The past four months I've been somewhat patiently waiting for my foot ulcers to heal so I could have my first hip replacement surgery. I've also been going to my various doctors to get clearance for surgery. They all gave me clearance. That is, until I saw my cardiologist ten days ago.
To make sure that my heart was/is strong enough for surgery, he ordered a stress echo test. Normally they would have a person run on a treadmill while monitoring the heart to test the heart's function and strength. Since I'm walking with a walker, obviously that wasn't possible. So they did a chemical stress test instead.
After they did an echo of my heart, they put an I.V. in my arm. Typically they give you small doses of a medication that gradually raises your heart rate. They have you hooked up to all kinds of monitors and perform another echo of the heart during the procedure.
When I was given the medication, it didn't cause my heart rate to raise, but to plummet. I experienced a heaviness and pain in my chest; it felt like my heart was about to pop out of my chest, and I had difficulty breathing. The doctor came running in, they gave me oxygen and had to halt the test very early on.
Over the past many years, my heart function has been stable at 45%. It's now 35%. Based on what happened during the test, my cardiologist can't/won't clear me for surgery. "If what happened here," my cardiologist said, "happened in the operating room, it would be very bad."
When I was told about my hips several months ago, I was told I had two options: 1) have a double hip replacement surgery, or 2) live with it until it got worse and eventually end up in a wheelchair. So when my cardiologist told me he couldn't clear me for surgery, I was...devastated.
There are many things I've prepared myself for in my life; spending the rest of my life in a wheelchair wasn't one of them. I'm having to come to terms with this reality and I find I'm having a hard time with that. Once I get my chair, hopefully an electric one, I know I will regain much of the mobility that I've lost over the past year and a half. Right now, every step with my walker is agony and physically taxing. But mentally coming to terms with being in a wheelchair is taking time. But with the Lord's help, I know peace will come.
Friday, May 31, 2013
Friday, May 24, 2013
Sickle Cell - Blood Clot No More!
Two years ago a blood clot formed in my left leg. I went from the middle of my shin to the middle of my thigh. I had no idea at the time that blood clots could get so large; I'm told they can be even larger than that. When I had the clot, my leg really swelled up and it was very painful. I was put on blood thinners and had to wear a pressure sock. The sock fits very tightly against the skin and goes all the way up to the knee. When worn, it helps to open up the blood vessels, push the blood back up the leg, and prevent and/or reduce swelling.
After about six months I was taken off the blood thinners. One year ago, an ultrasound showed the clot was half the size it was. I was told the clot wouldn't get any smaller, and that I would have it for the rest of my life.
Last week another ultrasound was done, and it showed the blood clot is entirely gone! The vein where the clot was is a bit thicker than normal from scar tissue, but the clot is gone. Needless to say, I was/am very happy about that.
During that first year I did a lot of meditation exercises where I envisioned the vein in my leg where the clot was. Then I'd envision the clot inside the vein. Then I'd envision small pieces of that clot breaking off until nothing remained of it. I don't know how much a part that process played in my clot becoming removed from my vein, but...you never know. I've been amazed by, and seen some dramatic examples of, the power of meditation. I also credit God and the prayers of my friends and family. Every little bit helps.
After about six months I was taken off the blood thinners. One year ago, an ultrasound showed the clot was half the size it was. I was told the clot wouldn't get any smaller, and that I would have it for the rest of my life.
Last week another ultrasound was done, and it showed the blood clot is entirely gone! The vein where the clot was is a bit thicker than normal from scar tissue, but the clot is gone. Needless to say, I was/am very happy about that.
During that first year I did a lot of meditation exercises where I envisioned the vein in my leg where the clot was. Then I'd envision the clot inside the vein. Then I'd envision small pieces of that clot breaking off until nothing remained of it. I don't know how much a part that process played in my clot becoming removed from my vein, but...you never know. I've been amazed by, and seen some dramatic examples of, the power of meditation. I also credit God and the prayers of my friends and family. Every little bit helps.
Friday, May 17, 2013
Observing Life and Death with Sickle Cell
As you know, living with Sickle Cell means frequent visits to the Emergency Room. As an adult, I've been fortunate. From age twenty to present, I've only had to go to the ER a handful of times. As a child and teen, however, it was a very different story.
