The Grinch Who Stole Christmas...Big Insurers

I was sitting at my desk editing my memoir when I began looking through the mail. My Medicare Access (supplemental, Cigna) sent me a notice of discontinuation. I sat there for a moment in disbelief because the same exact thing happened a year ago with Coventry. After my initial frustration of having to search providers, I settled down and began my search.

I called Secure Horizon. After our initial intro's, in which the Rep was happy,we got to business. He started asking for enrollment information and that's when our exchange went haywire. I told him I was on dialysis with End Stage Renal Disease. He told me he could not insure me. He said no one in GA will insure Me. I said, What about Obama Care and not denying people with preexisting conditions? Not being able to be dropped? He told me to go to the website and it states it clearly. Insurance companies are enrolling people through the Medicare websites, yet are not disclosing criterias that make you ineligible.  So I called Medicare and as was told I did not meet the criteria due to my recent diagnosis of ESRD. I asked what was the deal with any Insurer being able to sell a policy in one state and then drop them at the end of the year because they don't make a profit? The bottom line, it's common practice. So, I don't qualify under the regulations for Supplenmental Healthcare policy.  How can anyone in a similar position have any peace of mind?  For now I must go to Origial Medicare and be responsible for the 20% co-insurance.

Clearly the big Insurers knew exactly what they were doing when they lined the pockets of the Politicians.  I am sitting in dialysis posting this blog enjoying this ride God is taking me on. His Grace and Mercy has brought me a mighty long way. He Loves Us Very Much!

On a happy note. While in pre-op waiting to have my catheter inserted into my belly this anesthesiologist (about late 60's or so) asked me if he could shake my hand. I asked, "is it because I beat the odds for men with SCD?". He responded, "Yes, I've yet to meet a 56 yr old male with SCD, besides I am suffering a battle with Cancer and know the battle you are fighting."

MY FAITH IN OUR LORD JESUS GREW STRONGER.

Keep Your Head Up

I checked into the hospital, Monday, November 28, 2010, for a proceedure which  would place a catheter into my abdomen allowing access to do home dialysis.  Its called a Peritoneal Catheter to assist in Periotoneal Dialysis.  This was just a routine procedure.  Well, there will  always be setbacks.  Yet, God has a wonderful plan tor you.  Just stay thankful and prayerful so you can eventually appreciate the outcome.

My hemoglobin had dropped from 8.5 to 5.2 gm/dl over a periods of a week. To say the least this is not a good sign.  The Dr's. want to continue my scheduled surgery and so the search was on to find me blood.  As I have stated before the Blood Bank has real difficulty matching my blood due to the amount of antibodies.  Typically, I have to wait for 5 days and the units arrive in two's. Although I was prepared for this wait, God had a new plan....just for you.  My 4 units arrived within the day. Praise be to  God Almighty.

  Hope all have a wonderful and safe "Holiday Season.  Keep me in Your Prayers.  So I am here in
 dialysis ready to receive my transfusion.  Thank you God and The American Red Cross.

I will be; Chatting, Tweeting, and Face book the outcome so stay tuned.  Keep it moving and keep your head up.

Many Questions ...Many Concerns Dialysis

One of my lagging issues after leaving the hospital is a decision to do Hemodialysis or Peritoneal at home.  It has to do with lifestyle.  You see being retired gives me some flexibility but I find that my desires conflict. Having said that,Prayer always works.


Hopefully I've placed the proper considerations in place and come up with an answer.

I decided on peritoneal because in the long run I will be able to dialyze daily or at night while I am asleep.    Hopefully, the consideration about cleanliness and infection won't be a problem since I am always conscious about infection.  I've worn a permacat for the last two months and had no infection.  I  do have a slight concern, all those fluids in my body at night and whether the Baxter pump will do the job.  Oh well, everything has its risk.

My other diatribe, if that's the right word, I am not a big fan of Davita, the clinic where I am currently being dialyzed.  I think they are inefficient and place the patient at risk due to being overburdened. That is why trying to give a return to investors based on numbers and people does not work. You see when companies outsource and cut corners ultimately the patient is at risk.  We must speak up each and every time we feel uncomfortable from the caregivers we are assigned to. We can't let the system drive us. We must drive the system as customers.

