Wednesday, November 19, 2014

Cold Weather, Aortic Dissection, Strokes and Ischemic Events

Cold weather is hard on my heart.  In addition to Raynaud's Syndrome I just do not like being cold.  Growing up in South Florida I have always craved warmth and bright sunlight.

This week the arctic blast came through.  My periphery circulation constricts and my heart goes wild trying to pump enough blood to my ice cold finger and toes.  My pulse has doubled over the last week from an average of 45 bpm to well over 100 now.  I have doubled up on my Losartan dosage with my cardiologist's permission.  The increase in Losartan helped last winter.

Some web resources indicate more strokes and ischemic events occur during the cold weather.  Unfortunately, even aortic dissections seem to be more prevalent during cold weather.

Right now I have a hot cup of green tea in my hand while I 'peck' the computer keyboard with my left hand.  Gloves work too.

Stay warm this winter season!

Monday, October 27, 2014

Chronic Vertigo and Dizziness After Open Heart Surgery

Next month it will be the three year anniversary of my ascending and descending aortic dissection.  I still struggle with chronic dizziness, light headedness and vertigo.  The feeling that I may pass out at any time really hasn't gotten much better and I refer these symptoms as my 'Swirling Head Syndrome'.
Vertigo, Dizziness and 'Blacking Out' are, I think, a result of 'Pump Head' and Blood Flow Issues
Unfortunately, I feel like I am going to faint at almost any given point during the day.  The wooziness though is especially pronounced when I move, stand up, bend over, walk, ride my bike or try to drive.

I do not drive any more for a number of reasons.  First and foremost I recognize I am a danger to those in the car with me and others on the road.

If you have had open heart surgery requiring significant time on a heart-lung machine then you too may be experiencing chronic dizziness, loss of memory, vertigo and other balance-awareness issues.

Some call this phenomena 'Pump Head' after the heart-lung pumping process.  My neurologist refers these symptoms as a result of 'embolistic events' occurring during and post-open heart surgery.

But I have pin-pointed four main symptom-sources of my Swirling Head Syndrome.  They include:

1. My eyes, especially my right eye, will loose focus and everything turns dark grey at random times.  These episodes last for five to ten minutes or so and when they happen I have to sit or lay on the ground to keep from falling over.  As soon as this begins I stop my bicycle, lay it down on the ground and sit until the vision returns.

It takes about three to five seconds for the eyesight to be completely gone and the blurry part lasts about two to three minutes usually.  My eye doctor does not know what causes this but she has told me I do have a small aneurysm in my right eye.

2. Secondly there is that tingly feeling in the top of my head I can best describe as like what I feel when breathing the knock-out gas before a colonoscopy; the kind of fuzzy feeling where my ears start ringing and my awareness seems to dissolve into a state of unconsciousness.  This I usually feel throughout the day and is usually associated with standing up, moving, walking, turning or any activity involving motion.

3. Third reason I become faint is when my right kidney starts hurting really bad or the false lumen in the descending dissection begins to tug and pull.  This is not an incision pain.  Rather this pain is an intense, strong hurt.  I experience this pain most days and have learned to 'breath' through the waves of intensity until they pass.

Sometimes my brain thankfully shuts down and I black out momentarily.  I have never had any of my doctors, not one, ever discuss pain management with me beyond the narcotics I was given for a brief period of time after the open heart surgery incisions.

4. Finally I have a difficult time processing complications.  When I say 'complications' I mean anything non-simple.  If I am walking and come up on a section of walkway with different color paver tiles laid in different patterns then I will quickly become dizzy and have to sit down and look up for the sensation to subside.

Before my drivers license was suspended I would encounter the same situation at intersections.  Soon I became terrified I was going to hurt someone with my inability to process how to navigate the automobile in and around other vehicles.

Well stocked grocery store shelves with hundreds of colorful, different shaped containers send me reeling.

But I am focusing on trying to improve my Swirling Head Syndrome issues through memory and concentration exercises, diet and physical therapy, and writing my blog.  But the blog writing is so frustrating.  Where before I had excellent word recall now I must use a thesaurus or dictionary with the composition of each paragraph.

Maybe, over time, the pump head and other aortic dissection related effects will begin to subside and resolve themselves.

I would really like to be able to drive again someday - that is if I can do so safely.

Apparently 'pump head' or 'Swirling Head Syndrome' is a fairly common challenge aortic dissectees deal with.  After three years it is still swirling through my head.  If you are struggling with the same, don't feel alone.

Saturday, October 25, 2014

Designed to Help Disabled? 'Normal' Persons May Not Understand Disabled Life.

As a disability challenged person living in a world designed for 'normal' people, everyday brings on tough new gauntlets to navigate.
Publix bicycle rack is also the location for employee smoke breaks.
As a disabled cyclist I am forced to walk through second hand cigarette smoke to use the Publix Bike Rack
Unfortunately as the world moves ahead with new buildings, roads, cities and infrastructure, those of us who face life physical and mental challenges are still being left far behind.

Yes, there are many advocate groups who do good and help keep the issue of being 'different' than most out in the spotlight, and I am thankful for these efforts.  Groups such as the National Organization on Disability, American Association of People with Disabilities, The Arc, the National Disability Rights Network, and others all have a web presence.  Some offer links to helpful references and other provide useful information such as contact telephone numbers and addresses.

Yet even though advocacy groups may influence broad reaching policy decisions and have a positive effect on me as a 'disabled' person, I still encounter needless and thoughtless situations where I am discriminated against daily, especially with respect to access and transportation.

Yes, today there are many marked improvements in our surroundings and cities that have a profound effect for good for those of us living the disabled life.

Granted, most of us disabled persons can now use sidewalks with non-skid ramps instead of a steep curb, and rely on cross-lights that talk, whistle or beep to alert us of changes in traffic flows.  Too, there are automatic doors and widened bathroom stalls with reachable sinks.  Even most public transportation systems are 'disabled' friendly now, in many ways.  This is all well and good but there is still so much room for simple, straightforward and uncomplicated improvement.

Sometimes the most simplest, obvious things that can help a physically or mentally challenged person are those things 'normal' people tend to overlook and are the easiest for the world in general to forget.

