Re: my story
- From: "Colleen" <colleen@xxxxxxxxxxx>
- Date: Sun, 7 Aug 2005 16:09:52 -0500
A very moving story. It sounds like you have good care and a desire to care
for yourself. That's a big part of the battle.
Sending my best wishes for success to you and to your family.
"See, in my line of work you got to keep repeating things
over and over and over again for the truth to sink in,
to kind of catapult the propaganda."
Greece, N.Y., May 24, 2005
"Dave" <daveunserNO@xxxxxxxxxxxxxxx> wrote in message
> This is my story. I hope that sharing it will prevent anyone who is not
> treating diabetes, or is not aware they have it will get professional
> help. I am a 35 year old white male. I had never been at a hospital for
> more than stitches. I hadn't had a physical or a checkup for over five
> This journal is my attempt to cope with life as it was, is and will be.
> Most importantly, through all of this I am most solemnly thankful and
> appreciative of the help, support, kindness, compassion and love of my
> friends, family, and most of all my wife, soul mate and best friend Lori.
> She is my best reason for fighting this battle.
> (First entry: third week of June 2005, after returning home from two weeks
> in the hospital)
> I am told that it is not my fault. My blood sugar levels have apparently
> been high for some time. I had shed over 90 lbs in the last few years from
> my heaviest at 310 lbs. I now weigh about 205. My diet has not been the
> most favorable. I ask if this is what caused my condition? I am told that
> my condition is type 1 diabetes. My body does not produce enough insulin.
> There may be a degree of insulin resistance (type 2) as associated with
> obesity, but that my condition is basically genetic and possibly not
> something that could have been prevented. They tell me that this is
> something that can come on gradually, insidiously. Eating sugar does not
> cause type 1 diabetes. In fact, my food consumption and consequent high
> blood sugar is a result of the body attempting to fuel itself with energy
> it cannot absorb. I understand now that without insulin, the body's cells
> cannot use the sugar produced by food. I am aware now that this disease
> has been with me for some time, my body fighting with it, the effects of
> high blood sugar gathering and damaging me. Fatigue dismissed with a
> hectic day, diminished sensation in my feet, just from rough skin? Other
> unfelt symptoms have been lurking and wearing on my cardiovascular and
> other systems. High blood sugar causes slow wound healing and
> vulnerability to infection.
> I developed walking blisters on my feet while on vacation in mid April. I
> have had blisters, cuts, scrapes and injuries many times in my life, and
> they all healed fine. But this time the injuries lingered. At first the
> skin seemed to be healing. I cleaned the wounds and changed dressings
> often. As the weeks went by I became concerned. The week before Memorial
> Day I felt very tired and my appetite had decreased. I made an appointment
> with a family practice doctor's office. The appointment was for Tuesday
> after Memorial Day. I began feeling more ill over the weekend. I thought I
> was sick with a stomach virus or something, and was glad I had made a
> doctor appointment, as this could be checked as well as my wounds. I would
> later learn that the sickness I felt was a result of an infection my body
> was fighting, and a battle I was starting to lose. Over the holiday
> weekend my condition worsened. On Sunday and Monday I was unable to keep
> down food and water and was vomiting regularly. I was either in bed or on
> the couch most of the time. Unaware of what was going on, I considered
> going to the hospital emergency room. But I thought I was "tough" and
> could wait it until my Tuesday morning appointment. Even with all the
> information I now know about what was going on, I do not know if that
> would have actually made a difference. On Tuesday morning I felt as bad as
> I can ever recall in my life. With great difficulty I checked my wounds.
> My right foot had become very swollen overnight. I was scared. With Lori's
> assistance I hobbled to the car with a vomit bucket that I am glad we took
> along. At the doctor's office time went very slowly as I waited in misery
> to be seen. It was determined that I needed to be admitted to the hospital
> My awareness of the passage of time from this point until my return home
> is very murky. At times it seemed things rushed by, but mostly the minutes
> and hours dragged on. A number of doctors and assistants looked me over
> and asked me a lot of questions. An intravenous line was inserted in my
> hand. It was determined that surgery would be administered that day to
> remove dead tissue and determine the extent of damage and infection on my
> right foot. My wife and family were at my side as I was whisked to the
> operating room on a gurney. I had never been under general anesthesia
> before, for that matter I had never been at a hospital for more than
> stitches. As I lay on the gurney in the O.R. waiting room, hospital
> workers flurried around me, doctors were explaining what was happening,
> and asking me to sign papers allowing them to administer treatment. The
> O.R. was a cold brightly lit place with fast paced music playing; I
> suppose to invigorate the team while they worked. A mask was placed over
> my face. It seemed to be taking a while, and I felt fully conscious. I
> spoke out loud with the mask on my face "I don't think it is working?"
