Once home from the hospital, 5th open heart surgery completed, the time came to heal. Due to the intense, long recovery ahead, I had not enrolled in college for the semester. It would take at least six weeks to begin to feel strength return.
At the time I lived at home, my two younger siblings still attending High School, and shared the 'tall' bed with my younger sister. It quickly became apparent that getting in and out of a high bed post chest surgery would not work. My mom transferred me to the lower bed.
For more than two weeks my mom would dress and undress me. Shower me. Poor my milk in my cereal. Help me to lie down in bed and to get out of bed. Basically, everything I did was with assistance.
I remember thinking that lifting a gallon of milk wasn't such a big deal and so with my 'Hulk-like' strength I wrapped my fingers around the handle and began to lift the jug to pour. The gallon felt like a 50pound anchor super-glued to the counter and I dropped the gallon, spilling milk everywhere. My grip strength wasn't even strong enough to hold on. My sternum stretched and seemed as if it were on the verge of ripping in half. I stayed away from proving my strength, or lack of, and tried to heed the doctors orders from there on out.
In the evenings and sometimes in the nice afternoon, my dad and I would take little walks up and down the sidewalk moving at a record slow, even for a snail, pace. "We went further that time, dad." I would say. He would nod, "you're doing really well, Shel," and then with exhaustion I would turn around and go back in the house where I would slowly lower myself into the chair.
The doctor put me on anti-depressants for after the surgery, and I thought such a thing was ridiculous. Until I realized the trauma. The heart is many things - literal and figurative. It is the VERY heart of the body physically, and it is figuratively the HEART of the body. It is the Soul. With the trauma of physically handling the heart, there comes a lot of emotional trauma.
The blues set-in with such heaviness at one point that I found myself staring for hours at the walls, wanting to go on no more. Life had no meaning. Here I was almost like a baby, unable to take care of myself. My mom would set up a lawn chair out on the patio before leaving for work (my dad was home during the day) and say, "When I get home I will ask you if you went outside and got sunshine. You better say 'yes'."
So...doing as mother told me, I would trudge outside and ever-so slowly lower myself into the chair and stare at the sky. I suppose it was better than staring at the walls. In all honesty, I did not handle recovery well emotionally.
There was one of the wires inside that began to poke from beneath the skin. The cardiologist advised that there are cases where a wire has come loose and poke through the skin. Around the wire, the skin became translucent and it frightened me to think that the wire could come through. Still to this day, if I lay on my belly on a floor, the wires closing the sternum are so close to the skin that I can feel them against the flooring. Putting a pillow between myself and the floor seems to help.
When the body began to rid itself of the extremely heavy doses of medication, my body went in to a withdrawal. The headaches came on gradually, until one day the throbbing was beyond any headache I had ever known. There are people that suffer from debilitating migraines, and I honestly do not understand how they cope. The pain of this headache debilitated me and then intensified so quickly that I began vomiting. With each heave, I held the bowl with one hand and placed the other firmly against my sternum. The seams of my freshly glued skin felt as if they were tearing. I had a priesthood blessing for the headache and within minutes it was completely gone.
At night in my sleep, my sister later told me (post recovery) that most nights she would wake-up to me crying. She would look over and see that I was still asleep, yet I was crying and muttering, "It hurts. It hurts."
I don't remember the exact pain anymore, just the vivid thought over and over, "if I ever have to do this again, I think I would rather die." To say that the pain was the worst pain experienced by the human body would grossly exaggerated, however, it was enough to bring me to tears many of the days.
During this recovery my voice was also greatly damaged still. Most of the time my voice was a hoarse whisper, and when I tried to use it too much, it would go away completely. I tried to communicate by writing but got very impatient and ended up hurting myself worse by trying to force the speaking. I got in to a habit of taking tiny sips of water, holding it in my mouth, then preparing and swallowing. This was to avoid immediately vomiting the water back up as it would go down my wind pipe if I wasn't careful.
After about 4 weeks I started attending my parents church family congregation, then around 8 weeks started going back to the Young Singles Ward with my fiance.
I am not sure how people go through a procedure like this, or similar, without the support of family and without the support of the Lord. It was, up to that point in my life, one of the most difficult and painful experiences.
Now as I look back, I know that the physical pain of the body can never compare to the emotional pain of the body. One thing that amazes me is how much our Spirit can hurt, badly enough that at times feels as if our heart is breaking.
