My Testimonial at the American Red Cross Minority Recruitment Annual Luncheon - February 18, 2010

After being in and out of the hospital for the past several months I am thankful to God that I feel Great.  My last entry on this blog was in November.  I hope this makes up for the time away.

I spoke at The American Red Cross Annual Minority Recruitment Luncheon with about 400+ in attendance. Here is the Testimonial.

To Dr. Satcher, thank you for that wonderful key note address. To the Dias and Cynthia in particular, the American Red Cross and its board, thanks for inviting me and my family and finally to the guests and others in attendance wondering “who is this guy?” I hope after my testimonial you will know a little bit about a disease and more importantly why blood donation is as critically important and seen as a “gift of life” by many like me


I would also like to thank my wife, Patrice my backbone and my parents, Herman and Gloria for without them and their love and devotion I would not be here today. Therefore, this is truly my journey.

As a little boy I was sickly but didn’t know or could not comprehend why. I had to be inside or in bed more than other kids. My parents, in 1958, learned of Sickle Cell Anemia from my doctor. Needing more information they contacted a person who had lost two children to SCD before the age of 15. He loaned my parents tapes on Sickle Cell Disease from Howard University which was one of the few medical research colleges studying Sickle Cell Disease.

While I won’t elaborate much about this disease I find it striking that many minorities and the community as a whole know little about SCD. This disease is caused by an altered gene that produces abnormal hemoglobin, the protein in normal red blood cells that carries oxygen throughout the body. When affected red cells lose oxygen they collapse into a sickle, or “C” shape and become stiff and sticky. Clumps of these cells block blood flow and can cause severe pain, organ damage from lack of oxygen and stroke. Anemia often develops in people with the disease because sickle cells die off quickly and bone marrow does not make new ones fast enough. This is why I am here today.

Last month I had 7 units of packed red blood cells given to me over a period of three weeks. The reasons why I needed so much blood was they could not find matching blood and my hemoglobin continued to drop to unacceptable levels. Why? Because minorities give so little donated blood and they can’t find matches in the blood bank. So a person such as me must wait and pray that blood arrives in time. That is why I call it the “Gift of Life”.

You see, while lying in that hospital room waiting for a transfusion, my kidney function diminished because my hemoglobin was so low and sickling was increasing. A normal male’s hemoglobin (red cells) is 14. Mine 8. I am typically transfused when my hemoglobin is around 6. That’s really critical. So when I have to wait for blood, my organs break down and I am in more trouble. So now you know why I stand here today.

As a child I lived a fantastic life. You see, my parents made a choice. Let him grow up as most normal kids or let him be sickly, afraid and dependant. I really never felt I was different. What I realized early in my life was when in a competitive position, be the best. I learned that from my Dad, the coach and principal. I read a lot. I got that from my Mom, who pushed me to be outstanding in the classroom. She was my 3rd grade teacher. When I got to 4th grade, one day wanting to be like others, I decided to misspell rabbit on purpose during a spelling test. Upon completion the teacher marched me down to my mom’s class. My mother took me into the boy’s room and paddled me. As embarrassed as I was, she taught me a valuable lesson. Never short change yourself to satisfy others and always do your best.

So I played many sports in high school but more importantly due to my health, I realized early that I would not be a college athlete. Instead I became political. The first black to be President of the Senior Class, immediately after integration, at the same school attended by Senator Sam Nunn and Larry Walker, two of Perry, Georgia finest.

During that senior year I was looking for a college to matriculate. I had acceptance to Ivy League, Big Ten, West Coast universities as well as Emory and UGA. My parents also wanted me to apply to HBCU’s like Howard and I did. I was encouraged to go to Howard. You see, that was their plan all along. If I didn’t stay in GA then they knew I would be in somewhat good hands at Howard, near the hospital.

My first assigned housing at Howard was in Charles R. Drew Hall…..How ironic? Here I am, one who would depend on the “Gift of Life”….living in a dorm named after the father of the “Gift of Life”. Dr. Charles Drew, who perfected blood banks storage of plasma that is used by the Red Cross today, who would have known?

Validating I had SCD while at Howard; I was told if I became sick to take time off from classes and social activities. Well, I’d never been told such things. When I went into a Sickle Cell Crisis, I rested. Most of time I forged through the tiredness and pain.