> Suddenly I was in a different room. It seemed instantaneous. I thought
> that this must be what it is like to go through a Star Trek transporter.
> My memory is clouded at this point. I know my family was with me often,
> and Lori as much as humanly possible. Lori stayed with me well past
> visiting hours.
> The first few nights were very uncomfortable. I still felt nauseous and
> had a great deal of mucus that would build up in my airway. I recall
> having to cough and clear my throat every few minutes in able to breath
> comfortably. Eventually I succumbed to sleep only to be abruptly awakened
> by a feeling that I couldn't breathe followed by a violent coughing spell.
> I asked the nurses if I could have a decongestant, but I was told that it
> would have to be cleared with the doctor in charge of my case and that he
> will not be back until the next day. My turbulent night continued for
> hours and I pleaded with the nurse for some medicine to help me. All the
> nurses and assistants were very professional, accommodating and
> compassionate. The night shift nurse was a "serious" nurse, in her
> presence. She wore the nurse hat and white uniform as opposed to the
> pretty designed "scrub-like" more casual attire most of the others wore.
> When I first saw her I thought I must be in serious bad shape because they
> are sending in the serious top notch nurse for me. I thought of what
> wounded soldiers must think when they realize what shape they are in. I
> asked her if anything could be done for my discomfort. I was reminded
> about doctor approval and my spirits sank. But several minutes later she
> returned with some medicine that was injected into my I.V. She said it
> should have an effect on my congestion and help me sleep. I don't know
> what strings she pulled or what influence she had, and I never asked, but
> I was able to sleep finally, at least until my next vital sign check or
> I.V. antibiotic infusion.
> The next day I went to "whirl pool therapy". A patient immerses a wound in
> a tub of warm clean water in order to flush out bad stuff and promote
> healing. Lori was with me. As the dressings were removed I saw the extent
> of the wound. I could actually see muscle, fat and tendons that would
> squirm when I moved my toes. I was horrified. I wondered how this would
> ever be healed, and what was yet to come. I would soon find out.
> I underwent an MRI scan that would show the extent of hidden tissue and
> bone infection. I had to lay motionless on a platform with my feet inside
> a chamber for about an hour. The machine was ominous and made loud strange
> and unpredictable noises. After the scan I was returned to my room. It was
> quiet for some time until later a doctor I had not met came briskly into
> the room with Lori. I asked if they brought bad news. Lori looked at me
> and confirmed that the news was bad. The infection had taken hold in the
> bones of my right foot and possibly some in the left. The doctor
> recommended removal of the toes and part of the foot. He said it is
> important to act quickly to prevent the infection from spreading. The
> doctor said it would be unlikely that prolonged antibiotic treatment would
> contain and reverse the infection, and that delay could result in the
> infection spreading and require removal of more tissue and bone, perhaps
> the entire ankle below the knee. It felt like I was punched in the gut. My
> head was spinning and I was probably trembling. The doctor left the room
> and Lori stayed with me. I admit that this would not be the last time I
> clenched Lori's hand, shed some tears and cried out loud.
> The vascular surgeon explained his intentions to me. In the next few days
> another procedure would follow to remove more infected tissue, and then
> the removal of the toes and infected bone. The doctor's goal is to
> preserve as much tissue as possible and therefore preserve as much
> function as possible. The strategy would involve leaving an open section
> for some time until the remaining tissue is healthy enough to accept a
> skin graft. After the second operation another trip to the wound care
> whirl pool revealed to me just how much of myself I would probably loose.
> Lori was with me as I gazed at the open chasm where my flesh used to be. I
> admit that grief overwhelmed me.
> Another doctor, a podiatric surgeon, has taken charge of my left foot. She
> looked at the ulcers and advised that the bone on the outside edge may be
> infected as suggested by the MRI. She said that tissue removal is her last
> resort, but it may be necessary to remove the small toe and part of the
> side. This doctor ordered another test, a radiological scan that would
> offer a closer look at the condition of the hidden tissue and bone in my
> left foot. A wave sickness and sadness came over me as I wondered how much
> worse this would get.
> I was given some sort of serum in my I.V. and later would lie on another
> platform of a different machine. This time I had to hold my feet at
> different positions under a scanner while technicians operated the machine
> and evaluated the display. Despite the calm and compassionate manner of
> the professionals in the room with me, I could see the concern on their
> faces as they looked at the display, and of course heard the comments they
> made as they studied the information. "This angle looks like there is
> infection in the bone." Please! I thought, please let there be no bone
> infection, no more surgery! I trembled as I prayed that I would not loose
> any more of my body than that which was already certain. One technician
> instructed me to position my foot at a different angle. I heard him say
> that at this perspective bone infection is not positively evident. I was
> returned to my room. I was clinging to hope.
> Lori and a doctor arrived in the room to discuss the test results.
