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!
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Tuesday, November 10, 2009
Friday, October 23, 2009
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!
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!
Tuesday, September 29, 2009
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?
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?
Wednesday, September 16, 2009
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?
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?
Monday, September 14, 2009
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!
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!
Saturday, August 22, 2009
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.
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.
Tuesday, July 28, 2009
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/
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/
Friday, July 24, 2009
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.
Wednesday, July 22, 2009
Day 5 At Sickle Cell Camp
One day removed from being dismissed from the hospital is a time for rest and re-charging the batteries. After many tests to see if my crisis was caused by heart related issues, it was concluded that I was sickling in my sternum...yet it didn't present as pain...hm. Oh well, I guess I still remain a medical mystery. Aren't all Sickle patients medical mysteries? We remain that because our disease is not a glamourous disease. Besides, what Doctors or Hospitals want to care for the Sickle Cell population? Hm...We need health care reform...with the Public Option.
Day 5 at Sickle Cell Camp.....
The children received a VIP at camp today...Kurt Rambis, asst. coach for the Los Angeles Lakers. Can you imagine their excitement...A Laker, The NBA Champions, came to visit them?
You have to love these kids...they are a unique blessing. To view pictures from camp, go to the link below.
http://picasaweb.google.com/lh/sredir?uname=scdfc1957&target=ALBUM&id=5361156216138516001&authkey=Gv1sRgCPXrw8iz8c7CmwE&feat=email
Day 5 at Sickle Cell Camp.....
The children received a VIP at camp today...Kurt Rambis, asst. coach for the Los Angeles Lakers. Can you imagine their excitement...A Laker, The NBA Champions, came to visit them?
Another Camp Story
As I mentioned before...Last night the camp had a scavenger hunt and one of the staff dressed up as the princess. She wore a blonde wig and heavy red lipstick. She was really working her stuff. Today, one of the little boys came up to her and said, "you are the princess!" She responded, "that wasn't me." He responded, "yes it was, ...you have the same teeth."
You have to love these kids...they are a unique blessing. To view pictures from camp, go to the link below.
http://picasaweb.google.com/lh/sredir?uname=scdfc1957&target=ALBUM&id=5361156216138516001&authkey=Gv1sRgCPXrw8iz8c7CmwE&feat=email
Tuesday, July 21, 2009
MORE NEWS FROM CAMP CRESCENT MOON
What a Great Day! I just received the most wonderful present of selflessness given to me...The Sickle Cell Camp at Camp Crescent Moon sang Happy Birthday to me. From Los Angeles to Emory Hospital in Atlanta, their voices rang loud and clear. My heart was so warm and my Soul touched. The Joys of Living!
Camp seems to be going well according to my sources...Tara, Portia (my daughters) and Mary (President and CEO also my sister-in-law) According to them, The camps theme is "Hollywood by day, Super-Hero by Night". They are seeking a villain who roams the camp.
Last night they enjoyed a scavenger hunt to find leads about the villain and trying to rescue the princess. To say the least the Boys won the scavenger hunt.
There are 75 campers along with the staff, volunteer counselors, nurses, doctors and a host of others...including a film crew...filming the video. All come together to make sure that the Kids are in the most comfortable environment possible. The staff is terrific and the Kids are so appreciative.
One of the staff overheard two of the boys talking...One asked the other "do you have sickle cell?" The other answered, "yes". He said, "Do You?" "How about that." This is what camp is all about...The recognition that each one of us is not alone and the acknowledgement that our disease should not be something we are ashamed of. Until we see this as a community and show ownership Sickle Cell will always be looked upon as an orphan disease. That's why I love this camp. It is an opportunity for the youth who are affected by a devastating disease to spend a week not thinking about how they feel and how dependent they are on family and caregivers. They also have a week to dream and believe that all things are possible. God Bless Them All.
Camp seems to be going well according to my sources...Tara, Portia (my daughters) and Mary (President and CEO also my sister-in-law) According to them, The camps theme is "Hollywood by day, Super-Hero by Night". They are seeking a villain who roams the camp.