This pain of the spirit and emotional heartbreak would come later in my life, but not much.
Showing posts with label CHD. Show all posts
Showing posts with label CHD. Show all posts
Thursday, September 10, 2015
Wednesday, September 2, 2015
5th Heart Surgery III
Tonight as I reflect on the surgery, there are several things that have been embedded in my memory. When I first woke, it took several attempts to rid my eyes of the grogginess from an entire day of sleeping. The surgery was Wednesday and lasted seven hours, the majority of the surgery used to scrape away scar tissue from the previous repairs in younger years.
Put in place of the old valve that had been inserted at age four was a new porcine valve. All in all, the surgery went beautifully, even with the several hours of scar tissue removal.
When I awoke to family on Thursday, my upper body felt as though it had been beaten with a sledgehammer. I had never quite experienced that kind of pain. The medications numbed the pain enough to where it could be tolerated, but when there was a lapse it was all I could do to wait for the next dose.
When they took out the breathing tube, my throat had incredible pain and hoarseness. This didn't alarm the nurses when mom asked about my inability to speak.
"Sometimes that happens after a surgery. The throat is just sore from the tube."
It felt as though I was in the hospital forever, but only because it was so difficult to move even an inch. There was no strength to sit on my own or lie down in my bed. Baby steps down the halls were slow and with a nurse or family member to lean on. Fifteen feet and then we would turn around and head back to the room calling it a success.
A technician would come in for what I called my regular beating. They rolled me to my side, I gripped the railing of the hospital bed as best as I could, and the tech would beat my back (this is all I recall) to loosen anything in the lungs, to prevent pneumonia. Because breathing was incredibly difficult after open heart surgery, this treatment helped prevent the complication of pneumonia.
To help get breathing back, it was required to do daily breathing exercises with a treatment machine. I would blow air into the mouth nozzle and try to get the little lever inside to rise up. Lines at different heights marked the progress. I couldn't believe how difficult it was to breathe after the surgery.
There were tubes everywhere. In the side of my chest, in the middle of my chest. I was constantly hooked to an EKG, wore an oxygen mask, and pulse reader. Just getting up to go use the restroom or make the daily walk down the hall was a fifteen minute ordeal to untangle and unhook cords and rehook them to a moveable stand. The tubes in the center of my chest were inserted through teeny, tiny incisions. I still remember the feeling when the nurse said it was time to remove them. The sickly feeling of the chords moving through the chest, rubbing against the open incision, still gives me chills thinking back. Gratefully, the NG tube was removed prior to waking up (THAT is an insane feeling having a tube pulled out from the abdomen, through the esophagus and out the nose. *shudder*)
There were a few times that I had nightmares, dreaming of being a helpless body in a hospital bed, unable to move while being attacked. I would wake sweating profusely and in immense pain. Nights in the hospital were long and hard, and sleep never came easily, and just when I would finally drift off it came time for vitals. I just wanted to be home.
I had many visitors. Most of the time they were a welcome surprise, but there were times that I was so incredibly exhausted that I felt guilty wanting to sleep while they were there to keep me company. Even sleeping, it helped knowing someone I loved was watching over me.
After a few days, my voice was still not sounding well at all, in fact, it was now a concern with the nurses, though they still promised that it may just take a week or two to get back to normal.
Supposedly while under sedation post surgery, I began to thrash around, yanking at the breathing tube. The doctor advised that this rough jerking of the breathing tube was a good possibility for the cause of the difficult speaking. Only time would tell.
Put in place of the old valve that had been inserted at age four was a new porcine valve. All in all, the surgery went beautifully, even with the several hours of scar tissue removal.
When I awoke to family on Thursday, my upper body felt as though it had been beaten with a sledgehammer. I had never quite experienced that kind of pain. The medications numbed the pain enough to where it could be tolerated, but when there was a lapse it was all I could do to wait for the next dose.
When they took out the breathing tube, my throat had incredible pain and hoarseness. This didn't alarm the nurses when mom asked about my inability to speak.
"Sometimes that happens after a surgery. The throat is just sore from the tube."
It felt as though I was in the hospital forever, but only because it was so difficult to move even an inch. There was no strength to sit on my own or lie down in my bed. Baby steps down the halls were slow and with a nurse or family member to lean on. Fifteen feet and then we would turn around and head back to the room calling it a success.