Catheter placement Dec.1. Wish me well!

What are your thoughts.?

Time To Get In The Game

Sometimes group Advocacy does not work. Individuals must have the courage to act! So let us put the pressure on. We need to support local Foundations, like Sickle Cell Foundation California. MY daughter Tara is a certified Counselor and my sister Mary Is the Pres & CEO.
I urge all of you to get involved.

Target: Members of United States Congress
Sponsored by: Sickle International Family S signature goal: 100,000
Signatures: 319n

In the United States, there are >80000 people affected with SCD. It affects 1 in 400nd 1 in 19000 Latinos and has a carrier rate of 1 in 12 and 1 in 100 for black and Latino populations, respectively.  In 1970, Scott  highlighted a substantial difference in the research effort for sickle cell anemia compared with other chronic childhood diseases, measured by the number of National Institutes of Health (NIH) grants. Scott  noted that there were 3 times as many grants for the more highly publicized conditions of cystic fibrosis and muscular dystrophy as there were for SCD
Sickle Cell Disease.
Sickle Cell Disease from the Patient Point of View  Follow-up to the meeting of October 19, 2009 with Mr.  Kareem Dale, Special Assistant to the President for Disability Policy.

Sickle Cell Disease: A Question of Equity and Quality Lauren A. Smith, MD, MPHa, Suzette O. Oyeku, MD, MPHb, Charles Homer, MD, MPHc, Barry Zuckerman, MDa



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I'm Still Here

Many of you have wondered when i might blog again? To tell you the truth, I wondered also. God has blessed me with an abundant life, filled with a wonderful wife and three wonderful adult children. I exclaim their praise every chance I get. For them, and blessings from above, I will continue to write.

Well, I have been quite ill this year. In and out of the hospital every month. The end of September I found myself in the hospital. I was there for a crisis. They placed a port in my, chest and after getting back to my room I began to bleed from the site and the nurses could not get it under control. From there they gave me an exchange transfusion. From there I found myself in ICU.

To say the least my Kidney's shut down. I became a dialysis patient. For many years I knew this was inevitable. Did I expect it? To be honest, I was on borrowed time. Most men with SCD who live beyond 40 are on borrowed time. Was I scared? Yes. Although I knew I lived to see another day.

I developed Shingles from, stress and Cellulitis on my left thigh. Yet God allowed me to survive. I was released 34 days later. Today, I am being dialized 3 times a week. I feel great and am hopeful that my recovery continues.

I received, the below recognition, which validated why I should continue to blog. Admittedly, I had no desire for a long time. whoever nominated me I thank you

"Congratulations! Sarah here, and your blog, Sickle Cell Anemia... The Male
Perspective, was determined to be one of the best blogs to exude overall
brilliance. And so, it has received our 2010 Top 15 AnemiaBlogs Award
presented by Medical Billing and Coding!"

Hospital Stay... Longer Than Expected

To say the least, I am Posting from my hospital bed. I've been here since July 8th, 19 days ago. Am I tired of this place? I am. Yet I want to leave in good shape and not because I can't take the hospital any more. I am receiving attentive care and the rest is up to the prayers sent up by So many; along with my own mental attitude.

After celebrating my 56th birthday on the 21st, I kept reminding myself how grateful I am to be here. You see Males with SCD have shorter lifespams as do women. Some of this difference nay be attributed to quality of care since we males try to prove how tough we are. Another consideration might be. Males tend to drop out of the health care network due to a lack of guidance. In other words no one but God can love us more than we love ourselves.

The main concern for me at this point are my Kidneys. Due to my age and hospitalizations I hav a lot of edema. Therfore when transfused I put a lot of pressure on my Kidneys. Heart and lungs. It's very uncomfortable and takes time for the Lasix to work

I've learned to be patient and not rush my body, how about you?

Recuperating From The Battle

Wanted to let you know that sometimes we are down..."But Never Count Us Out!"

