Worth
quiet confidence
realizing self worth comes
from within one's heart
realizing self worth comes
from within one's heart
...
Bald Eagle
Haliaeetus leucocephalus
Flagler County, FL, September 2013
Friday, September 27, 2013
Fighting Hypertension and Supporting Cardiovascular Health Through Haiku
I have been working with various types of stress relief therapies to lower my blood pressure and reduce hypertension, including diet, cardio, medications and also short poetry. If you notice, this site has a new tab entitled "One Breath Poetry". Enjoy the nature centered haiku and other short poems, all of which are a reflection of my search for peace and health.
Tuesday, September 17, 2013
Renal and Aorta Dissection in Marfan Syndrome. Color Doppler Views.
For those of you interested in color doppler photos of a dissected renal artery and aorta, these are my latest, taken a couple weeks ago.
The false lumen is like a dead end street. There is no outlet to the false lumen channel. Blood flows into the false lumen through the tear in the inner most aortic wall layer called the intimal layer.
Medications and diet can help control blood pressure and pulse rate. The lower these variables are the more likely the blood flow can be managed. My blood pressure averages 109/59 and I have a pulse rate of around 45 beats per minute.
The issue with my massive dissection is the fear of aneurysm or total blockage of blood flow.
Because renal artery dissection is one of the health problems I am dealing with, my hypochondria goes into high gear whenever I see blood in my urine. Is my dissected renal artery aneurysing or bursting?
In fact, last month while visiting my parents in Tallahassee I started having lots of blood in my urine. My wife, Judy took me to Tallahassee Memorial Emergency Room. I honestly thought I was having an aneurysing renal artery because of the pain's location and the amount of blood. Fortunately the blood was caused by a kidney stone.
But living with constant fear, knowing one's aorta wall is compromised is a constant physical and mental challenge, one experienced by most of those struggling with Marfan Syndrome and other connective tissue disorder issues.
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| Color doppler showing blood flow through my aorta #Marfan Syndrome #Dissected Aorta |
Color on a doppler echogram represents the direction of blood flow. As indicated by the legend bar on the upper right, red and the shades of red represent the velocity of blood moving towards the ultrasound transducer. Oppositely, shades of blue ranging from light to dark reflect the speed of blood flowing away from the doppler unit.
In the photo above the blue represents blood flowing through the true aortic lumen ( the open, original aortic channel) while the redish orange colored section represents blood flowing back towards the ultrasound, or blood caught in the false lumen or channel and flowing back towards the doppler after being caught in the dead-end channel.
The false lumen is like a dead end street. There is no outlet to the false lumen channel. Blood flows into the false lumen through the tear in the inner most aortic wall layer called the intimal layer.
 |
| My aortic dissection, the torn intimal flap is easily seen crossing the inside diameter of the thoracic aorta |
The photo immediately above shows the ultrasound without doppler effects. My aorta's false lumen is visible running directly through the middle of the channel. This 'flap' you see is the section of my aorta torn away from the rest of the vessel.
Blood flows through an open channel on one side. The other side of the intimal flap though goes no where. It is a dead end opening where blood flows in, then back out.
As long as the true lumen is open enough to provide adequate blood flow and the aorta wall does not aneuryze from loss of strength then the flow of blood to the body may still occur.
 |
| Another side view of the intimal flap inside my aorta. |
The issue with my massive dissection is the fear of aneurysm or total blockage of blood flow.
Because renal artery dissection is one of the health problems I am dealing with, my hypochondria goes into high gear whenever I see blood in my urine. Is my dissected renal artery aneurysing or bursting?
 |
| Doppler view of the flow through my left renal artery |
In fact, last month while visiting my parents in Tallahassee I started having lots of blood in my urine. My wife, Judy took me to Tallahassee Memorial Emergency Room. I honestly thought I was having an aneurysing renal artery because of the pain's location and the amount of blood. Fortunately the blood was caused by a kidney stone.
But living with constant fear, knowing one's aorta wall is compromised is a constant physical and mental challenge, one experienced by most of those struggling with Marfan Syndrome and other connective tissue disorder issues.
 |
| Doppler view of my right renal artery |
Friday, September 13, 2013
Cardiac Arrhythmia and Marfan Syndrome, Socks and Gloves
Cold temperatures and I have never been fond of each other. My heart too detests what the cold does to my circulatory system.