A technician would come in for what I called my regular beating. They rolled me to my side, I gripped the railing of the hospital bed as best as I could, and the tech would beat my back (this is all I recall) to loosen anything in the lungs, to prevent pneumonia. Because breathing was incredibly difficult after open heart surgery, this treatment helped prevent the complication of pneumonia.
To help get breathing back, it was required to do daily breathing exercises with a treatment machine. I would blow air into the mouth nozzle and try to get the little lever inside to rise up. Lines at different heights marked the progress. I couldn't believe how difficult it was to breathe after the surgery.
There were tubes everywhere. In the side of my chest, in the middle of my chest. I was constantly hooked to an EKG, wore an oxygen mask, and pulse reader. Just getting up to go use the restroom or make the daily walk down the hall was a fifteen minute ordeal to untangle and unhook cords and rehook them to a moveable stand. The tubes in the center of my chest were inserted through teeny, tiny incisions. I still remember the feeling when the nurse said it was time to remove them. The sickly feeling of the chords moving through the chest, rubbing against the open incision, still gives me chills thinking back. Gratefully, the NG tube was removed prior to waking up (THAT is an insane feeling having a tube pulled out from the abdomen, through the esophagus and out the nose. *shudder*)
There were a few times that I had nightmares, dreaming of being a helpless body in a hospital bed, unable to move while being attacked. I would wake sweating profusely and in immense pain. Nights in the hospital were long and hard, and sleep never came easily, and just when I would finally drift off it came time for vitals. I just wanted to be home.
I had many visitors. Most of the time they were a welcome surprise, but there were times that I was so incredibly exhausted that I felt guilty wanting to sleep while they were there to keep me company. Even sleeping, it helped knowing someone I loved was watching over me.
After a few days, my voice was still not sounding well at all, in fact, it was now a concern with the nurses, though they still promised that it may just take a week or two to get back to normal.
Supposedly while under sedation post surgery, I began to thrash around, yanking at the breathing tube. The doctor advised that this rough jerking of the breathing tube was a good possibility for the cause of the difficult speaking. Only time would tell.
Monday, August 31, 2015
5th Open Heart Surgery Part II
Once the heart surgery was on the schedule, the months leading up were a blur. My parents and I met with the cardiac surgeon to review the surgery and the prep that would go in to it. Hearing the details of being placed on a heart and lung machine, the sternum cut open to reveal the heart, and the possibility of a lot of scar tissue to work through brought anxiety and stress, more than imagined.
Just that December upon hearing the news was the same time I got engaged to be married. We had hoped to marry in the spring, but due to the valve replacement, delayed the wedding until mid-July to allow time for proper recovery.
About a week or so prior to the surgery date, my dad and I went in to the hospital to do pre-op. Radiology techs took images of the heart, drew blood, took vitals and in the midst of all this I remember laying on the hospital bed and unable to hold back tears from the fear of the unknown. All the surgeries for my heart were so long ago that I couldn't remember what the recovery was like. On the bed I cried, the nurse walked in and saw how upset this nineteen-year-old girl was and brought back a teddy bear. They give those normally to children, and in that moment I felt like a child. My dad reached over to hold my hand and gave it a squeeze as I hugged Mr. Teddy. They nurse smiled and rubbed my shoulder, "You nervous?" I nodded in reply, for it was all I could muster.
"It will be wonderful. Dr. Teodori is the best. He is such a phenomenal surgeon. You're in great hands."
Yes, my heart would literally be IN his hands, and I knew that he was absolutely incredible. God blessed me with an amazing, capable surgeon.
The night before surgery my anxiety hit the ceiling, my nerves a fire with the possibilities of complications, painful recovery and hoping that I would wake up from the surgery. At that time my father and uncle gave me a priesthood blessing to calm and give me encouragement and hope that this surgery would have the necessary outcome for a healthy life post surgery. They blessed the surgeon that his hands would be capable and skilled. With this blessing, just like the many others, my fears left and a feeling of peace and love filled my body and soul. All would be well.
We awoke early to arrive to the hospital around five in the morning, fiance and parents in tow. We checked in, were admitted to the hospital and into a room. An I.V. was placed, oxygen tubes inserted into my nose and my heart rate began to climb from anxiety. The nurse came and gave me a relaxant medication and instantly I smiled, felt all the fear float away.