Often, my day would be normal; I went to school, played with friends, did my chores, and went to bed feeling fine. Then around midnight, I would awake in horrid pain that couldn't be controlled with home medication. Many, many times, my parents had to drive me to the ER at one o'clock in the morning. I think it was harder on my parents than it was on me; never knowing when their child would be fighting for his life in a hospital bed.
One particular trip to the ER I remember very vividly. I was perhaps thirteen or fourteen years old. In the bed next to me there was person who had been shot. Despite the doctors best efforts, he didn't survive his wounds. A thin curtain between two beds doesn't provide much privacy. At the time, it was the closest I had been to a person who had died.
By that time in my life, I personally had come close to death several of times. But, for the first time, that experience made me realize how quickly life can be taken from a person. I had long been aware of my own mortality. But the death of the man next to me in the ER made my mortality more real.
¶ I've had nearly one hundred sixteen hospitalizations in my life. Approximately a dozen of them have been in my adulthood. Logically, when I became an adult, I no longer stayed in the pediatric ward when admitted.
I remember one of the first times I was admitted to the adult unit. An aged senior gentleman was my roommate. If I recall correctly, his illness had caused him to be mentally out of it; he was conscious, but not there. I remember one day his family came to visit him and talk with the doctors. The doctor pulled the "privacy" curtain closed so he could tell the family their father had a cancer. There was nothing that could be done for him, and the doctor expected him to live only a few months. Naturally, the family sobbed.
Experiences like those I've shared have an impact on a young mind and they stay with you. Though leaving this life had always been on the forefront of my mind, those events brought death into clearer focus and far more real.
I think my purpose in sharing them is to provide a glimpse into what we as Sickle Cell patients see and hear in the hospital. Experiences like these, and countless others, caused me to be an introspective person. It caused me to develop a unique view about life, death, and everything in between. Your loved one may have experienced similar events that had a profound impact on them.
In the post, "Family Openness," I talked about how important it is for patients to feel free and able to talk with their family openly about anything and everything. They say, "still waters run deep." Sickle Cell causes patients to frequently be still; consequently our waters tend to run very deep. I ask that parents, siblings, family, and friends be aware of that. There may be a need to talk about issues and experiences that plague your loved one's thoughts. Be there for them, and willing to listen.
Often, my day would be normal; I went to school, played with friends, did my chores, and went to bed feeling fine. Then around midnight, I would awake in horrid pain that couldn't be controlled with home medication. Many, many times, my parents had to drive me to the ER at one o'clock in the morning. I think it was harder on my parents than it was on me; never knowing when their child would be fighting for his life in a hospital bed.
One particular trip to the ER I remember very vividly. I was perhaps thirteen or fourteen years old. In the bed next to me there was person who had been shot. Despite the doctors best efforts, he didn't survive his wounds. A thin curtain between two beds doesn't provide much privacy. At the time, it was the closest I had been to a person who had died.
By that time in my life, I personally had come close to death several of times. But, for the first time, that experience made me realize how quickly life can be taken from a person. I had long been aware of my own mortality. But the death of the man next to me in the ER made my mortality more real.
¶ I've had nearly one hundred sixteen hospitalizations in my life. Approximately a dozen of them have been in my adulthood. Logically, when I became an adult, I no longer stayed in the pediatric ward when admitted.
I remember one of the first times I was admitted to the adult unit. An aged senior gentleman was my roommate. If I recall correctly, his illness had caused him to be mentally out of it; he was conscious, but not there. I remember one day his family came to visit him and talk with the doctors. The doctor pulled the "privacy" curtain closed so he could tell the family their father had a cancer. There was nothing that could be done for him, and the doctor expected him to live only a few months. Naturally, the family sobbed.
Experiences like those I've shared have an impact on a young mind and they stay with you. Though leaving this life had always been on the forefront of my mind, those events brought death into clearer focus and far more real.
I think my purpose in sharing them is to provide a glimpse into what we as Sickle Cell patients see and hear in the hospital. Experiences like these, and countless others, caused me to be an introspective person. It caused me to develop a unique view about life, death, and everything in between. Your loved one may have experienced similar events that had a profound impact on them.
