The Hospice Experience
A Patient's Perspective
by Larry Taylor
I have been posting on
on the message boards of COPD
International for several years using the name of Larry/ga.
Many of you know me and my story. For those who do not know
me my story will become clear as you read on.
I have recently made a significant change in the
management of my COPD going forward. In short, I have entered
into a Hospice at Home arrangement with a Hospice provider. A
couple of years ago Betty Baareman
published a diary here describing her husband Ken’s Hospice
experience as his caregiver. With CG’s
permission and assistance, I will write this series describing my
experience with Hospice from the perspective of the patient.
If I am not able to maintain the series at some point, someone close
to me will provide updates.
A brochure I was given by a Hospice organization describes
Hospice as follows:
“Hospice comes from
the Latin word ‘hospitium’ meaning guesthouse—usually used to
describe a place of shelter for weary or sick travelers. In the
modern expression it presents a special kind of care for patients
with a life-limiting illness, their families and their caregivers.
Hospice care emphasizes the physical, emotional and spiritual
comfort of the individual for whom curative treatment has been
unsuccessful, or is no longer desired. This special approach to care
is typically provided in the patient’s private residence, but is
also provided in long term care facilities and hospice inpatient
Quoted from United Hospice brochure.
Hospice care is usually expected to last for six months or
less. But this does not mean I expect to live less than six
months. It is simply a number useful for planning. I
feel no different now that I did before entering Hospice. In
fact I am feeling better. Nor does it mean I am giving up.
It is just a recognition that for me
there will be no miraculous cure and that I need more help managing
the remaining time I have than I am able to get with traditional
health care organizations.
For those who may be new to the site or not
familiar with my story I will give a brief background.
I was first diagnosed with COPD in 1993. At the time a
doctor said he was “worried” about my lungs but really did not give much
specific information about my condition. Up to that point in time
I had never heard of emphysema or COPD. I was worried about cancer
from smoking, not emphysema.
I began smoking when I was 15 and first
tried seriously to quit when I was 40. I tried everything to quit
over the ensuing years, but I was one of those who inhaled deeply and
was completely addicted. I continued to smoke for another 14
years after that first attempt to quit. As a result, by the time I
did finally quit in 1999, I had very little lung function left.
I also had developed very severe heart disease from smoking
that also went undiagnosed until 1999 when I had to have open heart
bypass surgery. I was told the odds of survival of the bypass
operation were poor with the severe emphysema. I did survive but
the operation was messed up and I had a heart attack the night of the
surgery that affected the right side of the heart, which pumps blood
through the lungs. The surgery and the heart attack destroyed what
was left of my lungs at that time.
I walked into the hospital on my own power feeling pretty good
with 02 saturations in the middle nineties and was carried out in a
wheelchair two weeks later on three liters of oxygen and barely alive.
I have had approximately 14 cardiac caths
and two angioplasties with stents since 1999
in attempts to correct some of the mistakes of the heart surgery.
Immediately after the surgery my FEV1 was 19% of predicted.
Many people achieve a degree of stability in lung function
decline after diagnosis and stopping smoking. That is, their lung
function declines at a normal aging rate so the percentage of predicted
stays about the same over time. Unfortunately my lung function has
continued to decline both in liters and as a percentage of predicted..
My last pulmonary function test a couple of years ago showed an FEV1 of
8%. That was approximately two years ago. Over the last two years
my doctors have not felt it was worth it to continue to test my lung
function as it has obviously continued to decline as reflected in my
I have been in the hospital approximately 8 times in the last 16 months.
Even when I was not admitted to the hospital I usually had one or two ER
visits per month. I have had frequent extreme episodes of
shortness of breath that are unrelieved except by extraordinary
treatment such as IV prednisone, multiple breathing treatments,
nitroglycerin or morphine that can only be administered in an ER or
hospital. Each hospitalization seems to take a little bit more out
of me. The hospital I have used in the past, where all my doctors
are located is about 25 miles from my home. I usually have to
argue with the ambulance people to get them to take me there for
treatment. They are concerned about getting me to the closest
place that can provide treatment, while I am concerned about going to
the place where the doctors know me, have my records, and treat me the
most effectively. A little over a year ago a new element got added
to this equation. A new hospital that is a branch of a famous
University hospital here in town has been built less that a half mile
from my house.