While I was informed about my disease in college, I was determined that this disease would not get the best of me and so the race was on. I was told my life expectancy was 21 years. I was 18….let’s go! So much to do: to beat the odds.

Well during my 4 years at Howard I never let anyone know I had Sickle Cell Disease. I was embarrassed. In fact, the only time I mentioned the words was to a doctor.

My sophomore year I started working for Senator Sam Nunn. I saw this as an interesting career in politics. I was hired as a Legislative Aide and I worked part-time for the Architect of the Capitol as an elevator operator to make extra money. It was a choice job. You learned how this nation’s laws and policies were really crafted. You knew how the senators would vote, what was on their minds and their agenda. You heard more than what was heard in the office. You also learned who was there to legislate and who was there because of power, status and finance. Elevator operators were beneficial to the mainstream media as off the record sources. During those 3 years and while in school, not once was I hospitalized or did I miss a lot of classes due to a sickle cell crisis.

Upon graduating I became a campaign manager for politicians in Shelby County, TN. I won 2 out of the 3 elections. I then decided to move back to Georgia and work in the State Capitol. Realizing government wasn’t my cup of tea nor did it pay well.

I began a career working in private industry as a Pharmaceutical Representative for Pfizer. The drug companies were recruiting minorities to their sales force in 1980. While interviewing at Pfizer the HR Manager told me I didn’t have the sales nor the science background required for the position. I thought….I was successful in my sciences throughout school….let me show them. I said to him….”How much money do you carry in your wallet?” He said, “What?” I said, “how much do you carry?” He said $200. I said, “I’ll bet you $200.00 that I come in #1 in my training class if you hire me.” He said, “I like your certainty and confidence. You are a natural salesman because you asked for the business and closed the deal. You’re hired.” By the way……I got the $200.00.

After years of success in sales, I was promoted to Philadelphia. Married with 3 small children, I had my first full blown Sickle Cell attack which required a blood transfusion, this was in 1989. Upon discharge from the hospital I became life threateningly sick. We found out I had an allergic reaction to the blood due to the amount of antibodies. After finding that out, I was leery of any transfusion. Ten years of being in the Pharmaceutical business and advice from my doctor I decided to seek a career in a less stressful environment.

Well, I accepted a job at a proposed Bomb Facility with Northrop as an Employee Relations Manager in my home city of Perry. Yes, you can go home again. We were going to hire 1,600 employees. NO STRESS! Well they decided not to build the bomb and transitional work was brought in.

In 1993 I was asked to go to Bethpage New York to handle Employee Relations as part of a team when Northrop merged with Grumman. My task was to make sure layoffs were appropriate and to reduce the lawsuits and our financial exposure.

Upon completing my assignment, by the way I never got sick…..I returned home and was promoted to Director of HR. I became ill in 1997. After being out about 6 weeks, I was treated differently by my employer. My illness was a concern for them. I went from an outstanding employee to a problem employee. The company decided to close the plant due to loss of business and move the work to other locations. I was offered jobs in locations I would not accept, mainly due to health concerns. I eventually left Northrop Grumman.

I later found a job here in Atlanta as a Senior Division Manager of HR for a High Tech Co. Two years later after moving my family I was getting ready to attend my son’s graduation from Stanford University. The night before our departure my world turned upside down. I was going into a Sickle Cell Crisis. I thought, “Oh, I can handle this.” I told my wife to go to graduation and that I would be there in a few days. My Dad decided to stay with me as my family went on to Palo Alto.

I ended up in ICU on a respirator for 10 days, close to death. I was informed by my physician that unless I retire he could not promise me 5 years.

Well here I am today, 5 years later at the American Red Cross Annual Luncheon. Has the road been rough, yes? Last year, I was in the hospital almost every other month. I was transfused 5 times in 2009. Each time I thanked God for seeing me through and thankful to those minority donors for giving blood.

Today, I am encouraged because we have people like Cynthia whose focus is on the minority population. We have advocates like me who have beaten the odds. The average life expectancy is 47. I am 55. The main reason today why I am a Sickle Cell Soldier is because of my wife. She encouraged me to talk about my disease and not hide. “The truth will set you free”. She also told me I had something to offer and that God did not bring me back for nothing. What I realized was life is more important than careers. It’s about family, relationships, faith and giving.

