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.

Connective Tissue Challenges, Learning to Live All Over Again

Someone started a rumor long ago that says you can't teach an old dog new tricks.  I say, "it depends on if they have a connective tissue disorder and how bad that dog wants to live".

Living with a dissected aorta - my descending dissection #Marfan

My present mission is to stay alive at least long enough to see my two teens able to support themselves and to enjoy life with my wife, Judy. That is pretty significant incentive.  I sure hope this is possible but I have to be honest and say that each day I wonder if I am going to be able to make it or not.  There are so many common, every day things that can seemingly push me towards the final edge.  

Living with a dissected root to foot and up into my kidneys, aorta and a HUGE false lumen that floats around inside the main blood vessel, requires me not to strain, lift or otherwise exert myself.  Surprisingly this is much harder than it sounds.  You'd think, OK, just don't lift or strain too much.  Yeah, right.  Open this peanut butter jar for me.

It is not the hour long weight lifting outings or intense home remodeling or green roof construction activities that I've already given up that present those unexpected aneurysm dangers.  Rather, it is the little things in everyday life that I have the most problems with.  Unfortunately I don't find out about just how I am hurting myself until after the fact and my chest starts becoming tight and my aorta begins hurting again.

After living with a Dacron graft and St. Jude valve for two and a half years I am still learning new tricks.  This dog has finally come to realize that there is no going back to the old way of type A living.  Today's life is centered around measured movements, cautious exertions, decreased activity duration and cardio instead of anabolic muscle approaches to exercise.

Tightness, aching and jaw, chest and back hurt are all still fresh memories haunting everyday life.  I never again want to experience the unzipping feeling radiating down my body as the intima wall separated from the other two aortic layers.  Today, I have very similar pain events occur out of the blue, though nowhere near as intense, whenever I put stress on my cardiovascular system.  So I have to learn to avoid cardiovascular stress of any type.

But these 'instigating events' sometimes are activities one would never expect to be potentially responsible for a future dissection or aneurysm.  Simple stuff, like taking the garbage out or moving a piece of furniture (hey dollies were invented for a reason).

Today I know I can no longer jump up from the couch and hoot or holler when a sports game is on television.  In fact, after the last few college football seasons and the Florida Gator's not so stellar performance (but hey, Go Noles!), I do not even turn on the television to watch games.  In fact I do not turn on the television at all.  There goes a bunch of cardiovascular stress out the door.  Now I blog.  New trick.

Today I must watch myself when sneezing or straining on the toilet.  Too many people have kicked the bucket on the loo; even some very famous people.  Thanks to daily organic psyllium fiber all things run much more smoothly now.  Yet the sneezing can't be avoided.  I just hold my chest tight when sneezing though I am sure that clasping my chest tight is not going to hold my pulsating internal supply hose together if the sneeze is big enough.  

Today I can't work on my bike like I used to be able too.  One of my pedals needed replacing and as I tried to loosen the proper bolt with an open ended wrench I felt that old familiar pain returning.  Stop, take a deep breath and think.  I must learn new tricks.  I can not strain like I used to.  My teenage son though can help me and the use of cheater bars and levers can make the job much less stress intensive.

Today I can not jerk on weed eater or lawn mower starter handles.  Upper body rapid upper chest movements while straining are a trigger for dissection according to Dr. Lars Svensson.  But this old dog here has found that today's electric weed eaters and lawnmowers are, especially with their 56V batteries, amazingly capable, lightweight yard machines and best of all they just require a button's push.

No more working on the car, but it is time for the teen son to learn anyhow.

Those darn random firing red-light camera flashes used to send adrenaline surging through my body causing the blood pressure to soar when I was driving.  Now, without a driver license I don't have to worry about keeping my eyes on the road.  No more gripping the wheel so hard the veins on my neck stand out.  No more yelling un-intelligible, sloberish words out the car window and hitting my head on the frame as I offer up evil hand gestures.  Much less stressful to walk or ride a bike.

No more scuba diving into caves.  Sometimes I wonder about the summer before I dissected.  I was diving in a tiny vertical cave shaft well over one hundred feet below the surface with hardly any room to even turn around.  Or those times I would free dive down into the west sink in Promise Sink, swim through the connecting cavern about forty feet down and come back up in the adjoining east spring.  Or those times in Peacock Springs where we'd dive straight down through fifty feet of zero visibility algae blooms to finally break out into a crystal clear basin full of alligators resting on the bottom of the cave opening.  What a rush!  And my aorta held.  Lucky I did not dissect underwater.  Today I lay on the beach and watch flocks of prehistoric pelicans glide seemingly motionless overhead, a much easier cardiovascular activity than equalizing pressure in one's head underwater or becoming tangled up with a dive partner scrambling away from large underwater reptiles.