Then the time came for them to wheel me back. My parents and fiance walked back to the double doors, then were told they couldn't go any further. I waved goodbye and watched their faces disappear behind the doors. The hallway didn't seem too long, most likely due to the happy, carefree mood the medication put me in.
Soon I heard the beeping of machines as cords were hooked to monitors. I asked if they could put the arterial line in after I was asleep as I knew this would be quite painful. They obliged my request. In a matter of seconds a mask was put over my face, well wishes given from the nurses and then I began to count...10...9...8...7...
Just that December upon hearing the news was the same time I got engaged to be married. We had hoped to marry in the spring, but due to the valve replacement, delayed the wedding until mid-July to allow time for proper recovery.
About a week or so prior to the surgery date, my dad and I went in to the hospital to do pre-op. Radiology techs took images of the heart, drew blood, took vitals and in the midst of all this I remember laying on the hospital bed and unable to hold back tears from the fear of the unknown. All the surgeries for my heart were so long ago that I couldn't remember what the recovery was like. On the bed I cried, the nurse walked in and saw how upset this nineteen-year-old girl was and brought back a teddy bear. They give those normally to children, and in that moment I felt like a child. My dad reached over to hold my hand and gave it a squeeze as I hugged Mr. Teddy. They nurse smiled and rubbed my shoulder, "You nervous?" I nodded in reply, for it was all I could muster.
"It will be wonderful. Dr. Teodori is the best. He is such a phenomenal surgeon. You're in great hands."
Yes, my heart would literally be IN his hands, and I knew that he was absolutely incredible. God blessed me with an amazing, capable surgeon.
The night before surgery my anxiety hit the ceiling, my nerves a fire with the possibilities of complications, painful recovery and hoping that I would wake up from the surgery. At that time my father and uncle gave me a priesthood blessing to calm and give me encouragement and hope that this surgery would have the necessary outcome for a healthy life post surgery. They blessed the surgeon that his hands would be capable and skilled. With this blessing, just like the many others, my fears left and a feeling of peace and love filled my body and soul. All would be well.
We awoke early to arrive to the hospital around five in the morning, fiance and parents in tow. We checked in, were admitted to the hospital and into a room. An I.V. was placed, oxygen tubes inserted into my nose and my heart rate began to climb from anxiety. The nurse came and gave me a relaxant medication and instantly I smiled, felt all the fear float away.
Then the time came for them to wheel me back. My parents and fiance walked back to the double doors, then were told they couldn't go any further. I waved goodbye and watched their faces disappear behind the doors. The hallway didn't seem too long, most likely due to the happy, carefree mood the medication put me in.
Soon I heard the beeping of machines as cords were hooked to monitors. I asked if they could put the arterial line in after I was asleep as I knew this would be quite painful. They obliged my request. In a matter of seconds a mask was put over my face, well wishes given from the nurses and then I began to count...10...9...8...7...
Sunday, August 30, 2015
5th Heart Surgery
At nineteen years old, life could not have been any better. Having just started college as a dance major my goal was to enjoy the next semester dancing until the proper major became obvious. Still unable to come to a clear conclusion as to what I should decide to do 'for the rest of my life', dancing felt like a great option to stay busy doing something that I loved and greatly missed. As a clogger, on the flag team and dance team for High School, and touring Italy for three weeks folkdancing, dancing was the natural thing to do at the time.
I auditioned for select parts of the College dance recital and had been mainly selected for a duet and smaller group dances.
It was quite an honor being selected as being a modern, jazz and ballet dancer had never been part of my life until my sophomore year of High School. To say I was incredible would be highly exaggerated, but I did love it enough that I worked very hard to improve at any opportunity.
Days at this time were filled with eight hours of dancing and rehearsing. For quite some time, my right leg had been really bothering me, enough that walking from my car in the parking lot to the studio dance hall was excruciating. The pain traveled from hip clear down to the tips of my toes. Dancing through the pain for a little while only worked short term because there came with this difficulty breathing. Other dancers floated effortlessly across the floor, their winded breath lasted a short while, and they were able to work through the intense practicing. On the other hand, I had to sit out from a lot practice time to catch my breath and allow for my leg to recover.