With the Marfan Syndrome issues affecting my body, including extra height and long limbs, the heart inside has to work extra hard every moment just pump blood those extra long distances. But when cold affects my fingers and toes my heart sometimes goes crazy trying to figure out how to handle pumping blood through now constricted blood vessels way out there in the fingers and toes.
To put it simply, when my fingers and toes become cold my heart sometimes starts racing or jumping around with crazy atrial fibrillation, also know as cardiac arrhythmia.
My simple solution for avoiding this type of heart fluttering lies in warm socks, a pair of soft comfy gloves and warm weather.
Its that easy for me to avoid certain types of cardiac arrhythmias. Keep those toes and fingers warm. Don't let them get cold.
Our body has certain reactions to cold. One of the first things our body does when our peripheral temperature (temperature of toes, limbs, fingers, arms and ears) drops is to vaso-constrict blood vessels. There is a good, brief explanation about cold and our body's cardiovascular system on the Livestrong.com website.
An even more comprehensive and excellent brief, visually oriented website explaining the fundamentals of cardiovascular output and variables that can affect both blood pressure and heart rate is published by James Doohan and is a site I highly recommend.
As my curiosity concerning peripheral body temperature and arrhythmia grew, I wondered about my own body.
Judy says my fingers and toes are unusually cold and I agree. I hate the cold weather or touching anything cold or jumping water.
So I measured my body temperature orally with our medicine thermometer. The temperature in my mouth was 97.7 F, or 36.5 C. My fingers and toes were so cool that the digital medicine thermometer could not determine the temperature.
Not to be thwarted I found the industrial infra-red digital thermometer I had in the garage, installed a new 9 volt battery and pointed the laser at my toes. The readout told me why my feet felt like ice. Toe temperature was a cool 74.4 F or 23.6 C. My fingers were not much warmer at 76 F. The house temperature was a pleasant 79 F while the outside temperature hovered in the mid 80's F.
For comparison I measured my wife's and children's peripheral body temperatures, though the teens thought I was crazy.
Judy's finger and toe temperatures were in the low 90's F. The two marf teens, with their long limbs were more like me, with lower peripheral body temperatures.
These temperatures are no surprise to me because I know my heart has to pump blood extra long distances, all the while dealing with installed metal parts and foreign aortic components. The old clicker is also stressed from multiple open heart surgeries, functioning well below normal output.
So when the fingers and toes get cold and the skin vessels constrict as they do naturally to conserve body heat, the heart has a harder job pumping blood. At this point all the node chemicals and signals start to fire, diastolic pressure jumps and my heart attempts to increase output.
It is kind of like flooring the accelerator pedal in a car with an engine about to throw a rod. Motor starts shaking, clanging, huffing and puffing and, well you get the picture.
Of course there are many causes of arrhythmia.
But because they are so frightening to me with my beat up heart and aorta, controlling one cause is important. When my heart goes into erratic beat patterns I become concerned the dissected descending aorta will further aneuryze, dilate or even burst.
Fortunately warm comfortable socks, like those made for diabetic patients can moderate lower body peripheral temperatures and reduce the likelihood of signalling for increased cardiovascular output. Gloves too address the same issue on the hands.
Avoiding cold weather is my big strategy.
But wherever you live, keeping peripheral body temperature fluctuations to a minimum might help you solve some of your afib or arrhythmia problems. It is worth a try!
.JPG) | ||
| Touching cold objects causes my heart to beat wildly |
With the Marfan Syndrome issues affecting my body, including extra height and long limbs, the heart inside has to work extra hard every moment just pump blood those extra long distances. But when cold affects my fingers and toes my heart sometimes goes crazy trying to figure out how to handle pumping blood through now constricted blood vessels way out there in the fingers and toes.
To put it simply, when my fingers and toes become cold my heart sometimes starts racing or jumping around with crazy atrial fibrillation, also know as cardiac arrhythmia.
My simple solution for avoiding this type of heart fluttering lies in warm socks, a pair of soft comfy gloves and warm weather.
Its that easy for me to avoid certain types of cardiac arrhythmias. Keep those toes and fingers warm. Don't let them get cold.