No more eighty pound bags of cement.  No more forty pound bags of compost.  No more ten pound bags of ice.  Doctor says two pounds max.  Ugh, this is a challenge.

But the cheater bars (a long hollow piece of metal used to gain leverage - not a place to find alcoholic beverages or wild women), levers and teen help works.  The teen's echo shows dilation has started though, so the teen help will be limited and cautiously monitored.  This old dog is learning some new strategy.  Will it be enough to keep me alive?  I think where there is a will there may be a new trick.  

Connective tissue challenges might cause all sorts of hullabaloo but they also present all kinds of opportunities for learning to be creative.

So for all you out there with special challenges, Be Elite.  b31337.  We are the magicians.

My Dissected Aorta Loves A Dollar

A most wonderful dollar bill exchanged its existence in my wallet for a pill case.  Greater love for me hath no other dollar.

Medication Organizers are inexpensive but so helpful!

 Finally, I purchased a weekly pill organizer from the Dollar Tree for, yes you guessed it, for that folded one dollar greenback.

And it has so helped with my stress levels and panic episodes.  I should have listened to others and bought one sooner.  But I usually have to learn the hard way.  Sometimes I wonder just what I could have accomplished in life if I had really listened to others, learning from their similar experiences.

But no, I have never much listened.  I have been destined to repeat that which I could have avoided.  Perhaps though learning by experience is part of the human curricula. I know learning the hard way is the path I usually take.  Yes, I kinda enjoy experiencing the challenges for myself.

I can't begin to tell you how many times I have wondered and worried, before I spent this dollar.  Did I take my medicines?  Oh oh, I can not remember if I did but it looks like there are fewer pills in my pill bottles.  Frequent episodes like these always sent adrenaline surging through my cardiovascular system.  Not a good thing for those of us living with a dissected aorta.  Especially when there are so many, so very many pills to swallow.

Medication Memory Issues Resolved! #Marfan Syndrome

Hallelujah! Now with my one dollar pill organizer I feel like all the things falling apart from my connective tissue disorder issues might just start slowly become put back together.  No, the plastic box won't heal my root to foot dissected aorta but it might mitigate heart seizing surges from wondering if I've swallowed the colorful tabs or not, and that might prevent a stress-related cardiovascular incident.

That spent George Washington grew so big in size, and in my mind is now more like a security blanket rather than a small folded piece of paper now in a who knows where cash register drawer, purse or wallet.

I should have listened and bought one several years ago.

Maybe I was waiting for just the right dollar bill to spend.  They say we shouldn't love money.  Where ever you are George, I love you….

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

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!

Writing My Own Obituary - What An Experience!

I wrote my obituary this week.  Yes,  it seems mostly what is written here lately has been focused around disease, dying or death.  But I am trying to get all things in order so I can turn to the fun stuff on my bucket list.

Kevin Songer's Obituary

Blah!  Who wants to write their obituary?  And the process was actually quite depressing, especially as I was trying to get started.  But the obituary writing process got easier as I wrote and thought and thought and wrote.

In fact, at first I initially felt an overwhelming and revolting sense of 'why even do this?' sweep over me like one of those big, unexpected Flagler Beach waves that crashes over you, sloshing salty water up into your nose, eyes and down into everything else attached to or part of your body.

'Yuck! Ugh!'  My right knee started it's shaking up and down while I sat trying to paint words on the blank screen with the Apple keyboard. 'Where do I start?'

Thank goodness for Google.  Type in 'SAMPLE OBITUARY' and right away a number of free self-help sites come up on the screen.  Cutting and pasting was easy and there it was - my roadmap outline to my own personal obituary.  All I had to do was fill in the blanks.

The other day I posted a note about visioning our lives as a mural we are painting each day with our actions and deeds. I was hoping my life's mural would be filled with love and joy.  As I was writing the obituary I could see that the words being penned were actually a reflection of my life's mural, but created with a pallet of words instead of paints.

My first thought was to fill it up with all the details of my accomplishments, all this this and thats that no longer meant a whole lot.  Turned out all the theses and thats was way to boring.  So I deleted all the accomplishments and focused on family and friends.  The obit was looking better with the 'family and friends' approach, but with a 'his' and 'hers' Brady Bunch clan there were a lot of names and I did not even get to the grandchildren.

As I wrote I began to feel a big sense of relief, like finally coming up out of that salty wave and taking a deep breath of fresh air and feeling the warm sun across my skin.

And I was so proud of myself!  I had to tell everyone about what I'd done, including my mother and father and even asking my teen daughter, Jincy to read over it!

Does that should way too morbid?  Maybe so, but somebody has to write an obituary for us.  In my efforts to try and have everything organized before I go, the obituary was just another item I can check off of my 'to do list' so I can get to my bucket list's fun stuff.