> Although nothing is definite and only time will tell, it seems that for
> now my prayers have been answered and I have been given a gift. The scan
> conclusion was that that there is no infection in the bone of the left
> Another operation was performed on the right foot before my discharge from
> the hospital.
> That evening the nurses performed a dressing change. I was now to see what
> was lost on my right foot. Lori held my hand as the bandages were removed.
> All toes gone and some tissue behind. A large hole on the top without skin
> across most of the width and angling back from the right front to near the
> ankle on the left side. To be honest, I was surprised at how much the
> surgeon had saved. I think at this point I had already passed the grief
> stage. I just felt beat up, bewildered and anxious about what was yet to
> come. How long until I can walk again? How long will I be out of work?
> What kind of mobility loss will I experience? What kind of rehab will I
> need? What kind of adaptive equipment and prosthesis will I need? The
> answers were not available. The answers are always that we have to see how
> it goes, there are no definites, everyone responds differently to
> treatment and surgery, it depends. I am learning to cope with uncertainty.
> During my stay at the hospital, my family visited regularly, and stayed
> with me for long periods of time. My mother and Lori would stay with me in
> the room for hours, even as I slept.
> I went home Monday June 13, thirteen days after being admitted. In
> thinking of this superstitious number, I am reminded of how the astronauts
> on Apollo 13 were subjected to tremendous adversity, but made it home to
> survive and live.
> I am on a number of medications now, from insulin and blood sugar
> absorption control, blood pressure control, cholesterol control, and oral
> antibiotics. I must infuse with an intravenous antibiotic three times a
> day, morning, evening, and midnight for thirty days. Lori must fetch all
> the things I need, as although I feel strong and am capable of hobbling
> around with a walker, I am instructed to keep weight off my feet as much
> as possible. Lori must prepare my food and perform dressing changes. I am
> able to do the I.V. infusion, blood sugar check and insulin injections as
> long as I have the supplies near by. We have my old single bed set up in
> the dining room, and for the most part everything we need is on the first
> floor of the house. The first few nights I slept downstairs. However
> although I am sure the doctors and nurses would frown on it, I am now
> going upstairs to sleep with Lori after my midnight I.V. infusion. Like a
> toddler before he can walk, I go up and down the stairs on my butt.
> We have many follow up visits with doctors and the wound care center at
> the hospital. It is likely that I will begin a 30 day regimen of
> hyperbaric oxygen therapy. This treatment has been shown to promote
> healing. I will be placed inside a cylinder of compressed oxygen for two
> hours a day. This did, at first deeply scare me. The thought of being
> confined and locked in a small area for a definite period of time, without
> the ability to leave, or even sit up, and a decompression period, still
> gives me the chills. But I know this is what is best for the most
> effective and expedient recovery. I will endure it if it helps me heal and
> cuts down on recovery time, easing long term physical, emotional and even
> financial stress.
> The following weeks will bring more doctor visits, surgery, tests and
> My family has been very helpful in preparing for my return home and coping
> with my limitations. Moving furniture, mowing the lawn, cooking, shopping.
> I could not ask for a better nurse than Lori. Mom visits at lunch time
> during the week. Friends have sent cards, called and visited. So far I
> have asked that visits be limited to my close family. I do not prefer that
> everyone see me at my worst. I am consumed by this right now, and do not
> wish to talk about it with everyone. As I regain strength and spirit, I
> will surely welcome the company and conversation of others.
> I do not know how long this situation will confine and control me. I do
> know that I intend to confine and control, and ultimately triumph over it.
> I will have to live with diabetes and my compromised foot for the rest of
> my life. I must focus not on what I have lost, but what I have left. I
> have the use of all of my body. I may have to adapt and walk differently,
> but I will walk. I have my hands, my senses, my mind and my soul. I have a
> devoted wife and a loving family. I have good friends. I have worked hard
> in my work and in my studies. I will be a productive, contributing member
> of society. Many inspirational messages have been directed to me by those
> who care about me. I have done a lot of soul searching and evaluation of
> what is important in life. Perhaps my life will be richer and more
> appreciated now than it would have been if I had not endured this
> experience. One of the inspirational quotes that I especially embrace is,
> "Do not let that which you cannot do get in the way of that which you
> (New entry 8-5-05)
> It has been over two months since my diagnosis. Several surgical revisions
> performed by the original vascular surgeon on my right foot have failed to
> remain closed. I have accepted the recommendation of the podiatric surgeon
> in charge of my left foot for a bone and tissue revision. I am now seeing
> her for wound care and she will be doing the surgery required from this
> point forward. This doctor has successfully treated the ulcers on my left
> foot and has proclaimed it "healed". I have completed the hyperbaric
> oxygen therapy, and returned to work yesterday.
- my story
- From: Dave
- my story
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