What happened when the Intravenous Gamma Globulin infusion (IVIg) was delayed to day 42 after the last infusion? By LtCol Eugene B Richardson, USA (Retired) BA, M.Div., Ed.M., MS (Counseling) and patient with CIDP/Autonomic PN for 42 years due to exposure to Agent Orange.
In February 2005, the day before my infusion was due, the Infusion Center at a local hospital called and stated they could not get my product. It seemed that no one would help. We were on our own. I want to make it clear that my wife and I had received great care at this hospital and this is the only situation in which this occurred. The fact is the Medicare reimbursement rate for IVIg was horrible for hospitals but this has since improved.
By day 42 every symptom returned with a vengeance and breathing and talking at the same time became impossible. Life was again a horrible nightmare and all the symptoms were back. Fortunately my wife found the product at Imperial Point Medical Center in Pompano Beach. In the emergency room with the help of my knowledge and my neurologists, they finally provided IVIg. Within two hours the long recovery back to my normal abnormal self began.
In 2015 we still need training for medical practitioners in the clinical diagnosis and treatment of the neuropathies. Changing knowledge is easier than changing poor attitudes toward neuropathy, but it must be done even if one doctor or professional at a time. We are making progress and have come a long way from the decades of the 90’s and before.
Patients must be allowed to speak if we are to solve the problem of clinical knowledge and practice. For those who disagree, let them tell me that we patients cannot share our experiences and provide informational and educational material while emphasizing that only a doctor can diagnose and prescribe. Examples of this an be found in professional publications such as Neurology NOW or IVIg Living where highly educated lay persons with advanced degrees write with references to the doctors.
Not long ago there was a book by a patient’s father whose courageous son was a double amputee and who fought for years to get help. In his book Whole Again (link to Amazon.com) he speaks of the ‘curse of doctors’ and how he did not get the help he needed until he stopped seeing the doctors as ‘gods’ and refused to allow the doctors to behave like ‘gods’. Yet with the legal rights of the doctor who by law can diagnose and prescribe, it is easy to fall into this trap and fail to understand that every time a mother helps a child with a cut from a fall they have diagnosed and treated.
While the reason for the law is obvious, the application of the law must not put the patient in the back seat and we are grateful for those doctors who have learned to really listen and hear (these are two different things) the patient and what the patient is sharing. Often the enemy of the doctor are the automatic tapes they have learned and run for each symptom or complaint, when they may need to dismiss the tapes they learned in the books and really think about what the patient is saying to them. Article on Doctor Patient Relationships.
So if you lead a neuropathy organization or support group, please encourage patients to speak up and write of the clinical experience for they are right or wrong at about the same percentage of time as the professionals! We need to hear from both and challenge both and forget about losing creditability.
NOTE: Copyright 2010-15 Network For Neuropathy Support, Inc. dba Neuropathy Support Network.. This article may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author. Contact him at E-mail: firstname.lastname@example.org
PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician. These articles reflect the subjective experience of the patient while living with neuropathy and Intravenous Gamma Globulin Infusions