In the post, "Family Openness," I talked about how important it is for patients to feel free and able to talk with their family openly about anything and everything. They say, "still waters run deep." Sickle Cell causes patients to frequently be still; consequently our waters tend to run very deep. I ask that parents, siblings, family, and friends be aware of that. There may be a need to talk about issues and experiences that plague your loved one's thoughts. Be there for them, and willing to listen.
Monday, May 13, 2013
Photos My Sickle Cell Foot Ulcers
WARNING: If you have a weak stomach or suffer from Easily Regurgitatous, (a medical term I just made up that means, you throw up easily from gross things) you may want to bypass this post.
I've been debating for some time as to whether or not I should post my photo journal of my ulcers. The pictures are almost as unpleasant to look at as they were to have. Almost. However, I decided that it might help inform the uninformed about this painful affliction; and my notes may help somebody else suffering from similar wounds.
I've been debating for some time as to whether or not I should post my photo journal of my ulcers. The pictures are almost as unpleasant to look at as they were to have. Almost. However, I decided that it might help inform the uninformed about this painful affliction; and my notes may help somebody else suffering from similar wounds.
Friday, May 10, 2013
The Three F's of Coping with Sickle Cell - Faith
When people ask, "how do you cope with it all," I tell them faith, along with my family and friends, is what gets me through it all. In the post entitled, Spiritual Health, I spoke about the need to have spirituality in your life. For me, my faith is what gets me through all the unpleasant things that Sickle Cell throws my way.
On the facebook page, Sickle Warriors, I read that a young man with Sickle Cell recently took his own life because he was tired of the difficulties the illness brought into his life. I feel for him and his family. On more than one occasion, despair nearly drove me to take such actions.
In the post entitled, Depression, I spoke briefly about my struggles in that area. There were many years in my life when suicide occupied my thoughts on a daily basis. The cold reality was, had it not been for my faith and religious beliefs, I would have taken my own life. Once I acknowledged I needed help and received it, those dark thoughts left me and have been a thing of the past for a long time now. Thank goodness.
As Sickle Cell patients, we struggle with so much; it's natural for our minds and spirits to fall into dark places sometimes; as does everybody at times. To counterbalance that darkness, there must be a greater light in your life. That light is God.
Though I am very devoted to faith, it's not my purpose here to promote any particular religion. My purpose is to encourage you to find your own faith. I personally cannot imagine enduring what we do without having God a part of our life.
As everybody whose endured a pain crisis knows, there are times when the pain is so high that one minute feels like an hour, and a day of it feels like ten. When those agonizing minutes come, the light of Christ and God's love is the lifeline that will pull me through the sea of agony. Without it, I would surely drown.
The Lord has provided more miracles in my life than I can count. At times I've been pulled back from the brink of death; at times I've had agonizing pain entirely removed; other times, most of the time unfortunately, it's my lot to endure the pain. Whether God lessons my discomfort or not, He always sees me through it with the comfort of His Spirit; as He can do for you.
Faith doesn't mean we are going to be protected from hardship; rather, it gives us the strength to endure it. If faith and spirituality are not yet a part of your life, I beg you to seek it out. If faith is a part of your life--whether it's Muslim based, Buddhism, Hinduism, Judaism, or Christianity--always be vigilant to cultivate it; do things that will help the light of your spirituality burn brighter. For that light will see you through the darkest of days.
On the facebook page, Sickle Warriors, I read that a young man with Sickle Cell recently took his own life because he was tired of the difficulties the illness brought into his life. I feel for him and his family. On more than one occasion, despair nearly drove me to take such actions.
In the post entitled, Depression, I spoke briefly about my struggles in that area. There were many years in my life when suicide occupied my thoughts on a daily basis. The cold reality was, had it not been for my faith and religious beliefs, I would have taken my own life. Once I acknowledged I needed help and received it, those dark thoughts left me and have been a thing of the past for a long time now. Thank goodness.
As Sickle Cell patients, we struggle with so much; it's natural for our minds and spirits to fall into dark places sometimes; as does everybody at times. To counterbalance that darkness, there must be a greater light in your life. That light is God.