Also it has become increasingly difficult for me to make the
long trip to my doctors. So we began a year or so ago to discuss
ways to transition me to have adequate physician support at the new
hospital for easier ER visits and hospitalizations when needed. My
pulmonologist suggested I switch to a
colleague of his who is heading up the pulmonary practice at the new
hospital. This doctor also happens to be an internist who can
serve as my primary care physician.
During the Christmas holidays it became evident how important
these preparations were. I became increasingly short of breath,
particularly while eating and after dinner each night. Finally
late at night it got to the point that I just could not stand it any
longer. I had tried everything I had at hand and nothing was
working so I called 911. The paramedics and ambulance people who
responded ruled out any transport other than to the nearest hospital.
They said they were concerned I was just too unstable to risk a long
transport. So they took me to the local hospital. In spite
of some difficulty with staffing due to the Christmas holidays the
preparatory contacts paid off in getting proper care from a medical
group that was at least aware of who I was by then.
Concurrent with these discussions we had
also considered the future prognosis of my condition and how best to
support me as my condition gets worse over time. When I was
hospitalized in January, 2007 my cardiologist,
and I had a long conversation in my hospital room about my condition and
my prognosis. Projecting the future with this disease or heart
disease is notoriously difficult if not impossible. At that time
it was decided that treatments should continue as they were but
recognize that my condition was getting worse over time.
Subsequent hospitalizations in April, 2007 and then again in August,
2007 resulted in an agreement to transition to the local hospital and
suggested consideration of other options such as hospice care at some
point in the near future .
At a follow-up appointment in October, 2007 my
pulmonologist provided information on Hospice
programs that he was familiar with. He
that I begin to investigate some of these organizations for consideration
in the future. He emphasized that it was my decision and he only
wished to support whatever future arrangement I felt was best for me.
Although I had thought about it, I admit I had not done anything to
actually consider Hospice prior to the Christmas, 2007 hospitalization.
During that hospitalization, consideration of Hospice began in earnest
along with evaluating the pros and cons of the organizations that
provide such services. Shortly thereafter, with the early
February, 2008 hospitalization this evaluation became more urgent as it
was evident I could not keep up this frequent hospitalization process.
It was taking too much of a toll and me and my family. So during
my stay at the hospital, with a great deal of assistance from the
hospital social worker, my wife and I began interviewing Hospice
organizations and considering whether the programs they offered were
appropriate for me.
There are a large number of organizations that provide Hospice
care. They range from the very small non-profit organizations to
large national chains. Some of the larger organizations also own
and manage nursing homes, hospitals, and other health related companies
such as durable medical equipment providers. It is a very
competitive business and the companies compete aggressively for
patients. My wife and I discovered the full range of organizations
that wanted our “business”. We tried to pick an organization that
we felt would best treat us as people, not as “business” to be acquired.
We eventually picked a small organization that is building a
new facility within two miles of our house. The facility is
completed but not yet authorized for occupancy. Until such time as
it is authorized for occupancy, they lease facilities from this hospice
www.peachtreechristianhospice.com ). My services will be
provided in my home. I will only need to use the inpatient
facility when situations occur that cannot be adequately treated at home
or require more intensive monitoring than my caregiver can provide.
In addition, I can use the facility for what is called respite care to
give my caregiver a break for a few days. I think my wife will
find this benefit useful to have a little time to decompress from my
HOW DOES HOSPICE WORK
Hospice is a special benefit offered under Medicare Part A and
by most private health insurance plans. Essentially you are taken
off Medicare Part A and B for your life limiting illness.
Part A then picks up the complete bill for your hospice care, including
drugs used in the treatment of your authorized diagnosis. You
cannot continue to go to the ER or be hospitalized during the time you
are on hospice. However, you can opt out of Hospice at any time on
a moment’s notice and seek out aggressive care. In which case your care
is handled just as it would have been if you had never been on Hospice.
Hospice is authorized only for the illness that is expected to
result in your death, even though you may have other illnesses.
You can continue to receive regular treatment for these other illnesses
as they are not considered a part of the hospice benefit. My
authorized diagnosis will be COPD. Hospice will pay for my care
related to COPD and be reimbursed by Medicare Part A for such care.
Care for all my other conditions, such as heart disease will continue
under Medicare Part A and B and drugs for those conditions will be
provided through Part D as is currently done.