Last night they enjoyed a scavenger hunt to find leads about the villain and trying to rescue the princess. To say the least the Boys won the scavenger hunt.
There are 75 campers along with the staff, volunteer counselors, nurses, doctors and a host of others...including a film crew...filming the video. All come together to make sure that the Kids are in the most comfortable environment possible. The staff is terrific and the Kids are so appreciative.
One of the staff overheard two of the boys talking...One asked the other "do you have sickle cell?" The other answered, "yes". He said, "Do You?" "How about that." This is what camp is all about...The recognition that each one of us is not alone and the acknowledgement that our disease should not be something we are ashamed of. Until we see this as a community and show ownership Sickle Cell will always be looked upon as an orphan disease. That's why I love this camp. It is an opportunity for the youth who are affected by a devastating disease to spend a week not thinking about how they feel and how dependent they are on family and caregivers. They also have a week to dream and believe that all things are possible. God Bless Them All.
Friday, July 17, 2009
Sickle Cell Disease Foundation of California Camp Starts July 18
How many of us volunteer for Sickle Cell Community Awareness and Service? Some of us are often too sick to volunteer...but some of us are just too lazy.
My sister in law, Mary Brown, is the President and CEO of the Sickle Cell Foundation of California, located in Los Angeles, CA. The first and oldest foundation devoted solely to children with Sickle Cell Disease. They have been in the business for 52 years. As you all can attest to, many institutions with the purpose of finding a cure for SCD are either out of business or under funded. Most diseases affecting black people receive little support from their own community and minimum support from government. Until we raise our voices and demand support this will always be the case. Let Me Get Off My Soap Box!
My reason for posting this blog is to encourage you, your family and friends to get involved. I say this because my daughters have flown to LA every summer as volunteers at the camp. My son supports the camp when he can. They enjoy interacting with the young people who for 1 week have the opportunity to camp with those who have the disease. They feel comfortable around each other, they don't live in fear that they will be ostracized, they learn about their disease and how they and their family can advocate care and treatment during times of need. But, most importantly, they have BIG FUN! They make a video each year and give it to the kids to not only remember the good times but as a keepsake for when times are hard. The video reminds them that no matter what they go through... we have many moments of happiness.
Like many of us, challenges will always be ahead. Just this week...two days before camp the Foundation was vandalized and all of the Lap tops were stolen from the office. In addition funding the camp was touch and go and even I wrote letters to the Food Network and Oprah to help with finding the funds needed to help with food and a Cook for the Camp. To say the least, no one responded to my plea. Yet, I was willing to try anything to help the camp. You see, when I was young there was no camp(s). I had no one to talk too. No one who could understand what I was going through.
I am sure there are many organizations or non profits who support SCD. I have one which is my favorite. If you would like to donate please call Mary Brown. (310) 693-0247 or write to her at 6144 Bristol Pkwy, Suite 240, Culver City, CA 90230.
My sister in law, Mary Brown, is the President and CEO of the Sickle Cell Foundation of California, located in Los Angeles, CA. The first and oldest foundation devoted solely to children with Sickle Cell Disease. They have been in the business for 52 years. As you all can attest to, many institutions with the purpose of finding a cure for SCD are either out of business or under funded. Most diseases affecting black people receive little support from their own community and minimum support from government. Until we raise our voices and demand support this will always be the case. Let Me Get Off My Soap Box!
My reason for posting this blog is to encourage you, your family and friends to get involved. I say this because my daughters have flown to LA every summer as volunteers at the camp. My son supports the camp when he can. They enjoy interacting with the young people who for 1 week have the opportunity to camp with those who have the disease. They feel comfortable around each other, they don't live in fear that they will be ostracized, they learn about their disease and how they and their family can advocate care and treatment during times of need. But, most importantly, they have BIG FUN! They make a video each year and give it to the kids to not only remember the good times but as a keepsake for when times are hard. The video reminds them that no matter what they go through... we have many moments of happiness.