For instance, I bike my world.  I have to bike my world because my drivers license is medically suspended due to my dissected aorta and side effects of the medications I take to keep my heart just barely beating in 'anti-rupture' mode. I am 'OK' with living my life as a cyclist though it presents difficulty at times.

Our local grocery store, Publix on Palm Coast Parkway has graciously installed a bicycle rack to the left of and not too far away from the front door.  I am grateful for the bike rack.  Many stores or facilities, even those you would think would have bike racks, do not provide bike racks.  But they all provide a massive amount of parking spaces in huge asphalt or concrete paved parking lots for the car drivers.

Back to the bike rack.  I am grateful to Publix for the bike rack availability.  I love their grocery store and they are one of the few places where I can purchase high quality, reasonably priced organic foods.  I depend on healthy foods to support my kidneys (which are recovering from total failure after open heart surgery) and my dissected cardiovascular system.  Unfortunately Publix employees keep forgetting that as a cyclist who uses the bike rack I must breath in all the second hand cigarette smoke their employees cough out when they take their smoke breaks immediately adjacent the awesome galvanized bike station.

This is just a typical example of 'normal' people not having a clue what the physically or mentally challenged persons have to go through to adapt to the 'normal' world.

I have sought out the store managers and asked repeatedly to have the employee smoke station moved away from the bicycle rack area.  The tall young female manager usually makes this happen for a day or so but then the entire must breath second hand smoke begins all over again.  I ask again and the smoking stops for a day or so yet begins once more soon afterwards.

Compounding the problem, customers who exit the store see the employees smoking and light up right next to the bike rack also.  
As a disabled cyclist I am forced to walk through second hand cigarette smoke to use the Publix Bike Rack
'Normal' people - those driving cars - don't have to walk through the smoke, rather they walk in through the front doors through areas away from the smoker break section.  If the employee smoke break section was adjacent the front door and 'normal' customers had to walk through the smoke, the smoking would immediately cause an uproar from 'normal' persons.

There is a very easy solution to this problem.  Publix should install a 'No Smoking' sign around all store entryways AND the bike rack area.  It should be obvious that if I purchase organic foods, those fruits and vegetables and meats free from pesticide, herbicide, antibiotic  and hormone contamination, then I also want to breath clean air.  I especially do not want to re-breath air hacked out by a smoker.

Second hand cigarette smoke just really does not fit the image of a Publix grocery store either.  So I don't get it.  But I am not a 'normal' person.  I am a person living with 'disability' issues.  I suppose the only way to get things changed is to raise awareness.  If asking does not work, continue to raise awareness by blogging about it.

A 'No Parking' sign may be too obvious also.   So after the second hand smoke from Publix employees, I had to deal with a construction truck driver who decided to park on the way home sidewalk and probably had no idea how important a clear sidewalk was to a person in a wheelchair or on a bike.

It is hard enough to navigate the construction areas around Palm Coast Parkway.  No pedestrian access is provided through or around construction areas during the ongoing widening project of the roadway.  Yes, access was provided for automobiles but none for pedestrians or for those in wheelchairs or on bicycles.  I do not think this was an intentional oversight.  Rather I think 'normal' people just don't have any concept of what it is like to life of a physically or mentally challenged person.
Automobile drivers have little concept of what life without a car is like.  For those with a disability a sidewalk can make life doable.  When the sidewalk is blocked this presents a potential to fall or otherwise injure one's self.
So to most parking a truck on a side walk is no big deal.  But to me, carrying bags of groceries on my bike it is a big deal.  I have to slow, stop, dismount my bike (hard enough under normal conditions) and walk around the truck, hoping my Marfan weakened ankle doesn't give out or my bike turn sideways off the sidewalk edge, spilling the groceries across the grass.  To me it could actually cause physical injury.
One would think a large construction company would recognize the need for disability and pedestrian access around construction projects.
A 'No Parking' sign along the sidewalk would be way too obvious.

Sure, people without disabilities have to deal with these second hand smoke and blocked sidewalk-no pedestrian access issues too.  But they are not forced to do so.  They have the option of their automobile.  If I want to carry any amount of groceries home I need my bike.   The Publix bike rack is right in the middle of the employee smoke break section.  

So I will continue to write about these challenges and maybe someone out there with a child, brother or sister or friend who struggles with life's physical and mental challenges, someone who is also 'in charge' at a grocery store or construction company or other corporation of governmental entity might read this and say 'I can help make a change'.

It doesn't hurt to ask.  It does hurt to continue to have to breath second hand cigarette smoke or twist an ankle or break a leg trying to navigate an automobile-less world.

Speak up if you have a life challenge.  Awareness is the only way we can make the world a easier place for those of us today with disabilities and for subsequent generations.


Monday, October 20, 2014

My Mechanical Aortic Valve has Opened and Closed Over 100,000,000 Times!

Check out the quick video of my St. Jude Medical aortic valve!  Next month I will have had the device for three years (time has flown by).  At 60 beats per minute average the artificial aortic valve has opened and closed 100,000,000 times.  That is totally amazing.  I sure hope it keeps going!
video

Sunday, October 12, 2014

Heart Healthy Drinks - Lemongrass and Hibiscus Tea for Non-Processed Food Challenge Drinks

October has been the non-processed food diet month.  For twelve days now I have been only eating all organic fresh fruits, organic fresh vegetables organic-grass fed dairy, meats and fish.

Freshly harvested lemongrass in the dehydrator, heart healthy  herbs
Water has been my main liquid and I've been drinking lots of it, about three or four liters a day.

So today I decided to make some tea from the garden.  We have lots of lemongrass and Jamaican hibiscus (Roselle)  in the front yard (and in the side yards and in the back yard).
Lemongrass row planting in our front yard, heart healthy herbs
Lemongrass tea besides tasting wonderful provides a variety of health benefits.

Other favorite tea plants of mine include the Jamaican hibiscus, or Roselle and another garden perennial cranberry hibiscus, both offering healthy properties, including lots and lots of important Vitamin C.   Roselle calyces are used to make 'Red Zinger' tea and other island drinks, and since the tea has mildly diuretic properties it is good for blood pressure, kidneys and the heart in many instances.
Cranberry hibiscus, Hibiscus acetosella (L) and Roselle-Jamacian Hibiscus, H. sabdariffa (R) in our front yard

I usually clip a handful of lemongrass stalks, while picking about a cup of the hibiscus leaves and calyces and a handful of leaves.  After rinsing I place in a stainless pan with filtered water, bring to a boil and let simmer for an hour
Jamaican hibiscus & lemongrass tea for heart health - non-processed food challenge
After straining the tea I pour into a glass container and chill in the refrigerator.