The initial hospice benefit is for a period
of 90 days, followed by an additional automatic authorization of 90 days
if needed. Thereafter additional periods of 60 days each may be
authorized as long as you continue to meet the initial requirements for
Hospice participation. The Hospice organization is paid a maximum
lump sum for your total care. Obviously the longer you live the
less they make as they must pay all your costs while alive related to
Most hospice care is provided for cancer patients who usually
enter Hospice in the final stages of their disease. Because of the
difficulty of estimating the life span of COPD patients we tend not to
enter hospice in proportion to the number who could use such services.
We tend to die suddenly without warning after a severe infection or due
to a heart attack or respiratory failure. It is unfortunate more
of us do not take advantage of the services offered by Hospice.
While on Hospice at home, I will no longer go to the ER or be
admitted to the hospital. Instead I will have available a team of
nurses, who are on call 24 hours per day and can come to my home to
provide any assistance needed. In addition I continue to take all
the lung medications I am currently taking to treat COPD. And a
nurse comes to my home at least once per week to check me over and
recommend any changes. A nursing assistant comes to my home two to
three times per week to provide any assistance services I may need such
as help taking a bath, etc. My
pulmonologist will continue to monitor my COPD
care and the Hospice Medical Director will write prescriptions and other
orders as needed for my care. In addition, a social worker will help
with any wills, medical end of life or treatment directives needed,
counseling for family members, or other services I may need. In
other words they focus on the holistic care of the person for comfort
and peace of mind rather than aggressive medical treatment.
Upon notifying the selected Hospice organization that I wished
to use their services, the first stage was the intake or admission
process. A nurse came to my home and went over all of my medical
history, current medical condition, medications taken, insurance, and
everything else they could think of to fully understand my situation.
Once they decided that I did meet their criteria, the nurse began to
implement changes including providing me a Hospice drug card to pay for
drugs authorized by Hospice, made arrangements to have oxygen provided
by their preferred provider and the pickup of my existing oxygen
equipment, ordered DME items I needed such as walkers, wheelchairs,
nebulizers, etc. And a schedule was set
up for the nurse and CNA visits beginning immediately. The next
day was a whirlwind of activity of people delivering equipment and
medications and others picking up equipment that was no longer needed.
At the first meeting I was also given certain medications that
are available through Hospice for when I have an emergency. These
include morphine to relieve that feeling that you are smothering or just
can’t get your breath. They also recommended that I take an oral
form of morphine twice a day as a preventive measure to keep
extreme shortness of breath events from happening so frequently. I
also have liquid morphine on hand if more is needed.
So far all the people I have met have been very professional
and competent as well as just nice people whom you enjoy being around.
Obviously there has been little change in my condition during this short
time other than feeling perhaps a little more relaxed knowing that help
and advice is just a phone call away.
TALK ABOUT EMBARRASSING!!!
The morphine I was advised to take that I mentioned above has
one unpleasant side effect. It can cause constipation. Bowel
movements are an indelicate topic but a necessary part of life.
this lead me to a most embarrassing moment the
The morphine did cause constipation. Finally it got to
the point that my body was telling me something had to happen. A
couple of nights ago I sat on the commode for an hour straining and
trying. The harder I tried the shorter of breath and more
exhausted I became. My blood pressure was high, by heart rate was
way up, and I was breathing in short gasps. I used my inhalers, I took a
my wife turned up the oxygen, I even used the
nitro to get the blood pressure down. Nothing worked. I was
so exhausted I felt like I just had to lie down or I would fall off the
commode, even if it was on the bathroom floor. There was no way I could
stand up and walk to the bedroom.
My wife kept telling me not to lie down on the floor or she
could not get me up (she broke her pelvis in a fall a month ago).
I had fallen a week before and could not get up without getting someone
to come help me. So she knew that if I lay down in the bathroom
late at night, I would not be able to get up until we could get someone
to come lift me which was unlikely at that time of night. But I
could not stay on that commode all night either. Finally in
desperation I asked her to call 911.