Like many of us, challenges will always be ahead. Just this week...two days before camp the Foundation was vandalized and all of the Lap tops were stolen from the office. In addition funding the camp was touch and go and even I wrote letters to the Food Network and Oprah to help with finding the funds needed to help with food and a Cook for the Camp. To say the least, no one responded to my plea. Yet, I was willing to try anything to help the camp. You see, when I was young there was no camp(s). I had no one to talk too. No one who could understand what I was going through.
I am sure there are many organizations or non profits who support SCD. I have one which is my favorite. If you would like to donate please call Mary Brown. (310) 693-0247 or write to her at 6144 Bristol Pkwy, Suite 240, Culver City, CA 90230.
Keep On Keeping On
After a battery of tests to see what is causing the heaviness in my chest we all agree that it is not heart or lung related issues. Therefore, my physicians feel that it must be a crisis located in my sternum. I found it hard to believe since this discomfort did not present itself as pain. Typically, my crisis does not last more than several days, yet this discomfort has lasted about 7 days although pain meds seem to help aleviate the heavy chested feeling.
Further analysis of my bloodwork did not indicate that I was too dry which throws me into crisis nor point out that I may be in Congestive Heart Failure. Everything so far is turning out normal. So WTF is going on?
One of the essential requirements for extending our life span is to have a team of Doc's who communicate not only with each other but also with the patient. Sometimes they may not know what is wrong with us. Our disease is so unpredictable that we must not let the unknown get the best of us. Believe me I've been tried. We must at some point have confidence in our team to come up with the right diagnosis and strategy. A good team of doc's will go a long way towards coping with the unknown.
With the rising cost of health care we must advocate not only for change but also being treated with the dignity and respect required for all illnesses. SCD is so misunderstood (to be discussed at a later time) it is my hope that blogs, websites, chats and other mediums can be used to get our stories out so that people can better understand our disease.
Oh, by the way here is a link to an article on the health care cost for those with SCD, http://www.reuters.com/article/healthNews/idUSTRE5623EL20090703
Further analysis of my bloodwork did not indicate that I was too dry which throws me into crisis nor point out that I may be in Congestive Heart Failure. Everything so far is turning out normal. So WTF is going on?
One of the essential requirements for extending our life span is to have a team of Doc's who communicate not only with each other but also with the patient. Sometimes they may not know what is wrong with us. Our disease is so unpredictable that we must not let the unknown get the best of us. Believe me I've been tried. We must at some point have confidence in our team to come up with the right diagnosis and strategy. A good team of doc's will go a long way towards coping with the unknown.
With the rising cost of health care we must advocate not only for change but also being treated with the dignity and respect required for all illnesses. SCD is so misunderstood (to be discussed at a later time) it is my hope that blogs, websites, chats and other mediums can be used to get our stories out so that people can better understand our disease.
Oh, by the way here is a link to an article on the health care cost for those with SCD, http://www.reuters.com/article/healthNews/idUSTRE5623EL20090703
Tuesday, July 14, 2009
Staying On Top
Well...I'm back in the hospital and felt the need to communicate with those who follow this blog.
For several days I felt like I was carrying around a load on my chest. Immediately I thought about Congestive Heart Failure and thought I needed to get this checked out. Well, my nephrologist whom I had an appointment with immediately called my hematologist and they thought that I needed to be admitted. Overall I feel pretty good. What this underscores is the need to have a good team of Docs.
This brings me to my second point of discussion. What happens to those of us with SCD between pediatric/young adults and that transition period before middle age? Do we fall through the cracks before seeking care? Do we have to face a life or death situation before we find a doctor? Do we seek a quality doctor/patient relationship only when we have to? Or, do we actively seek improvement to our quality of care and quality of relationships with our caregivers? What do you think?
If you know someone who needs quality care....help them get it!
For several days I felt like I was carrying around a load on my chest. Immediately I thought about Congestive Heart Failure and thought I needed to get this checked out. Well, my nephrologist whom I had an appointment with immediately called my hematologist and they thought that I needed to be admitted. Overall I feel pretty good. What this underscores is the need to have a good team of Docs.
