Remembering John “Larry” Valley

October 4, 1945 - January 5, 2012

Following is an excerpt of a touching letter, John “Larry” Valley wrote about sickle cell disease and the impact on his life. Larry was a member of the Sickle Cell Community Advisory Council of Northern California and an advocate for community blood-banking. Sadly, he passed away on January 5th, 2012, at age 66.

This letter and Larry’s passing serve as reminders of the fragility of life and that, more than ever, we need to bring awareness to the community about sickle cell disease and the need for blood donations.

The September Sickle Cell Awareness Month event will be held in his memory, it will be called: The John Larry Valley “102 Heroes” Blood Drive.

 

From 50 forward to now.

My name is John Lawrence Valley, known to most of my friends and relatives as Larry.  I was born on October 4th, 1945.  I have Sickle Cell Disease.  My type is SC Harlem.  The Harlem was identified by the Atlanta Disease Control Center.  My primary doctor that sent my blood to the Disease Control Center for evaluation saw something about my type of SCD that was different than any type he had seen previously.  Simply the Harlem strain (only seen in myself and one other SCD patient in the U.S.) makes my Sickle-Hemoglobin C Disease (SC) type act like Sickle Cell Anemia (SS).

I had a fairly normal childhood.  My family never put any limits on me, so I did most things that normal boys did.  I was never told no or you can’t because of your SCD.  I played little league baseball, I played golf starting at the age of 7, and I still play golf currently.  The two limitations I remember are all of the pain episodes and being small.  After little league baseball I could only play in pick-up games.  I did not start growing until after the age of twenty-one.  I was four foot ten and weighed eighty-five pounds when I graduated from high school.  So my varsity attempts at sports were narrowed to golf because of my size.  I remember having a lot of crises that involved severe pain in my lower back.  I had other crises but those back aches were just really bad.

I worked for over 30 years.  I was limited to desk jobs, physical labor was not an option, small and physical exertion can cause a crisis.  I had physical limitations on my jobs, other than that I did all that was requested of the job description.  I did have some crises at times while in the work force, and I learned to get up and go to work as soon as the crisis pain subsided to a tolerable point.  I worked hard and was responsible for installation of hardware and software all over the country. 

Having a good work ethic a high pain level tolerance allowed me to get the job done.  My motivation has always been that I am just as normal as the next person within the limits of my disease.  I believed that I was normal with the exception of the crisis that kept me off my feet.   

In 1995 I turned 50 years, half a century.  I was told I would not make it to the age of 21.  Funny how that works.  I tried to drink up the entire state of Washington between my 18th and 21st birthdays.  That pretty much ended my faith in Dr.’s and their diagnosis.

Since then I have had two very good physicians over the years that have kept me in the race.  Even at 50 I had my own ideas about how I should live with this disease.  I have not always been correct but I am still here doing it my way within the limitations of Sickle Cell Disease, (SCD).  The most important lesson I learned from my mother was “every time you get knocked down, get up and keep on going.  Don’t grovel when you are down, get up and give it everything you have.”  That is pretty much the way I have lived with this disease.  There was one time when I really wanted to throw in the towel in my early 20’s.  That was the worst crisis I ever had, my saving grace was my cousin who also was afflicted with this disease.  He was very instrumental in keeping me alive during the first 7 days of that crisis.  He passed at the age of 45.  He also is the one who taught me more about this disease than any physician.  He also made me see the importance of living within the limits of the disease rather than push the envelope.

Since the age of 50, there have been some physical changes that I did not know were happening as I aged.  The first noticeable change came to my knees.  I walked a lot, being an avid golfer I was walking a golf course about once a week or more.  I began having severe pain in both knees if I walked too much.  The medical finding was no cartilage in the knees.  My knee bones were rubbing against each other.  Some nerve endings were quite sensitive for a long time.  I still take walks with my dog.  I ride a cart when I play golf these days.

