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?

How Have You Contributed to Sickle Cell Disease Month?

Since my exit from the hospital last month, I have been trying to recuperate and fully recover. Well to say the least, I have had a few set backs, but "Praise be to God", I keep moving forward. Right after Labor Day, (a wonderful evening listening to a live band overlooking the community that puts on this yearly gathering), I went into a crisis. Upon visiting my doctor, I decided to manage the pain at home. We determined I would be able to know the warning signs of shortness of breath, fever, and uncontrollable pain which would be signs that I needed immediate attention. I am now recovering from this setback.

For those of us who have Sickle Cell Disease, the question is, "what are we doing this month which recognizes our Disease?" Are we giving time, talent or service to the recognition of SCD?Are we giving continued financial support toward the cure we all cry for during a crisis? Are we advocating or are we sitting back waiting for those who are invested in finding a cure to do something. I advance this argument because I want to know whether we who are affected with SCD intensely advocate for a cure like others such as Muscular Dystrophy, Cystic Fibrosis, etc. Are we actively seeking the funding for programs that could help Sickle Cell Foundations across America? Is there more we can do? Do we lobby for our disease? If the answer is NO then we need to turn that answer into YES!

Many of you probably ask what are you doing? I am participating on a Sickle Cell Forum at Morehouse College. The forum includes the Sickle Cell Foundation of GA, The Red Cross, and others. I will follow up with a blog after the forum. Go out and contribute if you are able!

On The Other Side of Through

On July 15th I had a Port placed in my chest. It just wouldn't heal and 2 weeks later I was back in as an Outpatient to have the Port removed. I would suspect they looked at my BMP to determine if I would heal appropriately. BMP/Basic Metabolic Panel (blood test) determines if total protein, albumin and lymphocyte counts are in normal range. Oh well, it's water under the bridge. Or is it? Within 5 days, I was hospitalized again due to pain and difficulty breathing. Thank God for grown children. My daughters took my wife and I to the emergency room at 2:30 a.m. as a Direct Admit into the Hematology/Oncology Unit. I was in familiar confines and know the personnel by shifts now.

My hospital stay was 18 days --- the longest stay thus far. It seemed as though I could not shake the hospital. They got me started on pain med and oxygen awaiting blood test to come back to determine appropriate treatment. Thought this was routine. By Saturday my hemoglobin/hematocrit had dropped from 9/26 to 6.9/20 in 2 days. I had; elevated creatinine (5+), potassium (500) and low magnesium. I was a wreck. I was given 2units of blood. Since I have antibodies it took two days to get both units in Me.


After several days it wasn't the crisis pain but pain from gout in my feet that was giving me trouble. I can't take allopurinol for gout and colchicine for the pain in the joints. To say the least I was in quite a pickle. In addition, my hemoglobin/hematocrit was not moving upwards but trending down although my kidney functions were coming back down. Two more units of blood was required to see if that would stabilize me.


During this time I also had a consult from a psychiatrist to determine if I was depressed. I didn't mind this since I once sold anti-depressants and know how blacks suffer undiagnosed. We sat there and went through a discussion and ended up agreeing to allow a follow-up in a couple of days before a diagnosis. It turned out that I was fine. I was happy I did this because we all can fall into a depressed state when our recovery doesn't go well. Spending 18 days in a hospital room is no joke.

Some Good Things Turn Out...Not So Good

I visited my Doctor on Monday, July 27th, to seek out why my port wound would not heal. You see it's been over 10 days since it was placed in the upper right side of my chest. Well, my Doctor informed me that I needed to go back to Intervention Radiology and let them determine whether it will heal or need to be taken out. I hate going back to the hospital...I try to stay as far away from hospitals as I can. This illustrates how we sometimes feel jerked around. My biggest concern is whether this much activity will set my recovery back or for that matter bring on a Crisis. Go figure...

I checked into the hospital today (July 29 my sons 26th b'day) to get my port removed. My incision will not heal. Because I am on a blood thinner (warfarin), they had to draw my blood to determine my PT/INR, which measures bleeding time. I waited on the gurney for them to come back with an update. One of the PA's came in and acknowledged that my warfarin levels were high and therefore I would be given fresh frozen plasma (FFP) in order to keep my bleeding controlled during the removal of the port. I was given two bags of FFP and went to the OR suite.

As they prepped me for the port removal, I could not help but let them know how dismayed I was and that I hoped the removal goes smoother than the placement. After about 20 minutes I was back in my station waiting for the Versed/Fentanyl injection to wear off. I was released around 5:00 pm. On my ride home I thought about how much we are on the battle field. Oh well, at least this saga is over. Now it's time for healing.

The link below will connect you to the Howard University, Stamp Out Sickle Cell Walk to be held September 19. Your can also find out what other cities are doing for Sickle Cell Awareness Month.

http://www.soswalk.org/

How Do I Feel

Before I get to the camp stories I want to address how I'm doing since many of you have asked . To say the least, I am a little weak from the 8 days of hospitalization. Most don't realize how physically draining a hospital stay can be. You never really rest.

I had a port placed in my chest because my veins were hard to access. Many nurses were uncomfortable trying to find a vein to draw blood or place an i.v. line. I reluctantly allowed the Port to be placed. The procedure took about 30 minutes. What they don't tell you is that you will be sore and you may bleed because you are on heparin which keeps the port from clogging. This was not a pleasant procedure. I know this is a procedure which has benefits for the patient and care givers but right now I am not feeling it! Oh well, I guess that is why they send your A$$ Home. Go figure....damned if you do...damned if you don't.

Another comment, I have the best parents and wife in the world...Many of my caregivers asked me, "where is your dad?" Another nurse said, "You have the greatest Dad in the world." They missed him because most of the time when I am hospitalized he is right there in the room with me. He is 81 years old. He sleeps on the pullout couch in the hospital watching over me and ensuring that I get quality care. The caregivers have grown to admire him and his commitment to me. He also realizes that most of my care falls on my devoted wife and that she to needs help as it relates to my care and her own health (Lupus). Thank God for FAMILY...

Those of us with SCD should be forever grateful to our family and friends who assist and comfort us. Our battle is won when we ask for and recognize quickly the help that is sent to us from the "Most High". We must always be vigilant and prepared.

We must never let the defeat of past misfortunes defeat the next step!

Camp Crescent Moon Day 6 - Hollywood by Day--Super Hero by Night (Theme)
The Boys and Men lost in the annual Tug Of War. The guys have lost 6 out of 7 years. Way to go Ladies. Is there a statement in this dominance?

The Kids have been preparing for the Camp Crescent Moon BET Music Awards. Each cabin develops a routine and are judged by the audience. The routines are filmed. They will also have a formal dinner celebrating the evening. The awards presentation will be the final event and conclude the activities of a successful camp.