Our body has certain reactions to cold. One of the first things our body does when our peripheral temperature (temperature of toes, limbs, fingers, arms and ears) drops is to vaso-constrict blood vessels. There is a good, brief explanation about cold and our body's cardiovascular system on the Livestrong.com website.
An even more comprehensive and excellent brief, visually oriented website explaining the fundamentals of cardiovascular output and variables that can affect both blood pressure and heart rate is published by James Doohan and is a site I highly recommend.
As my curiosity concerning peripheral body temperature and arrhythmia grew, I wondered about my own body.
Judy says my fingers and toes are unusually cold and I agree. I hate the cold weather or touching anything cold or jumping water.
So I measured my body temperature orally with our medicine thermometer. The temperature in my mouth was 97.7 F, or 36.5 C. My fingers and toes were so cool that the digital medicine thermometer could not determine the temperature.
Not to be thwarted I found the industrial infra-red digital thermometer I had in the garage, installed a new 9 volt battery and pointed the laser at my toes. The readout told me why my feet felt like ice. Toe temperature was a cool 74.4 F or 23.6 C. My fingers were not much warmer at 76 F. The house temperature was a pleasant 79 F while the outside temperature hovered in the mid 80's F.
For comparison I measured my wife's and children's peripheral body temperatures, though the teens thought I was crazy.
Judy's finger and toe temperatures were in the low 90's F. The two marf teens, with their long limbs were more like me, with lower peripheral body temperatures.
These temperatures are no surprise to me because I know my heart has to pump blood extra long distances, all the while dealing with installed metal parts and foreign aortic components. The old clicker is also stressed from multiple open heart surgeries, functioning well below normal output.
So when the fingers and toes get cold and the skin vessels constrict as they do naturally to conserve body heat, the heart has a harder job pumping blood. At this point all the node chemicals and signals start to fire, diastolic pressure jumps and my heart attempts to increase output.
It is kind of like flooring the accelerator pedal in a car with an engine about to throw a rod. Motor starts shaking, clanging, huffing and puffing and, well you get the picture.
Of course there are many causes of arrhythmia.
But because they are so frightening to me with my beat up heart and aorta, controlling one cause is important. When my heart goes into erratic beat patterns I become concerned the dissected descending aorta will further aneuryze, dilate or even burst.
Fortunately warm comfortable socks, like those made for diabetic patients can moderate lower body peripheral temperatures and reduce the likelihood of signalling for increased cardiovascular output. Gloves too address the same issue on the hands.
Avoiding cold weather is my big strategy.
But wherever you live, keeping peripheral body temperature fluctuations to a minimum might help you solve some of your afib or arrhythmia problems. It is worth a try!
Monday, September 9, 2013
Morninga can be Deadly too. Plant Interactions with Medicines.
Seems lessons are always learned the hard way for me. It is my own fault though.
I had always read about the many benefits of the plant moringa, especially as a food and source of vitamins, minerals and nutrients.
In fact, moringa provides solutions to far more issue than just health. The tree can remove pollution from water, grows easily where water is scarce and provides livestock with protein.
As a plant biologist, I've always munched on berries, leaves, nuts and fruit from plants in the garden and plants in the wild. And I've never had a problem, until the other day after a week of eating a handful of moringa leaves each day.
Immediately after eating the moringa leaves I began feeling full of energy. There is quite a bit of literature available pointing to how the phytochemicals in moringa can actually improve peripheral circulation.
But within a couple of days I began to urinate blood, lots of blood.
At first I thought I was passing another kidney stone. It'd only been a couple weeks since I passed three very large stones and they did some serious damage on the way down, creating lots of blood flow with their razor sharp edges.
But the kidney stone damage cleared up within a couple of days.
After a week of urinating blood I began to think the problem at hand was not a kidney stone issue.
Then someone sent me a link to a website where the information suggested moringa could cause internal bleeding. So I began to research moringa's effects on bleeding and clotting. There are several quite complicated scientific papers on how moringa's chemical components can interfere with blood clotting. After reading and rereading the medical terms I realized that the plant is actually a very powerful anti-coagulant and even an abortifacient.
