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I am a 40 year old attorney, wife and mother from Wausau, Wisconsin. I had a 35 minute intubation for a minor surgery in 2004. I was 5'5" and weighed 130 pounds. My anesthesia records indicate that a size 7 tube was used and that cuff pressures were not monitored. When I woke up I remember coughing very hard and I had a sore throat.
I began having symptoms of wheezing and shortness of breath with exertion in 2008. I was misdiagnosed as having asthma for several years. I was short of breath walking up stairs and had an audible wheeze during conversation. By the time I was finally diagnosed in February, 2011, my airway was reduced to the size of a McDonald’s straw. Imagine plugging your nose, breathing through a straw, while trying to carry on your activities of daily living. In the two years since my diagnosis I underwent three dilatation surgeries to open my airway. I was told that I would continue to need these dilatations every 6-12 months for the rest of my life and that I had a 50% likelihood of needing a tracheostomy during my lifetime.
I underwent a tracheal resection surgery in March 2013 at which time three tracheal rings including my cricoid were removed. I had the surgery done in Boston amd spent 9 days hospitalized with my chin stitched to my chest, no food, no fluids and no speaking.
The cost of this condition is tremendous. My medical expenses were approximately $215,000. In addition, I had to pay for the travel expenses of traveling from Wisconsin to Boston three times. I missed 13 weeks of work. This does not include the emotional toll this condition has had on me.
(Over-inflation injuries can be prevented with the use of a smaller standard size tube for women and the use of intracuff monitoring).
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Intubation Injury Impact Statement
September 20, 2013
As a 27 year old newlywed, I have dreams of travelling the globe with my new husband, having children, and decorating and renovating our new home. But because of an intubation injury two years ago, all of those plans are on indefinite hold. Other than my subglottic stenosis, I am a 5'8", 300 pound healthy woman with a large frame. Overweight certainly, but after thorough testing I have no other health issues other than the associated sleep apnea that is caused by the stenosis and disappears upon tracheal dilation.
In July of 2011, what started out as a routine third molar extraction, my first ever general anaesthesia, quickly turned into a nightmare that I am still living with. The anaesthesiologist first used a size 6 tube through my nose but had to abort when she triggered bleeding at the back of my nasal passages. As the blood began to coat my vocal cords, my oxygen saturation levels quickly began to drop and she had to act quickly to suction the blood out and get my levels back up to an acceptable level. When the levels neared 50%, she decided to give me another dose of succinylcholine and try another tube through my mouth, this time a 7.5, but once my oxygen saturation level was raised the entire procedure was cancelled and I was quickly awakened out of fear of triggering laryngospasms.
I will never forget the horrific cough and the sore throat that lasted for over a week. My cough was so terrible while I waited in the recovery room that every nurse within earshot was concerned. I did have a successful procedure a few short weeks later using a size 7 tube via my mouth, but the worry of having a repeat of that first procedure still remains a vivid memory. My second procedure went much smoother than the first, but I still had an increased cough when I was awakened.
A year later in August of 2012 I was hospitalized for shortness of breath. It was believed to be some type of reactive airway disease, likely asthma. The least amount of movement caused my oxygen saturation levels to drop into the 60-70% range, even when I walked at a snail's pace. I tried every puffer available and none seemed to help. In February of 2013 I had a pulmonary function test and it was revealed that I had an upper airway obstruction with no signs of asthma. It took three more months to see an otolaryngologist and I was immediately diagnosed with Subglottic Stenosis.
I had my first tracheal dilation procedure at the end of May and just had my second dilation on September 17th. I will also be having a tracheal resection completed in the near future to remove the affected area of my trachea for good. This surgery will require a hospital stay of, on average, a week to ten days and I may be a month or even several months before I regain the use of my voice and the range of motion in my neck. There is also a risk that I may end up with permanently paralyzed vocal cords or a tracheostomy.
This is a very heavy burden, both financially and mentally, for a young woman to endure. However, what makes this situation even more frustrating is that it may have been prevented if a smaller tube size had been inserted back in 2011. The anaesthesiologist now uses a 5.5 intubation tube, and I wake with very little pain or irritation and a minor cough. In the meantime I have been unable to work or even complete daily tasks such as cleaning, cooking, and shopping. In the past year I have had approximately one good month where I could actually get back to daily life, but it quickly degraded until a second dilation procedure was required to get me through the wait for a tracheal resectioning. I also have mild obstructive sleep apnea when my stenosis increases, which only aids in decreasing my quality of life even more.
The regulations regarding tube sizes need to be reviewed, along with intracuff monitoring. If it prevents one young woman such as myself from having to go through this personal hell, then it will be worth it. In the meantime, I will continue to fight with every breath I can muster to get my life back to something that even slightly resembles "normal".
