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Wednesday, November 17, 2010
Monday, November 8, 2010
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
.
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
.
Thursday, November 4, 2010
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!"
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!"
Sunday, August 8, 2010
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?
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?
Sunday, June 6, 2010
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!
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!
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