bwdarrius的部落格

On Sunday AM Nov. 5th, 2006-a beautiful clear day, as I was driving to church it was as if I
suddenly drove into a downpour. My windshield appeared flooded, my eyesight had blurred
so badly that the road and traffic were barely distinguishable. I turned slowly around and
made it home. The blurring stopped later that day but I had double vision and I wondered
"What was that all about".

On Monday morning on my 2 mile walk (another clear day) I looked up at the full moon
settling in the western sky and distinctly saw two moons.(2 moons apart) and my right
eyelid was droopy. When I got home I called my cardiologist office to report it and Dr. Estes
returned my call a short while later and told me to "Get in here, right now".

At first glance, when I arrived there he said "you look like you have had a stroke", and
immediately ordered an E.K.G. The E.K.G did not indicate a stroke so he ordered A M.R.I.
which I had that same day. The M.R.I. did not indicate one either so he arranged for me to
see a Neurologist (Dr. Ken Jordan) but the appointment was not for 2 weeks.

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The next morning I went into tell my supervisor (Rosie) at CRYROP that I would probably
not be working for a while and as we were talking my speech totally failed. she panicked
and called an ambulance. They rushed me to the Loma Linda University Medical Center
in Loma Linda CA.

L.L.U.M.C.
There was a very quick response to receive me there. I don't think the diagnostic testing in
the emergency room could have been better. I was impressed with their every move. My
bedside was buzzing with activity. Dozens of doctors, nurses, aides, therapists, and
technicians had become involved. Before it was all over I had blood samples, X-rays, I.V's,
scans and vital organ checks. Then there were dozens of questions which I answered on a
clip-board with a pencil because I could not speak.

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One of the tests was an injection (I.V.) of a mixture of a saline solution and Mestinon which
was supposed to correct the droopy eyelid. It did briefly and that gave them their clue.
They made me feel very special.

When it was finally over, they concluded that it was "Myasthenia Gravis" and gave me the
phone # of a neurologist to call to schedule a recovery program. Then they released me.

By now my speech would come and go and my swallowing was growing more difficult.

I called the number and got a recording that told me that they would call back in 48 hours.
My situation was approaching 'melt-down', my speech, swallowing and vision were all
severely impaired. I could not deal with A long wait and decided that the 1 1/2 week wait
remaining to see Dr. Jordan would probably be the best choice.

Redlands Community Hospital
The next day another attack occurred. I was taken by ambulance to Redlands Community
Hospital. There I waited about 20 minutes or so before I was pushed into a station. Then A
male nurse recorded my vitals and prepared me for an I.V. I waited A long time and would
ask every nurse or aide that passed by when help was coming and I was told "Soon".I had
the feeling that they thought that I was some kind of "Nut Case"
I think I waited about 2 hours before I was told that I had Conjunctivitis (Pink-eye) and was
going to be released. I had no ride, I could barely talk, I had difficulty swallowing and I had
very little money on me but they called a cab and told me to go, Redlands Community
Hospital reminded me of a huge abandoned warehouse, with A few speculators "casing" it
for possible use.

Back to S.B.M.G.
As the day progressed the condition worsened and my friends across the street from my
home came to my rescue. They took me to the San Bernardino Medical Group to see my
Cardiologist. (Dr. Estes). When he saw my condition he arranged with my Primary
Physician (DR. Awan) to admit me to St. Bernardine Hospital Emergency for treatment.
Dr. Awan prescribed Mestinon (as directed by the neurologists office) to partially contain it
and I was released. During this time my speech was slurred, my eye-sight impaired and my
swallowing restricted but I managed to get by. It was a long wait to my appointment day with
Dr. Jordan on Nov. 27, 2006.

My three main areas of concern were swallowing, speech and vision and the Mestinon
partially restored the functions in those areas during that wait, which was a whole lot better
than being totally dysfunctional and it was during that period that I really became
acquainted with the "Monster". It never, ever let me forget that it was in control.

Swallowing: It often took two or three or more attempts to swallow a small bit of saliva
(because I could not spit) and at other times it might be easier. Then I discovered "Boost
Plus", A very delicious, nutritious and easy to swallow food product. I sustained me for a
couple of weeks.