This brings me to my second point of discussion. What happens to those of us with SCD between pediatric/young adults and that transition period before middle age? Do we fall through the cracks before seeking care? Do we have to face a life or death situation before we find a doctor? Do we seek a quality doctor/patient relationship only when we have to? Or, do we actively seek improvement to our quality of care and quality of relationships with our caregivers? What do you think?
If you know someone who needs quality care....help them get it!
Tuesday, June 30, 2009
THE BATTLE IS NOT OVER ..."A TIME OF REST"
Many of you who have Sickle Cell Disease understand the many times we are;...Silent and Missing. Most times it is due to what we call…” Crisis”. This is when we have to go Underground to fight for our “Lives”.
I was happy and doing as well as I could expect on Father’s Day, June 21. I had visited my Dad and Mom and was driving back home with my wife. On Monday, June 22 I awakened with a familiar feeling in my back. I knew what it was and went for the Tylenol to get relief. For the next few minutes I awaited to see if that feeling would go away. My next action was to try a pain reliever…this did not work either. Around 2:00 PM I called my Physician. I was admitted into Emory Midtown around 3: OO PM
A week later I was released after receiving 4 units of blood (over 2 days), ridding my body of several pounds of water and adjusting all of my blood pressure medicines. Each time I am in the hospital I always have to argue with the nurse and pharmacy regarding dosing and schedules relating to my medications. Enough said! This is why we need to converse with each other,... determine the best protocols,... and identify what is required to help ease each other’s concern.
IT’S SO GOOD TO BE OUT OF THE HOSPITAL ON HOLIDAY’S! CELEBRATE SAFELY ON THE 4TH OF JULY!
WISH ME WELL DURING MY RECOVERY...I PRAY FOR ALL OF YOU …MAY YOU GROW STRONGER AND YOUR WALK BE IN GOD’S PATH.
I was happy and doing as well as I could expect on Father’s Day, June 21. I had visited my Dad and Mom and was driving back home with my wife. On Monday, June 22 I awakened with a familiar feeling in my back. I knew what it was and went for the Tylenol to get relief. For the next few minutes I awaited to see if that feeling would go away. My next action was to try a pain reliever…this did not work either. Around 2:00 PM I called my Physician. I was admitted into Emory Midtown around 3: OO PM
A week later I was released after receiving 4 units of blood (over 2 days), ridding my body of several pounds of water and adjusting all of my blood pressure medicines. Each time I am in the hospital I always have to argue with the nurse and pharmacy regarding dosing and schedules relating to my medications. Enough said! This is why we need to converse with each other,... determine the best protocols,... and identify what is required to help ease each other’s concern.
IT’S SO GOOD TO BE OUT OF THE HOSPITAL ON HOLIDAY’S! CELEBRATE SAFELY ON THE 4TH OF JULY!
WISH ME WELL DURING MY RECOVERY...I PRAY FOR ALL OF YOU …MAY YOU GROW STRONGER AND YOUR WALK BE IN GOD’S PATH.
Thursday, June 11, 2009
Do Black Men Die Young?
“Do You Live to Work or Work to Live?”
I asked my Dr. to help me publicize this blog to Male’s with Sickle Cell Anemia because I wanted men to have a voice in discussing treatment, survival, and participate in finding a cure. He said to me, “the reason you don’t hear from men is because there aren’t very many in my practice living. They don’t survive as long as women.” I was shocked to hear such a matter of fact comment. He went on to say that this would be an interesting research project. What do you think?
I don’t believe that I have ever run across a definitive study which stated the mortality rate for men did not exceed the median age of 47 or that men did not live as long as women. I am 54 and I feel really blessed. I attribute my survival to the many good Physician’s and ancillary care provided to me by my family. I informed him if not for the combined efforts of all, I would not have worked for 28 years. That’s when he said, that begs the question, “Do You Live to Work,… Or Work to Live?” I thought that probed to the heart of what we are searching for.
Do men with Sickle Cell have adequate support? Do we shun help from others because we don’t want to ask for it? Do we ignore our Physician’s advise,…treatment? Do we get adequate treatment from our health care providers? Do we give up whereas women fight harder?
These are the questions we need to talk about…someone comment on this phenomenon….