So the morning habit of eating moringa leaves stopped. And within a day there was no more blood in my urine.
The more I read and researched, the more I realized this plant is not a plant to be taken lightly when ingested for any reason.
Moringa was causing me to hemorrhage. I was actually bleeding out internally.
Now before I would had scoffed if I had read this. I would have said something to the effect of 'it was a fluke interaction with other medications', or 'actually something else and not moringa'.
But once you experience first hand the power, good or bad, of this plant, you stand in awe of it.
We have several moringa trees planted around the yard. Now everytime I walk by one I shiver just a little. The plant can be a blessing. The plant can also be a monster.
Lesson learned the hard way. Herbs, leaves and berries can be good. They can also be deadly.
 |
| Moringa oleifera, a very powerful herb that can cause bleeding |
In fact, moringa provides solutions to far more issue than just health. The tree can remove pollution from water, grows easily where water is scarce and provides livestock with protein.
As a plant biologist, I've always munched on berries, leaves, nuts and fruit from plants in the garden and plants in the wild. And I've never had a problem, until the other day after a week of eating a handful of moringa leaves each day.
Immediately after eating the moringa leaves I began feeling full of energy. There is quite a bit of literature available pointing to how the phytochemicals in moringa can actually improve peripheral circulation.
But within a couple of days I began to urinate blood, lots of blood.
At first I thought I was passing another kidney stone. It'd only been a couple weeks since I passed three very large stones and they did some serious damage on the way down, creating lots of blood flow with their razor sharp edges.
But the kidney stone damage cleared up within a couple of days.
After a week of urinating blood I began to think the problem at hand was not a kidney stone issue.
Then someone sent me a link to a website where the information suggested moringa could cause internal bleeding. So I began to research moringa's effects on bleeding and clotting. There are several quite complicated scientific papers on how moringa's chemical components can interfere with blood clotting. After reading and rereading the medical terms I realized that the plant is actually a very powerful anti-coagulant and even an abortifacient.
So the morning habit of eating moringa leaves stopped. And within a day there was no more blood in my urine.
The more I read and researched, the more I realized this plant is not a plant to be taken lightly when ingested for any reason.
Moringa was causing me to hemorrhage. I was actually bleeding out internally.
Now before I would had scoffed if I had read this. I would have said something to the effect of 'it was a fluke interaction with other medications', or 'actually something else and not moringa'.
But once you experience first hand the power, good or bad, of this plant, you stand in awe of it.
We have several moringa trees planted around the yard. Now everytime I walk by one I shiver just a little. The plant can be a blessing. The plant can also be a monster.
Lesson learned the hard way. Herbs, leaves and berries can be good. They can also be deadly.
Monday, August 26, 2013
Fasting, Cardiovascular Issues and Marfan Syndrome
Quite excited about the four day get back to nature fast I am on.
Follow my diet journal here on the blog under the diet tab. Trying to stick to juiced or raw vegetables and fruits. After Day One so far so good.
Even with all the meds I felt no additional dizziness, blood pressure or blood sugar issues. In fact yesterday afternoon I had so much more energy that I spent additional time doing my physical therapy in the pool.
My blood pressure had dropped about ten points both systolic and diastolic - and this is OK for me because of my dissected descending aorta.
I will do an in-depth post towards the end of the week, but so far so good!
 |
| Kevin Songer's Marfan Life Challenges |
Even with all the meds I felt no additional dizziness, blood pressure or blood sugar issues. In fact yesterday afternoon I had so much more energy that I spent additional time doing my physical therapy in the pool.
My blood pressure had dropped about ten points both systolic and diastolic - and this is OK for me because of my dissected descending aorta.
I will do an in-depth post towards the end of the week, but so far so good!
Wednesday, August 21, 2013
Life Tips, Aortic Dissection & Marfan Syndrome
There is a new 'page' tab on our blog beginning this week, one labeled "Life Tips".
We want to add a new tip daily, sorted into a variety of categories. Hopefully these Life Tips will help make your life easier, especially if you are challenged with cardiovascular dissection, aneurysms or a connective tissue disorder such as Marfan Syndrome.
Please feel free to submit your one-liner tips you would like to share, and let me know if you wish to have your contact info included. If you wish to remain anonymous, please indicate your desire to do so.