Within a few minutes I had 8 or 10 people
gathered around me as I sat on the commode. There were males and
females, all asking questions. My wife tried to explain my
situation. I gasped short answers. They put me on their
oxygen tank and turned it up high. Then they gave me a breathing
treatment as I sat there. This was in addition, of course, to
taking bp, heart rate, and oxygen sat
numbers. After the breathing treatment they lifted me up and put
me in a wheelchair and wheeled me into the bedroom where I was able to
stand and then lay on the bed. Nothing ever felt
so good as to just lay there. We waved
goodbye to all the crew as they departed. My new bathroom buddies.
FAILED TRIP TO DENTIST
I think I have been kidding myself recently. I am
generally optimistic and I keep telling myself I am not really sick
enough to be in hospice and I will probably stay here six months and
they will kick me out. Today I think I got a little dose of
I have a toothache. It is probably an abscess that will need a
root canal. I called the root canal doctor and made an appointment
to look at it and see what needed to be done. He said if it was an
abscess they would just go on and do this root canal this afternoon.
I dreaded the root canal but it is better than living with the pain.
I decided to leave thirty minutes early so I
would not get stressed, but when I walked from my bedroom to the front
door of the house that was as far as I could go without stopping to
rest. I began to wonder how I would make it to the car and then
from the car to the doctor’s office and back after the procedure if I am
this weak and short of breath already. I decided to use a
wheelchair to get to the car so my wife sat the wheelchair on the
sidewalk just outside the front door, below the first step. I sat
in the chair and as she started to push me to the car a big gust of cold
air hit me in the back and just took my breath away. I thought I
was going to die on the spot. I started gasping for air, used the
inhalers, etc. but just got kind of sick and even weaker. I
realized there was no way I would make it to the office and back today
and survive an hour long root canal in the middle. It took
everything I had just to get back into the house. So now I
have to figure out what to do with this tooth. I have a call into
the hospice people. Surely they have these situations occur and
will know a better way to handle it.
But the main thing is it makes it clear that I am a lot worse
than I like to think I am if I can’t even get to the car to go
THE REST OF THE TOOTH STORY
Hospice did not have any suggestions for the
dental problem other than to offer to take me by ambulance for the
discounted price of $160 round trip at my expense. Not a bad price
but more than I wanted to pay. So two days after the failed
attempt we tried again only this time relying more on the wheelchair.
My wife wheeled me from the bedroom into the
kitchen and from there it was one step down to the garage and then on to
the car. That made that part of the trip easy. At the office
the dental staff came out to get me with another wheelchair and took me
all the way to the back office where the doctor x-rayed the tooth while
I sat in the wheelchair. A quick glance revealed it was not an
abscess but two very badly decayed teeth underneath a three tooth
bridge. One of those teeth had already cracked allowing direct
exposure of the nerve. There was nothing to do but pull them both.
So he quickly made me an appointment with the oral surgeon to get them
Monday at the appointed time, we used the
same plan to get to the oral surgeon for the extractions. These
teeth were big molars on the lower right side. The roots did not
want to come out. I felt sorry for the doctor he had to work so
hard. A lesser person would have given up. He mostly had to
break them into pieces and even then ended up drilling a lot of pieces
out. Happily I was numbed very well. My only worry was, with
all the pressure and popping I was hearing, that the jaw bone would
suddenly break. But finally it was over and I was on my way home.
I have had very little after extraction pain
so this chapter seems to have come to a successful conclusion. But
I am running out of teeth. My smile looks like the guys from the
Larry is going to go in to the inpatient
hospice for a couple of days or so to see if they can figure out why
he is still having these extreme shortness of breath episodes at
night. He had another one last night (3/4). They are
going to try to figure out the best treatment to deal with these
while he is there. He said he will write about it when he gets
back - cg
(Mon 3/10) - Larry's
wife says is returning home mid-day today, and that he is
doing better. - cg
IN HOSPICE STAY (3/13)
Early last week I had another one of those
nights where I just could not seem to get my breath for any reason.
The next morning the nurse visited me and said they had decided it I
needed to go into the inpatient facility where they could monitor me
more closely to try to find out what was causing these problems and how
to deal with them. I was also still having problems with
constipation and sleeping, so it seemed like a good idea to deal with
all of these issues at one time. So they picked me up and checked
me in Wednesday morning, expecting a relatively short stay of a day or
two at the most.
