A Marfan Easter In The Children's Memorial Garden

Marfan Syndrome Family Easter in the Children's Memorial Garden

Easter morning was wet, cool and drizzly.  We tried the sunrise service at Flagler Beach but the sight of the bright, easter-egg colored panties under the dresses of the ladies singing church songs and shaking tambourines, being blown up over their heads by the thirty mile and hour ocean winds scooting across the stage in the park, was not what I was looking for.  Give me a hot, black cup of coffee instead.

Easter Sunrise Service, Downtown Flagler Beach

So we went and had breakfast on the pier across the street, overlooking the Atlantic Ocean.  I love the big pond, a metaphor of eternity to me, much like the sky.

Flagler Beach and the Big Salty Pond

Sometimes I wonder if eternity flies by as fast as time here as we know it flies by.  Seems like I was just starting college last month, but it has been forty years.  I still haven't really figured out any of the answers.

The last year and a half has been a challenge in many ways for our family.  I wake every day to the same and new, different challenges with Marfan Syndrome problems, but bottom-line grateful I awoke.  Because I have finally realized life is so precious and tenuous I offer up a prayer of thanks and beseeching every night before I fall asleep.  If the night is to be my last I want to go out in a thankful mood.

Judy has been fighting her auto-immune inflammation and hopefully may have found some relief with an older acupuncturist here in Palm Coast.  Jincy and Ruairi forge ahead with school and social activities, and with all the competition in school I worry about their dilated aortas.  On an aside note, I do not understand why the State of Florida and Governor Rick Scott have upped the SAT and ACT score requirements form high to nearly impossible for Bright Futures Scholarships, without an exception for children also battling a disability challenge.  Jincy has over a 4.5 GPA and Ruairi a 4.7 GPA (A=4.0) because of they study so hard and do so much extra credit work.  Teens that work that hard, with grades that good all the while battling disabilities should have access to the state's lottery money supposedly dedicated to education.

Jincy and Ruairi have their own Marfan Syndrome Challenges, but they forge ahead, unstoppable-like

Jincy has a really good deal at the University of South Florida in Tampa which she has accepted, and I am grateful for her hard work.

Seems like the two teens time in high school just started yesterday, too.  And the grandchildren teens (son and daughter of Judy's second oldest daughter who recently had a serious brain aneurysm) Dylan and Dharma have been here six months in May.  Yes, time flies.

A year and a half has also passed since baby Heidi (Judy's daughter Leslie's baby girl) died.  Leslie and her husband still struggle with so much grief.  Shortly thereafter I hung a set of wind chimes on a beautiful scrub live oak in the Children's Memorial Garden overlooking the intracoastal waterway.  The memorial garden is full of wind chimes placed there by others in a child's memory.

Children's Memorial Garden Overlooking Florida's Intracoastal Waterway, Live Oak Nestled

The wind along the intracoastal is not as strong and brisk as the ocean front wind but still steady enough to keep all of the beautiful sounding wind chimes singing most of the time.  If I was a spirit child, I would go to that salty riverside place just to listen to the jingles and bells and wind softly blow.  As an old man, I also like to go there to talk to angels woven throughout the misty salt air.

But not only are there beautiful melodies sounding of a child's choir in the air, the garden is full of beautiful colors and textures, art and nature combined together in love.

Heidi's New Wind Chime is tied next to her Frog Chime in the Memorial Garden

Heidi's wind chime was showing signs of wear from the breezes and I wanted to get the four teens out of the house and into nature for their daily vitamin D dose.  I'd found a really cool dragonfly chine with just one dangle and figured it was just the chime to attach next to Heidi's original chime.

The four teens and I talked about thankfulness, remembrance, love, kindness, memories and a bunch of other esoteric topics I can't remember now, on the way to the intracoastal.  We also talked about baby Heidi and her parents and her brother.  I reached up and held the two silver hearts hanging on my medical ID necklace, hearts from my Mom.

The four teens, Dylan (Grandson 16), Marfan teens Ruairi & Ruairi (16 & almost 18) and Dharma  (Granddaughter 14)

One thing I don't want flying time to do is allow us to forget.

The teens and I enjoyed out time in the children's memorial garden.  We listened to the chimes.  They stopped and read all of the little memorial stones, pavers and bricks placed throughout the special nature walk.  They even reached up to dab a corner of their eyes when they though no one was looking.

