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Strong Memorial Hospital Transplant Program in Rochester, N.Y., Is Heartless & Cruel!
(03/04/11)
Today I spoke with Erica Walker the 35 year old lady who has been denied a kidney transplant by Strong Memorial Hospital in Rochester. Erica has had 2 prospective, altruistic, living donor candidates. One was her sister the other, a stranger who found Erica after an article was published in a local paper. The article was written by, Jeanette Ostrom, one of 3 women known as 'Women on a Mission'. These ladies also founded the Western New York Kidney Connection which assists patients in finding altruistic, non-related, living donors. I have known Jeanette for 6 years and got to know the family when she asked me to help her son Paul find a living donor. He did get his kidney transplant in 2006. Paul had similar problems at Strong Memorial Hospital transplant program in 2005.
After testing Erica's sister the transplant center informed Erica's sister was a match but because they are African Americans there might be a Sickle Cell Anemia 'trait' they would not move forward with the surgery. Remember, this was based on the possibility of a 'trait' of Sickle Cell and possible bleeding. Then the news paper article prompted a lady in the Buffalo area, Crystal, to step forward. This generous lady went through all the hoops in meeting the protocol requirements as a living donor. The testing went on for weeks. Finally, Erica was told Crystal was a good match. Another 2 months went by while Erica and Crystal waited for Strong Memorial Hospital to set the date for surgery. Erica called several times after not hearing from the hospital. She was given numerous excuses which were meaningless. She was told the surgeons were working on the schedule. The out of the blue, Erica is told there would be no transplant at Strong Memorial. She asked why?
Well, the transplant coordinator told her they were worried because Crystal worked 2 jobs and that being an altruistic donor for Erica she might go into debt. Crystal has the full support of her employers money is not an issue. Booth Erica and Crystal were stunned. Of course, the transplant coordinator told Erica she couldn't really talk to her about the reasons for medical privacy reasons.
This is cruel! This is not an exceptional incident. It is repeated dozens and dozens of times each year. We are going to try and stop it this time for good. We are filing complaints with state and federal authorities and have Pro Bono legal counsel who have agreed to move forward on this matter.
IJEOMA ALAKA the 23 year old lady from Staten Island is still in need of a donor!
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TWENTY THREE YEAR OLD IJEOMA ALAKA NEEDS A KIDNEY!
CAN YOU HELP?
Ijeoma has been ill for most of her life. She was born on Staten Island, New York and managed to graduate high school. She enjoys helping children and if she gets a kidney transplants she wants to attend college to continue studying her interest in child developement. Ijeoma's mother is a teacher in the New York City Public Schools.
Ijeoma has to go to a dialysis center 3 times weekly for 4 hour sessions during each visit. Dialysis is taking its toll on this young woman as it does to all people needing to do regular diaysis treatments over many years. She has to endure frequent hospitalizations.
If you or anyone you know are interested in being an altruistic, non-related, living donor for Ijeoma please contact rfhickey@innovativestrageies.org.
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This IRS 990 Non-profit tax return is for LifeLink Organ Procurement Organization in Tampa, Florida. This is just one of the tax returns we archive every year to demonstrate the greed of these OPO executives. Scroll down and look at the total salaries paid. The money for these salaries come from the organs we are duped into 'donating' to these ghouls without shovels. Look at the executive and management individual salaries. The 2 top people each earn $600,000.00 or more annually.
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The Better Business Bureau Gives A Consumer Warning Regarding UNOS!
"THIS CHARITY DOES NOT MEET ONE OR MORE OF THE 20 STANDARDS FOR CHARITY ACCOUNTABILITY!"
Standard for Oversight and Operations cited as follows:
The Better Business Bureau warning goes on to state, "United Network for Organ Sharing (UNOS) does not meet the following 7 Standards for Charity Accountability."
Two of the standards failed are described in the following manner:
"UNOS does not meet this standard because its board of directors was not provided with a copy of the most recently completed IRS Form 990 (the financial form filed with the Internal Revenue service)."