In closing, I would not be here today if it wasn’t for family. My supportive wife, who has Lupus, takes care of me. I truly know what “in sickness and in health” requires. My parents validate their commitment to a Son. As a matter of fact when I am hospitalized the caretakers ask me, “where is your Dad?” You see, at 82 he stays with me in my hospital room until I am dismissed, rotating with my wife. She’s there during the day and he’s there at night. I truly know what love and family is all about and I thank them as well as my mom who is always with my dad.

In conclusion, I am forever grateful to the American Red Cross. To the audience, do more than spread the word to the minority community about donating blood….Give it yourself. We Sickle Cell Warriors need it desperately so we can stay on the battlefield.

Thank you so much. May God bless you and the American Red Cross.

Healthcare For All...Why We Must Keep It Movin'

I have been thinking about this health care reform legislation and while it is significant that the House passed its bill we must remember there are two more obstacles to cross. We must clear the Senate where they have yet brought it to the floor for debate and passage, and the second hurdle is the joint conference before final passage for the President’s signature. That’s why it ain’t over until the “Fat Lady Sings”?

The reason I am so passionate about health care reform is because I have lived and breathed healthcare since my medical retirement. I have firsthand knowledge of seeing it when I worked in the Pharmaceutical Industry for Pfizer in the 80’s and what I witnessed in the emergency rooms as I am being directly admitted to the Oncology medical floor. To see the pain and suffering, over crowdedness, and cattle call is unacceptable and this is in a private for profit hospital.

There are over 40mil uninsured and over 100mil underinsured Americans today. When I think about my experience as a leader of Human Resources and would have to look for savings each year it was easy to call my Insurance Consultant and renegotiate the rate as all Companies do each year. You would also increase the premiums of the employees. That is what they do in Corporate America. Although I didn’t like doing this it was one of those choices you had to make when you were in Corporate America having to consider shareholder value and P/E ratios.

Believe me the insurance industry can do almost anything they want to do because of the Anti-trust loopholes Congress has given to them over the years. As a matter of fact, I was informed that my coverage will be canceled at the end of the year. Coventry informed me they were dropping my type of coverage in Georgia. They gave no reason but I suspect it was because they were losing money. I have been hospitalized almost every other month this year and some of the stays have been over 14 days. I have had some really expensive procedures done that cost them a pretty penny not counting my weekly or bi-weekly procrit/aranesp shot. Yet, the issue is; should they be able to drop people at will?

For those of us with chronic diseases who can’t afford the type of insurance I have you must let Congress know we need the Public Option included in Health Care Reform. We need to put pressure on the insurers and drive down the cost of health care in this Country; otherwise the alternative is the further decline of our way of living. No Country can survive the pressure of a get all you can get attitude of the insurers and call it , “the free market”.
Gird Your Bootstraps and let’s advocate until we get the legislation we need to put pressure on insurers so all Americans have adequate healthcare. It is a moral obligation and a right. Call your Congressperson today!

Where You Been?

I must apologize to my readers for not posting for so long. I have been sick to say the least and felt I didn’t have a clear head in order to write something worth writing. I entered the hospital on October 7 and did not leave until the 15th. After 2 days of trying to deal with crisis pain, I called my doctor and he said to come in. I was hurting pretty bad. To the extent that one of the nurses stated they had never seen me in such pain.

Usually I can show a great deal of restraint until I get an I. V. but this time I was really hurting bad. On day 2 my Kidney’s started shutting down and my creatinine went to 5 (trouble) my normal kidney function is 2.8. I was visited by my Nephrology group to keep an eye on this. My hemoglobin/hematocrit went from 8/27 to 5/20. I was not hemolyzing. My doctor ordered a blood transfusion for 2 units hoping the transfusion would get my levels back up. It didn’t. Two days later my levels were 6.9/23 and I was still feeling bad yet was not on much pain meds. My hemoglobin/hematocrit was still low and not moving upward. My doctor ordered 2 more units of blood. After receiving the blood my levels popped up to where we wanted them and my creatinine started to come down. I was released after everything stabilized. As to why I am having so many transfusions and admissions. My doctor states it’s a fine line between my Kidney functions and congestive heart failure. I take lasix to take the fluid off me and my body getting too dry causes me to go into a crisis.

For those of you who have these symptoms, I hope my explanation of what you need to watch for as you age is helpful. For those of you who give blood at the American Red Cross, …You might have saved my life. Please give blood to save someone’s Life.

Thank God….and the many prayers. Keep them coming, I need all I can receive. Thank You!