Speech: Once in a while, I would start out speaking clearly and in the middle of a sentence,
then my speech would cut off again and I would need to finish with A pencil, paper and
clipboard. I carried these with me at all times and have A stack of notes that I wrote on
them.

Vision: Before the attack, I spent hours on the computer each day. I designed 3 web-sites
and used the Internet to gather information for various educational projects but for 3 or 4
weeks after the attack I didn't turn the computer on at all. There was no use, I couldn't see
the monitor clearly enough and I had trouble focusing on even the simplest projects. I had
great difficulty managing with one eye but there were some chores that I could not avoid,
there was no one else to do it:

Going to the store-The only things I needed were "Boost Plus", soups, paper towels,

tissues and bathroom items but they were essential.

The Post Office-I still used the Post Office for all my 'important' mail.

The pharmacy-for prescriptions and other support items CVS pharmacy proved to

be everything they claimed to be in their T.V. commercials and I relied on them A lot.

So I would put A patch over my right eye, slip on A pair of dark glasses and drive very, very
carefully to my destinations.

The rest of the time I stayed confined as much as I could. My 15 year-old son and his
mother came to visit me about once A week but I felt so much like A freak that I felt as
uncomfortable with them as I would have with A stranger.

I also discovered something else, I had so much gas build up inside of me that I always felt
bloated and that may be why I never felt hungry even though I ate very little. (I had lost 21
pounds in 40 days). I never realized before how precious those sneaky little burps were
until I couldn't do it for several weeks. A therapist at the hospital told me to try a
carbonated drink so one day I did and VIOILA! I had to rush to the bathroom and got rid of
a months supply of gas-from both ends. It was heavenly and my appetite returned.

And then the big day came-my appointment with Dr. Jordan. I expected A lot and got A lot
more than I expected.

Nov. 27, 2006- Dr. Jordan
I was taken by the receptionist to the room where Dr. Jordan would see me. He was a very
busy man.I waited about 15 minutes, then he stuck his head in the door and said that he
had an emergency and would be with me soon. About ten minutes later he stuck his head
in the door again and said that he had another emergency and it would be a few more
minutes and he added "But, I know what your problem is and we are going to fix it"

I said "Good, take care of your emergency".

Finally, he came with a clip-board and a stack of papers (records of all of my accumulated
tests). It was obvious that he had reviewed all the test data already gathered, very well.

He began with "The consensus is that you have 'Myasthenia Gravis' and I tend to agree
but first we need to admit you to St. Bernardines Hospital for further diagnostic testing.
It will take six or seven days. You will be getting an I.V. of Intravenous Immune Globulin
for 5 days for down regulation of anti-bodies directed against AChR and the introduction of
Anti-idiotype Anti-bodies". (All to improve the effects of the medication that would follow).

St. Bernadines Hospital-Diagnostic Testing:
He admitted me that day and the testing began The diagnostic testing at St. Bernardines
must rank at the top. It was precision and so was Dr. Jordans plan. There were many blood
samples taken, several X-rays, E.K.G., Catscan and Sonogram and then my doctor wanted
to do an Iodine scan. I had had one many years earlier to locate a kidney stone and it
nearly tore me up. I thought it was the end. Some years later I was visiting a friend in the
hospital who was in A room with an elderly gentleman that was in for his annual check-up.

He had just returned from an Iodine scan and his doctor told him that he was in 'Top shape'.
He was very talkative and jovial and as we were talking he began writhing and gasping.
He was having a massive heart attack. I have always believed that the Iodine scan caused
it. It scared me to think of having one but I told Dr. Jordan that if he needed it, I would do it.
He decided that he could do as well with A MRI, and I was happy about that.

About the second day in the hospital I was the sickest that I could ever remember being in
my entire life and it was not my teams fault.I wrote the 3 doctors A note telling them how
much I appreciated what they were doing but I did not tell them that I was losing hope. The
monster literally had a choke-hold on me and was tightening it's grip. I wrote my 15
year-old son and his mother A note advising them how to handle my meager estate and
then told God "If you want me to make the transition now, I am ready". And I put it to rest.

It must have been about the same time that the medications kicked in because the next day
I began to gain new hope and from that point on I thanked God for the progress that was
being made and the testing went on.

On the 7th. day the testing was finished and I was released to go home. The tests had
proven that I had "Acute Myasthenia Gravis" and the recovery plan had been drafted. I
would be carrying it out myself at home.