For delicious variations try adding fresh ginger, key lime or lemon juice or cinnamon to your lemongrass-Jamacian hibiscus tea, and as always, check with your doctor before using any new herb or medicine.

Cheers!

Footnote:  Most fresh teas are much better for you than sweetened soda or colas, however always check with your doctor first, especially if you are taking medications or are pregnant.  In this case lemongrass (the phytochemical citral) contains compounds that encourage estrogen production while some studies have shown that roselle actually lowers estrogen levels.




Wednesday, October 1, 2014

Eating Organic and Non-Processed Foods for Heart Health (and Whole Body Health too!)

Updated to October 27, 2014

October 1 began the annual non-processed food challenge.  I've taken the pseudo contingent pledge of eating only organic, non-processed foods for a month.  Week One and Two are complete and the details are below.  Week Three is over and Week Four entering its last day.
Week Three Non-processed food challenge - herbal tea from green - lemongrass & roselle (no sugar  or dye)
WEEK FOUR - Updated to Day 27, October 27th (for Week One, Two & Three details see below)

Today ends week four.  I've followed the non-processed food guidelines for most of the month, with the exception of eating out a couple times in Tampa where I tried to eat non-processed from the menu but found most menu foods are processed to a high degree.

Day Twenty Two, October 22 
20141022 weight  176 pounds - estimate calories -  2000
  1. Blood Pressure & Pulse - 08:00 126/60 - 44; 
  2. Weight - AM - 176 pounds
  3. Breakfast - 2 cups of coffee, 1 boiled egg
  4. Lunch - small Coho salmon fillet & one medium portabello sautéed in coconut oil
  5. Dinner - organic ground beef, chopped peppers, onions and celery sautéed 
  6. Water - 3 liters
  7. Snacks -  almonds, dates & home dried organic apples with lime juice & cinnamon
  8. Estimated cost of food: $9
Day Twenty Three, October 23 
20141023 weight  176 pounds - estimate calories -  2000
  1. Blood Pressure & Pulse - 08:00 121/55 - 42; 
  2. Weight - AM - 176 pounds
  3. Breakfast - 2 cups of coffee, 1 boiled egg, dried apples, handful almonds
  4. Lunch - sliced avocado and boiled egg with almonds
  5. Dinner - organic chicken breast with broccoli and cauliflower
  6. Water - 3 liters
  7. Snacks -  almonds, dates & home dried organic apples with lime juice & cinnamon
  8. Estimated cost of food: $8
Day Twenty Four, October 24 
20141024 weight  176 pounds - estimate calories -  2000
  1. Blood Pressure & Pulse - 08:00 116/62 - 49; 
  2. Weight - AM - 176 pounds
  3. Breakfast - 2 cups of coffee, 1 boiled egg, apple
  4. Lunch - guacamole, nuts, sautéed root veggies & almonds
  5. Dinner - walnuts, steamed rutabaga & eggplant 
  6. Water - 3 liters
  7. Snacks -  almonds, dates & home dried organic apples with lime juice & cinnamon
  8. Estimated cost of food: $9
Day Twenty Five, October 25 
20141025 weight  176 pounds - estimate calories -  2000
  1. Blood Pressure & Pulse - 08:00 128/61 - 61; 
  2. Weight - AM - 176 pounds
  3. Breakfast - 2 cups of coffee, 1 boiled egg, dried apples 
  4. Lunch - section salmon fillet, sautéed kale, dates and dried apples
  5. Dinner - guacamole, almonds, dried apples
  6. Water - 2 liters
  7. Snacks -  1 cup almonds and cashews mixed
  8. Estimated cost of food: $8.50 
Day Twenty Six, October 26 
20141026 weight  176 pounds - estimate calories -  2000
  1. Blood Pressure & Pulse - 08:00 131/56 - 49; 
  2. Weight - AM - 176 pounds
  3. Breakfast - 2 cups of coffee, 1 boiled egg, dried apples 
  4. Lunch - one crab cake - homemade, dates and dried apples
  5. Dinner - 2 crab cakes - homemade (with coconut flour) guacamole, almonds, dried apples
  6. Water - 2 liters
  7. Snacks -  1 cup almonds and cashews mixed, dried apples
  8. Estimated cost of food: $11 
Day Twenty Seven, October 27 
20141027 weight  176 pounds - estimate calories -  2000
  1. Blood Pressure & Pulse - 08:00 117/59 - 54; 
  2. Weight - AM - 176 pounds
  3. Breakfast - 2 cups of coffee, 1 boiled egg, dried apples 
  4. Lunch - 2 crab cakes - homemade (with coconut flour) guacamole, almonds, dried apples
  5. Dinner - sautéed chicken with rutabaga and organic baby sweet potatoes
  6. Water - 2 liters
  7. Snacks -  almonds and dried apples
  8. Estimated cost of food: $8.50 
Day Twenty Eight, October 28 
20141028 weight  176 pounds - estimate calories -  
  1. Blood Pressure & Pulse - 
  2. Weight - AM -  pounds
  3. Breakfast - 
  4. Lunch - 
  5. Dinner - 
  6. Water - 
  7. Snacks -  
  8. Estimated cost of food: 
WEEK THREE 

Today begins week three of the non-processed food challenge.  Although I lost over five pounds in the first week, my weight began to increase towards the end of week two.  My waist line and observable ft was decreasing though while it seemed I was building more muscle.  Blood pressure had its up and downs, mainly downs as my body adjusted to the elimination of processed foods and intake of greater amounts of whole foods.

I am finding my diet includes lots of onions, avocados, fruits of all types, almonds, walnuts and other nuts (excluding peanuts).  I've been avoiding grains, sugar and anything in a box.  Water and herbal tea have been my main source of hydration.
Organic Kale & Portobello Mushrooms, Day 15, Non-processed food challenge
I really like this lifestyle and am already thinking in terms of how to sustain this way of eating for a longer period of time.