During one of the recital duet rehearsals, my leg began to throb horribly. As the music progressed, the choreography for the lift approached. The pain of the leg and difficulty breathing was so intense that I ended up ramming my partner in the shoulder. He was hurt bad enough that he had to rest from rehearsals for two days and ice. At this time, one of the instructors let me know that dancing in her number would not work, and the duet number was also changed and given to an understudy. I had only two numbers left to perform in and I was heartbroken that all that hard work had to be given up because my leg and oxygen intake was handicapping me.
Finally, after long awaiting, my parents and I went in to the cardiology appointment scheduled to discuss the possibility of surgery in the right leg and receive a referral to a vascular surgeon for this procedure. Months prior, we had met with the cardiologist and discussed the leg, but had decided to allow time for the leg to create a new pathway for blood, as it had done so when I was just a toddler. We had hoped that dancing for hours a day would push the body to create new routes for the blood.
I remember the pain was so intense that after performing the recital group number I went to the back, lied down, and cried while squeezing my thigh with both hands. The pain of lack of oxygen and blood flow to a limb is extremely painful, and I was ready to have it repaired. This would be the second repair.
Sitting in the cardiologist office after having finished routine EKG and Echo tests, the doctor looked at my parents and I and held up a poster of the heart.
"Now, I know you are here for the leg. But let's take a moment to talk about the heart." He looked through his scholarly glasses with silver trim at us. We all must have looked a bit perplexed for several seconds because we had not come for my heart. All this pain for several months (about a year) was entirely for the leg. The heart was fine, and had been fine for years and years.
The cardiologist began to explain that the pulmonary valve was leaking and that it needed to be repaired within the next six months. Even though the leg seemed to need repaired, the heart had to come first as it was a top priority.
If the pulmonary valve was left in this condition, the blood pumping would leak into the right ventricle thus deteriorating the ventricles ability to squeeze and pump. Imagine it like a balloon that you fill with water and it begins to sag and stretch.
So, with the knowledge of this we left the cardiologist office and scheduled my fifth open heart surgery for March 2005.
I auditioned for select parts of the College dance recital and had been mainly selected for a duet and smaller group dances.
It was quite an honor being selected as being a modern, jazz and ballet dancer had never been part of my life until my sophomore year of High School. To say I was incredible would be highly exaggerated, but I did love it enough that I worked very hard to improve at any opportunity.
Days at this time were filled with eight hours of dancing and rehearsing. For quite some time, my right leg had been really bothering me, enough that walking from my car in the parking lot to the studio dance hall was excruciating. The pain traveled from hip clear down to the tips of my toes. Dancing through the pain for a little while only worked short term because there came with this difficulty breathing. Other dancers floated effortlessly across the floor, their winded breath lasted a short while, and they were able to work through the intense practicing. On the other hand, I had to sit out from a lot practice time to catch my breath and allow for my leg to recover.
During one of the recital duet rehearsals, my leg began to throb horribly. As the music progressed, the choreography for the lift approached. The pain of the leg and difficulty breathing was so intense that I ended up ramming my partner in the shoulder. He was hurt bad enough that he had to rest from rehearsals for two days and ice. At this time, one of the instructors let me know that dancing in her number would not work, and the duet number was also changed and given to an understudy. I had only two numbers left to perform in and I was heartbroken that all that hard work had to be given up because my leg and oxygen intake was handicapping me.
Finally, after long awaiting, my parents and I went in to the cardiology appointment scheduled to discuss the possibility of surgery in the right leg and receive a referral to a vascular surgeon for this procedure. Months prior, we had met with the cardiologist and discussed the leg, but had decided to allow time for the leg to create a new pathway for blood, as it had done so when I was just a toddler. We had hoped that dancing for hours a day would push the body to create new routes for the blood.
I remember the pain was so intense that after performing the recital group number I went to the back, lied down, and cried while squeezing my thigh with both hands. The pain of lack of oxygen and blood flow to a limb is extremely painful, and I was ready to have it repaired. This would be the second repair.Sitting in the cardiologist office after having finished routine EKG and Echo tests, the doctor looked at my parents and I and held up a poster of the heart.
"Now, I know you are here for the leg. But let's take a moment to talk about the heart." He looked through his scholarly glasses with silver trim at us. We all must have looked a bit perplexed for several seconds because we had not come for my heart. All this pain for several months (about a year) was entirely for the leg. The heart was fine, and had been fine for years and years.
The cardiologist began to explain that the pulmonary valve was leaking and that it needed to be repaired within the next six months. Even though the leg seemed to need repaired, the heart had to come first as it was a top priority.