Though I am very devoted to faith, it's not my purpose here to promote any particular religion. My purpose is to encourage you to find your own faith. I personally cannot imagine enduring what we do without having God a part of our life.
As everybody whose endured a pain crisis knows, there are times when the pain is so high that one minute feels like an hour, and a day of it feels like ten. When those agonizing minutes come, the light of Christ and God's love is the lifeline that will pull me through the sea of agony. Without it, I would surely drown.
The Lord has provided more miracles in my life than I can count. At times I've been pulled back from the brink of death; at times I've had agonizing pain entirely removed; other times, most of the time unfortunately, it's my lot to endure the pain. Whether God lessons my discomfort or not, He always sees me through it with the comfort of His Spirit; as He can do for you.
Faith doesn't mean we are going to be protected from hardship; rather, it gives us the strength to endure it. If faith and spirituality are not yet a part of your life, I beg you to seek it out. If faith is a part of your life--whether it's Muslim based, Buddhism, Hinduism, Judaism, or Christianity--always be vigilant to cultivate it; do things that will help the light of your spirituality burn brighter. For that light will see you through the darkest of days.
Monday, May 6, 2013
The Three F's of Coping with Sickle Cell - Family
When I talk with people about the things I endure, the question I'm frequently asked is, "how do you cope with it all?" For one thing, I couldn't do it without my family. I feel SO blessed to be a Monk; and I don't mean the bald headed kind who wear robes all the time; though my oldest brother is bald now.
Everybody's family unit is organized differently. Many live in a single parent home; some have half siblings; others have step-parents and siblings; some live with relatives or foster parents; and others have people of non-relation whom they call family. There are many people who feel that blood relation is the only kind of family that matters. Being adopted, I know that's bull. In my mind, time together and love is what makes a family.
I've never had a desire to seek out my biological parents. I've always known who my mom and dad were. They are: the only parents I've ever known; they are the people who have loved me all my life; they are the people who agonized with me through every pain crisis and all 116 hospitalizations.
I have so many memories as a youth of being in the hospital. Too often, I saw other children who seldom had anybody visit or stay with them in the hospital; sometimes for days at time. I felt bad for them. There I had either my mom, dad, or some other family member visit me every day; but next to me there was a child who did not have that. It broke my heart.
My point in writing about this is...Sickle Cell is a difficult challenge to live with. For any parents or family member reading this post, your child needs your support. No matter the age, a hospital bed is a lonely place to be. Sickle Cell itself can be a lonely disease. Family and friends must rally around the patient.
For any teen reading this post, allow your family to be there for you. It's not uncommon for many teenagers with Sickle Cell to wonder if they should tell certain family members, who may not know, that they have Sickle Cell. As I've said in previous posts, you need your family's support. Be open with your family. Trust them and rely upon them.
For any reader whose life circumstance is such that family is in short supply, remember what I said; blood relation doesn't necessarily make a family. Lean on the love others have to give you. Whether your "family" is a neighbor, a minister, a teacher, or trusted friend, allow them to be there for you. And to those ministers, teachers, and neighbors, please, please understand how great a challenge living with Sickle Cell is for your loved one, and offer as much support as you have to give. It will make all the difference in their life.
Everybody's family unit is organized differently. Many live in a single parent home; some have half siblings; others have step-parents and siblings; some live with relatives or foster parents; and others have people of non-relation whom they call family. There are many people who feel that blood relation is the only kind of family that matters. Being adopted, I know that's bull. In my mind, time together and love is what makes a family.
I've never had a desire to seek out my biological parents. I've always known who my mom and dad were. They are: the only parents I've ever known; they are the people who have loved me all my life; they are the people who agonized with me through every pain crisis and all 116 hospitalizations.
I have so many memories as a youth of being in the hospital. Too often, I saw other children who seldom had anybody visit or stay with them in the hospital; sometimes for days at time. I felt bad for them. There I had either my mom, dad, or some other family member visit me every day; but next to me there was a child who did not have that. It broke my heart.
My point in writing about this is...Sickle Cell is a difficult challenge to live with. For any parents or family member reading this post, your child needs your support. No matter the age, a hospital bed is a lonely place to be. Sickle Cell itself can be a lonely disease. Family and friends must rally around the patient.
