………………………………... A True Story
Courtney Leigh Hewitt is my daughter and she is 31 years old . She is a single Mom with four beautiful children, Chloe’ age 11, Kylie, age 10, Claudia, age 8, and Alexander, age 7.
We as a family had just returned to our home in Orlando after a Fall trip to South Carolina for her sister Heather’s wedding combined with a trip to Savannah and Charleston, two cities, which were Courtney’s favorite places to visit. The weather was gorgeous and the horse drawn carriage tours through the historical old home districts was absolutely breath taking and it was indeed the trip we had all been anxiously awaiting all year long!
The wedding was beautiful and took place in a small country church, decorated with lots of greenery, roses and birds of paradise. Everyone looked great and Courtney was almost as beautiful as her sister the bride, with a glow of good health and happiness and content. Everyone commented on how great she looked. That day was August 29th 2008, the beginning of the end!
Shortly after we had returned to Orlando, Courtney and I attended an Awards Ceremony at Orla Vista Elementary School where Kylie, Claudia and Alex go. She never missed one of those and I tried not to when I could. She had a strong belief in getting a good education and always made sure they attended not only school regularly, but church as well.
We had just gotten home and was grabbing a quick bite to eat, because we were both famished from having to skip breakfast that day. She started to notice a slight numbness and tingling sensation in her left foot.
It was nothing extreme, and she described it as not painful, but just not quite right and difficult for her to explain. It didn’t go away and in just a matter of days maybe a week later she started to experience
the same with her left hand and index finger.
As our concern became stronger we began to search the internet for the apparent signs and symptoms of what we were witnessing and she was experiencing. Our first thoughts were that since she was a smoker, perhaps she had suffered a mild stroke. It got to the point that when ever Friends and family members and saw her, at first glance suggested the same.
The next morning I strongly suggested and encouraged her to see or call her doctors for their evaluation and possible diagnosis. Friday morning, she finally called her doctor and was told to go to the emergency room right away! Shortly after her arrival at Health Central an MRI and CT Scan were done and on the following Monday the reports were taken to her doctors for review and was told her condition was Neurological and advised Courtney to consult with a Neurologist.
November 1, 2008
After what seemed like an eternity, we finally found a wonderfully, delightful and compassionate Neurologist (so Courtney and I thought) who after examining her, assured us and totally convinced us it was definitely Neurological and Courtney had indeed suffered not one, but two strokes, the second more severe than the first.
This diagnosis was made by the Neurologist at the first examination at which that time he performed some in office test to confirm to us his diagnosis of the stokes. Why would we question him, the professional? We had no reason to, so we put our trust in him, as her caregiver, especially after her other doctors had already assured us it was Neurological!!
He even wrote her a prescription for numbness of her left foot, which we had filled at our local pharmacy and started taking immediately and was scheduled a follow-up the next week and asked to bring the film from the original MRI and CT Scan we had done October 29, 2008.
November 7, 2008
The next week (the date of the second appointment) as we are about to walk out the door of our home, the phone rings and his office manager says, ”we can not see Courtney Hewitt, without a referral from Medicaid.”
Please keep in mind he had already accepted, diagnosed and written her a prescription the previous week and had started treating her as his stroke patient.
After another week goes by, we do as he says, schedule an appointment, carry with us what he had requested (MRI and CT scan) and the referral. He greets us, examines Courtney again, performs some more in office test and then again re-assures both Courtney and I, she suffered not one but two major strokes after viewing the MRI and CT Scan reports. He writes a prescription for more test to be performed, so we took them to the Hospital for scheduling and was told there that unless we took the prescription back to the him or called him and ask him to fax over the prescription to the Hospital with the word STAT written on it, it would be 15 more days before they could schedule her test.
I phoned his office immediately, informed him of what the Hospital was asking of him, so we could get the test (he had requested) done ASAP, he became angry and ugly and shouting to me that he had never heard of such a thing. Thinking to myself, o.k. he is going to do what I am asking, so I politely handed my cell phone to the lady at the scheduling desk and she handed it back to me, stating he was rude and ugly and wouldn’t cooperate and hung up the phone on her.