Many of you know the sudden onset of a Sickle Celll Crisis.  Many of you know we can be perfectly well during the day and then the pain starts. What do we do? We take pain meds until we hurt so bad that we submit to getting medical attention. When do you know? Can you call your Doctor? Does he respond appropriately to your distress? I ask these questions because my Hematologist is great. He is on point because he knows that I work as hard as he does to better my quality of health.  One of the things I appreciate about my doctor is he directly admits me to his unit rather than allowing me to sit in the emergency room.  This reduces the time I am without pain meds, oxygen, fluids etc.  How is your relationship with your doctor? 

My last admission in May was a result of my hemoglobin dropping from 9.0 to 7.2.  My physician thought that I needed a transfusion and therefore admitted me.  I went into crisis after being typed and crossed. I attribute that to waiting for blood as well as the frustration of the staff not being able to find a vein for an I.V.  My choices at that point were to have a PIC line put in (which could not be done for 36 hours) or wait until the next morning when the VAT Team would be available.  This is a downfall when being admitted on the weekend.  So my creatanine went up to 5.8, critical level, Potassium was 7.0+ another critical level.  At that point my physicians consulted and prescribed Kaexolate and fluids with insulin in attempt to lower my potassium.  I received 2 units of blood a day later and given diuretics.  My hemogolobin went from 6.0 to 6.9.  Not much improvement!  Two more units were ordered.  Another day's wait!  After receiving the additional 2 units, my hemoglobin went to 8 and my kidney function began to stabilize.  Potassium came down and my energy level rose.  The next day I was released due to my request.  Bad idea!  I probably should have stayed another day or two.

Upon my arrival at home, I felt that the transfusion would allow me the energy and strength to be my old self.  What I didn't realize was my body's inability to recover after being transfused.  I say this because over the last 2 years I have been hospitalized and transfused every 2 months.  The lack of exercise, conditioning and age has lengthened my recovery time. I also think that being hospitalized as often as I have makes you want to hurry up and get out even when you are not well enough.  How may of you leave to soon? 

We all know the battle is in our hands.  But by the grace of God, no matter how hard we try to be our worst enemy He watches over us.  Be strong!

http://www.cnn.com/2010/OPINION/03/19/coley.obama.tavis.smiley/index.html?hpt=T2
Great Article Checking Tavis Smiley

Battles Are To Be Fought

I recently had a cataract removed from my right eye which prevented me from reading, driving and writing on my blog.  I must apologize for my mispelled words and gramatical errors. To say the least I thought I was on the way to resolving my issues....I was not.  Several days ago I woke up with an excruciating headache.  I saw my MD and was admitted to the hospital for testing, CT Scan.  The results were negative but I am yet to find out what was going on and why this happened.  I didn't want to be in the hospital in the first place and really pressured my physician to let me out on a Saturday.  He gave in and let me go. Sometimes doctors just give in to the patient's request.  I still don't know what caused the headache but am still taking Fioricet to keep the pain away. I'll find out tomorrow about the success of my cataract surgery and if the headache derived from the surgery.  I do know there is no retinal damage, which is a good thing..

I often joke that I live to fight another battle on another day.

In addition to my not feeling well, I was contacted by the Sickle Cell Disease Association of America to help publicize a collaborative effort to recruit minority donors with the American Red Cross.  I already have an affiliation with them.  I was sent a link regarding misappropriation of fundsl.  While I certainly can understand the impetus to get back in good standing, it is these moments that make donors question whether to fund sickle cell programs and how viable existing foundations are.  In that regard, do these acts place additional light on existing foundations?   Do they call for unecessary and untimely audits which take away from the mission of the foundations?

With the internet, social  networks, blogs etc. as alternative methods of peer to peer communication, will this replace a  major mission of the foundations?  One of the main goals of our foundations is to educate our communities about SCD.  If this is not done,  grants may start funding alternative competitors?  I don't know the answer but it begs the question.  What are your thoughts?  We are in a new age which calls for new methods. We must not let those who fought the wars for so long evaporate from our consciousness.We  must stand vigilant for those who stood for us.  Tactics and strategy may change but the Mission must never waiver nor our cherished foundationsl

I am adding the link to "Black Rip Off Report", http://www.blackripoffreport.blogspot.com/

Until the next time....Stay on the BattleField!

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.