This was another learning experience for me
on how Hospice works. When you are on Hospice at Home you are
monitored by a team of nurses overseen either by your own doctor or the
Hospice Medical Director. Once you go into the Inpatient facility
your care is overseen only by the facility Medical Director. When
I checked in I had a brief meeting with the Medical Director about why I
was there and I thought we both understood what was expected. So I
was surprised to learn that Thursday morning the Medical Director had
decided to change a number of my medications, including those for heart
disease, seemingly at random. The medications I was taking were
carefully selected based on my reactions to those and alternative
medications. I was quite upset that they would be changed without
consultation with any of my doctors or me. We had some heated
conversations on this topic. Eventually the medications were
changed back but I think this is one thing for people to be aware of
when you do have to go into the Inpatient facility.
More directly on topic, they did try
different medications for the original problems and finally found some
combinations that seemed to work better. I am now prescribed an
inhaled form of morphine/saline mix to be used in a
when I am having these extreme episodes of shortness of breath. It
seems to work but it makes my very sleepy. So it also works as a
great sleeping aid at night. I guess that is one of the reasons I
have been so sleepy since I got home.
I am sorry to be so late in reporting on
this incident. I seem to have spent most of my time the last few
RESCUE DOG (3/13)
As some of you know I have a dog named
Rocky. He sees it as his job to be my protector and to look after
me. Night before last I found out he has another skill. He
is also a rescue dog.
I was asleep but was tossing and turning, kind of dreaming that I was
short of breath.
I seemed to have my
off or something and was not getting enough air. I slowly became
aware that something was pushing and pulling on my shoulder. It
woke me up. As I opened my eyes Rocky was right in my face pawing
me on the shoulder. He immediately barked at me when he saw my
eyes open. It was then that I realized how very short of
breath I was even though I was wearing the cannula..
I yelled for my wife to wake her and asked
her to check the concentrator while I grabbed the emergency E tank by
the bed and turned it on to try to get some air. Neither did much
good so I proceeded through the tricks for relieving shortness of breath
which included using my inhaler, using nitro under the tongue, taking an
ativan, and starting the new inhaled morphine
in the nebulizer. Eventually, I got it
under control and could
breathe again. I still don’t know what
caused this episode but at least my inpatient stay had added one more
trick to my arsenal for relief that was effective.
And now I have another reason for slipping
Rocky an occasional treat. He is now my Rescue Dog as well.
MORE SHORTNESS OF BREATH
This is getting old. Many of you have
said in your messages how brave you think I am in facing this disease
it’s symptoms. Well let me tell you I am
not. I am a coward of the first order. I hate the feeling of
being short of breath. I scares me to
death. It is not that I am afraid of dying. I am afraid of
the process of dying. There is nothing worse than that smothering
feeling that seems to just go on and on. I had another episode of
that this morning.
All I did was walk from the bedroom to the
bathroom and sit down on a stool at the wash basin. I was planning
on trying to take a shower. Instead I got a full blown attack of
shortness of breath. The nebulized
morphine finally led to some relief after nothing else worked but
it took a long time to get to that point. I don’t know what is
going on other than just that I am getting worse. And I am tired
of the process. Frankly I just want it to be over.
I am sorry if this disturbs anyone, but I
feel I must be honest with you in writing this series. This is a
I have read a number of messages on COPD-International
and some of the other COPD websites that lead me to believe I may have
created some confusion when talking about morphine and in the last
message that was posted the other day.
Morphine I used in a hospice setting to relieve the feeling of
being short of breath. While it is a strong painkiller, that is
not its primary role in hospice with COPD. Some people have jumped
to the conclusion that death with COPD must be very painful because of
the use of morphine to relieve symptoms. If I created that
impression, I am sorry, that was not my intention. Obviously I
have not gotten to the point of dying yet, so I can’t be absolutely sure
but what I have heard is that death is usually a peaceful process with
COPD. Perhaps the morphine sedation is one reason for that or
maybe it is because of the effect of lack of oxygen on the brain.
But the use of morphine to relieve shortness of breath should not in any
way be interpreted to mean that it is a painful process.
In the last message I may have given the impression that I am
worse than I am. I have had a pretty rough time since the end of
last year that has made me weak and has worn down my ability to cope.
But I do not believe I am on the verge of dying quite yet. I do
think I will be around for a while. My last message may have put
too much emphasis on just wanting the process to end. I have
felt much better the last couple of days and my attitude has gotten more
upbeat as a result.
I am sorry if I worried you
my past message things have more or less settled into a kind of routine.