I immediately called him back and calmly asked him, to please, please fax his orders over immediately to the Hospital so that we could have the tests he himself had requested so we could get the proper care for Courtney. “His exact words were, “I am going to fax this prescription for your daughter, but do not bring her back to me, because I refuse to see her again as a patient.”
After which he slams the phone down, hanging up on me!
Well, needless to say he never faxed the orders!!!
Later that afternoon, Hubert, was able to help me convince Courtney that she needed to be in the hospital, so we could find out what was happening to her. Needless to say, upon arrival to Florida South the urgency to admit her was quite obvious to the doctors.
After a week in the hospital and some tests and observations by Neurologist, Infectious Disease Specialist, etc. and various other physicians and another MRI and CT Scan was performed, much to our shock and amazement we were informed that there never was a Stroke and she was diagnosed with PML (an HIV related condition) not quite understanding why her doctors didn’t recognize this a month prior, our concern grew!
What the hell is PML, we certainly had never heard of this before. In fact, we were told by some of the health caregivers it was the first case Florida Hospital had ever seen. Amazing!!
I ask of you, if you can, please read this story again and try as difficult as it may seem for you, put yourself in my shoes, as a father or a parent and if Courtney were your child……How could this happen?
After being discharged from the hospital, I took Courtney to her HIV doctor (an Infectious Disease Specialist) assumes it was PML (only after I suggested to him that is what I/we thought it was based on our own research), he assured Courtney and me, after starting her on the HAART meds she would be fine in a couple of weeks!!
Those were his exact words and we (Courtney and I breathed a sigh of relief!)
God holds the answer as to why and we are all brought up not to question!
My questions are for the HealthCare Providers whom we put our complete trust in faith in as professionals….. How can you call yourself an Infectious Disease Specialist and not be knowledgeable of PML and it’s signs and symptoms……and be able to act accordingly?
How can you call yourself a Primary Care Physician and not see the urgency in writing the order for Courtney’s feeding tube as requested by me and her HIV doctors, so her meds could have been given in a more timely manner?
How can you as a Board Certified Neurologist, knowing a patient’s HIV status and history, go on the assumption that they suffered not one but two strokes and treat her as a stroke patient.
Why would you not want to co-operate with the hospital to have the tests completed which you yourself ordered?
Why, why, why, did you and why would you refuse to do so after telling me you would and in the same breathe, tell me, “DO not bring your daughter back to me again!!” WHY!!!
The phone went silent…….He hung up the phone……never to hear from him again!
*** If not now at this particular moment, I know the day will come and you will stand before a power greater than there is on this earth, the Judge of all Judges and you will answer to him!
Back to the Hospital
As Courtney continued to get worse, her communication with us almost became non-existant. It went from just being extremely difficult for her to even swallow her meds to impossible to swallow them! I called and informed her HIV doctors, was told to inform Courtney’s Primary doctor. (here we go) I phoned the Primary doctor, informed her of Courtney’s condition changing over night( we had just seen her the afternoon before) told her Courtney couldn’t swallow at all so we were unable to get her meds in her orally. I told her, pleaded with her to please write an order for a peg tube (feeding tube) as requested by the HIV doctor as he was not allowed to do so. I was told NO, but I could take Courtney to the emergency room if I felt the need to do so!
I immediately phoned the HIV doctors back, told them what had transpired……was told they attempted to talk to the Primary doctor to stress the importance, etc. of the tube and also refused.
Like sand through the hour glass…….these are literally becoming the last days, hours and precious minutes of Courtney’s Life!
After a few phone calls on the behalf of this wonderful staff member in Courtney’s Hiv doctor’s office, she was successful in finding another Primary Care doctor, one with a heart, some caring and compassion!!
We received another call from this same wonderful staff member at the HIV doctor’s office telling us, the arrangements were made, the order written, pre-registeration at the hospital was done and bed management would call us later that evening at 8 pm… with a bed number and we could bring Courtney straight to the hospital.(this was Wednesday)….hmmmmm! Finally!