Then I messed up--big time.
There were periods of time when, without provocation, I would begin salivating profusely.
When that happened my upper denture would come loose and drop. I never wanted to be
seen like that so in order to avoid it I purchased a popular brand of adhesive to keep it in
place. This brand had for many years helped millions of people to look and feel better so
my ensuing problem was not a product failure but my mis-use of the product. Two or three
times A day I would need to add it to my denture to keep it in place. What I did not realize
was that part of it was disolving and coating the inner lining of my throat and because of A
constant need to swallow. (My uvula was dangling so far down that it was touching my
tongue and that caused the sensation that there was something there to swallow. Then
swallowing forced the dissolved adhesive to enter and coat the lining of my throat. It got so
bad that I could not swallow at all. When I figured out what was happening I got down over
a toilet stool and tried to force it out. For the first 5 minutes A pink substance oozed out
(the adhesive) and for the next 15 minutes phlegm and mucous oozed out. There was no
vomiting. By then my throat was raw and swollen shut and the attack that followed was
grotesque. My mouth gaped wide open, I could not close it. My tongue grew stiff and
paralized. I salivated profusely and could not spit it out or swallow it. I had to stuff paper
towels in my mouth to absorb the saliva.This lasted for about 5 or 6 minutes and then
subsided.

I went across the street and asked my neighbor (by writing on a clip-board) to come over to
my place and call my doctor. My doctor quickly called back and told me to meet him at ST.
Bernadines Emergency admissions. There they immediately gave me two shots, one to
reduce the throat swelling and the other was the medication that I usually took orally but
could not now. Then told me to sit down and wait till I could sip water. About an hour later I
could sip water so my doctor was called. He came quickly.

The doctor recommended that I be admitted to a convalescent hospital until I could
manage on my own.

The Conv. Hospital:
I will not mention the name of the hospital because it is a dark chapter in my whole
experience but I will say this:

Each day that I was there I grew weaker and more despondent.
I did not get one single 3-hour stretch of rest or sleep while I was there.
On the night shift, the staff had plenty of 'canoes' (staff) but a critical shortage of 'oars'.
(direction) For the staff, it sounded like a "Happy Hour" was in progress all night long.

Only one amusing incident occurred the 7 days that I was there:

One evening a rather attractive nurse with A stethescope came to my bedside and
asked "Are you Gerald Schroeder"$%: I said "Yes". She said "I am your nurse and I am
here to take your vitals". I said "OK". She then asked "Do you walk to the bathroom"$%:
I said "Yes". She took a note pad out of her pocket, wrote "Yes" on it and left.
(End of vital statistic check) That was sort of the way the whole operation went.

On the 7th. day I had an appointment to see Dr. Jordan. I asked him to release me from the
confinement. I told him that I could do much better on my own and he agreed. He released
me that day. It was the 13th. of December. I got home about 4:30 P.M. The first 16 hours at
home I slept 10 1/2 hours Only interrupted to take my dosages. It was so quiet that it was
heavenly. I could quickly fall asleep anywhere I rested my head. I was all alone for the time
being and loving it. The positive changes from that time on were dramatic.(Prednisone had
been added to my medication).

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Christmas Day
12 days after my release from the con-hospital was Christmas. What a glorious day! I
was back on the planet, I started to feel whole again. I could sip (through a straw), I could
spit, chew, swallow talk, watch 2 hours of newscasts plus "Jeopardy" with-out split vision or
droopy eyelids and I could read my e-mail without glasses.I was alone most of the day and
did not mind it at all. All the new gifts that I had received from God made it one of my best
Christmases ever.

Dec. 26, 2006
I had my second post-hospital appointment with Dr. Jordan. He was happy with our
results and he had good news. He said that after six months of treatment M.G.
usually goes into remission and that dosages could be cut back. (I had originally
been told it would take 6 to 8 months to get it under control).

I feel right at this moment (56 days after the initial attack) that I am 2/3 of the way to
total recovery.

I have a marvelous team of 4 on my side, my Primary Physician, my Cardiologist,
my Neurologist and God.

The progress that I am making now is predictable and steady. I am expecting the
best (God willing, of course) and I hope that I can help to encourage and inspire
others that may be facing similar crises in their lives.

I