Heidi has two wind chimes now.  Her frog wind chime is still there.  And someone else has placed a big green tree frog on an adjacent limb to look after Heidi's smaller frog chime.

New Big Florida Green Tree Watching Over Heidi's Smaller Green Frog Chime, Down By The Riverside 

And there is a beautiful red star in the next tree over.

Stars in the Scrub Live Oaks

As we left I looked down to my right.  Lovely easter eggs for the children here.

I think, despite my challenged cognitive state and memory, I think I will come back here more often.  There is much to learn from a special place full of native plants, overlooking the edge of an eternal ocean and full of children's twinkling and chiming voices, especially for an old man like me.

Easter Eggs for the Children in The Memorial Garden down by the Intracoastal Waters

Amazing Power of Marfan Teenagers and Their 'Sibs'

I need to give the two marfan teens and their nephew and niece more credit.  At 14, 16, 16 and almost 18 years old I sometimes think they are still little kids and treat them that way.

Raising four teenagers is a challenge, but they can almost raise themselves now.

Unfortunately my desire to remain 'in control' prevents me from enjoying a clean kitchen, spotless house and a chore-less life.  Yeah, I know I still have to be the boss but the past couple days I've made an important discovery - teenagers can actually be an amazing group of humans!

Judy is off to Ocala to help Melissa with the birth of Jack, our 6th grandchild I think. Yikes!  My memory is so iffy.

When I met Judy she was in proprietorship of Sesha, Kyndra, Melissa, Leslie, Laura and Adam.  We then had Jincy and Ruairi together.

Kyndra's two children, Dylan and Dharma are 16 and 14.  Their mum is now challenged with the after effects of a serious cerebral bleeding episode and while she is doing physical therapy her two are living with Judy and I.

They think they'd rather play video games but enjoy the beach if I make them go...

Time out - I have to go holler through the bathroom door to tell one of them to not allow the water in the sink to continually run full blast while they brush their teeth.  Ok, they are "somewhat" pretty amazing.

The kitchen has been another issue, keeping the sink free of piles of dishes has in the past been difficult when 'Nana' off and about.  In the past when Judy was gone I would try and keep order via demands, orders and ultimatums.  'Don't do this' and 'don't do that' were my kitchen mantras.  But the sink would still pile up with dishes.  It was so frustrating!  Last thing I need with a dissected aorta is stress, right?

After repeated failures at being a successful kitchen dictator I thought I'd try something new this time.  Maybe I'd treat them like almost adults instead of little kids.

So I said as Judy left something like, "OK now you are the grownups in the house.   You are in charge of the kitchen and bathroom.  You figure out what to cook, when and clean up afterwards.  I don't care anymore."  The last sentence was a spiteful unnecessary bard said out of needless anxiety.

Three days now and I am wondering why I didn't ever think of this before.  The kitchen has stayed spotless, they have had fun cooking what they want and laughed and sang to stupid teenager songs while cleaning up after themselves.

All they needed was a little freedom and a chance to act better than many grown ups I know.

Jincy and Ruairi are challenged with many trials.  They both fight slightly enlarged aortas with lifestyle modification.  They both push themselves in school (Jincy is graduating with her AA degree because she dual enrolled in college while a junior and senior in high school) and they have to deal with me.  Jincy is my true secret weapon though.  Turn her loose as commander in chief of chores, laundry, trash and food decisions and the other three say "yes, mam!'  No one, especially younger teens, messes with a tall, imposing and almost 18 year old female.

Dyland and Dharma are worried about their mum and miss being at home.  They both, too, are doing very well in school.  I suspect as a child I would have crashed mentally without my parents.   And Jincy is moving away next month so their support system found in an older 'sib' will be gone.  Yes, they are amazing.  But they really need their mom.  Even though grandparents can be nurturing, life without a parent is so different.  Incredibly though, they are not only a pleasure to have living here, they also contribute so much quality themselves to the unique texture of our patch-work family.

So all the worry about scrubbing piles of dishes was a self-fulfilling prophecy in the before.  When I worried about it and paced the kitchen floor asking to see identification if anyone entered, the whole kitchen thing was an ordeal.

Now, well I told Judy over the phone that the kitchen is actually cleaner than I could keep it in my floppy heart condition.  And the kids are storing leftovers and budgeting food, sharing equally between them.  And they are laughing instead of sulking past my kitchen patrol duty.