Here are the first four Marf Life Tips from this week! Hope they help.
Please feel free to submit your one-liner tips you would like to share, and let me know if you wish to have your contact info included. If you wish to remain anonymous, please indicate your desire to do so.
Here are the first four Marf Life Tips from this week! Hope they help.
- LIFE: Every morning, first thing to say is, "my number one job today is to stay alive". Dead, you are no good to anyone.
- LIFE: Progress is to me measured incrementally, in small advances. Over time tiny accomplishments add up to great significance. Do not expect leaps and bounds forward. Take one baby step at a time.
- MEDICATIONS: Most all of my prescription medications come from Winn-Dixie Pharmacy. They have a $4 generic plan that saves me hundreds (potentially thousands) of dollars per month. Wal-Mart has a similar plan. Because at this time I do not have insurance, the Winn-Dixie $4 generic prescription plan is a life-saver. Note: Your doctor must write the script in one month supply increments to qualify for the $4 generic plan.
- SUPPORT: Join a support group. Facebook and social networks offer networking to real solutions and other people just like yourself. This is so important.
Tuesday, August 13, 2013
The Pain House; Chronic Illnesses and Family Life with Marfan Syndrome
As a young child I pledged to myself I'd never talk about how sick I might be. Listening to older people discuss their ailments was revolting and I'd never be a part of such conversations for many reasons. Life was not supposed to be about pain.
Fast forward to the late 1990s.
Judy and I were great outdoor adventure parents to our kids. Hiking in the deepest of Florida's swamps, our kids stepped on the tail of six foot timber rattlesnakes, ran from charging boars and hunkered down in the canoe as ten foot alligators sailed overhead. We made sure their home-school science classes were true hands on experiences.
Yes, flying alligators and the story is worth briefly telling. One day, Judy, I and Jincy and Ruairi were canoeing up in the wild, wild St. Marks National Wildlife Refuge near Live Oak Island, Florida. Ruairi was two and a half years old, Jincy four at the time. Wakulla Beach was our launch site and after paddling out in Apalachee Bay for a bit we made our way up Goose Creek several miles.
Goose Creek is pure wilderness with high alluvial banks of sand and oyster shells along the shores, some as high as ten or so feet above the surface of the brackish water. Mullet swim up the creek to the big freshwater headwaters spring. Some days the spring is filled with millions of mullet, a haven for the big hungry gators living in the adjacent swamp. With the mullet come the mullet fishermen.
We heard the loud airboat way before the driver saw us and Judy turned to look at me as if to say 'he's going awfully fast'. Jincy and Ruairi had their life jackets on as always. Judy and I paddled as hard as we could to bring our canoe up against the bank under a high sand ridge where, unbeknownst to us, a very large alligator was sunning.
If you've ever heard an airboat you know how loud and startling they can be.
As the fisherman spun around the bend in the creek, barely forty feet from us the commotion startled not only us but the big gator just above our heads.
It happened fast but the memories are so clear. One second the airboat to our left was churning water, the next second a long torpedo shaped creature jumped off the bank above us, sailing inches over our children's heads, splashing into the water adjacent the canoe.
The airboat kept going, the operator not even noticing us. The alligator swam off, scared to death. Jincy and Ruairi sat still, knowing their Mom and Dad were always an adventure a minute and maybe this flying alligator was not really that much out of the ordinary. Fortunately we made it back to the safety of Wakulla Beach later that day.
But something since has changed.
No longer are we the adventuresome parents we used to be. Sure time has passed. Jincy and Ruairi are in their late teens today.
Sitting on the lanai yesterday, Judy and I were discussing our chronic illnesses, my dissection and Marfan issues and her IC problems, and she looked over to me.
'This is a pain house', she said.
Her comment threw me for a loop. And now I fear I've become what I pledged never to be.
Tonight I wondered how dismal, bleak and gloomy the on-going conversation about pain and chronic illnesses must be for our children, Jincy and Ruairi.
What am I doing to our kids? What are Judy and I doing to ourselves by allowing third and fourth parties, the party of chronic Marfan pain and the party of chronic IC, to be in our life all the time?
Tonight I could not sleep much thinking about our house and how it had become a 'pain house'.