The call never came…..was promised it would be the next morning…hmmmmm! NOT!!!
December 15, 2008
It wasn’t until Friday morning, by ambulance that Courtney was taken back to the hospital where she lay in the Emergency Room for hours…….before being moved to a room…..Not until late Sunday afternoon, did we get her Peg Tube!!!
A sigh of relief for us as a family, finally we feel like something is being done….
The HAART meds that desperately should have been administerd almost 60 days ago, (in a more timely manner) were started!
At this time, we could still communicate with Courtney and she could see. She could tell us to bring the children up to visit, etc.
January 9, 2009 (Friday)
Courtney wants to go home!
We decide to bring Courtney home so she can at least have some peace of mind and be in the home she loved and be with her children. The ambulance arrives and as they back slowly to our front door, I fight to hold back the tears! This is it, I knew in my mind right then and there, that we had worked diligently through the night to paint her room, put up new blinds, curtains and yes, prepare her death bed!
As they opened the door of the ambulance, as it swung open, she was softly sobbing as tears rolled down her cheeks. I gently took her hand and said, “Courtney, baby, may Precious Baby Girl is home”, and she gave me the old Thumbs Up!!
The arrangements were made for Intensive Round the Clock care provided by Hospice of The Comforter, whom I can not say enough good things about! Around the clock Nurses so Angelic, as if they were hand picked by GOD himself, stood watch over Courtney and each would stay later and arrive earlier than was required.
One especially, Laura stands out and forever will be in our hearts!
Throughout the weekend, one by one our family and friends began to gather, to continue to pray and comfort one another.
January 12, 2009
Today is Monday and it is a beautiful day out, almost like Spring and the cool breeze is blowing outside and all of the family that gathered with us to over the weekend, each began to say their goodbyes to Courtney with hopes and prayers of seeing her the around Easter weekend, but each knowing in their hearts the chances of that were extremely slim.
By mid afternoon, I guess they were all gone and the house was quiet, the kids would soon be coming in from school. As the afternoon progresses, the sounds of their voices and laughter seem to calm Courtney as reflected by her body movement and gestures! At this point her vision was pretty much gone and all she could see was shadows of light and movement. I so wanted to feel in my heart and believe somehow that she could still make out their beautiful faces.
That evening around 8 pm when the Hospice nurses changed shifts, Laura who was an absolute angel to us and so caring and compassionate to Courtney every second, every minute of her 8 hour shift and would always arrive early and stay longer than required!
Shortly after she arrived, she noticed changes, the changes we were dreading but were inevitable. Sure enough, as the night progressed and as I sat by her bed and held her hand while I talked to her, I too could see the life as it began to slowly away from my Precious Baby Girl. There were a few times when she would squeeze my hands and open her eyes, the bluest eyes you’d ever want to see. As day began to break, Laura whispered to me, “Todd, it won’t be long now”.
The End Draws Near
January 13, 2009
The End draws Near
It’s now Tuesday morning, January 13th 2009, 8:18 a.m., as Laura, whispered to me again, “it’s time to let her go” and ask me if the children wanted to say goodbye to their Mom before she goes to heaven to be with their Great Pa Pa Barber who had died just last year.
Chloe’ whose 11 year old had already left for school, but before she left she came into her mother’s room and whispered softly in her ear, “I love you Mommy, I’ll see you in heaven someday”. It was all I could do to keep my composure.
Kylie, Claudia and Alex came in and one by one, climbed up on the bed, cuddle up beside her and said, ” goodbye Mommy, we love you and we will see you and Pa Pa in heaven!” It was almost as Courtney was telling them, “Mommy loves you too, now hurry or you’ll be late for school”. Tears on their little faces, they jumped down and off to school they went!
As Hubert, my Mom and I stood their with Laura, Courtney opened those Big Beautiful Sky Blue Eyes wider than ever before, with such a look and glow about her we had never seen before and one of which we would never see again!!