Wow.  Just when I think I know it all.  Dylan and Ruairi are headed out the door now to catch the school bus.  I'll never know just how they make it down to the end of the street in two minutes but they always do.  I'd take me an hour to hobble that far.

Dylan just turned and said, "bye, Papa K.  I love you."

At 57, I still get a tear in the corner of my eye sometimes.

For Marfan Challenged a Clean Razor Can Save Your Life!

Marfan health tip of the day - use clean razors!

For Marfan Syndrome challenged, an infection can be deadly - always use clean razors!

As someone who knows first hand use how bad a case of endocarditis can be, I am always looking for ways to prevent any instance of infection.  If you've not read my posts about how horrible a heart coated in green fungal slime can be, read here.

An infection, anywhere on the body, can enter the blood stream and impact the heart, causing dangerous inflammation.  Inflammation can cause vascular damage in anyone, but especially in those of us with connective tissue disorders like Marfan Syndrome.

Skin infections can quickly reach the heart through a cut or scrape.  Once the cardiovascular system becomes infected and inflamed, this condition can produce deadly results.

Infective endocarditis is especially dangerous for those with prosthetic heart devices such as the mechanical aortic valve in my heart and the Dacron graft across my ascending aorta.

There are many web resources pointing out the importance of using clean razors.  Like dental work, shaving impacts parts of the body close to the heart such as the face, head, arm pits or chest.  MRSA, methicillin resistant Staphylococcus aureus and other infectious diseases can be spread through the use of dirty razors.  The CDC Center for Disease Control and Prevention recommends across their web site resource pages that razors be not shared but be clean and stored dry before and between uses.

SImple little good health and hygiene practices can spare one from a very painful, even deadly episode of heart infection.

Marfan Eye Haiku

Walking through Princess Place Preserve the other day I kept rubbing my eyes, seeing the usual bright purple flashes but with a much higher frequency.  Stopping for a moment I quickly noticed the flashes were really violets, new spring violets.  And so here is another haiku.

bright purple flashes

no retina detaching but

marfan violet's show

---

viola palmata, early blue violets

princess place preserve

Living with a Dissected Aorta and Marfan Syndrome, March 2014 Update

Wow, time flies.  It is March 2014 already.  Here are a few updates on my dissection challenge:

One question for my PCP will be - why does my right foot continue to grow while my left foot is shrinking?

• I have all my Medicare paperwork now and the coverage will kick in on May 1, 2014 - just a little over 7 weeks away.  First time I will have had any insurance since my dissection hospitalization!!!  The two year Medicare waiting period is almost over!  I survived (so far)!
• With Medicare in hand I will be scheduling a visit to the cardiologist for my annual CT scan and echocardiograms to see if my aorta is either continuing to aneuryze or is staying the same diameter.  Of course, I am very anxious about these updates and will post the news as soon as I find out.
• I have been having my INR checked once every month, paying for it out of pocket at our local lab.  I am taking 5mg warfarin daily and last time I checked the INR was 2.2.  Fresh garden greens make up a large part of my diet so I can lower or increase INR with the amount of Vitamin K rich greens I consume.  This is easier than adjusting tablet dosage - break one in half, skip a day, yada yada.  My PCP comes up with such complicated formulas.  I've yet to tell her that I am just doing 5mg daily.  This is enough of a challenge for me as it is with my additional memory struggles.
• I do have a list of questions/comments for my PCP, who wants me to come in soon for my annual checkup, and they are:
• My right ankle/foot feels like it is perpetually about to collapse.  It is hard to walk without my forearm crutch.  It hurts.  I am sure there is not a lot to be done about this and I think it is just part of living with a Connective Tissue Disorder (CTD), but I will tell her about it.
• My right wrist is the same way.
• My sternum is still unstable, even after two years since the surgery. I clicks open and closed when I move, much like cabinet doors opening and closing.  Quite painful.
• My right foot continues to grow and my left foot shrinks. I would think this has something to do with a blood flow imbalance.  My right illiac artery is dissected (thoracic aorta is dissected down into my right leg), so it seems to me that the blood flow to the right leg would be impeded and the right foot would shrink, but ???.  
• I will ask her what to do about the chronic pain.  I hurt daily, usually a 7 to 8 pain level while sometimes reaching a 10 for long stretches.  Do Tens units work?  How do I deal with daily chronic pain?
• My left eye has ongoing bouts with a dark, sideways closing curtain.  Is my retina detaching?
• AFIB and VTACH come and go.  Sometimes my pulse will jump, out of the blue - but especially when weather fronts come through - from 50 to 150.  That throws me to the floor, literally and scares me to death.
• I will mention the LOUD clicking my aortic valve makes but I am totally cool with living with a valve that makes noise, so long as it keeps me alive.
• I have chronic fatigue and find myself blacking out or falling asleep right in the middle of the day sometimes.  My diet is wholesome - I do not eat processed foods usually -just fresh meat, fish, garden veggies, some fruits, no grains, no sugar, low salt (sometimes - I love salt).  I exercise - ride bike and walk and do yoga for an hour each morning.  But I think with a 50ish pulse and a heart output capacity of 20-25% that fatigue is to be expected.
• And other questions as they pop into my mind.
• Our teens have genetic testing and their annual echocardiograms in April.  I constantly worry about the teens, especially when their chests hurt or they feel dizzy.
• My Florida drivers license is medically revoked so I have had to learn to get around on my bike or through rides from family and friends.  I try to keep asking for a ride to a minimum because I do not want to be a burden.  Loosing my license after driving for years was a mental challenge.
• Depression is still a looming specter and I deal with it through prayer and spending lots of time outdoors, especially at the ocean and on my bicycle.
• I self-adjusted my Losartan dosage - doubling it from 50mg to 100mg daily because I could not keep my blood pressure down on 50mg.  After a month or two at 150+systolic I upped the daily dose to one 50mg tab in the am and another just before bed.  This has brought my systolic back down to 115.  I could not afford to go to the cardiologist to discuss, and will discuss with him in May - though we have discussed before.  Please do not do this yourself.  