So I am making a new pledge, one this time I am going to try and keep. Our house is going to be known as a 'loving, fun and safe home', not a 'pain house'.
For starters I am not going to speak about my chronic pain or debilitation inside the house anymore. If I want to talk in a gloomy manner then I will go outside to do it.
For me this will be a challenge because I will now have to think about something new to talk about at dinner, in the living room, in the bedroom and on the phone.
I am sure there will be other steps to take along the way but I was different before and I can be different again.
This is not to invalidate our pain. I acknowledge our very difficult challenges. Leaving our children with an example of how to make the best of any situation would be a good way to ultimately be remembered.
Wow! Marfan life is a challenge. Being a smart parent is even more challenging.
 |
| We are going to start having fun once more - no more 'pain house' #Marfan |
Judy and I were great outdoor adventure parents to our kids. Hiking in the deepest of Florida's swamps, our kids stepped on the tail of six foot timber rattlesnakes, ran from charging boars and hunkered down in the canoe as ten foot alligators sailed overhead. We made sure their home-school science classes were true hands on experiences.
Yes, flying alligators and the story is worth briefly telling. One day, Judy, I and Jincy and Ruairi were canoeing up in the wild, wild St. Marks National Wildlife Refuge near Live Oak Island, Florida. Ruairi was two and a half years old, Jincy four at the time. Wakulla Beach was our launch site and after paddling out in Apalachee Bay for a bit we made our way up Goose Creek several miles.
Goose Creek is pure wilderness with high alluvial banks of sand and oyster shells along the shores, some as high as ten or so feet above the surface of the brackish water. Mullet swim up the creek to the big freshwater headwaters spring. Some days the spring is filled with millions of mullet, a haven for the big hungry gators living in the adjacent swamp. With the mullet come the mullet fishermen.
We heard the loud airboat way before the driver saw us and Judy turned to look at me as if to say 'he's going awfully fast'. Jincy and Ruairi had their life jackets on as always. Judy and I paddled as hard as we could to bring our canoe up against the bank under a high sand ridge where, unbeknownst to us, a very large alligator was sunning.
If you've ever heard an airboat you know how loud and startling they can be.
As the fisherman spun around the bend in the creek, barely forty feet from us the commotion startled not only us but the big gator just above our heads.
It happened fast but the memories are so clear. One second the airboat to our left was churning water, the next second a long torpedo shaped creature jumped off the bank above us, sailing inches over our children's heads, splashing into the water adjacent the canoe.
The airboat kept going, the operator not even noticing us. The alligator swam off, scared to death. Jincy and Ruairi sat still, knowing their Mom and Dad were always an adventure a minute and maybe this flying alligator was not really that much out of the ordinary. Fortunately we made it back to the safety of Wakulla Beach later that day.
But something since has changed.
No longer are we the adventuresome parents we used to be. Sure time has passed. Jincy and Ruairi are in their late teens today.
Sitting on the lanai yesterday, Judy and I were discussing our chronic illnesses, my dissection and Marfan issues and her IC problems, and she looked over to me.
'This is a pain house', she said.
Her comment threw me for a loop. And now I fear I've become what I pledged never to be.
Tonight I wondered how dismal, bleak and gloomy the on-going conversation about pain and chronic illnesses must be for our children, Jincy and Ruairi.
What am I doing to our kids? What are Judy and I doing to ourselves by allowing third and fourth parties, the party of chronic Marfan pain and the party of chronic IC, to be in our life all the time?
Tonight I could not sleep much thinking about our house and how it had become a 'pain house'.
So I am making a new pledge, one this time I am going to try and keep. Our house is going to be known as a 'loving, fun and safe home', not a 'pain house'.
For starters I am not going to speak about my chronic pain or debilitation inside the house anymore. If I want to talk in a gloomy manner then I will go outside to do it.
For me this will be a challenge because I will now have to think about something new to talk about at dinner, in the living room, in the bedroom and on the phone.
I am sure there will be other steps to take along the way but I was different before and I can be different again.
This is not to invalidate our pain. I acknowledge our very difficult challenges. Leaving our children with an example of how to make the best of any situation would be a good way to ultimately be remembered.
Wow! Marfan life is a challenge. Being a smart parent is even more challenging.
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