Open Letter from Jean

Open Letter from Jean

jean1To 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).

jean2My 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 404-452-4402 or by email
jeanmhi@aol.com

Sincerely,

Jean Martin Bowles

Date: December 16th, 2013 | Categories: Patient's Experiences | By: | Comments: 3

3 Responses to Open Letter from Jean

    jean i have read your story many times and it still amazes me what a strong person you are. you are a great inspiration to me and everyone on this site.

    Tony Harris

    I am having treatment for stenosis and your story and braveness has deeply touched me. The support from your family is remarkable and so is your fighting spirit. Don’t give up as change will surely come your way. We live in the dawn of remarkable breakthroughs and so our hope should always remain alive. God bless.

    Sandra Bratton

    My dear Jean, i have exactly the same condition for the same reason, i was intubated with a size eight and should have been a size four, i am tracheostomy dependent i have a silver negus which has now been permanent for just about 5yrs, ive had a couple of major reconstruction operations without success and too many Laser treatments so just i can Keep Talking, My life has totally changed because of this condition. I know i would not be here without my consultant. Thank you for sharing your story really helps to know im not alone.

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