And that's about it for my life with Marfan and other CTD issues.

Stay tuned for more as it happens!

Kidney Health and Marfan Syndrome - Processed Food Challenge

O.K. Here are two more items I am booting out of my diet and medical regime.

Marfan Syndrome, kidney health and processed foods.

Oatmeal and Emergen-C are gone.  Yep, I was just as surprised as you are right now, but let take a moment and quickly explain why.

First of all I am not suggesting anyone eat a certain way.  My diet is special and so is the information here on this blog.  What works for me may not be right for you.

Because I went into renal failure during my open heart surgeries, I have to really treat my kidneys with special care.  Learning about a renal diet has been a challenge, what foods to eat and which ones to avoid.  It is all so very complicated but important, for without my kidneys functioning at their present level I could end up on dialysis.  Yep, dialysis is right around the corner for me possibly.

But I never received any real help from the myriad of doctors who treated me over the past three years when it came to learning what foods to eat and what grub to shun.

My cardiologist did comment on the Coca-Cola I was drinking one day during an office visit, telling me I must avoid dark sodas at all cost.  He went on to explain that the dark colas contain forms of phosphorous and that any drink with 'phos' in any form in the ingredients was bad for my kidneys.  For that matter, anything at all that contains a 'phos' for an ingredient should be abstained from, warded off and shirked.  I never did mention to him that it was his nurse who gave me the dark cola.  Today though I do avoid all sodas, dark or clear as the National Kidney Foundation recommends!

Sugar in any form hurts my kidneys.  Sugar and salt are two of my most hardest for substances to avoid, primarily because I like their taste.  It is easy for me to tell when I've had too much of either.  Excess salt raises my blood pressure almost instantly.  Sugar makes me very, very sleepy - almost comatose-like.  I don't need to read a medical textbook or have a doctor tell me when I've eaten too much sugar or salt; my body tells me loud and clear.

So the other day when I noticed I was getting sleepy after a dose of my favorite vitamin C powder - Emergen-C I read the packet's ingredients.  First on the list was fructose.  Good grief!  No more Emergen-C.  I thought I was drinking vitamin C, turns out I was imbibing mostly fructose. Sugar, sugar, sugar.  Ugh.

Now for the hard part.  Everyone has always told me oatmeal was good for me but lately, after eating Judy's homemade granola containing mostly old fashioned oats and very, very little processed sugar - she uses dried fruits to sweeten her granola - after a small handful of crunchy granola the same sleepiness would sweep over me.  Yawn.  Here comes an insulin spike.

As usual Mr. Google pointed me in the plentiful information path and my mouth fell as I read article after article about how oats cause insulin spikes and are really not so good for many people's blood sugar issues.