I asked my Dr. to help me publicize this blog to Male’s with Sickle Cell Anemia because I wanted men to have a voice in discussing treatment, survival, and participate in finding a cure. He said to me, “the reason you don’t hear from men is because there aren’t very many in my practice living. They don’t survive as long as women.” I was shocked to hear such a matter of fact comment. He went on to say that this would be an interesting research project. What do you think?
I don’t believe that I have ever run across a definitive study which stated the mortality rate for men did not exceed the median age of 47 or that men did not live as long as women. I am 54 and I feel really blessed. I attribute my survival to the many good Physician’s and ancillary care provided to me by my family. I informed him if not for the combined efforts of all, I would not have worked for 28 years. That’s when he said, that begs the question, “Do You Live to Work,… Or Work to Live?” I thought that probed to the heart of what we are searching for.
Do men with Sickle Cell have adequate support? Do we shun help from others because we don’t want to ask for it? Do we ignore our Physician’s advise,…treatment? Do we get adequate treatment from our health care providers? Do we give up whereas women fight harder?
These are the questions we need to talk about…someone comment on this phenomenon….
Friday, June 5, 2009
Speak Out Speak Up!
Men are very introverted when it comes to discussing their ailments or diseases. I never let anyone who did not need to know that I had Sickle Cell Anemia. As a matter of fact, I didn’t know until I attended Howard University and was told by the infirmary. I didn’t even discuss it with my family or relatives. What makes this disease so aloof to the public? Is it because we are; embarrassed, in denial, afraid or resentful? Most men have a desire to be control. Those with this disease realize at some point that they must rely on someone. Does this make us less than a “Man”?
You see when I was growing up there were rumors when I had crisis that I had a blood disorder which was fatal and I would not live longer than 15 years. When I reached that plateau the age was adjusted to 18 then 25 and so on. I always tried to prove this age related indices were wrong because I wanted to beat the odds. To say the least the median mortality of those with Sickle Cell has increased beyond the age of 50 today thanks to screening, early diagnosis, and treatment.
As we men get older do we speak out and help those young men who find themselves experiencing moments of uncertainty and challenges we survivors have confronted? Do we talk to each other? Do we support each other? Do we seek to help find a cure? I would argue, the answer is a resounding NO. If all truth be told, we sit in our Hematologist or Internist office and never speak to the patient beside us. What strikes me as irony is we observe men and women with cancer who carry on conversations about their disease and treatment in constant search of trying to find comfort, cures, and coping mechanism as it relates to their condition.
We Must Speak Out…We Must Speak Up!
You see when I was growing up there were rumors when I had crisis that I had a blood disorder which was fatal and I would not live longer than 15 years. When I reached that plateau the age was adjusted to 18 then 25 and so on. I always tried to prove this age related indices were wrong because I wanted to beat the odds. To say the least the median mortality of those with Sickle Cell has increased beyond the age of 50 today thanks to screening, early diagnosis, and treatment.
As we men get older do we speak out and help those young men who find themselves experiencing moments of uncertainty and challenges we survivors have confronted? Do we talk to each other? Do we support each other? Do we seek to help find a cure? I would argue, the answer is a resounding NO. If all truth be told, we sit in our Hematologist or Internist office and never speak to the patient beside us. What strikes me as irony is we observe men and women with cancer who carry on conversations about their disease and treatment in constant search of trying to find comfort, cures, and coping mechanism as it relates to their condition.
We Must Speak Out…We Must Speak Up!
Saturday, May 23, 2009
Men We Must Let Our Voices Be Heard
Men with Sickle Cell Disease often are not seen nor heard when it comes to how this disease affects all of us who live and die due to the complications related to our disease. It is apparent from what I have found by searching the web that men are underrepresented when it comes to discussing not only how we feel but also treatments that may work or may not work. We also fall behind the discussion as it relates to being involved in support of those who seek to cure this disease or support the quality of care for those affected by Sickle Cell Anemia. Therefore, it is my hope that men become more involved in the discussion, treatment, support, and cure of this disease we must live with. Add your voice!
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