I hurriedly took a shower and got myself cleaned up.  I was feeling absolutely marvelous.  It felt so good to get all clean and freshened up.  I returned to my room and spent the better part of the day working out of my briefcase.  I went to bed early.  To be continued…

 

Anatomy of a stroke – part 3

 

The ambulance arrived in about 10 minutes.  It was after midnight when the ambulance attendants arrived in my room.  They do not have paramedics in France.  These were ambulance attendants and their job was to drive me the hospital.  The hotel was a very old building that had probably been renovated during the 60’s.  The elevator was extremely small.  I would estimate that it was no more than 4′ x 4′.  If you ever go to Europe you learn that America does everything big and that the Europeans do things that are practical and do just enough to make things work.  They definitely do not live by the same rules and regulations that we have to.  Maybe, that is why everything is so charming over there.  

Anyway, the attendants knew that they could not take me downstairs in their stretcher.  They took my hotel room desk chair and motioned for me to sit down.  They were planning to carry me to the ambulance in my desk chair.  When I sat down and started wobbling and saw them straining I decided to get back up and use them to steady myself against while we took the elevator downstairs.  I walked to the ambulance and lay down.  The streets of Toulouse are old; some are made of cobblestone and very winding and full of weird angle turns.  The ambulance was small and the ride was full of jerking motions, abrupt stops and gunning the accelerator whenever possible.  I have to admit, though, we made it to the hospital in record breaking time!

I was able to walk into the emergency room by myself.  The emergency room was completely dark.  What I remember of the emergency room was that it was in a wing of the hospital that dated pre-WWII.  The rooms had 8′ wooden walls but the ceiling was probably 20′ tall.  There were about 20 5′ x 5′ rooms in the emergency room ward.  I sat down on the bed and in walks Doogie Howser and a young nurse.  They were all of 20, at the most; neither one of them could speak a lick of English.   The hospital I was in was a teaching hospital.  I think I had two freshmen.

It was the beginning of a holiday weekend for France.  The French celebrate the beginning of summer, which would arrive on Monday.  Everyone had taken the weekend off except all of the Doogie Howsers who got volunteered to work in the real doctors stead.  Doogie looked very nervous and obviously did not know where to start with me.  I started the conversation by pointing to my neck, which had been killing me all day.  He turned to the young nurse and rattled off something in French.  She disappeared for a second and then returned two seconds later with a portable EKG in her hands.

What happened next was almost comical.  Neither one knew what to do with the piece of equipment.  They each took turns studying it and passing it back and forth with perplexed expressions on their faces.  It was obvious to me that the nurse had failed to bring the leads but I was not going to get myself in the middle of these two knuckleheads.  Finally, after much study, they both gave up and put the EKG machine down.  They both shot me embarrassing looks and acted like the device was not needed anyway.  I would have laughed except I was getting more and more frightened because the whole situation was surreal to me.  I was scared out of my wits because I was being treated by dumb and dumber and I was having very real health problems.

Doogie took charge and must have ordered something for the nurse to do because she left and returned with a hard neck brace.  Doogie said something in French that I loosely translated to mean that I had a pinched nerve in my neck.  The nurse put the neck brace on me and then they both quickly disappeared.  Apparently, they were satisfied that they had solved my problem.

I lay down in the bed, with the neck brace on and looked around my room.  I had a single bed, which took up at least 75% of my room.  I noticed a small pedestal sink next to the bed.  I was concerned because my stomach started churning again when I lay down.  I did not have vertigo again, thank God, but my mouth had started getting juicy.  I was back up in a flash with my head drooped over the sink.  I puked in the sink and then lay down again.  I was not down for five minutes when I was back at the sink again hurling my guts out.  What an experience having to lean over a puny sink basin and throw up with a hard neck brace on.  It was strangely awkward and took some training.  I know that my aim was not perfect but I did not care.

It must have been about 2 am by this time.  The emergency room was completely empty and darker than dark.  Nobody was around and nobody was coming at the sound of my heaving noises.  I was left to fend for myself.  The whole night had surpassed the surreal mark.  I could not believe what was happening to me.  I was alone, sick to death, puking my guts up, was in a 1940’s era hospital, had just been medically evaluated by Doogie Howser, my hospital room reminded me of a small walk-in closet and I did not know how to get out of this situation and get back to reality.  To be continued…

 

 

 

Anatomy of a Stroke – part 2

 

The first signs of my stroke happened on Friday at around 6:00 in the morning.  I woke up before my alarm.  The room was spinning out of control; REALLY spinning!  It was not like being dizzy but it was definitely vertigo.  The closest analogy that I can give you is that it was like being on a speeding circular carnival ride except that I was not moving; the whole room was doing the moving.  My head was killing me so I decided to sleep in and tried to bear the wild ride.  Luckily, the vertigo stopped after about two minutes.  This was an extremely frightening experience because I had no control whatsoever of the rapid spinning.  I had had a TIA and did not recognize the symptoms.  

I finally made into work around 8 am.  My neck and head were killing me all day.  We knocked off work around 8 pm and headed back to our hotel.  There was a group of about eight of us over there from work.  We usually did everything together and decided to meet for dinner around 9 pm.  We met at an outside café and I had a tasty dinner of entrecote and frites, steak and french fries.

I had just finished eating when the vertigo struck for the second time.  It was probably about 11 pm on Friday night.  It scared me to death.  Everything around me was twirling wildly.  I asked one of my colleagues to help me back to my hotel room.   I only had to walk about 100 yards but the muscles on my right side would not work.  I was walking like I was totally drunk.  Finally, my friend put my right arm over his shoulder and almost carried me to my room.

I was in my room for two minutes when suddenly things took a turn for the worse.  I was scared to death that I would collapse all alone in my room so I called my buddy and asked him to come to my room, ASAP!  I had not even hung up the phone when the twirling got so bad I could not stand it any longer.  I am talking about extreme vertigo!

My stomach started churning severely.  My mouth suddenly became all juicy.  I knew these were the symptoms of having to throw up.  It was over in a second.  I had made a mad dash for the toilet.  The bathroom was literally two steps away.  I made it to the threshold of the bathroom entrance when my entire stomach contents erupted through my mouth!  The wonderful entrecote, frites, salad, two glasses of wine and the delicious hot fudge Sunday all spewed out of my mouth with the force of a fire hydrant exploding.  Sound gross?  Well, it was gross!  I think I hit every wall in the bathroom.  I have NEVER thrown up so violently in my whole life!

Just about then, two of my buddies came flying through the door.  Both of their faces were panic stricken when they saw me.  There was no doubt in their minds that something serious was wrong with me.  One of them scrambled for the phone and yelled for the front desk to immediately send up a doctor.

The doctor arrived about 20 minutes later.  By this time it was almost midnight.  The doctor spoke little to no English and all of our French comprised of ordering food at restaurants.  We could order dinner really well but beyond that our French stunk!  The doctor made me lie flat on my bed while he took my blood pressure.  If I remember right it was like 160/100.  I know now that is not terribly high but he still looked very concerned.  He had seen the catastrophe in the bathroom.  He knew something serious was happening with me.  He waited 20 more minutes and then took my blood pressure again.  It was unchanged and he grew more concerned.  I made sure he understood that I had a bad case of vertigo.  If I remained very still the room would not spin.  If I was perfectly still I was okay but any movement and the room started twirling.  The doctor called for an ambulance.  I was scared out of my mind.  What was happening to me?  To be continued…

 

 

 

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