The Vasculitis Foundation has medical information kits that were created especially for doctors. Let me know who they are and I will arrange to get this information to your doctors.
Tell us about your doctors now:
NM Vasculitis Doctors (NMVasculitis.org)
http://www.nmvasculitis.org/Home/support/nm-vasculitis-doctors/nm-vasculitis-doctors
Ideally, you will tell us how wonderful your doctors are, and we can all swap success stories. However, there is also a dark side to this coin. What can happen when someone does not get lucky and draw a good doctor? Not all stories have a happy ending.
The most tragic vasculitis story I have personally been involved with in 2009 involved a woman who called me from Texas to get help finding treatment for her brother. After the family reported losing contact with him for several days, the sheriffs broke into his home and found him collapsed on the floor. They transported him by ambulance to Albuquerque, where he received critical care at a hospital and then was moves to a nursing home for further care and "rehabilitative treatment." His condition was very serious, but he was verbally responsive. He has one niece in Albuquerque, but his primary resources were his sister in Texas and his other sister in California. I am intentionally withholding the names, but I assure you this is too terrible not to be true.
At one point the doctors mentioned that he might have vasculitis, and that is how his sister in Texas eventually found her way to contacting me through the Vasculitis Foundation. I gave her the names of doctors I know and the telephone numbers to the clinics. She called and was then given the number for Doctor to Doctor Referral. They told her his attending physician should call in and consult with the rheumatologists to verify his symptoms and get expert advice about how to continue. It was that simple.
His doctor at the nursing home refused to even accept the phone number. She told the family that his quality of life was so poor that he was not expected to live and that there was no point in even calling for a second opinion because it would be a waste of time.
Now, the patient was still responsive at this time. When his sister asked him, "Would you like me to try and get you some treatment?" She reported that his response was "Yes." The doctor in question still would not call the number or release him for a second opinion.
He was later transferred to Hospice care, where they immediately found and treated a terrible bed sore. Three inches deep on the surface, and seven inches rotted below that which had not been treated by the nursing home doctor. All of that had to be removed down to the bone. This injury of neglect I found to be horrible, even from a second hand perspective.
The sister pleaded with the doctor, but could not get him released without that doctors referral. Due to some technicalities in order to get a second opinion, she took steps to get him reassigned, but again the same doctor refused to cooperate. Was it pride? Was there a medical reason? Nobody knows why, and she would not explain it to the family in any way that they could understand. In fact, when the sister from Texas travelled to Albuquerque to meet this doctor to discuss her brothers condition, the doctor avoided her and would not meet with her.
One nurse finally strongly urged them to get him out of there, and to move here to Albuquerque, take an apartment and take care of him themselves.
The family did visit as often as they could, but they not have the resources to uproot their families and move here to take care of him personally. Nor did they have the funds to pay for rehabilitation for his arthritis or to force the situation to get him to see a vasculitis specialist or whatever he really needed. They never knew for sure what he needed, because of the roadblocks put up by this nursing home doctor.
I spoke to the sister from Texas again this morning on the telephone, and she told me her brother died a little over a month ago due to complications from his various conditions. He was cremated due to the extremely bad smell related to his rotting bed sores.
The question remains whether it was necessary for him to die as soon as he did? If he had not been denied treatment through whatever decision process this nursing home doctor used, which went against the wishes of the family and also against his own wishes, then he might still be alive. The hardest thing for the family is not knowing for sure if he might have been successfully treated if given a chance. That concern is going to plague them forever.
The point of this story is to illustrate how very important it is for all of you to share with each other, through this chapter, the names of your doctors who already know about vasculitis and how to treat it, so that we can direct new patients to those better doctors. Heaven forbid you should ever experience anything so tragic as this story, but when you encounter a negative experience with a doctor, you should share it with the membership so that nobody will every suffer the way this man did and the way his family continues to suffer over his possibly unnecessary death.
Tell us about your doctors now:
NM Vasculitis Doctors (NMVasculitis.org)
http://www.nmvasculitis.org/Home/support/nm-vasculitis-doctors/nm-vasculitis-doctors
1 comment:
I neglected to mention in this story that this man was only 57 years old when he died.
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