Discussions By Condition: Medical Stories

PLM Mis-Diagnosis

Posted In: Medical Stories 3 Replies
  • Posted By: com4tsweets
  • March 8, 2009
  • 05:07 PM

Courtney’s Story
Born 10-22-77.…………Died 01-13-09
Courtney Leigh Hewitt is my daughter and she was 31 years old when she was taken from us prematurely, leaving behind, not only me, but her mother Susan , her loving sister Heather and her four beautiful children, Chloe’ age 11, Kylie age 10, Claudia age 8 and Alexander, 7, who absolutely adored their mother.
Now, comes the grieving, the mourning and yes, somehow the mending of all the broken hearts of everyone who knew and loved her..
It was not her choice or wish to leave this earth at such an early age. Although, Courtney was diagnosed with HIV in 2001 she was compliant with her medicines and doctor’s appointments or at least we thought she was until October, 2008, when she began to shows signs and symptoms of some one who had suffered a stroke. This being the case, we went to a local hospital where an MRI and a CT Scan were performed.
A day or two after, we contacted her HIV doctors to inform them of her change in health and scheduled an appointment, took the Tests to them for perusal. We were informed then that she had not been compliant with her HIV meds or scheduled appointments and due to the HIPPA Privacy Act Law, we could not be notified. Although her last appointment was in the Spring of 2006, Her doctor , Dr. De ****s assured Courtney and I at that time, her symptoms were apparently Neurological and not HIV related and suggested we consult with a Neurologist.
So, our quest which led us down this tragic journey began……after what seemed like an eternity , we were able to find and establish and put our faith, so we thought in a doctor, who assured us and convinced us our precious baby girl Courtney had indeed suffered not one, but two strokes, the second more severe than the first.
He, the Neurologist, having Courtney’s medical history and aware of her HIV status, assured both Courtney and I that it was indeed strokes she had suffered and her condition was not related to HIV.
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 not to do anything less than put our faith and trust in him as her caregiver. Especially after her HIV doctors assured us it was not HIV related ,but 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 several weeks prior to our second appointment with him.
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 states, we can not see Courtney Hewitt, without a referral from Medicaid. Keep in mind he had already accepted and examined and diagnosed and written her a prescription the previous week and was treating her as a 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. 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 the prescription to the Hospital with what they had asked (a simple four letter word STAT) so that we could have the tests he had requested done 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.
Well, here it is February 10th, 2009 and needless to say he never faxed the prescription!!!!
Later that afternoon, I took Courtney to Florida Hospital South in Orlando.
There, a few days later, another Neurologist performed another MRI and CT scan, much to our Shock and Amazement, the Neurologist assured us, there was never a Stroke and she was diagnosed with PML (HIV related) not quite understanding why her HIV doctors didn’t realize this.
PML , we certainly never heard of this awful HIV related disease until now…………..down below, I ask of you, if you can, please read carefully as we have and try as difficult as it may seem to you, put yourself in our shoes, as parents and if Courtney were your child……How could this happen?
Keep in mind, when her HIV doctors realized it was PML and the HAART meds referred to in the data below were necessary if there was any chance for Courtney, not to beat the disease, because we know there is no cure, however, with the meds, had they been administered in a timely manner (at the on-set) and not at the middle or ending stages of the disease, the chance we had, that Courtney had and Chloe’, Kylie, Claudia
and Alexander! We know God only has the answer, but we want to know why, the misdiagnoses were made
And How her HIV doctors could not have caught this in a more timely manner, so that none of this would have had to happen , at least so prematurely.

It was horrifying at 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! The odds were 50/50 that it would have slowed down the process and I as her father, Chloe, Kylie, Claudia and Alex would have had Christmas and New Years with Courtney for possibly two more very special and cherished years and not suffered through the agonizing past four months. We all know that long term we would have had to give her to God one day and the odds as they were 50/50 were drastically decreased and taken from us, due to mis-diagnosis and lack of knowledge 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 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 the HIPPA Privacy Act, if tweaked just a little, this could all been avoided and we would still have our daughter and loving mother of four small children still here on this earth with us!
Reginald T. Hewitt
Orlando, Florida 32835
321 388 1952

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