At the age of 60 I was having a lot of pain in my right hip.  This is when I learned that longevity with SCD comes with joint, bone, and organ deterioration.  I don’t have many crises now, but the accumulation of them have deprived parts of my body with oxygen deprivation.  The deprivation kills the parts of the body that are not getting oxygen during a crisis.  So that explains the knees and that hip pain.  I never did anything about the knees, just lucky about being able to still walk.  I can’t do any deep knee bends though.  At the age of sixty I had my right hip replaced.  Now at the age of Sixty-Five I have lost the inches in the length of my right leg.  I have constant pain in that hip that was replaced.  The pain is in two areas, inside the femur and in the groin area.  The mobility recovered has allowed me to continue to play golf.  I have not played as well with the new hip as I did with my own hip.

This year 2011, I had the ball of my left shoulder replaced.  The rehab was tough.  I am back on the golf course, and happy to say that I have played more golf this year than I was able to play in previous years.  I have learned to enjoy being out in the sun with my relatives and friends having fun on the golf course.  I was a competitive player when I was younger with a pretty consistent game.  That is no longer the case.  I miss it but I am happy to be able to complete each round no matter what the score.

I have also had deterioration in my kidneys, so I have to have them checked about every four months.  Medical Physicians and Dentist’s take up a lot of my time keeping me healthy.

Another little item they call acute chest syndrome (ACS) got a hold of me and left its calling card.  It provides some really intense pain in your chest.  The first time it hit me it felt like an elephant was sitting on my chest.  The more air you tried to take in, the more intense the pain.  I felt short of breath and could only take in sips of air because of the pain involved.  Seven days of that kind of pain and then a gradual lessoning of pain and eventually the pain settles like a knot somewhere in your upper body.  I had at least three weeks of pain each time I had ACS.  The first 10 days you wish time would speed up but it feels like it is standing still.  I was able to get on my feet and function with the pain as it gradually decreased over the next fourteen days or so.

Living with SCD is a constant learning experience.  You have to make life style adjustments along the way in your life.  Going from competitive golf to golf for fun is one example of that kind of life adjustment.

Another example of life style adjustment is how you spend your time.  I left the work force at the age of Fifty-Seven.  I came out on disability due SCD.  Before that I had an intense job and I went back to college and acquired a Bachelor of Science degree in Business Information Systems.  I was really pushing the envelope during that period of time.  I was working 10 to 12 hours a day and some weekends.  I was also traveling all over the United States for my company.

My SCD is affected by high altitude, sudden changes in temperature, Stress, cold weather and over exertion.  When I was working I would push the envelope every time I flew on an airplane, every time I went to a place like Lake Tahoe, every time I tried to go swimming, and the over exertion from exercise and other sports activities.

Now when I fly over an hour or so I have to have oxygen on the plane.  I try to stay inside on cold and rainy days.  I try not to go to colder climates, I don’t go to Lake Tahoe anymore and swimming is out of the question.

As you age the trips to the doctor become more frequent.  I have been told that my insides are equivalent to a 95-year-old.  That is hard to believe when you look in the mirror and see a person that does not look 65.  But whenever I look in the mirror I have to tell myself I am very old inside and I need to be careful of how I live now.

Between 60 and now, I have found that I have some arthritic joints that like to visit when it is damp and or cold. It is harder to stay warm; I attribute that to a more sedentary life style.  The sedentary life style comes from a lack of energy.  It does not matter what I do to try to increase your energy levels, the body only has so much to give now.  Take that and like it or push the envelope and take your chances. I am learning to push gently if I push at all at this age.

Blood History, Our History Blood Drive

Celebrate Black History Month!

In celebration of Black History Month in February, BCP is hosting a “Blood History, Our History” blood drive to encourage at least 86 people to give blood on Saturday, February 25, 2012, from 10am to 4pm in Oakland’s Jack London Square area.

Why 86? “That number is significant because it’s been 86 years since, Dr. Carter G. Woodson initiated Negro History Week to bring national attention to the contributions of black people throughout American history,” said Fred McFadden, Diversity Blood Donor Program Specialist at BCP. “Through blood donation we as African-Americans can make a lifesaving contribution to chronically-transfused sickle cell and other patients here in our community.”

About 98 percent of people suffering from sickle cell anemia are African-American, and patients with the disease may need 15 to 25 blood transfusions each year. Usually, the safest blood for them to receive comes from other African-Americans. To mark Black History Month, we need 86 heroes to help save lives by donating blood.