If the pulmonary valve was left in this condition, the blood pumping would leak into the right ventricle thus deteriorating the ventricles ability to squeeze and pump. Imagine it like a balloon that you fill with water and it begins to sag and stretch.
So, with the knowledge of this we left the cardiologist office and scheduled my fifth open heart surgery for March 2005.
Tuesday, July 14, 2015
After the diagnois
There are many names for 'Tet' spells...Cyanotic Spell being one. This is when the blood becomes suddenly low in oxygen, thus turning the baby blue at the lips, fingertips and toes. A baby with Tetralogy of Fallot (uncorrected) will also have clubbed fingernails as a symptom. I had both.
When my parents took me in for a check-up around 10 months old, the doctor sat watching quietly, intently as I suddenly began to scream, my mom quickly lifted me to her shoulder in efforts to console.
"Does she do this often?" He asked.
"Yes. She gets really upset and starts screaming out of nowhere." The dim-lit home my parents lived in made it difficult to see that during these Cyanotic Spells, I was in fact turning blue.
Immediately the doctor picked up his phone, "We have an emergency. Please prep a room."
At that point I was admitted to the hospital, in which the first of many surgeries would soon follow. The hole in the wall (otherwise known as Ventricular Septal Defect) between the ventricles needed desperate correction.
The three following surgeries would nearly take my life.
Via the CDC's website regarding CHD's
Tetralogy of Fallot is made up of the following four defects of the heart and its blood vessels:
- A hole in the wall between the two lower chambers―or ventricles―of the heart. This condition also is called a ventricular septal defect.
- A narrowing of the pulmonary valve and main pulmonary artery. This condition also is called pulmonary stenosis.
- The aortic valves, which opens to the aorta, is enlarged and seems to open from both ventricles, rather than from the left ventricle only, as in a normal heart. In this defect, the aortic valve sits directly on top of the ventricular septal defect.
- The muscular wall of the lower right chamber of the heart (right ventricle) is thicker than normal. This also is called ventricular hypertrophy.
Monday, July 13, 2015
CHD what?
The title of this BLOG took a bit of thought. By a bit I mean five whole minutes. Don't let that fool you, when this brain gets goin' it's hard to stop it. 'Hey, brain! Stop thinking so much. Take a rest for a bit. Like, watch a reality show or something.'
There needed to be a personal relation of the title with who I am, or why I am me. Not that I necessarily define myself by having a CHD, but it is more that I have been able to experience some really amazing miracles, difficult fears, painful surgeries and the blessings of a healthy body and learning to never take it for granted. Should it not be forgotten - the importance of properly taking care of this physical body.
As this blog is really a memoir in non-book format, it is fitting to take a step way back to the date of my birth. My mom had not planned on having me early, and being that my dad was working in Georgia at the time, he heard my arrival over the telephone.
Per the hospital requirements of initiating a newborn baby into the world, all the necessary measurements, pokings, jabbings, slappings and proper bum spankings were carried out in the usual fashion. Healthy baby girl with incredible olive skin.
My parents were always healthy people, avoiding smoking, alcohol,latex gloves, wearing of fanny packs. Point being, they didn't do anything to warrant any birth defects of any sort, and had already had two children (my older siblings) that would go on to this date in time having no crazy health related diseases or conditions. They even had such great teeth that braces were reserved for the rest of us fangly-grin beasts.
When the General Practitioner came in to do the routine newborn check-up the sound of my heart registered a familiarity. Just a few months prior he had had a new baby diagnosed with a heart defect and the sound of our hearts were similar enough that he knew something was not right. In the first few days of birth, the valve in a newborns heart closes, so for further monitoring, my mom and I were kept an extra two days to make sure the valve closed. At five days old, my mom took me to Boise, Idaho to get further evaluation including a heart catheter.
The diagnosis came back Tetralogy of Fallot. A Congenital Heart Defect (congenital means disease or abnormality present at birth). I'm sure at that time my mom and dad were wondering 'what now?'
What happened after the diagnosis? Tune in tomorrow to find out...
Just some facts via The Children's Heart Foundation
Incidence, Morbidity & Mortality
TOF
There needed to be a personal relation of the title with who I am, or why I am me. Not that I necessarily define myself by having a CHD, but it is more that I have been able to experience some really amazing miracles, difficult fears, painful surgeries and the blessings of a healthy body and learning to never take it for granted. Should it not be forgotten - the importance of properly taking care of this physical body.