Sincerely,...
As a 27 year old newlywed, I have dreams of travelling the globe with my new husband, having children, and decorating and renovating our new home. But because of an intubation injury two years ago, all of those plans are on indefinite hold. Other than my subglottic stenosis, I am a 5'8", 300 pound healthy woman with a large frame. Overweight certainly, but after thorough testing I have no other health issues other than the associated sleep apnea that is caused by the stenosis and disappears upon tracheal dilation.
In July of 2011, what started out as a routine third molar extraction, my first ever general anaesthesia, quickly turned into a nightmare that I am still living with. The anaesthesiologist first used a size 6 tube through my nose but had to abort when she triggered bleeding at the back of my nasal passages. As the blood began to coat my vocal cords, my oxygen saturation levels quickly began to drop and she had to act quickly to suction the blood out and get my levels back up to an acceptable level. When the levels neared 50%, she decided to give me another dose of succinylcholine and try another tube through my mouth, this time a 7.5, but once my oxygen saturation level was raised the entire procedure was cancelled and I was quickly awakened out of fear of triggering laryngospasms.
I will never forget the horrific cough and the sore throat that lasted for over a week. My cough was so terrible while I waited in the recovery room that every nurse within earshot was concerned. I did have a successful procedure a few short weeks later using a size 7 tube via my mouth, but the worry of having a repeat of that first procedure still remains a vivid memory. My second procedure went much smoother than the first, but I still had an increased cough when I was awakened.
A year later in August of 2012 I was hospitalized for shortness of breath. It was believed to be some type of reactive airway disease, likely asthma. The least amount of movement caused my oxygen saturation levels to drop into the 60-70% range, even when I walked at a snail's pace. I tried every puffer available and none seemed to help. In February of 2013 I had a pulmonary function test and it was revealed that I had an upper airway obstruction with no signs of asthma. It took three more months to see an otolaryngologist and I was immediately diagnosed with Subglottic Stenosis.
I had my first tracheal dilation procedure at the end of May and just had my second dilation on September 17th. I will also be having a tracheal resection completed in the near future to remove the affected area of my trachea for good. This surgery will require a hospital stay of, on average, a week to ten days and I may be a month or even several months before I regain the use of my voice and the range of motion in my neck. There is also a risk that I may end up with permanently paralyzed vocal cords or a tracheostomy.
This is a very heavy burden, both financially and mentally, for a young woman to endure. However, what makes this situation even more frustrating is that it may have been prevented if a smaller tube size had been inserted back in 2011. The anaesthesiologist now uses a 5.5 intubation tube, and I wake with very little pain or irritation and a minor cough. In the meantime I have been unable to work or even complete daily tasks such as cleaning, cooking, and shopping. In the past year I have had approximately one good month where I could actually get back to daily life, but it quickly degraded until a second dilation procedure was required to get me through the wait for a tracheal resectioning. I also have mild obstructive sleep apnea when my stenosis increases, which only aids in decreasing my quality of life even more.
The regulations regarding tube sizes need to be reviewed, along with intracuff monitoring. If it prevents one young woman such as myself from having to go through this personal hell, then it will be worth it. In the meantime, I will continue to fight with every breath I can muster to get my life back to something that even slightly resembles "normal".
Sincerely,...
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I am a 48 year old female. I am also a nurse. I was diagnosed about 10 years ago with Idiopathic Tracheal Stenosis.
My symptoms started out as shortness of breath. I found myself having to stop and take a breath every few words in conversation. Over the course of a year, I had pulmonary function tests twice, an echo cardiogram, allergy testing, and an upper endoscopy. I was put on inhalers even though the doctors knew it was not asthma. I was also put on acid reflux medication. The doctors didn't know what else to do.One morning while I was getting ready for work, I was coughing and I sounded like an infant with croup. I had a hard time breathing so decided to go to my doctor’s office. I remembering being so out of breath I had a hard time walking. I was given a breathing treatment and a steroid injection at the doctor’s office. I was told I had epiglottitis and was sent home to rest and was told that by the afternoon I should be feeling better. That didn't happen. That was a Friday; I went back on Monday and saw an ENT that was working in the office that day. He put a thin scope down and immediately diagnosed me with Tracheal Stenosis. I had a CT scan that day and my trachea was 75% closed.
Since that time I have lost count of the numerous rigid dilations I have had, but its well over twenty. My first one lasted 10 months with the time in between getting shorter and shorter. I usually have about three dilations a year. I have spent thousands of dollars in medical expenses and missed many, many days of work. This condition is very tolling on those of us who have it. I used to be an active person but after 10 years of not being able to breath, my life has changed a lot.