To add to the family fun and festivities, there will be free food, art workshops for the kids, raffle prizes, and more. There will be live performances by VIPete, Obiwok, Kevin Pride and (guitarist) Eric Swinderman.

All blood donors will receive a free movie ticket to any Regal Cinema and a T-shirt, and are eligible to win a football signed by Oakland Raiders’ wide receiver Denarius Moore. And as if that weren’t enough, all blood donors will also get a chance to meet R&B recording artist and former American Idol finalist La Toya London!

The “Blood History, Our History” blood drive is sponsored by BCP, in partnership with: Children’s Hospital and Research Center Oakland, Sickle Cell Community Advisory Council, Sickle Cell Disease Soldier Network, Black MBA Association, The Links, Incorporated, Oakland Technical High School, National Marrow Donor Program, American Diabetes Association, California Transplant Donor Network, Omega Psi Phi Fraternity and Riovida Networks.

What: “Blood History, Our History” Blood Drive and Black History Month Celebration
When: Saturday, February 25, 10am to 4pm
Where: The Quad in Jack London Square, 525 4th St., Oakland

To schedule an appointment to donate blood, visit www.bloodheroes.com, click on “Donate Blood” and enter sponsor code: HISTORY or call Fred McFadden at (415) 354-1381.

 

Everyday Heroes - BCP’s Diversity Enewsletter

Everyday Heroes: December 2011
Everyday Heroes: November 2011
Everyday Heroes: October 2011
Everyday Heroes: September 2011
Everyday Heroes: August 2011
Everyday Heroes: July 2011
Everyday Heroes: June 2011
Everyday Heroes: May 2011

 

 

 

Santa Rosa Center

2324 Bethards Drive
Santa Rosa, CA 95405

Site & Appointments

1-888-393-GIVE (4483)

Online Appointment

Center Hours

• Monday to Thursday:  12:00 p.m. - 7:00 p.m.
• Friday to Saturday:  9:00 a.m. - 4:00 p.m.
• Sunday:  closed

Center Closed

• Monday, 3/5/12
• Monday, 6/4/12
• Monday, 9/10/12
• Monday, 12/3/12

Promotions

Blood Buddy Program

Bring a buddy to save lives and get two free movie tickets! Fill out the “Blood Buddy” card and give it to a buddy who’s never donated blood with BCP. When your buddy donates blood and turns in the card, we’ll add enough points to your hero account for you to redeem two movie tickets online! Participating theaters will show up when you type in your zip code to redeem the tickets.
Click here to download “Blood Buddy” card

“We Want to See You Again!” Program

Donate blood within five months of your first donation and receive enough “hero” points to redeem a movie ticket online! Participating theaters will show up when you type in your zip code to redeem the tickets. Fill out the “We Want to See You Again!” card and give it to a BCP staff member.
Click here to download “We Want To See You Again!” card

African-American Blood Donor Program

The Challenge for African-Americans

Nine-year-old Brandon needs a blood transfusion every three weeks. So does 33-year-old Denise.Brandon and Denise will need blood transfusions for the rest of their lives. Yet donated blood might not always be available for them.

Ninety-eight percent of people suffering from sickle cell anemia are African-American. These people – most of whom are children – need to undergo regular blood transfusions. Often, they develop antibodies to the blood they receive, leading to potentially life-threatening transfusion reactions. But if they can receive blood that’s more closely matched to their own, that risk is minimized. And the best matches are found among other African-Americans.

In addition, African-Americans face other serious health challenges that may require blood transfusions, including kidney disease, high blood pressure and higher birth rates of premature babies.

To meet the needs of patients, Blood Centers of the Pacific must collect more than 150,000 pints of blood each year. Yet, of those eligible to donate blood, less than 4 percent do. And of those who give, just 3 percent are African-Americans.
The numbers just don’t add up.

We need more African-Americans to close the gap. We need more African-American blood donors to save lives in the community. We need you.

Donating Blood Is The Answer

Donating blood is safe, simple and it saves lives. Donated blood is precious. And there’s no substitute for it. The entire process takes less than an hour and is virtually painless. At your blood donation, you’ll also be given a “mini-physical,” where we take your temperature, your blood pressure and test your iron. That way, we ensure giving is safe for you. After your donation, your blood is tested, typed and sent to a patient in need.

