Topic : 12/29 "Is This Normal?"

This is the only guest that has ever compelled me to register and post a message. As I have read through the threads, I see that I'd missed the original airdate, but the replay of this show has generated continued response. Originally I would have voiced my anger, but I see that it's pretty much been covered. My immediate reaction to Mary's insensitivity was disgust with the approach that she had taken, she should have been ashamed to call herself a caregiver.  Mary was given the greatest test of strength and she was failing! Hopefully she is finding her way toward acceptance and hopefully some assistance.  

My husband, Michael, had donated a kidney to his brother 19 years ago. The transplanted kidney failed within one year. 12 years later, my donor husband was diagnosed with renal failure. Two months after we told his brother the news, his brother committed suicide. Michael spent 3 years as a dialysis patient while waiting for a kidney. It was only through the support and understanding of  his spouse that he was able to maintain a positive outlook. After 3 "false alarms" and 7 months on the top of the wait list, he finally received a new kidney. The abundance of joy was our reward. Seven weeks after his new kidney, he had a heart attack and died at 42 years old.  

In the three years that I have been a young widow, I never had blame for the patient, or his recipient. In the years that Michael struggled with the side effects of kidney disease, I never once complained. It was our problem, and we were grateful that we had each other - no matter what! If the shoe had been on the other foot, we didn't think that I'd be "as good" a patient, nor that he'd be "as good" as a caregiver. Our roles were defined and we accepted it as our greatest test of commitment.  He made our family strong. (The issue of uninformed consent & no follow-up of living donors to collect and share data to transplant centers and prospective donors and patients looms with me today, but that's for another show!)   

I would have liked to heard Dr. Phil offer some counseling options, or question the practices of the transplant center they'd used. Is there no patient advocate? In 1991, Medicare set guidelines to assist lung and liver transplant recipients - hasn't the transplant center given any guidance to this family? I don't know that this will ever get to Roger & Mary, but there should be some help through some of the resources I am listing below: 

Financial Assistance Resources* 

NTAF has over 20 years experience empowering you to raise money in your communities to cover uninsured medical expenses related to transplantation and catastrophic injury.  

If you are an organ transplant patient, NTAF is available to help you to raise the funds you need to pay for medical expenses not covered by insurance. 

NTAF will be with you every step of the journey – from the initial discussions about fundraising, through phases of active fundraising, through payment of medical expenses, and back through the cycle again as appropriate. 

The compassionate, professional staff at NTAF offers support at many levels – fundraising ideas and how-to’s, media relations, creating materials such as event flyers, helping set up a patient website, being there for you when you have financial questions and concerns – we are accessible and there for you. 

American Liver Foundation (New York, NY) The American Liver Foundation is a national, voluntary non-profit health agency dedicated to preventing, treating, and curing hepatitis and other liver diseases through research, education, and advocacy. 

American Liver Society