Since June of this year I have made two trips to Boston to see a specialist who can hopefully fix this. I have had two additional dilations by him and I am awaiting a resection. Traveling to Boston has added to the medical expenses and now travel expenses that insurance does not cover, as I live in Iowa.
My past surgical history was a gall bladder removal at the age of 19 and a tubal ligation after the birth of my fourth child in 1993.
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To Whom It May Concern:
If you read nothing else today, I beg of you to please read this. I am a 52 year old Mother of 4 children (oldest is 30 and youngest is 9) and I have one grandchild (6months old). I am permanently disabled because of Subglottic Tracheal Stenosis. I should not have to suffer in the many ways I do. Some easy and necessary changes can be made on how patients are managed when intubated for surgery. These changes are simple and would not change life for me but would benefit many like me in the future. The research has been done. The change is so very necessary.
Here are some of the ways my life is negatively affected:
I. Physically:
I cannot lift anything heavier than 10 lbs without extreme difficulty in breathing.
I cannot run at all and walking is a real feat….it requires adequate breathing.
I have to have help with doing my normal household chores. Lifting and carrying laundry is something my 9 year old son has to help me with. I can no longer push a vacuum cleaner or mop a floor. Going to the grocery store is a real challenge and I am usually always out of breath and tired when I get home. I cannot carry them to or from my car without help.
I now have a paralyzed vocal cord that is inoperable and will not regain as a result of a surgery. I cannot sing, raise my voice to be heard by others unless they are within a 6 foot range. This is very frustrating! I cannot call my child in from outside or summon someone from another room at home. I cannot be heard at all in a noisy environment, e.g. parties, ball games, etc., I have had so many surgeries in the past few years to correct my tracheal stenosis and really just keep me alive that I have lost count…somewhere around 21. I have had to breath with a tracheal tube protruding from my neck, have been in ICU so much they know me, have had to have home health care, have had hospital complications…internal MRSA and pneumonia that required aggressive treatment because my compromised airway cannot tolerate respiratory infections. So I stay at risk.
I have to return to be seen and possibly surgically dilated every 4 months. I was seen today. My airway is 60 percent open and that is good news but it may well be closed at any time again due to the stenosis which will send me back to surgery and through more of the same. Sadly, my airway could be 100 percent open…and all the surgeries and physical limitations could have been avoided.
II. Mentally:
I suffer from extreme anxiety and have to take a lot of medicine to control.
I have felt alone with Tracheal Stenosis as most do not understand this problem and so few are properly diagnosed. Many are treated as asthmatics. I have had doctors tell me I would not live. I have had problems finding a doctor who could actually treat me. Being declared disabled and handicapped is a very difficult concept to accept. One has to come to some terms with that after wrestling emotionally with it all at first.
III. Financially:
My family has suffered severe financial strain and loss because of my Tracheal Stenosis. We have had so much medical expense that couldn’t be paid. My medical bills have exceeded millions, literally and though we have paid some we could not pay for all. At most hospitals, I had to become a charity case. We owned four properties at the onset of my problems. A comfortable 2 ½ story home which was our primary residence and a home on Lake Lanier. We also had two rental properties. Due in large part to my illness and the financial burden we lost all of our properties to foreclosure. Our credit has been ruined and we are unable to purchase a home again. Our life savings, retirement, investments, every financial asset has been exhausted because of this illness.
IV. The toll on my family
My husband has lost so much time from work because it has required him to take care of me in so many situations. He has lost much needed income as a result.
My youngest child who is 9 cannot have the active mother that he deserves. I cannot attend a football game with him because I cannot go up and down stairs. I cannot throw and catch a ball with him because of my condition. I flew to see my son , who lives in Texas, and had to have a wheelchair transport to get to and from the plane. I couldn’t help my daughter move into her dorm this past Fall at UGA. In fact, I couldn’t drive for a long time so she actually left my home to live with her Dad (we are divorced) during my illness because at one point I couldn’t even drive to get her to her activities. I now have a granddaughter and I am beginning to have trouble holding her. I am just not a normal 52 year old woman and my limitations has and continues to affect all my relationships with those closest to me.
With all that said, what could have changed that would have prevented my situation? Two things…two simple things:
1) various sizes of Endotracheal tubes that are measured and placed in adults like they are in pediatric patients ( I am 4’ 11” tall with a very petite bone structure) and
2) Properly managing the cuff pressure with a manometer!!! (My husband, nor family ever saw one used the entire time I was hospitalized during my initial illness when I was hospitalized in 2008 in an induced coma on a ventilator for 90 days).