You can donate blood at one of our centers or at one of the hundreds of blood drives we run throughout the community. These drives are held at schools, places of worship, businesses and civic organizations and are coordinated by our Diversity Program Specialist.

Recognizing our Heroes

Every hero deserves recognition and our blood donors are no exception! When you become a blood donor with BCP, you’ll be automatically enrolled in our special “Find the Hero in Me” program. Commit to donating blood at least three times a year and you’ll get to select special gifts like movie tickets and ice cream. Reach various donation milestones and you’ll earn even more thank-you gifts! And at each donation, you’ll also receive a free cholesterol test so you can ensure your good health.

Who’s Eligible to Donate Blood?

Anyone who is in good health, is at least 17-years-old (16, with parental consent), weights at least 110 pounds, and is not at risk for hepatitis or HIV is eligible to donate blood.

To be tested as a match to donate for patients like Brandon and Denise, or to join the African-American Blood Donor program at BCP, call 1-800-707-8483.

About Sickle Cell Anemia

An inherited disorder of the red blood cells, sickle cell disease is the most common genetic disorder in African-Americans. People with sickle cell have red blood cells that contain an abnormal type of hemoglobin. Instead of their normal round shape, red blood cells are crescent-shaped and have difficulty passing through the body’s small blood vessels. This eventually damages vessels and tissues, which can be extremely painful.

One in 500 African-Americans suffer from sickle cell anemia, while one in 12 African-Americans carry the sickle cell trait. Patients with the disease may need 15 to 25 blood transfusions each year. And there’s no substitute for this lifesaving gift.

 

Oakland Community Drive

Greater St. John Missionary Baptist Church
1909 Market St ( (between 19th St & 20th St)
Oakland, CA 94607

Appointments

Online Appointment

Center Hours

• Monday:  2:00 p.m. - 7:00.p.m. (every 4th Monday of the month)

 

 

Assistant Director

Donor Collections, San Francisco

In accordance with Federal, State, AABB, cGMPs and Blood Centers’ policies, procedures, regulations and standards, is responsible for the technical and administrative aspects of the blood centers’ collections operations ensuring quality, accuracy and efficiency of all collection functions.  Performs other responsibilities as assigned

Vallejo Donor Site

Community Presbyterian Church
2800 Georgia Street
Vallejo, CA 94591

Site & Appointments

1-888-393-GIVE (4483)

Online Appointment

Center Hours

Monday:  1:30 p.m. - 7:00 p.m.

 

Paul Yang

Originally from Taiwan, Paul had chronic active Hepatitis B which affected him on an “on and off” basis for 10 to 15 years. “Back then, I had no knowledge about the disease. I didn’t even know I had it,” said Paul. “I just thought I was sick with the flu, but then the periods between each bout shortened from months into weeks. I also felt weak and lost weight.”

Coupled with the lack of knowledge about the disease and transplants was also denial. “I did not want a liver transplant - I was in denial that I would die pretty soon,” said Paul. “But then I thought, either way I am going to die, so why not.”

According to the United Network For Organ Sharing (UNOS) website, there are currently more than 80,000 on the national waiting list for organs. Paul was fortunate. Sixteen years ago, the statistic was about a fifth of what it is today – there were 16,026 on the waiting list then. “I was pretty lucky,” he said. “I was on the priority list and received a liver within a week. On August 20th, 1988 I received a liver transplant and 221 units of blood during the nine and a half hours of surgery.” After two to three months, Paul recovered and “got better.”

These days, Paul is appreciative of those who donate organs and blood. “This has given me a second chance at life,” said Paul. “I am really thankful.” Although he still has to take immunosuppressant medication, Paul said he has regained his strength.

Lauren Larsen

Due to complications during childbirth, Lauren Larsen used 200 pints of blood and blood components.  Today, Lauren and her family are thankful to the blood donors who provided her with the gift of life.

“No one really knows when a medical emergency will hit him or her or someone they love. I certainly didn’t,” said Lauren. “But…Blood Centers of the Pacific (BCP)...was there for me.”

In November 2001, Lauren ran the 2001 New York Marathon to raise $50,000 and 500 blood donations for BCP and/or America’s Blood Centers. Today, Lauren is devotes her time in promoting the cause of blood donation as a national blood donation advocate.