Day Fifteen, October 15 
20141015 weight  176 pounds - estimate calories -  1900
  1. Blood Pressure & Pulse - 08:00 135/60 - 42; 18:00 117/55 - 49
  2. Weight - AM - 176 pounds
  3. Breakfast - 2 cups of coffee, tomato & onion chopped over sliced avocado
  4. Lunch - 1/2 cup almonds, 2 cups organic juiced veggies
  5. Dinner - Chicken fajita stir fry with organic veggies 
  6. Water - 3 liters
  7. Snacks -  dates, grapes
  8. Estimated cost of food: $9
  9. Special Recipes: 

Non-processed food challenge, Week Two breakfast - boiled egg, fresh avocado & wild caught Coho salmon
I really like this lifestyle and am already thinking in terms of how to sustain this way of eating for a longer period of time.

Day Sixteen, October 16 
20141016 weight  176 pounds - estimate calories -  1950
  1. Blood Pressure & Pulse - 08:00 137/67 - 51; 18:00 112/59 48
  2. Weight - AM - 176 pounds
  3. Breakfast - 2 cups of coffee, boiled egg  & cup  of juiced veggies
  4. Lunch - 1/2 cup almonds, 1 cup fruit juice, 1 cup organic juiced veggies
  5. Dinner - guacamole & nuts
  6. Water - 3 liters
  7. Snacks -  6 dates
  8. Estimated cost of food: $9
  9. Special Recipes: 
Day Seventeen, October 17 
20141017 weight  176 pounds - estimate calories -  2000
  1. Blood Pressure & Pulse - 07:00 137/64 - 42; 16:00 121/59 - 49
  2. Weight - AM - 176 pounds
  3. Breakfast - 2 cups of coffee, handful of nuts, sliced avocado & chopped 1/2 sweet onion 
  4. Lunch - 1/2 cup almonds, 1 cup juiced organic veggies
  5. Dinner - 2 crab cakes (homemade) & one beef patty, cup veggie juice
  6. Water - 3 liters
  7. Snacks -  1 cup organic dark cherry juice, 1 cup juiced organic veggies
  8. Estimated cost of food: $10
  9. Special Recipes: 
Day Eighteen, October 18 
20141018 weight  176 pounds - estimate calories -  2500
  1. Blood Pressure & Pulse - not taken today -  out of town & forgot BP cuff
  2. Weight - AM - 176 pounds
  3. Breakfast - 2 cups of coffee, 1 cup veggie juice
  4. Lunch - Lunch at Longhorn with Jincy, Ruairi & Judy in Tampa.  I had grilled salmon (I am sure it was farm raised) over a lettuce and veggie salad.  Onion ring appetizer (yes! definitely processed)
  5. Dinner -  Thai dinner with Judy.  White rice (processed) steamed vegetables and squid.
  6. Water - 2 liters
  7. Snacks -  handfull almonds
  8. Estimated cost of food: $30
  9. Special Recipes: 
Day Nineteen, October 19 
20141019 weight  177 pounds - estimate calories -  2000
  1. Blood Pressure & Pulse - not taken today -  out of town & forgot BP cuff
  2. Weight - AM - 176 pounds
  3. Breakfast - 2 cups of coffee, 2 eggs scrambled and small amount of browned diced potatoes (I am sure these are not classified as totally non-processed)
  4. Lunch - 6 slices bacon, 3 eggs over medium (hungry) - small helping of white grits & gravy (definitely processed food) - breakfast at Cracker Barrel
  5. Dinner - sauté cut green beans, corn and almonds, 1 cup organic fruit juice & 1 cup organic veggie juice.
  6. Water - 2 liters
  7. Snacks -  almonds
  8. Estimated cost of food: $25
Day Twenty, October 20 
20141020 weight  177 pounds - estimate calories -  2000
  1. Blood Pressure & Pulse - 0500 120/61 - 43; 18:00 126/61 - 49 
  2. Weight - AM - 177 pounds
  3. Breakfast - 2 cups of coffee, 1 cup coconut juice, sausage and scrambled eggs
  4. Lunch - 1 boiled egg, 1 apple
  5. Dinner - almonds, boiled egg, celery & carrot sticks
  6. Water -  3 liters
  7. Snacks -  handful almonds, 4 dates, 5 pieces dried pineapple, 1/2 cup dried fruit while on my walk at the beach
  8. Estimated cost of food: $ 9
Day Twenty, October 21 
20141020 weight  176 pounds - estimate calories -  2000
  1. Blood Pressure & Pulse - 0600 120/60 - 49; 10:00 151/68 - 52 (at Kidney Doctor's office) 
  2. Weight - AM - 176 pounds
  3. Breakfast - 2 cups of coffee, 1 cup coconut juice, 1 boiled egg
  4. Lunch - cup of coffee and handful of almonds
  5. Dinner - sautéed corn, carrots and organic chicken sausage
  6. Water -  3 liters
  7. Snacks -  handful almonds, small package dried pumpkin seeds, 3 dates, 5 pieces dried pineapple
  8. Estimated cost of food: $ 8

I'd heard and suspected that traveling can really cause issues with any effort to eat non-processed foods.  Finding out first hand just how true this is was an enlightening experience this weekend as we visited our daughter at her out of town university campus.

Although I really tried to order and eat mostly non-processed foods, I allowed a little 'processed food' slip in here and there.

First of all there are not many if any non-processed food choices available on most restaurant menus.  Second, the food is usually not considered 'organic' and is probably heavily sprayed as a commercial commodity.

Thirdly, eating processed foods is expensive, especially when eating out.  At home I am eating much healthier foods for a third or less the cost.

There are quite a few interesting and informative websites describing how to successfully stay on a  non-processed foods diet while traveling.

I did add a couple pounds of weight over the weekend so I will be walking a little extra and watching my food intake this week to make sure I am feeding my body quality foods in amounts I need to live a healthy life and feel full.  I will also be drinking extra water to help flush out any excess sodium ingested with the restaurant foods.

WEEK TWO - (for Week One details see below)

Today begins week two of the non-processed food challenge.  Proudly I can say the first week went smoothly, with no processed food in my diet.  Yes, there are some real benefits I've found in a non-processed food diet.  Though I was not really trying to loose weight, the scales say I've gone from 178 lbs. on October 1 to 173 lbs. this morning.  My body type is typical marfanoid and my BMI is self adjusting to what my frame and muscles can truly support.

