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/
Subscribe To Sickle Cell Disease Blogs
Posts
All Comments
Tuesday, July 28, 2009
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!
Subscribe to:
Posts (Atom)