This was a complaint cited by previous UNOS board members. See the Forbes link at the top of the first page at www.innovativestrategies.us for the Brigid McMenamin article, Organ King".
Standard for Fund Raising Expense Ratio was cited as follows:
UNOS does not meet this standard because according to its consolidated audited financial statements for the fiscal year September 30, 2007, the organization's fund raising costs were 107%.
Again, another issue cited by former board members who complained in congressional testimony in a field hearing in August, 1998 that they were never given complete answers to their finacial questions by UNOS executives.
Go to www.bbb.org to read the negative report!
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| Rob Smitty (r), my donor, his friend Ashley King and me (l), celebrating the 5th anniversary of my kidney transplant in Vail. The transplant took place on 10/20/04. |
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WANT TO KNOW THE TRUTH ABOUT HEALTH INSURANCE COMPANIES? READ THE ACCOUNT OF AN INSIDER, WENDELL POTTER, FORMER CHIEF COMMUNICATIONS OFFICE OF CIGNA CORPORATION. GO TO THE LINK BELOW!
www.pbs.org/moyers/journal/07102009/watch2.html
OUT OF THE BLUE HE SAVED MY LIFE!
The email came among hundreds of others during that February week in 2004. A man I had never met living 1,500 miles away offered to give me a kidney. WOW!
I couldn't sleep that night in November, 2003. Not an unusual event for me back then. I had been on dialysis since March, 1999. On that night as I had on many other nights, I drove to a local restaurant at 2 in the morning to have coffee. That night was different! I had decided to stop dialysis. I'd had enough! No prospects of getting a kidney transplant from the national waiting list. I had done my time, played by the rules outlined to me. Still no transplant!
My life had slowed down. I hadn't been socializing for 2 years. Sure, I received lots of invitations to social gatherings with friends. Too many times I couldn't go even though I had accepted those invitations. Too tired! Too much vomiting! Too weak! Soon the invitations began to slow and then there were none. Friends don't know how to deal with one of their group who is dying. It is too hard on them to face the reality of death in their midst.
I had decided it was time to give up. The question was, when? The holidays were approaching. I didn't want to burden my family with the decision I had made. I know! I'll tell them after the new year. During the interim, I checked the resources available to me. I called the local hospice. Could they come and care for me at home during the last few days? Yes, gladly! I checked on the prices for cremation. It could be done for the no frills price of $1,100.00. I'll be dead! I don't want an expensive casket. I don't want a burial plot. I don't want an expensive viewing or as we Irish call it, a wake! I'll be dead! My friend Dr. Phil Freedman could drop my ashes over the Rocky Mountains from his Cessna 182.
Sally and I spent a quiet Christmas that year. No family visiting. I was pensive. Sally asked what I was thinking about several times. For days I hid it from her. Finally, I relented. "I'm going to discontinue dialysis." She looked at me with a blank stare. Did she hear what I had said? After a quiet long pause she said, "OK. Why?" I explained it to her. She seemed to accept my reasoning. Because she was a trained dialysis nurse long before I was diagnosed with kidney cancer we were allowed to do home hemo. She was good! It still hurt when those two 14 gauge needles were inserted in my left arm for every treatment session. I still felt ill, tired and weak when the sessions were finished. But, Sally was an excellent nurse.
She seemed to take it well. Never cried. Never showed any emotion. Nevertheless, the next day she went in desperation to see another physician friend of ours, Kent Petrie. He's a religious man. I'm not. He called and said he wanted to talk to me. Sally had seen him. She was very upset. Kent and I got together. He asked me to wait another month. I thought he was going to try and convince me it was against his God's law. He didn't. Of course I questioned Kent about what good another month on dialysis was going to do? He didn't know but said I shouldn't give up on hope.