My medical story begins here: I was a healthy, active, energetic woman in my mid forties who hardly ever needed to see a doctor. I was, however, being treated from 2005 to 2008 for asthma and allergies. I was not seeing relief despite the medicines so I could possibly have been an Idiopathic sufferer. If so, my only other surgeries were in the years 1967, 1974. 1978, 1982,84,1994 and 2004. In 2005, (still very healthy and active) I was having trouble breathing. I saw doctors…lots of them who said I had asthma and continued to throw medicines at me that didn’t provide relief. Then on April 4, 2008, I woke up and couldn’t breathe at all. My husband took me to the nearest Emergency room. They first treated me for an asthma attack and that didn’t help, at all. An x-ray proved that I had bilateral pneumonia. I was put into an induced coma for what was thought to last a week…turned into 90 days. During this time, I required mechanical ventilation and was near death many times. I developed ARDS (Acute Respiratory Distress Syndrome or more simply put lung failure) , Sepsis, Internal MRSA that attacked my heart and lungs and near renal failure. I was hospitalized for a total of 120 days because I had to be weaned off the ventilator and then “relearn” to walk! The doctors quoted in their notes that they were concerned about the long term affects to my airway. I finally came home with a walker and on oxygen 24/7 and stayed on it for 2 years. Then I was taken off the oxygen as my breathing tests finally proved normal . Within 6 months, I was struggling to breathe. I went to see the pulmonogist and they initially thought asthma and once again threw medicine at me and that did not help. Finally, another doctor was called in who put a stethoscope up to my neck and found that my breathing was compromised at this location. During this time, my pulse oxygen level was fine so it was easily misunderstood or even tossed out as not a problem…or perhaps as something psychological. In February of 2011, I was first diagnosed with Tracheal Stenosis. The next two years included so many tracheostomies and reconstructive surgeries to repair the damage, which sadly, actually added to the problem. I have miraculously survived so much and the hardest part for me has been the Tracheal Stenosis!
My life has been permanently changed and my quality of life is way below par with no ability to correct. If the two changes mentioned above were in place and had been done for me, I would be a normal healthy 52 year old woman without the limitations outlined in this letter. Please, please, for the sake of others who will fall into the same horrible set of circumstances, unnecessarily, please do whatever it takes to make some simple changes. Quality of life for many are depending on it! Research has been done and people like me exist to prove the need for change. Thank you for taking the time to read my story and hear my plea! I do hope you can do your part to change the current standards in place regarding ETT sizes and proper and frequent cuff pressure monitoring for adults with a manometer that will prevent such living nightmares as mine!! Thank you and if you have further questions, I can be contacted at XXX-XXX-XXXX or by email
______________.
Sincerely,...
Jean Martin Bowles
Concluding Thoughts
I really want people to know that these a real lives we are talking about. It's not just my life that is affected, but my children, my husband, my extended family and my friends. It about being terrified that if I ever have to support my family, how would I do it with needing constant surgeries, doctor's appointments and dealing with all the mucus, coughing, wheezing etc. ? It's about constantly losing insurance and what if this Obamacare thing doesn't work out? I won't qualify and how would I ever afford it? The horrible thing about this condition is that not only do I have post traumatic stress syndrome that mucus will one day get plugged in my throat and I'll die and leave my young children without a mother, not only is it so painful to struggle for every breath, not only is it horrifying to walk out in public and have people look at you like you are a monster cause you sound like Darth Vader about to collapse every second of everyday, not only do I feel so tired, can't keep weight on and look anorexic and I look like and feel like death when I am at my worst, but I have to worry about not having insurance to cover this. Even when I have insurance, my bills pile up and I struggle to pay them. If I can't get or can't afford insurance, what will happen to me? Will I be left to die of this? This is what I live with (and the people who have this) everyday of my life. It affects EVERY single area of my life...my work or lack there of it, my ability to raise my children, my ability to be a wife, and my social life. I might look OK if see a picture of me (though at times I can see the difference), but listen to me try to breath and you'll know a little about my suffering. Why do I have to go through this? All because I went into have a routine laparoscopy for 45 minutes and I TRUSTED the medical team! I trusted them to take care of me! Instead, they look my life away from me. They failed to use the right size ETT and check cuff pressure. So, doing this might cost them a little money. Not much, but a little. Since these injuries are hard to trace, proving them are hard and so being sued is not much of an issue, so why bother? However, I know that they would bother if it was their mother, their sister, their daughter, their aunt, or their wife going through this. I'm a real person who has a real family and could really die all because I TRUSTED that medical personnel would take precautions. I was wrong, and here I sit, forever changed.
Anonymous
Anonymous
<Patient Safety Letter>
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