I have more energy and feel like my body is benefiting from the complete removal of processed foods.  Blood pressure has remained the same and my chronic connective tissue disorder challenges (like muscle pain and bleeding) remain the same though.

But I have really noticed improvements in my sleep!

Prior to embarking on the non-processed challenge I would wake two or three times a night, either to go to the bathroom or look at the clock.  Amazingly now I do not wake up at all.  In fact yesterday I slept through two alarms, something I have never done in all my life.  I think this deep, uninterrupted sleep is allowing my body to refresh itself to a level I have not seen since I was a youth.

Previously I would just tell myself before I went to sleep what time I wanted to wake up.  Presto, almost to the minute I would sit straight up in bed, wide eyed and heart pounding.  Additionally, the slightest sound in the house and I would be repeating the same wake up routine.

The last four or so night's sleep has been totally different.  I feel like I am sinking into a firm but cushioned bed of comfortable feather mattresses, and my breathing reaches deep, deep slow intentional levels.  I have found Zen sleep with this new way of eating.

There are plenty of articles across the web pointing to the presumption that sleep quality is a direct function of diet.  Junk processed food apparently ranks high on the list of causes for insomnia.

So with excitement and enthusiasm I am ready for Week Two!

Day Eight, October 8, feeling refreshed despite the everyday chronic dissection, AFib and Marfan issues
20141008 weight 173.0 pounds - estimate calories -  1700
  1. Blood Pressure & Pulse - 08:00  113/61 - 49;  15:45 87/48 - 52; 21:00 90/52 - 56
  2. Weight - AM - 173.0 lbs
  3. Breakfast - 2 cups coffee, a boiled egg, sliced avocado and slice of Coho Salmon fillet
  4. Lunch - slice Coho fillet, 1/2 avocado, 1/2 boiled egg, 3 dates
  5. Dinner - yo como un burrito sin tortilla - carne organica, cebolla y pimiento y salsa verde, uvas verdes tambien (Burritos without the tortilla wrap & grapes)
  6. Water - 2 liters
  7. Snacks -  small piece of organic dark chocolate, organic coconut milk
  8. Estimated cost of food: $10
  9. Special Recipes: 
Food for the next couple days:

Non-processed food challenge, ingredients for fresh sliced bacon BLT without bread 

Non-processed food challenge - protein for at least three or four days, fresh cut shark

Non-processed food challenge - sweet carbs!
Day Nine, October 9 
20141009 weight  174 pounds - estimate calories -  1800
  1. Blood Pressure & Pulse - 08:00 110/59 - 49
  2. Weight - AM - 174 pounds
  3. Breakfast - 2 cups of coffee, boiled egg, grapes, apple & slice of salmon fillet
  4. Lunch - avocado, chopped onion-ginger-garlic with tomato, almonds
  5. Dinner - guacamole, walnuts, boiled egg
  6. Water - 3 liters
  7. Snacks -  13 dates, orange
  8. Estimated cost of food: $8
  9. Special Recipes: 
Day Ten, October 10, feeling light-headed today, almost passed out several times - think the supplement CoQ10 is lowering my blood pressure too much - it dropped into the mid eighties systolic and forties diastolic yesterday - laying off CoQ10 today to see if it makes a difference.  Lots of literature across the web suggest CoQ10 can lower blood pressure and caution against taking the supplement with  other medications.


Day Ten, October 10
20141010 weight 174.0 pounds - estimate calories - 1900
  1. Blood Pressure & Pulse - 08:00  105/55 - 49;  11:45 91/49 - 60;
  2. Weight - AM - 174.0 lbs
  3. Breakfast - 2 cups coffee, a boiled egg, sliced avocado and onions
  4. Lunch - chopped organic onion, tomato & avocado with organic lime juice
  5. Dinner - blackened fresh shark sautéed with ginger slices, green and chili peppers, fresh thyme, roselle calyces & cranberry sorrel leaves
  6. Water -  3 liters
  7. Snacks -  10 dates
  8. Estimated cost of food: $9
  9. Special Recipes: 


Day 10 Non-Processed Food Commitment, chopped organic onion, avocado & tomato
Non-Processed Food Day 10, herbs and spices from the garden for the shark steak
Non-Processed Food Commitment, Day 10 - fresh shark steak sautéed with sliced ginger, chilies, thyme, roselle calyces & cranberry hibiscus leaves 
Non-processed food challenge - Day 11 - fresh cut lemongrass drying for tea


Day Eleven, October 11, still feeling light-headed.  Am wondering if the total elimination of processed food for eleven days has had a profound effect on my blood pressure.  Normally my BP runs 110/55 with a pulse of between 48 and 54.  The last couple days systolic readings have been in the upper 80s and diastolic in the upper 40s.

I thought it might be the CoQ10 so I discontinued that supplement for the past two days.

It makes sense that a non-processed food diet could lower BP to normal levels.  The medication I've been taking could be responsible for dropping it to the 80/50 levels from the now otherwise normal pressures achieved with the non-processed foods.  I'll be keeping a watch on the readings and coordinating with all my doctors.

Weight has leveled off at 174.0 lbs.

Day Eleven, October 11
20141011 weight 174.0 pounds - estimate calories -  1900
  1. Blood Pressure & Pulse - 08:00  90/52 - 56; 13:00 95/57 - 52
  2. Weight - AM - 174.0 lbs
  3. Breakfast - 2 cups coffee, sliced avocado, tomato and onions
  4. Lunch - chopped organic onion, tomato & avocado with organic lime juice, slice of shark fillet
  5. Dinner - small slice shark fillet, fresh fruits & veggies (carrots & celery)
  6. Water -   3 liters
  7. Snacks -  couple handfuls of pistachios and almonds, 7 dates
  8. Estimated cost of food: $9
  9. Special Recipes: lots of fruits & veggies
Blood pressure almost back up to normal - drinking lots of water, added a little salt to my food.