I have been oriented to the hospice system, my medications have been
adjusted, and new med and oxygen providers now know where I live.
But it is kind of boring. I just hang around the house watching
television, doing my dozens (it seems) of nebulizer
treatments each day and spending a little time on the internet.
I still have frequent episodes of shortness
of breath but usually they are resolved within a relatively short
period. One or two a day last a long time and get me pretty
concerned. So we don’t have the shortness of breath problem
totally solved. Today I heard that the new Hospice facility where
I will stay for any needed inpatient treatment in the future has been
fully approved and is now open. After visiting the Dentist this
morning we drove to the new facility and did a quick tour. It is
very nice. It is a brand new
building built in the craftsman style and beautifully furnished.
All rooms are private with private bath. Each room has a large
flat screen HDTV. It accommodates 16 patients.
Common facilities consist of a large living
room with another flat screen HDTV, a dining room or break room for the
staff, a kitchen (meals are going to be catered to this location for
some time so the kitchen will be used to prepare snacks primarily).
There is also a nice chapel and a large
walled patio for those that want to get outside.
The staff offered to admit me as the first
patient today since I am still having some issues with shortness of
breath but I declined. I am sure I will spend enough time there in
NOT SO ROUTINE
AFTER ALL (4/16)
In my last message I said that things were settling into a routine.
Unfortunately that routine did not last long. A couple of days after my
last message I had an episode of shortness of breath in the shower so
severe that it scared the nurse and CNA that were in the house at the
time. The CNA had been assisting me with a simple shower when I suddenly
had a major attack of not being able to breath. It took a couple of
hours to get me stabilized so I was not just gasping for breath. It
scared the nurse so bad that she decided to call the ambulance and have
me admitted to the new Inpatient Unit for monitoring.
In the course of this stay I found that once my case manager/nurse
admits me to the inpatient unit she no longer has any control or input
to my case. So rather than a stay of a couple of days where different
meds were tried as I expected, I stayed a week on the same meds I had
been getting. But when I checked out I discovered that the doctor had
written orders to change or delete a lot of my meds, which really upset
me. I got into quite an argument with the doctor and nurses about the
changes and it was clear they were not interested in my opinion. So I
decided I would wait and let the case manager/nurse deal with it. The
only problem was that she had gone on vacation. It was not until Monday
that I finally got a chance to talk to her.
She said she would talk to the doctor and would restore the meds that I
had been taking on her own, which she has the authority to do
apparently, if necessary. I let her know that if certain changes were
not made, such as continuing foradil and my regular nebulizer treatments
I would have no choice but to go off hospice or at the very least change
hospice providers which would be a shame due to having the new facility
so close by. Hopefully I will find out something tomorrow. Up to this
point I have had enough meds on hand to continue all treatments as set
before any changes were made but that will end soon.
I just talked to the nurse and all meds will be delivered tonight to
continue the schedule set before I went into the Inpatient Unit. And
true to her word about 15 minutes later the meds arrived. All that
hassle for nothing.
ANOTHER PROBLEM TO DEAL WITH
Shortly before Christmas I discovered a small growth or sore on my right
leg just above the ankle. It appeared infected. I thought perhaps Rocky
had scratched me and it had gotten infected. So I made an appointment
with the closest local doctor I could see soon to get an antibiotic. The
young doctor took one look and diagnosed it as community acquired drug
resistant stalph, which had been running rampant in the local schools at
the time. Although drug resistant, she assured me there were some drugs
such as Bactrim that would cure it quickly. She prescribed the Bactrim.
A couple of days later I went into the local hospital with acute
shortness of breath. Since I had just started the Bactrim the doctors
took me off of it just in case I was having an allergic reaction. With
high doses of pred, I quickly got better and asked if I could restart
the Bactrim to deal with the little growth. Within a day of doing so
however, I again began having the extreme shortness of breath. So that
pretty well established that the Bactrim had been the cause of the
shortness of breath and I was switched to another antibiotic for the
infection on the leg.
While it did not get any worse, the growth did not get any better on the
new antibiotic so after a couple of weeks I was changed to another one.