Early on when I first began dialysis it was HOPE that helped me get through the surgeries needed to prepare for dialysis. It was HOPE that motivated me to endure every dialysis session. The HOPE was that I would be lucky and get a kidney from the national transplant waiting list soon. It was when I lost hope after undergoing dialysis treatment for 4 years at that time I decided I wasn't going to suffer any more. HOPE allows each of us to endure in times of hardship. Kent's words brought just a tiny glimmer of HOPE back to me. I'll continue dialysis until the end of January, 2004.
Dr. Alfred Blalock, the father of cardiothorasic surgery at John's Hopkins University School of Medicine said, "Death is a very humbling thing to live with day in and day out!" He was speaking about patients who faced certain death until he began heart surgery in 1942. I learned the full meaning of his statement through 5 years of dialysis. Oddly enough, death became my friend once I had made the decision to face it on my terms in early 2004. Fortunately for me MATCHINGDONORS.COM and Rob Smitty robbed death from taking my life. Not only did Rob Smitty save my life he helped me understand death. That understanding led to a second gift. I no longer fear death.
Most of us fear death and have difficulty dealing with the 'Terror of Death'. I recommend reading, "Staring At The Sun" by Irv Yalom, M.D. Irv is professor Emeritus of Psychiatry at Stanford University School of Medicine. He published the book in April, 2008. It would have helped me a great deal had I had it in 2003. My good friend Walter Lowenstern is a poker buddy of Irv's. Walter has known me since just after I was diagnosed with cancer. Like many of us, Walter sometimes struggled with the fear of death. So when he told me about Irv and his books I was ready.
For me, having an idea of when you are going to die wss a real gift. I felt very fortunate to be able to go through death on my terms. Just think of it, I had been enjoying life prior to being diagnosed with renal cell carcinoma. Sure, I had gone through many of the trials and tribulations of life. Getting married, having children, succeeding professionally, traveling around the world two or three times, vacationing in beautiful places. Then going broke, getting a divorce, illness, depression. My experiences at life have been taken me to wonderfully soaring highs and soul crushing failures and defeats. But, it was life! Today, I wouldn't change anything. It has all been my life journey.
Dialysis had been difficult over the years. It is tough for the patient. It is tough for the patients' families. Dialysis is painful! Dialysis is not a cure! Dialysis is a stop-gap.
Initially, I started out doing peritoneal dialysis. This mode of cleanzing the blood is less stressful on the body than hemodialysis. It requires an access catherter to be surgically placed in the patient's abdomen. However, it is not very effective for large people. I was extra large! I had to talk my nephrologist at the time, Harriet Langely, into agreeing to it. She told me from the outset it would be effective for less than a year. I started it in March, 1999. By March, 2000 I was getting weak, nauseated, and toxic. In April, 2000 I was back in surgery getting the fistula placed in my arm so I could start on the more effective regimen of hemodialysis. I started that mode in June, 2000. Although I didn't know it at the time, I would continue dialysis until 2004. Early in the morning of October 21, 2004 a few hours after my kidney transplant I needed one more dialysis session because my new kidney was not clearing potassium from my body.
More later...
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| Transplant is about to go! |
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After 2 days of uncertainty and wide-spread media coverage, I was wheeled into the operating room. My donor, Rob Smitty, was in an adjoining room where he was having his kidney removed. Almost 5 hours later that kidney had been transplanted into my body. My life was changed for the best with no more dialysis, no more feeling weak and tired all the time.
The day before this, a reporter published an article in the Denver Post which would also change my life. He wrote about the local Organ Procurement Organization (OPO), Colorado Donor Alliance, selling organs. The piece further revealed no one ever has a human organ for transplantation donated to them. Even though public service announcements by all 58 such organizations lead us to believe people needing transplants could get 'donated' organs, I was stunned to learn these ads are misleading and fraudulent. Thus began my 5 year quest to expose how unfair, unethical, fraudulent, corrupt, and greedy the so-called non-profit based transplant system is in this country as operated by a private government contractor, the United Network for Organ Sharing (UNOS).
That article is below. After reading the word docs below go to:
www.innovativestrategies.org for more information.
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