Meghan Daily

Meghan Daily had always been active and healthy until she developed swelling in her hands and feet, and experienced weight gain. What she had attributed to “college student weight gain” turned out to be lupus nephritis – an autoimmune disease.

Meghan’s kidneys weren’t functioning and her hemoglobin count was only three and she had only four units of blood in her body! With the dramatic blood loss, doctors diagnosed her as having thrombotic throbocytopenic purpura (TTP). It impeded clotting and has a clogging effect – Meghan was bleeding to death.

After eight months of dialysis and receiving 987 units of blood components, Meghan improved. Said Meghan, “If there weren’t 987 to give blood, I wouldn’t be alive right now.” Today Meghan is doing well and has regained her energy for life again.

Rito Delgado

Rito Delgado never forgets that blood donors saved his life 23 years ago. Incredibly, he remembers almost everything that happened to him that tragic night when he was hit by a drunk driver and pinned between two cars. He remembers comforting his sister who was by his side at the scene, as firefighters rushed to save his life. He remembers seeing his white pants turn red from the massive amount of blood he lost; he remembers the ambulance ride to the hospital and being curious as to what route they were taking; he remembers being told that he suffered massive injuries to both of his legs.

Rito underwent five surgeries during his 3-month hospital stay. During that time he received numerous lifesaving blood transfusions. “I remember that the nurse told me that I received about 13 pints of blood during just my first surgery,” Rito recalls.

It took Rito a full year to recover. Even though his scars are long healed, he still remembers so much about the night that changed his life. And because he remembers, he now donates his blood and his time to help patients who need it and to inspire eligible blood donors to give the gift of life.

Stuart

Five years ago, Stuart was crossing a busy street when he was struck by a passenger van. He sustained multiple injuries, including traumatic brain injury, broken limbs and severe injuries to the arteries connected to his heart. Stuart was dead at the scene until he was resuscitated by an off duty firefighter.

At the hospital he was rushed into emergency surgery for nearly 15 hours to repair the tears to his aortic arch. The surgical team used 38 units of blood to sustain him. Midway through the surgery, doctors reported to Stuart’s family that they had used every unit of blood available in the area and only a couple of units of packed cells of the type they needed remained in the region. “If he needs more blood, we’re in trouble,” the surgeon told them. “I remember thinking to myself, ‘You mean my son might die because there’s not enough donated blood?’” says Stuart’s mother, Martha.

“Stuart did make it and he’s doing just fine, and part of the reason why is that 38 people I will never know cared enough to donate their blood to someone they would never meet,” Martha says. Today Stuart is a full time college student who’s also working toward his black belt. “Every year on the anniversary of the accident we celebrate my son’s real birthday—the day God gave him back to us and the day we realized that thanks to 38 strangers who cared, we would get to keep him.”

Isabella

When Isabella was 2 –years old, she was diagnosed with severe Aplastic Anemia. From the first day she was admitted to the hospital, she began receiving lifesaving blood products. After her treatment, her immune system was severely compromised and for the next several months she needed regular blood and platelet transfusions. Each time she had to go in for a transfusion, Isabella would say that she was getting red or orange Kool-Aid.

Today Isabella is a typical 3-year-old and is responding well to her treatment. She has been transfusion-free since October 2004.  “I can’t begin to express in words how much blood donation has meant to my family,” says her mother, Alixandria. “Without the many transfusions she received, she would not be here today. Through their unselfish generosity, blood donors have given my daughter another chance at living a life that every child deserves to live.”

Useful Links

Federal Health Organizations

• US Food & Drug Administration (oversees all US blood banks)
• Centers for Disease Control & Prevention
• National Institutes of Health

State Health Organizations

• CA Department of Health Services

Blood Banking Organizations

• America’s Blood Centers
• American Association of Blood Banks
• Blood Systems
• California Blood Banking Society

Blood Research Organizations

• Blood Systems Research Institute

BCP Partners in Health

• Donate Life California (organ donation)
• American Cancer Society
• Leukemia-Lymphoma Society
• National Marrow Donor Program
• Women’s Cancer Resource Center
• California Transplant Donor Network
• Asian American Donor Program
• American Liver Foundation
• CA Department of Health Newborn Screening Program
• Nancy’s List (educational resources and support for cancer patients)

For information about emergency preparedness:

• www.72hours.org

For the latest traffic information (so you can get to the blood center on time!):

• www.511.org

Donating Blood Step-By-Step

About the Donation Process

Donating blood is one of easiest ways to support your community. Your donation will help save the life of up to three people!  If you’ve never donated blood before, you’re probably wondering what you can expect and you may even be a little nervous, but don’t worry!  Giving blood is safe and simple.  Although the actual blood draw takes only a few minutes, the entire donation process takes about an hour.