This whole issue was minor given all the things I was dealing with on
hospice, etc. so I just tended to let it drag. Finally a couple of weeks
ago I decided it was time to deal with the infection again. This time I
found a local dermatologist which would quickly see me. She immediately
sliced off a piece of the growth for a biopsy and culture to confirm
exactly what it was. But she said it appeared to be a cancer, which had
not even occurred to me. I should also mention that I had a major
episode of shortness of breath getting into and out of the doctor’s
office. I think the doctor though I was going to expire on her examining
A week later I got a note in the mail confirming that the growth was
Squamous cell carcinoma and I was advised to return to the doctor’s
office as soon as possible for further surgery to remove all of the
remaining cancer tissue. When I called to make the follow-up surgery
appointment, they tried to dissuade me from doing anything further. They
suggested that since I was on Hospice it was unlikely the cancer would
kill me before whatever condition had brought me to Hospice. That really
irritated me and I let them know I expected it to be treated as if I
were otherwise perfectly healthy. I think my SOB episode had so scared
them they did not want anything to do with me. In any regard I now have
an appointment for the additional surgery on April 25th. I will keep my
fingers crossed that I don’t scare the doctors to death this time.
CANCER WRAP-UP (5/15)
It has been a while since I reported that I had received a positive
finding on a biopsy from a squamous cell carcinoma on my calf. I was
scheduled for further surgery on April 25, which went off without a hitch.
The surgeon was very nice and seemed totally competent. A week after that
surgery I received a call from the doctor saying that the second biopsy
report showed no cancer cells anywhere around the second cancer biopsy
area so no further follow-up or action was warranted. That was a relief.
GOING DOWNHILL (5/15)
Lately I have been getting more and more short of breath with very minimal
activity. The Hospice nurses just say my lungs are getting worse every day
and this is to be expected. I guess I am still not really accepting this
kind of thinking as I keep expecting that I will improved back to where I
have always been. I have also noticed a lot of swelling from the
accumulation of fluid.
If you look at those pictures that were made during our visit from Penny
and Bob (which was wonderful by the way – Penny you are welcome back any
time), It is pretty clear from looking at my eyes and face that I was
swollen pretty bad. Talking with the Hospice Nurse the next Monday about
this it was decided I should go into the inpatient hospice to monitor my
fluid levels and see if anything could be done to improve my breathing.
This turned out not to be a good idea after all.
My nurse made arrangements for me to be admitted to the inpatient unit the
Tuesday after Penny’s visit. The ambulance was supposed to pick me up at
2pm. The Inpatient Unit is about 3 miles from my house. For one reason or
another I didn’t get to the Unit until after 8pm, having waited all day,
with no dinner. As I arrived, they were in the middle of shift change and
I knew no one and no one knew me. Also, they had a new Head Nurse in
charge of the place. The Head Nurse announced that that they had no orders
for me and no meds. She said the doctor would have to review my case and
write orders before I could be admitted. I asked when this should be
finished and she said she had no idea. She also wanted to know if I had
any meds on me. Since I always come prepared I said I did, whereupon she
demanded that I turn over all medications to her for safekeeping,
especially any narcotics. This conversation set off a pretty heated
argument. After quite a bit of argument I decided I was just going home,
medications and all where I could write my one orders and take meds
whenever I wished. The ambulance took me home.
WITHDRAWAL FROM HOSPICE
On the way home from the Hospice the ambulance personal tried to talk me
into going directly to the hospital. They were concerned about my health.
But being stubborn I insisted on going home. The next morning I was still
very short of breath and decided that the ambulance personnel were right
so I called Hospice and let them know I was going to the Hospital. In
order to do this I had to officially withdraw from the Hospice program,
which I proceeded to do.
As soon as I got to the Hospital ER, they placed me on IV diuretics after
doing all the appropriate tests and admitted me for at least overnight
observation. I ended up staying two nights and dropped quite a few pounds
During the stay at the hospital there had been extensive discussion within
the Hospice as to the appropriate handling of my case. Obviously I felt it
had been handled wrong and fortunately Hospice did as well. After
extensive discussions, I decided to rejoin the Embracing Hospice
Organization. But like everything else, there is always paperwork to
rejoin any organization and it took until this Monday to get everything
back in order.
These are some of the reasons I have been remiss in updating the diary and
posting on the message board.
GENERAL CONDITION (5/15)
It seems each time I go into the Inpatient Hospice or the Hospital I end
up a little weaker. That has happened again this time. I seem to be
declining rather faster that I expected when I first started this process.