For any teen reading this post, allow your family to be there for you. It's not uncommon for many teenagers with Sickle Cell to wonder if they should tell certain family members, who may not know, that they have Sickle Cell. As I've said in previous posts, you need your family's support. Be open with your family. Trust them and rely upon them.
For any reader whose life circumstance is such that family is in short supply, remember what I said; blood relation doesn't necessarily make a family. Lean on the love others have to give you. Whether your "family" is a neighbor, a minister, a teacher, or trusted friend, allow them to be there for you. And to those ministers, teachers, and neighbors, please, please understand how great a challenge living with Sickle Cell is for your loved one, and offer as much support as you have to give. It will make all the difference in their life.
Wednesday, May 1, 2013
The Three F's of Coping with Sickle Cell - Friends
When I talk with people about the things I endure, the question I'm frequently asked is, "how do you cope with it all?" I find it a difficult question to answer, yet simple at the same time. The answer is, "I just do." Living with a chronic illness from birth is different than developing one later in life. I've never known anything different than living with the daily, and unpredictable, complications of Sickle Cell. However, I do have to say that my family, faith, and friends are the three major gears that keep my coping machine in full operation.
In the posts entitled, "Safety Net" and "Building Relationships of Trust," I wrote about how important it is to surround yourself with good, positive, and supportive friends. I can't express enough how important it is to choose your friends carefully. I have always tried to befriend everybody around me. Whether they were a nerd or a jock, a cheerleader or a recluse--sadly, the cheerleaders never reached out to me--I always did my best to reach out to all; social or popularity status never mattered to me. But when it came to selecting close personal friends, I was/am very selective.
Negative people radiate negative energy. I have enough negative energy in my life that I daily combat. What I need in my life are positive people who radiate positive energy. Keeping all 4-Points of my health...well...healthy, is vital to my well-being. I need to be around friends who make me laugh, and I can in turn make laugh; friends who share my spiritual beliefs; and friends I don’t have to hide the details of my health from.
All my life I’ve been blessed with no shortage of close personal friends. Many of those friendships died, others have remained. I have one friend named Mark; he and I have been friends for over twenty years. Though we live in separate States, he keeps in contact with me as much as I do him. I cherish his friendship more than words can express.
Some days, living with Sickle Cell is very challenging; it can be mentally, physically, emotional, and spiritually difficult to manage. A good friend can help lighten the heavy load that is our illness. Lean on your friends. Allow them to help. Talk with them about what's troubling you. They may or may not be able to relate to the hardships in your life, but they can listen; they can be there for you; they can give you their love. Allow your friends to help you cope with Sickle Cell the best they can.
In the posts entitled, "Safety Net" and "Building Relationships of Trust," I wrote about how important it is to surround yourself with good, positive, and supportive friends. I can't express enough how important it is to choose your friends carefully. I have always tried to befriend everybody around me. Whether they were a nerd or a jock, a cheerleader or a recluse--sadly, the cheerleaders never reached out to me--I always did my best to reach out to all; social or popularity status never mattered to me. But when it came to selecting close personal friends, I was/am very selective.
Negative people radiate negative energy. I have enough negative energy in my life that I daily combat. What I need in my life are positive people who radiate positive energy. Keeping all 4-Points of my health...well...healthy, is vital to my well-being. I need to be around friends who make me laugh, and I can in turn make laugh; friends who share my spiritual beliefs; and friends I don’t have to hide the details of my health from.
All my life I’ve been blessed with no shortage of close personal friends. Many of those friendships died, others have remained. I have one friend named Mark; he and I have been friends for over twenty years. Though we live in separate States, he keeps in contact with me as much as I do him. I cherish his friendship more than words can express.
Some days, living with Sickle Cell is very challenging; it can be mentally, physically, emotional, and spiritually difficult to manage. A good friend can help lighten the heavy load that is our illness. Lean on your friends. Allow them to help. Talk with them about what's troubling you. They may or may not be able to relate to the hardships in your life, but they can listen; they can be there for you; they can give you their love. Allow your friends to help you cope with Sickle Cell the best they can.
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