How Do We Handle Guilt?

I would like to continue a topic which I addressed on another blog, “People Living With Sickle Cell”. A parent talked about guilt associated with the many twist and turns impacting the lives of a child with SCD. Most of us will equate the guilt with pain and suffering although there are many psycho-social issues affecting our quality of life. Understanding these issues requires constant dialogue, study and commitment by our community and should be a topic we consistently focus on.

Let me state from the outset, most families feel they receive adequate support from their families and friends and most feel other family members adequately assist them in care giving. Yet, many agree hospitalization and home care impacts all of the family. I want to discuss the guilt felt by those living with the disease and how they view the affects it has on the family.

I felt the topic was apropos because my daughter was moving to California and wanted to take her car. There was no one who could help her drive but her mother. Because of health issues I could not travel and so I needed someone to stay with me. My wife didn’t want to leave me and my daughter was reluctant to leave. As parents we have always told our children they have to live their lives and concern for me and my disease should not be a reason not to achieve or grow up. Therefore, what choice did I have but to encourage this new phase in her life?

I asked my 80 year old parents and my uncle if they would stay with me while my wife took the trek across country with my daughter. So good so far! To say the least, I had a vaso-oclusive episode (pain crisis), which put a lot of strain on my parents. The stress was whether I could handle this at home or required hospitalization. I handled this from home. That got me to thinking. What affect does guilt have on stress? Does guilt/stress percipatate crisis pain? How much guilt do we with SCD have? Are we a drag on our family? Do we seek the additional medical attention needed to assess our mental state?

Although the afore mentioned questions are ones we need to address, I find the question of planning for these moments to be essential in reducing stress and guilt. Because as we all know, development of self independence, adaptation, and self-determination are cornerstones of successful quality measures. As we grow from adolescence into adulthood and old age, are we prepared to deal with chronic issues and feeling of loss of control?

Morehouse College Forum

My night at the Morehouse Forum on Sickle Cell Disease was very eventful and momentous. I say that because this was my first testimonial/advocacy experience since retirement. In September of 2007, I flew to the National Sickle Cell Symposium with my wife after being invited as a patient advocate and after my first day I found myself at Howard University Hospital with Acute Chest Syndrome. To say the least it has taken me almost 2 years to recover. So as I sat at the forum I could not help but think back to what happened in Washington, D C and thank God for his many blessings.

Back to the forum. The event was sponsored by Morehouse College, Public Health Science Institute along with the American Red Cross and the Sickle Cell Foundation of Georgia. The guest lecturer was Dr. J. K. Haynes, PhD Morehouse College. On the Panel was myself, patient advocate, Cynthia A. Smith, Regional Director, American Red Cross, and Phil Oliver, Counselor-Sickle Cell Foundation of GA. A mobile unit was on site to screen students and staff for the Sickle Cell trait. In addition, on Wednesday, the American Red Cross was to be on campus for blood donation. T-Boz was expected to be on campus to drum up support for donations a National Spokesperson for Sickle cell Disease. To say the least kudos go out to Corey Lumpkin, my friend and neighbor who planned this wonderful event bringing awareness to SCD.

Dr. Haynes, dean of the the division of Science and Mathematics, spoke about the micro-biology, origin, and new advances toward a cure for SCD. One of the interesting points is if you can keep Fetal Hemoglobin production at or above 30% those with Sickle Cell Anemia would not have Crisis. He stated he thought Hydroxy urea might do it but it is not the magic bullet and does not work in many patients. One of the other statements he made regarding SCD in Africa is; there are over 180 thousand babies born with SCD and that only 5% survive. Wow!

The other interesting bit of information is since 1972 when President Richard Nixon, funded SCD screening the NIH has funded only $923 Mil ...that's all? Compared to other diseases this is oh so small. Which is precisely my point how do we as advocates help create, find and support funding initiatives. This will attract more researchers and research dollars as well as support Foundations who provide the screening, counseling and advocacy on behalf of Sickle Cell patients? In addition, according to the American Red Cross, minorities are the smallest contributors by group to give blood. How do we recruit minorities to give what most of us need to survive? How many of your friends and family think that SCD is an old dying disease and give no thought about supporting finding a cure?

It 's time to wake up...The SCD Foundations are trying to stay afloat. With funding cutbacks by Government, Agencies, Foundations, and Individuals these institutions serving our communities may become extinct. Are we willing to let this happen?