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!
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Friday, October 23, 2009
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.
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