Day Twelve, October 12
20141012 weight 174.0 pounds - estimate calories -  2300
  1. Blood Pressure & Pulse - 08:00  105/56 - 44; 11:30 105/63 - 42 
  2. Weight - AM - 174.0 lbs
  3. Breakfast - 2 cups coffee, sliced carrots & celery
  4. Lunch - chicken & beef fajitas with onion, peppers, tomatoes
  5. Dinner - leftover from lunch - fajitas and veggies
  6. Water -  3  liters
  7. Snacks -  homemade almond flour & dried fruit bars, 4 dates
  8. Estimated cost of food: $10
  9. Special Recipes: healthy-Tex-Mex with family over to visit
Day Thirteen, October 13
20141013 weight 175.5 pounds - estimate calories -  1800
  1. Blood Pressure & Pulse - 08:00  106/51 - 49; noon- 98/61 - 42 
  2. Weight - AM - 175.5 lbs
  3. Breakfast - boiled egg, sliced avocado & minced garlic, 1 cup organic carrot juice
  4. Lunch - sliced bell pepper, boiled egg, 
  5. Dinner - Publix Greenwise no hormone chicken, stir fry with veggies
  6. Water -  3  liters
  7. Snacks -  6 dates, handfull almonds, 2 glasses lemongrass tea
  8. Estimated cost of food: $9
  9. Special Recipes: 
Rode bike and did PT stretching - shoulder muscle/hematoma area still very sore and tender.  Blood pressure average; been drinking more water.

End of Week Two
Day Fourteen , October 14
20141014 weight 175.5 pounds - estimate calories - 1700
  1. Blood Pressure & Pulse - 08:00  131/69 - 73; 13:00- 113/55 - 47 
  2. Weight - AM - 175.0 lbs
  3. Breakfast - boiled egg, sliced avocado & minced garlic, 1 cup organic coconut milk
  4. Lunch - sliced bell pepper, boiled egg, can of sardines in olive oil (slight cheat)
  5. Dinner - slice shark fillet, apple, orange, handful of almonds 
  6. Water -  3  liters
  7. Snacks -  handfull dates
  8. Estimated cost of food: $8
  9. Special Recipes: 

WEEK ONE - Updated through Day 7

Eating non-processed & organic for a month for health

I will update this post daily as to diet, blood pressure, pulse, weight and physical therapy.

Steve G got me started doing this back a while with Paleo and Primal eating approaches anyhow, so it shouldn't be too hard to do.  Maybe.  Unfortunately when I wake up with a pulse of 49 (zombie status) I feel the need to find cards in the refrigerator, looking for an energy 'boost'.

But processed carbs, even oatmeal, vegetable or fruit juice send my insulin soaring and though I am 'OK' for thirty minutes the crash follows quickly.  My pulse either bottoms out in the upper thirties or roars sky high into the 130s or 140s.   Hopefully there will be some useful information coming out of this effort.
zombie - like pulse rate is typical for me

Let's begin and happy non-processed eating!  Oh, BTW, I told my teen son Ruairi last night we'd be on the non-processed food diet for a month and he just rolled his eyes and smiled.

20141001 weight 178.0 pounds - estimate calories - 1500

  1. Blood Pressure & Pulse - 07:00  111/58 - 49
  2. Weight - AM - 178 lbs
  3. Breakfast - 2 cups coffee, a boiled egg, carrot
  4. Lunch - Mako Shark fresh fillet
  5. Dinner - homemade guacamole & handful of almonds, boiled egg
  6. Water - 2 liters
  7. Snacks - 1 cup raw coconut, three organic carrots
  8. Estimated cost of food: $10
  9. Special Recipes:
Non-processed food challenge - Fresh Mako with Ginger, Garlic & Cilantro, Day One
The first day went pretty well.  I really enjoyed the Mako fillet, blackened on a very hot cast iron skillet with fresh cilantro, garlic and ginger, and tasting like swordfish.  I felt like a powerful shark swimming in the endless ocean as I ate the great fish.  The carrots and coconut are always refreshing and full of energy!
Fresh Mako for Non-Processed Food Challenge
Day Two, October 2, feeling refreshed despite the everyday chronic dissection, AFib and Marfan issues

20141002 weight 177.0 pounds - estimate calories -  1500
  1. Blood Pressure & Pulse - 07:00  121/67 - 45;  09:00 - 147/77 - 42;  9:15 am 109/55 - 48; 9:30 pm 98/49 - 46
  2. Weight - AM - 177 lbs
  3. Breakfast - 2 cups coffee, a boiled egg, star fruit
  4. Lunch - sorrel leaf & calyx salad with almonds, fresh guacamole and star fruit with ginger & garlic
  5. Dinner - guacamole & almonds again, another boiled egg
  6. Water - 2 liters
  7. Snacks - blueberries
  8. Estimated cost of food: $6-$7
  9. Special Recipes: homemade salad from the garden - it was actually quite delicious
Day two has passed and we are into day three of the non-processed food month!  Yesterday I had a marvelous salad from scratch including; fresh sorrel leaves and calyx (Jamaican and cranberry) from the garden (thank you Judy).  
Day two non-processed food lunch, sorrel, almond, guac salad with star fruit
I've already lost one and a half pounds and it is only day three.  Blood pressure and pulse are holding steady.

Day Three, October 3.  Still feeling refreshed besides the chronic fatigue I am normally accustomed to. Today  I have Coho salmon in the skillet and eggs boiling.  Fresh fruits and veggies await also. I always hope the omega-3s from the fish will help heal my remaining aortic dissection.  I know for sure though the fish tastes wonderful!

20141003 weight 176.0 pounds - estimated calories - 1500
  1. Blood Pressure & Pulse - 06:00 am 117/53 - 47; 18:00 
  2. Weight - AM - 176 lbs
  3. Breakfast - 2 cups coffee, a boiled egg, blueberries
  4. Lunch - Coho salmon fillet, handfull spinach greens
  5. Dinner - boiled egg, more Coho, broccoli 
  6. Water - 2 liters +
  7. Snacks - blueberries
  8. Estimated cost of food: $8
  9. Special Recipes: 
Coho salmon with garlic & ginger, day Three non-processed food challenge
Day Four, October 4.  I start craving sweets yesterday!  Perhaps because I'd just about eliminated most sugars over the past couple days.  My body was in fat burning mode.  But I was really in the mood for something sweet.  Ruairi suggested Oreos but those cookies would have bloom my non-processed food attempt way too soon.

So I made my own non-processed dried fruit Num Nums.