Step 1 Registration

• Present your photo ID Card
• Read information sheet about donating blood.

Step 2 Donor Health History and Mini Physical

• Provide basic demographic and health information
• Answer questions about past and present health history (information is kept private)
• Undergo mini exam to determine if you are able to donate (temperature, blood   pressure, heart rate). Give blood drop to determine hemoglobin level.

Step 3 Hydration Station

• Drink water or other beverage prior to your donation.  The more hydrated you are, the faster your donation will be and the better you’ll feel afterwards

Step 4 Donation

• Sit in one of our specialized comfy donor “lounge chairs”
• Answer a few questions from a staff member
• Once the needle is in place, it usually takes less than 10 minutes to draw a unit (about a pint) of blood.  You’ll squeeze a ball to keep the blood flowing while you read, relax or chat with one of our nurses
• Finish your donation, after which the needle will be removed and a bandage applied (the bandage is a great way to show off what a hero you are!)

Step 5 Visit the Canteen

• Sit, relax and have a snack and drink at our donor canteen for a few minutes (California law states you’ll need to hang out with us for at least 15 minutes)
• All Done! Enjoy your day. You’ve earned it!  You’ve found the Hero in you!

Step 6 After Donation

• Avoid strenuous physical activity or heavy lifting for a few hours. If you feel light-headed, lie down until feeling better.

Click here to find out more about where and when you Find the Hero in You by donating blood!

Variety of Medical Treatments

Coming Soon!

Sorry, this page is still under development. Please check back with us again soon.

Hereditary Hemochromatosis Donation Program

Hereditary Hemochromatosis (HH) is a genetic disease that results in iron overload. The preferred treatment for reducing iron stores is periodic phlebotomy.

In the past, the U.S Food and Drug Administration (FDA) required that blood collected from people with HH be discarded unless it was labeled as donated by an individual with this condition. Unfortunately, this differentiation of HH labeled blood from volunteer community blood caused hospitals to decline blood from HH donors.

In 2001, however, the National Institutes of Health (NIH) concluded that “blood donors with (hereditary) hemochromatosis… do not pose a greater risk to blood safety than other donors,” (NIH press release, 9/25/01). There was no longer a need to distinguish HH blood from community blood. Now, blood centers may receive a variance from FDA regulations that allows them to use this blood for transfusion, without labeling it as HH blood. Blood Centers of the Pacific (BCP) received such a variance in January, 2003.

If an individual’s blood is collected as a HH, they are NOT eligible as a community donor that day, and will be charged for a therapeutic phlebotomy AND must have an appointment made with Special Donations.

The phlebotomy frequency for each HH patient is determined by their personal physician. Patients who require phlebotomy more often than every 56 days will require a prescription or doctor’s order specifying the frequency.

HH patients who have had previous therapeutic phlebotomies at BCP must be evaluated for donor eligibility before their first community blood donation. Once they are eligible, HH donors can donate at any BCP donation center. Mobile blood drives, however, are not able to take HH donors at this time.

For more information, please contact .(JavaScript must be enabled to view this email address) in Special Donations at 415-749-6656.

Laurice Levine

Laurice was born with thalassemia intermedia. As if that wasn’t enough, at 25, Laurice was diagnosed with pulmonary hypertension. Because her body could not manufacture sufficient hemoglobin, her heart could not keep up the pace and she needed to start receiving blood transfusions. Twice a month, Laurice receives two pints of lifesaving blood and will continue to do so for the rest of her life.

“Prior to each transfusion, I say a prayer thanking each donor for giving me life,” said Laurice. “I also bless and wish each donor with continued life and good health.” Today, Laurice remains an active and vital person in her community.

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