It was indeed most horrifying towards the end….she was unable to communicate, not even by writing, to finally her sight being robbed from her, never to see the faces of Chloe’, Kylie, Claudia and Alex’s again!
Whether Courtney saw us when she opened her eyes and took her last breathe, I’ll never know, but in my heart as a father and a parent, I have to believe she did!
Until recently, a diagnosis of PML was quite grim. The one therapy used for treating it, a toxic drug called cytosine arabinoside (ara-C, cytarabine, Cytosar-Ur), is given through a shunt directly into the brain. It has shown marginal, if any, benefit. It is no longer routinely used, though some feel that new drug delivery systems warrant renewed research.
Before the arrival of potent anti-HIV therapy, the average time from diagnosis of PML to death was 1-3 months. Recent studies show that using aggressive anti-HIV therapy may result in an indefinite remission of PML for some people.
Nearly 1 in 10 people with PML have recovered with or without treatment. Spontaneous recovery or stabilization is more likely to occur in people with CD4+ cell counts above 200. The unpredictable nature of this issue presents a perplexing challenge to doctors treating PML.
The Bottom Line
PML is a rare condition affecting the brain, caused by the JC virus.
PML is difficult to diagnose, definitive diagnosis requires a brain biopsy.
JC virus DNA levels in cerebral spinal fluid are prognostic. Higher levels relate to more aggressive disease.
Using potent anti-HIV therapy, including a protease inhibitor, has had a profound positive effect on treating PML.
Using a protease inhibitor after a PML diagnosis, as well as changing to a new anti-HIV regimen with a protease inhibitor, has resulted in quadrupling the survival rates of some people living ten years or more after a PML diagnosis.
A new study shows that "enhanced" anti-HIV therapy, or adding the drug enfuvirtide to a regimen, may be very promising. Whether or not adding newer classes of drugs, like integrase inhibitors, are equally promising has yet to be seen.
Dr. Joseph R. Berger, chair of the Department of Neurology at the University of Kentucky, studies neurological disorders such as progressive multifocal leukoencephalopathy. PML, a rare viral diseases... I think if you have the time to view his You Tube presentation at YouTube - Progressive Multifocal Leukoencephalopathy
The HAART Meds could have at least slowed down the progression of PML according to the doctors had they been administered in a more timely manner.
There was that 50/50 chance with the meds and 0 without! Those odds were drastically decreased and taken from us, due to mis-diagnosis and lack of knowledge of all of the physicians involved.
I say to you, ” Florida Hospital, ” how can a facility of your size and stature, allow a patient in dyer need of a feeding tube, to lie there in your bed for almost three days before doing so, only after I have to call your switchboard operator and demand to speak with an Administrative Official, in order to get any satisfaction?
To you, the Neurologist, for your mis-diagnosis and negligence and yes you, the Primary Care Physician, for refusing to write the order for the peg tube (feeding tube) for our precious Courtney, “ Yes, she was an HIV patient, and yes people live for 20 years or more with the virus.”
What is really sad about all of this, is the fact that if the HIPPA Privacy Act could be amended just a little, this could all been avoided and we would still have Courtney and her four small children would have their mother.
An Educational Trust Fund has been established in honor of Courtney’s Life, for Chloe’, Kylie, Claudia and Alex, by one of her very special and dear friends, Mr. Tony Lucca.
Donations accepted at any branch starting next Tuesday, April 7th in the
IRREVOCABLE TRUST for the benefit of THE CHILDREN OF COURTNEY HEWITT
Please visit tonylucca.com official website for more information on this wonderful friend, talented entertainer and incredibly amazing human being!
Note: Through all of this, believe or not there was apparently no damages or liability incurred due to the medical attention or lack there of from any of the HealthCare Professionals, due to Florida Law. If you are not comfortable with the current HIPPA Privacy Act and would like to see an amendment that would hopefully prevent this from happening to you or someone you love, write your Congressmen today!
Orlando, Florida 32835