As this blog is really a memoir in non-book format, it is fitting to take a step way back to the date of my birth. My mom had not planned on having me early, and being that my dad was working in Georgia at the time, he heard my arrival over the telephone.
Per the hospital requirements of initiating a newborn baby into the world, all the necessary measurements, pokings, jabbings, slappings and proper bum spankings were carried out in the usual fashion. Healthy baby girl with incredible olive skin.
My parents were always healthy people, avoiding smoking, alcohol,
When the General Practitioner came in to do the routine newborn check-up the sound of my heart registered a familiarity. Just a few months prior he had had a new baby diagnosed with a heart defect and the sound of our hearts were similar enough that he knew something was not right. In the first few days of birth, the valve in a newborns heart closes, so for further monitoring, my mom and I were kept an extra two days to make sure the valve closed. At five days old, my mom took me to Boise, Idaho to get further evaluation including a heart catheter.
What happened after the diagnosis? Tune in tomorrow to find out...
Just some facts via The Children's Heart Foundation
Incidence, Morbidity & Mortality
- Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
- Congenital heart defects are the #1 cause of birth defect related deaths.
- Congenital heart defects are the leading cause of all infant deaths in the United States.
- Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.
Lifelong Disease
- Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
- There are an estimated 2,000,000 CHD survivors in the United States.
- For the first time, more than 50% of the CHD survivors are adults.
- 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.
Economic Factors
- 91,000 life years are lost each year in this country due to congenital heart defects.
- The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
General CHD FACTS
- More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
- There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
- In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
TOF
Sunday, July 12, 2015
Somewhere it Begins
Writing is nothing new for me. I've self-published two books. Finished another two that have yet to be published. Plus all the short stories about unicorns and leprechauns penned during the 'magical' years we all know as pre-teens. During the teenage years it seemed only natural to rebel against pretty much anything that defined who I was created to be - but that's not a story for right now.
A few months ago I sat in the plush sofa, pillows to the side, purse placed on the floor next to the leg of the chair where it's always set (creature of habits we are), sharing with my therapist about what experiences have come into my life, some because of choices made by yours truly, others due to choices from others. In that moment I thought I knew what was coming, those words from Therapist's mouth were thoughts that had been jamming the news feed of my brain for quite some time - try more than a few years - yet it never seemed 'ideal', or 'the way I envisioned'.
Therapist leaned forward with elbows firmly on knees, "You know what I'm thinking. As you're telling me all this?""Yeah," with a nod I continued for Therapist, "I need to write a memoir. Already published a few fiction works, working on editing a third."
"Actually, what came to my mind is a blog. About your experiences. There's a lot here to share."
Do you ever find yourself asking God over and over for an answer to the same question, yet being unsatisfied you then move forward doing your own 'thing'? And then, in the midst of doing that 'thing' that was not the 'thing' God wanted you to do, there comes this constant nagging. Friends, that is your spirit trying to communicate to that natural man brain, 'Hey there, natural man brain, God told you what to do. And, truth be told, I really want you to listen to God because, well, He made us. He made us to be really great! With lots of talents. With lots of potential. And you not listening and acting upon His answer is frustrating a really amazing plan he has for us.'
Yes, when you feel irritated, when life seems to be missing something, listen closely because it probably is.
If I were to be right up front and honest, my life is not at all what I planned. But in all the chaos and upheaval of this life, one thing has remained constant and never-changing. God's promises and His love. The strength of my Savior is a beacon of light even when confusion and temptation, despair and pain cloud my mind.
There are millions and millions of people who have life experiences, events, tragedies, circumstances - call it what you may - that are so much more devastating than anything that I've ever experienced, and so I guess my point is - 'Why me, God? I have Christ in my life. I have two beautiful boys. Yet, I feel so inadequate to share my struggles and experiences because I am so humbled and blessed. My trials are seemingly nothing when compared to all that is out there in this world. Though life isn't what I had planned at this point in time, though the expectations have been a bit shattered, it is still a BEAUTIFUL, BLESSED life."
So here I am. God keeps pointing me to this little path and in Him I put my trust.
'Trust in the Lord with all thine heart; and lean not unto thine own understanding.' Proverbs 3:5
Subscribe to:
Posts (Atom)