I simply point this out to let you know that I may not make my goal of
being the longest lived Hospice patient in history.
I also feel that I need to point out that these kind of events keep me
from posting on a regular basis so I hope you will not worry when I am
absent for extended periods. Neither facility (Hospital nor Hospice) make
Internet service available to me so I am unable to update unless I am at
home or otherwise notify anyone about what is going on. Chip is in touch
with Jeanette and unless you hear from him you can generally conclude that
I am still alive and kicking.
been a while since I have posted anything. It has been pretty weird times
around here lately. I have been having some very strange mental issues
going on., among other things, Shortly after my last posting here I
started having these psychological things happening that were making me
worry. I was having trouble reading, writing
and typing. I couldn’t seem to compose a coherent sentence. Some days I
would spend hours at the computer and realize I had typed two or three
short sentences. Even using spell check my messages were so full of typos
that they were unreadable. Read the messages I posted on the regular
board during this time and you will get some idea what I am talking about.
Also I was exhibiting some very weird
behavior My wife would catch me talking to myself or just sitting at the
computer touching the screen with my fingers like I was drawing or picking
up things. Sometimes I would just be nodding off and then jerking awake
all at once. This went on for a couple of weeks. I have no idea what It
was other I than I presume it was a medication reaction. I thought I had
gone completely crazy for a while.
Also during this time frame, I developed a
cough that caused me a great deal of distress. I was put on the
antibiotic Ciproflaxin, which I have taken
before and never had a problem. But I was coughing so much they added
tessalon perles, a
small pill that retards coughing. Maybe it was this medication
combination , along with the morphine that was
making me act so weird. Anyway, the infection did not get any better by
the time I finished the CIPRO so I was switched to
Doxycycline, which does seem to have done the job. I have been
taking it now for about a week and the cough is gone. Thank God so is
most of the weird behavior.
HOSPICE PROBLEMS PERSIST
I am still having trouble with the Hospice
and the hospice doctor. They can’t seem to keep my medication straight.
Lately we have been battling over diuretics and supplements.
My feet have been swelling a lot and I have
had to increase the diuretics that I take. I have a tendency to lose
potassium and sodium when I take diuretics so the supplements and diet
that go along with them are very critical to keeping my electrolytes in
balance. For some reason the Hospice does not like to add potassium. My
cardiologist insists that I add 10msg of
potassium each time I make an increase in my diuretics and then monitor
potassium levels every few days to be sure I am in balance. So far the
hospice refuses to take any blood tests and is very stingy with the
potassium. So basically they are just guessing and flying blind as to
what my levels are. This of course can be deadly. I have threatened to
leave again if they don’t get this straightened out soon. The nurse is
coming today to have another discussion about it. So now I guess I am
back on the edge of being among the hospice homeless
On July 30, 2008,
Larry Taylor (aka Larry/ga on our
message boards), an active message board poster with over 4,600 posts and
a contributor to our Library, passed away.
There are only a handful of people who
come into this world, and touch our lives in a dramatic fashion.
Some of these people are just a fleeting moment in the history of
our individual lives, while others, like Larry, have a constant
impact for years. For those with COPD, Larry helped untold thousands
over the many, many years that he was a member of our COPD
It wouldn't occur to him that he was so popular, that he will be
missed so much. Larry, you see, did his good deeds quietly. He never
advertised the fact that he helped so many people in so many
different ways. He never talked about his numerous acts of support
and kindness. Yet I believe that almost everyone reading this has
been at the receiving end of his knowledge and support.
We will miss him as a fountain of knowledge. If we ever
needed to know anything there was always a good chance that Larry
would know the answer. If he didn't he would make sure he found the
Most of all, we will miss him as a friend. Through the
miles of cyberspace, Larry has become a friend to so many. One only
needs to look at the messages of encouragement as he became sicker
and weaker to realize the degree of closeness he created with so
many around the world.
Today, many people mourn him. His family will, of
course, miss him most of all. I hope though, that they will take
comfort in the fact that so many others will also miss him, for many
different reasons. His family members knew he was well respected,
but I am sure it is gratifying for them to see how many others will
genuinely miss him.
Larry -- You have served mankind so well. You will be
sitting beside a few very special people, people like yourself who
dedicated a large part of their lives to helping others, even in the
face of their own individual adversities.
Rest well my friend.