Well, this is probably the fourth or fifth blog post I have
started over the course of the last three months. Let's see how far I get this time and if it
actually gets posted. Part of the
initial reason I have not kept up with blogging has been pure laziness. Lately though, fatigue, has been a much
larger factor. Fatigue, pertaining to my
energy level and more importantly, my ability to speak. Speaking has become a lot more difficult for
me over the past few months. I believe
I'm still able to be understood, but the volume of my voice is very low and my
ability to speak more than a few words at a time is becoming increasingly
difficult. Therefore, it is becoming
increasingly frustrating to use the speech to text software because the
software cannot always detect my voice or the words I'm trying to say, which
means I sometimes have to go back and repeat myself several times, which
explains the fatigue. In order to
complete this blog and minimize the amount I have to speak, I've decided to try
a new format. Rather than in a narrative
form, I will try to convey to you through bulleting. It will provide a little less detail (which
may be a good thing), but hopefully allow me to get more information out. Here we go: (The above paragraph took me over
5 min. to dictate, including making corrections and editing.)
November, 2012:
ALS clinic visit. My weight was continuing to
drop (179 pounds) and my progression seems to be happening faster. My breathing and Functional Vital Capacity
(FVC) was low as well (24%).
·
I had lost approximately 50 pounds over the past
two years, while increasing my diet of high calorie foods. Obviously, I did not lose the weight through
exercise.
·
Besides hearing the word quadriplegic to
describe my status for the first time, The conversation during this visit began
to focus on a feeding tube, and possibly a ventilator through a
tracheotomy. As the doctor explained, my
best chance to avoid a tracheotomy at this time, was to have a procedure known
as a Percutaneous Endoscopic
Gastrostomy (PEG),
otherwise known as a feeding tube. By
having the PEG done at this time would give me the best opportunity to recover
from the procedure on my own. The longer
I waited for the feeding tube the more difficult it would be for me to recover
from the anesthesia and therefore increase the chances of needing a
tracheotomy.
·
Even though I was still able to chew and swallow
most solid foods, I was still not getting enough nourishment, primarily because
the process of eating was to tiring. For
me, having a meal was becoming an endurance sport.
·
Ultimately,
I decided on having the surgery and scheduled it for the end of the month. I went into the hospital on the afternoon of
Thursday, November 29 for surgery the following morning. Staying true to form, I told no one about
this procedure, except for family and a few close friends.
·
The surgery was successful and I came home on
the afternoon of Saturday, December 1.
The ironic thing about the whole episode was that I did not eat anything after lunch on Thursday. The
hospital never ordered meet dinner because of insurance will not pay for it
because I was getting a feeding tube. By
the time the mix up was figured out, of course the kitchen was closed. They did find some food for me, but of course
it was not gluten-free. On the day of
the surgery, they do not feed you because you just had a feeding tube put
in. The day after the surgery, they feed
you sparingly to test the tube. Here I
was getting surgery to increase my calorie intake and now I have not eaten for over 2 1/2 days.
Some other interesting notes from my hospital
visit:
·
the ICU unit at Pennsylvania hospital was
awesome and highly recommended. At
times, it felt like I was staying at a spa.
The nurses were awesome! (I even
had a little "Florence Nightingale syndrome" going on)
·
More people saw me naked in the three days at
the hospital then had seen me in my previous 44 years of life. On the plus side, there was no laughing or
snickering, but also, no gasps of amazement or astonishment. I'll take it.
December 2012:
·
on the Sunday following the surgery, I was home
resting. I had a little cold prior to
the surgery. Although it was a minor, it
was a major deal for me. Since my lung
capacity is so low it is virtually impossible for me to blow my nose or cough.
·
I had a tough time eating dinner that night and
went to bed early. Soon I started
coughing/gagging continuously and I was unable to breathe. I was beginning to aspirate. That is basically what happens when you
swallow something and it goes down the wrong tube. This occurred continuously for over half an
hour.
·
This could have been the most scared I ever was
in my life. I asked Tracey to call an
ambulance. The reality really hit home
when they asked me in the ambulance, if I had a DNR. I was reluctant to tell them that I did
because I did not want to go out this way.
All I do from this point forward was to focus on Sydney and Emily.
·
While at the hospital, and I use that term
loosely, my breathing stabilized slightly as they put me on oxygen. They started running the various tests, which
included x-rays of my stomach. After a
while they concluded that I had "free air" in my diaphragm as a
result of the feeding tube and would need to perform surgery to remove it and
put in a new one. Tracey and I both
immediately said no. If I was going to
have surgery, I would go back to Pennsylvania hospital. At that point, the doctor left to call down
to Pennsylvania hospital to see if he could speak with the doctor who performed
the surgery. He then comes back and
tells me that in 15% of cases of where a feeding tube is inserted, "free
air" occurs and will typically go away within 24 to 48 hours.
·
They decide to admit me into the hospital for
observation overnight. The next morning
a pulmonologist comes by, who coincidentally was making rounds on behalf of my
doctor, decided that it was unsafe for me to go home unless I had a
tracheotomy. That was enough. At that point we demanded that I be
transferred to Pennsylvania hospital.
·
I arrived back at Pennsylvania hospital on
Monday night, where I stayed until Thursday afternoon after they ultimately
diagnosed me with pneumonia. By the time
I got home on Thursday afternoon, I was feeling a Lot better.
·
My first visitor that Thursday afternoon at home
was my boss, who asked if she could come visit.
I agree on condition that we do not talk about work. That lasted about 10 minutes.
·
The conversation focused on my returning to
work. I wanted to continue the
conversation upon my return. My boss
wanted to come to the conclusion before my return.
·
I returned to work the following Tuesday,
December 11. By the end of the day, the Director
of Human Resources was in my office telling me that I needed to go on disability
immediately or the district would pursue "unfit for duty" charges
against me. They asked me to work at
home the rest of the week and contemplate my decision.
·
I was left speechless and basically in shock for
the rest of the week.
·
Although I had a restful and enjoyable winter
break with the kids, most of my time was spent with trepidation about my future
and how full-time disability would affect us financially.
·
Highlight of the break was a Disney on ice show
in which several of our friends and their children joined us.
·
To make a long story short, I went out on
full-time disability as of Monday, January 7.
I think this is enough for now. My goal is to catch you all up to May by the
end of next week.