Finally, I am beginning to listen to my body.  Most of the time I know when a food or medicine is not good for me long before I read about it on Google.

Avoiding added processed sugar and those foods with glycemic indexes affecting my insulin levels and kidneys is really easy if I watch for the comatose feeling after ingesting the substance.  I knew even before reading about oatmeal that it may not be good for my kidneys because of the way the oats made me feel.

Yes I know oatmeal is full of fiber and has a lower glycemic index than other cereals.  Too bad.  Broccoli and many nuts are full of fiber and don't hit my bold sugar the way oatmeal does.

So goodbye to two more old friends.

If I could just stay away from processed foods……..

Eliminating Processed Foods from my Heart Healthy Marfan Syndrome Lifestyle Diet

Knowing what you need to do and doing it are two totally opposite actions.  I know I must avoid processed food if I want my body to continue to function.

Oh no! My favorite fish is loaded with ugh fructose corn sweeteners!

But as I am writing this post about the importance of eating not-toxic, un-processed, real food that even looks like real food, well….I just finished off three fig bar cookies (hey….Aldi foods sells them for $0.89 a package and they are loaded with high fructose corn sugar (HFCS)).  I know it is important that I give up HFCS.  I know this in my brain.  But my brain does not always carry majority rule over my tongue and my mouth and my belly.

Dylan, our teen grandson who is living with us while his mom recovers from a serious brain injury attends the local jiu jitsu dojo most week nights.  His instructor and I were talking about diet the other day and I really, really agreed with his statement, "everyone has to have their cheats".

My cheats today were the three fig bars.

Seriously, I am proud I stuck with food that looked like food today.  Except for the fig bars.

I ate nuts, oranges, greens from the garden, chopped okra, cooked beans, garlic, a couple pears and a can of sardines for breakfast.  The sardines were very, very rich in fish oil. So rich in fact that hours later when Dylan came home from school he asked me, "Papa K, did you eat sardines today?"  So despite scrubbing my teeth, gargling with peroxide and flossing, the fishy smell still lingered.

Sardines and fishy smelling fish are full of important omega three fatty acids.

A small handful of walnuts each day is always part of my omega three purposeful diet but the walnuts do not pack the omega three punch strong smelling sardines do.  Herring has long been another  favorite fish dish.  I especially love(d) Vita Herring in wine sauce and  in sour cream.  OMG.  Melodious waves of joy and ecstasy would roll across my tongue at the first fishy bite.

But no more.

You see, I have started reading labels and this has led me to some seriously sleepless nights lately.  I am finding out what I am really eating.  And most of the processed foods I am eating, no matter how healthy the labels look, are filled with chemicals and MSG and HFCS and other fabricated compounds right out of a show like the 'Twilight Zone'.

I knew this years ago but my tongue and stomach and mouth kept vetoing my brain's attempts to boycott these processed foods.

Unfortunately I am finding that if a food tastes really, really, really tasty then either MSG or HCFS are present.

I was very afraid of reading the labels on my Vita Herring because my brain was in no mood to piss off my tongue, mouth and stomach.  But I read the labels and sure enough they were full of high fructose corn syrup.

Sadly, I usually do not change habits until I have to.  And so it was with my Vita Herring.  A while back I started noticing my blood pressure spiking after I'd eaten my Vita, my systolic hitting the 150s.  150 systolic is way too high for someone like me with a dissected descending aorta.  In fact, systolic that high is deadly for me.

My brain knew the overload of HFCS was to blame but I tried eliminating every other food I'd been eating recently with no luck.  So I read the ingredients again, just to be sure.  HFCS was a major ingredient.

So I threw my Vita Herring away.  And I cut out all the HFCS and MSG out of my diet (except for those three fig bars today).

Within a week my blood pressure had returned to a normal range of 110/55-120/60.

My brain finally won the vote.

Yet this means that I've had to eliminate almost every processed bit of food from my diet.  No more ranch or blue cheese dressing.  Too much MSG.  No more fig bars.  After today.  No more ketchup.  No more delicious buffalo wing sauces.

I am going primal.

I knew I had to do this all along.  Friends urged me to do this for years.

The only reason my brain has won is because I really, really want to live.

Processed foods are so addicting.  We live in a world today where slow death by toxic food is an accepted norm.  My tongue, mouth and stomach are laughing at my brain for thinking this.