No recipe was followed, I just mixed together what sounded good, including; one cup of almond flour, one cup coconut flour, a half cup raisins, a half cup chopped cherries, ten chopped dates, two eggs, spoon of ground cinnamon, handful of chopped ginger, spoon dried turmeric and about half cup of grape seed  oil.  Mix.

Bake cookies on baking sheet at 375 for twenty minutes.  They are't really overly sweet, more like a healthy, dried fruit sweetened energy bar.  But they are hard to put down.
Kevin's dried fruit, almond & coconut flour Num Nums - non-processed food challenge & Paleo snack
I'll be eating fresh veggies and the last of the salmon today.  All of a sudden my body feels less polluted from bagged and boxed up, factory processed with who knows what kind of chemicals, food.

20141004 weight 175.5 pounds - estimated calories - 1500
  1. Blood Pressure & Pulse - 05:00 am 111/55 - 48; 21:00 (pm) 108/52 - 49
  2. Weight - AM - 175.5 lbs
  3. Breakfast - 2 cups coffee, three dried fruit and almond/coconut flour Num Nums, boiled egg
  4. Lunch - Finished salmon fillets, made fresh guacamole, almonds, num nums, apple
  5. Dinner - tired - just walked a bit, not really hungry - ate small bowl guacamole & onions
  6. Water - 3 liters
  7. Snacks - num nums, coconut milk (small glass), apple
  8. Estimated cost of food: $8
  9. Special Recipes: mostly leftovers today :)
Day Five  of the non-processed food challenge!  Finished up most of my leftovers yesterday.  We will see what today brings.  My appetite has actually decreased a little.  The num nuns are such an excellent snack.  All it takes is eating one to be filled up as the almond flour is very filling (VERY FILLING).  Seems like I am dropping about a half pound a day.  This is strange because my diet before did not have much processed foods in it though lately I had been eating little sweetened yogurts and even a slice of pizza or two with my son.  Hope your Day Five is great!

20141005 weight 174.5 pounds - estimated calories - 1400
  1. Blood Pressure & Pulse - 07:00 am 116/58 - 52; 19:00 pm 109/61 - 49
  2. Weight - AM - 174.5 lbs
  3. Breakfast - 2 cups coffee, two dried fruit and almond/coconut flour Num Nums, boiled egg
  4. Lunch -  cabbage-carrot-spinach stir fry with sesame oil (yummy)
  5. Dinner -  guacamole and almonds
  6. Water - 2 liters
  7. Snacks - num nums, afternoon iced coffee, small spoon ikura
  8. Estimated cost of food: $7
  9. Special Recipes: 
Non-processed food challenge, Day Five lunch, cabbage-carrot-spinach stir fry
Day Six - Going on a week now and still doing fine on the non-processed food diet.  I've successfully passed up a Firehouse sub (hard for me!), Taco Bell junk food my son was craving and packaged food from the grocery store.  Today I've fixed fresh avocado and wild caught shrimp with cilantro as my main meal.  Boiled eggs, fruit and nuts will round out my daily spread.

20141006 weight 173.8 pounds - estimated calories - 1500
  1. Blood Pressure & Pulse - 07:00 am 119/58 - 49; 
  2. Weight - AM - 173.8 lbs
  3. Breakfast - 2 cups coffee, almonds & boiled egg
  4. Lunch -  wild caught shrimp and fresh avocado
  5. Dinner - handful of nuts, star fruit ( I was not too hungry)
  6. Water - 2 liters
  7. Snacks - apple, avocado
  8. Estimated cost of food: $9
  9. Special Recipes: 
Non-processed food challenge - Day Six lunch, shrimp, avocado and cilantro

Day Seven, October 7, end of a successful Week One going non-processed diet! I have lost five pounds, though I am not going hungry or trying to loose weight.  I prefer to think my body is adjusting my BMI Index to where I should be on a natural foods diet.  I had been sleeping much harder and feel more rested in the morning.  In fact, this morning I slept through two alarms - something I have never done in my entire life.  I think maybe the processed foods may have been interfering with my sleep? IDK, but will keep track of the non-processed diet and sleeping patterns.

20141007 weight 173.5 pounds - estimate calories -  1600
  1. Blood Pressure & Pulse - 08:00  116/69 - 52;  11:00 - 97/55 - 47;  21:00 98/57 - 49
  2. Weight - AM - 173.5 lbs
  3. Breakfast - 2 cups coffee, a boiled egg, star fruit
  4. Lunch -  avocado, 1 cup almonds, star fruit
  5. Dinner - avocado, 1 cup almonds, boiled egg
  6. Water - 2 liters
  7. Snacks - 1 cup blueberries
  8. Estimated cost of food: $6
  9. Special Recipes: 

Sunday, September 28, 2014

It's What They Don't Tell You That Matters Just As Much As What They Tell You; Uncertainty and Chronic Illness

When I know I am usually ok.  When I don't know I am all stressed out and usually not ok.  This applies to many life situations but especially to chronic illness challenges.
My Tweet About Not Being Afforded Access To My Prescription

For instance, the other day I went to the pharmacy to pick up my Coumdain (warfarin) and other prescription medication refills like I always do and have always done for the past three years.  When I arrived at the pharmacy counter the normally very communicative and courteous clerk was a little busier than normal.  I am a patient person so I waited.  When she handed me my medications, the warfarin was not included.

I methodically looked through the plastic bottles each filled with pills and repeated out loud what I was thinking. "Metoprolol, Losartan, Lipitor," and paused.  "What about the warfarin?" I asked.

The pharmacy technician was already back to her table working on another order.  She turned quickly and replied, "Oh, they won't allow me to refill the warfarin until the 30th, they won't let me do it."

Right then and there I should have taken the initiative and asked, "Who is 'they'?"  I should have made it very clear that I needed my warfarin to stay alive because of my artificial heart parts.

But in the moment, with lots of people standing around, her being so busy and my own most unuseful habit of having a 'compliant' attitude with authority figures like doctors, officials and pharmacists, well I just said 'OK', turned and left.  My stomach was becoming tightly knotted.  I wanted to hop on my bicycle and return quickly to the safety of my house and figure out a solution to this cluster mess of not having an important medication.

