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 facilities.” —- 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.
BACKGROUND:

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 overall symptoms.
CURRENT SITUATION:

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 long term 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, pulmonologist 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.
EVALUATING HOSPICE

At a follow-up appointment in October, 2007 my pulmonologist provided information on Hospice programs that he was familiar with. He suggested 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 care occasionally.
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 your illness.

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.
GETTING STARTED (2/22)

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, canes, 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 those 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!!! (2/26)

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. And this lead me to a most embarrassing moment the other night.

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 alorazepam. 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 (2/26)

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 reality.

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 somewhere.

THE REST OF THE TOOTH STORY (3/5)

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 both out.

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 movie Deliverance.

Editorial Notes:

(Wed 3/5) 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 nebulizer 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 days sleeping.

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 cannula 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 anativan, 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 (3/13)

This is getting old. Many of you have said in your messages how brave you think I am in facing this disease and all 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. Thenebulized 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 horrible disease.
CLARIFICATIONS (3/17)

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.
ROUTINE (3/28)

Since 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 the future.
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 (4/16)

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 table.

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 (5/15)

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.
THE HOSPITAL (5/15)

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 of fluids.

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.
MY 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.
STRANGE TIMES (6/06)

It has 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 (6/06)

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.

 

 

Source: http://www.copd-international.com/library/Hospice-experience.htm