I hate stress and stress causes me lots of physical issues, especially those relating to my heart.  I was  stressed.  I did not get my warfarin like I should have.  Somewhere out there in America's health care complexity someone or some computer program algorithm said 'Kevin has to wait until the 30th for his warfarin refill'.  The 30th was seven days away.  I had three days of warfarin left.  That meant I would be out of the medication that keeps clots from forming on my heart valve.  I could stroke out.  I probably would stroke out.  I could or would die.  I did not know what was going to happen but I knew it was going to probably be bad.  More totally unnecessary stress.

So I tweeted out to the world my frustration.  After all I had a year's worth of refills and had never been denied before.  More importantly I had a family to care for and I was NOT going to roll over and die because some stupid clerk in a swivel chair in front of a computer somewhere out in health care space had decided to not issue approval for my medicine.

If I couldn't get the warfarin and a clot did form on my valve and I 'stroked' out then someone would pay.  I wanted to make this clear to the pharmacy.

Then a thought popped into my head.  Had I been my old, pre-dissection self I would have caught this right away.  Unfortunately, as I have blogged many times about before, my time during open-heart surgery on the heart-lung machine has given me 'pump head' syndrome.

Quickly, for those of you like me who can not remember a whole lot, 'pump head' is a condition where the heart-lung pump system allowed small air bubbles or particles to enter the brain blood vessels causing blockages and resulting in cognitive issues, like memory loss and confusion.

In pre-dissection days my lawyer training would have prompted me to right away ask, 'Who is 'they'?"  But it was only after coming home and stressfully pondering the entire medication situation thing that I realized I never was told who 'they' was.  I wanted a face or a name associated with the 'they' that was potentially going to decide if I lived or died.

I was going to take 'they' to task about my refill.

The 'they' issue has always been one of my OCD issues.  Ask my wife and teens.  I would always ask 'who is they?' when the family would use the word in a sentence.  A distaste for ambiguity is a common trait among lawyers.

Unfortunately, I am not as quick as I used to be - then again this slower purposefulness may be good too because it has made me less intense and aggressive. But I digress.

So a quick phone call to the pharmacy was made and I explained how I was very worried I might stroke out, yadadada…  "Tell me please, who is the 'they' that would not allow my warfarin refill?" I asked the just as now as me confused pharmacist.

Fingers taps on the computer keyboard dominated the momentary silence over the phone as she searched my records.

"The 'they' is your medicare insurance company, Humana," she replied.  "Humana won't pay for your refill until next week. But we can refill your prescription under our four dollar program as we did before your medicare began" she continued. "Would you like me go ahead and refill for four dollars?"

I breathed a huge sigh of relief.  I could get my warfarin.  I was not going to stroke out.  I would live!

Then the anger overwhelmed me.  I wanted to shout, "Hell, Yes! It is only four dollars versus two dollars!"  Pause.  Deep breath.  Instead I calmly thanked her so very much for solving the problem, and tweeted…
The 'Thank You For Refilling my Warfarin' tweet
If only the busy pharmacy tech had just told me what the busy pharmacy tech had not told me.  Instead of saying "they won't allow me to refill your warfarin', the busy pharmacy tech could have said "your present insurance carrier won't allow the warfarin refill for another week, but we can refill under your old method of buying warfarin since you have a valid, up to date prescription with refills."  Problem would have been solved.

Partial statements that are technically correct but offer incomplete information are extremely dangerous to patients in today's health care business.

Unfortunately the pharmacy debacle has not been the only recent 'it's not what they said but what they did not say' challenge.

As I have been blogging about recently, something inside my body tore and I really bled a whole, whole lot of blood which pooled about my waist.  The emergency room doctor informed me I had a 'hematoma' and she gave me some pre-printed literature with her comments added. "rest arms and shoulders.  Apply ice pack 4-5x daily for 20 minutes @ a time".  She said loud and clear "You have a hematoma.  I would like you to rest your arms and shoulders and apply an ice pack four to five times daily."

The literature was lengthy with lists of finer sized print.  I incorrectly assumed the most important information was what was highlight bold in large test - the "rest arms and shoulders.  Apply ice pack 4-5x daily for 20 minutes @ a time" statement.

So I came home and for a week applied cold ice packs to my grapefruit sized hematoma as instructed.  I did read the rest of the literature but as soon as I set the papers down I pretty much forgot what I had read (the pump head issue).

After a week of cold applications and no shrinkage in size of the hematoma I was worrying and stressed.  The bleeding had mostly stopped and the large bruise was going down in size slowly but the lump was still on my shoulder blade.

Then yesterday my home health care nurse came by for a surprise visit.  Ted and I became good friends after my initial dissection recovery and subsequent episode with endocarditis.  He is the one who made me go to the hospital when my chest began to swell with infection after the first open heart surgery.  I value Ted's practical experience based opinions.

We talked about yams and football and then I shared my recent hematoma experience.

"How are you treating the contusion?" he asked.

"With an ice pack," I replied and pulled out the cold blue sack of frozen liquid from between me and my recliner.

"Just ice?"

"Yes, that is what the emergency room doctor told me to do."

Ted sighed. "Kevin….never mind" he said and continued, shaking his head.  "Do what the doctor told you to do."

I could read his body language and knew he would never recommend anything contrary to a doctor's orders.  "OK Ted, you were right about my endocarditis when the physician's office was incorrect, so tell me what you think."

"Well, I usually like to treat a contusion with warmth and heat.  Cold alone will constrict the capillaries and prevent dispersion of built up fluid.  Cold also can damage the nerves."

I shook my head.  "That makes sense."

"Try alternating a hot pad and then cold.  Heat will improve circulation in the area, improve circulation and move the fluid build up."

Over the past twenty four hours I have applied both heat and cold, alternatively and the hematoma has
shrunk considerably.  Intrigued, I went back and looked at the discharge papers I'd received from the emergency room visit.  The "rest arms and shoulders.  Apply ice pack 4-5x daily for 20 minutes @ a time" was very visible.  I also clearly remembered the doctor telling me this.  She never mentioned heat.

Yet buried in the finer print was a few words about using heat too.  The doctor had never said this to me though.

And so it really is what 'they' don't tell you that matters just as much as what 'they' do tell you.

Sometimes I expect too much from others, especially being in the disabled condition I am in.

But in the future I am going to try to listen to all the words 'they' say.  And I am also going to listen to all the words 'they' don't say.

If I don't forget to.