Just like a will and a funeral plan, everyone should go ahead and take care of their own obituary.  It actually may help keep your children, or spouse, or whoever you leave behind from having to tell all those little white lies when they try to think of what to say about us.  Ha!

Minor edits have already crept in and I am sure that over time the text content will evolve and does my life.  And I certainly hope not to use it anytime soon!

But the words have kind of fashioned my time here on this planet with these people into a manageable mouthful of verbal art that hopefully reflects my life's mural, something tangible I can carry around with me like my name.  Something that can help guide the rest of my life maybe and give me cause to stop and consider how people will really remember me, something right out of my Facebook page - lol!

So here is my draft (Yes!  DRAFT - not to be used anytime soon I hope) obit.

Hope it inspires you to write one too. -

----

Kevin Shea Songer, (Age)

Kevin Shea Songer, (Age), died (Month and Year, 20xx), in his home in Palm Coast, Florida.

He was cremated. A service was held Friday at Princess Place Preserve in Flagler County, Florida.

Kevin was born March 24, 1957, in Atlanta, GA., to Louis and Paula (Morrow) Songer.  He grew up in Hialeah, Florida, attending Meadowlane Elementary and Palm Springs Junior High in Hialeah and his family was active in the Hialeah Church of Christ.

He graduated from Leon High School, in Tallahassee in 1975. He married Judy Marie Songer on April 5, 1995, in Crawfordville, Florida.

He held an undergraduate biology degree after attending Florida State University and David Lipscomb College and also a Juris Doctor of law degree from Florida Coastal School of Law.

Kevin survived an aortic dissection in November 2011 and spent the rest of his life medically managing his descending dissection and related Marfan Syndrome challenges.

He enjoyed nature photography, Florida’s state parks, hiking and cycling with his wife and spending time with his children and grandchildren.

He actively blogged about green roofs and life with Marfan Syndrome.  His blogs are located at http://kevinsonger.blogspot.com and http://aorta-tear.blogspot.com

He leaves behind his wife, Judy Songer of Palm Coast; brother, Scott; sister Leisa of Tallahassee. brother Brian of Indiana; children and step-children include; Jincy Songer and Ruairi Songer, Dana and Jared Neal, Sesha Castagna, Kyndra Griffin, Melissa Cummings, Leslie Ferguson, Laura Griffin, Adam Griffin and numerous grandchildren, and many friends across the world who share a passion for green roofs and also those challenged with connective tissue disorders like Marfan Syndrome.

Kevin was preceded in death by, his sister Janna, a granddaughter, Heidi Ferguson; (and if any others).

Lohman Funeral Home of Palm Coast, Florida was in charge of arrangements.  Remembrances can be made to The Marfan Foundation, http://marfan.org 

My Distal Aortic Dissection, NIH Treatment Discussion

I added a photo of my existing dissected distal aorta to the upper right hand corner of my Marfan blog here, to remind me everyday is an important day in the battle against hypertension.

My dissected distal aorta - existing unrepaired

If you look closely at the above photo you will see two ovals in the center of the echocardiography.  There should only be one oval.

The top oval is the false lumen, or dead end ripped out channel.  The bottom oval is the true lumen or open channel in the aorta.

The line between the two channels is the intima tear - of inner lining of my aorta, ripped out from the aorta wall and 'floating' in the middle of the aorta.  This phenomena is know as a 'dissected aorta'.

The vessel walls are much weaker than a normal, non-torn aorta and are subject to rupture or aneurysm.  As stated in the article published in the U.S. National Library of Medicine's National Institutes of Health, aggressive hypertension treatment is about the only non-surgical treatment option for this condition.

Surgical replacement of the distal aorta is highly risky.  Stents are not accepted as a treatment option at this time.  My cardiologist says 'we don't want to open a can of worms', and one of my Facebook Marfan Syndrome friends recently did not make it through her descending dissection repair in Denver this last month.

I am placing this photo here to remind me of not stressing, of remaining calm, not worrying, not picking up anything over two or so pounds as my doctor recommends.

Our body is amazing.  And it continues to function sometimes even when the 'experts' shake their head and wonder how.

Living with a Dissected Aorta, Good and Bad News, Depression and Hope.

I am so confused and can't figure much of this Marfan challenge out.

Some days I could care less about my dissected aorta.  Usually on those days the sun is shining and I go for a bike ride, keeping my physical exertion to a minimum but distracting my mind from the torn vessel from inside my chest.

Other days, like today are rainy and generally blah.

Yes, this is all perspective, I remind myself.  I could have been born in a much poorer place of the world and be dead now because of a lack of access to hospitals.  I could have been born during the Inquisition period too, or any other horrid point in history.  Instead I am here today with hot water, electricity, Facebook and grocery store food.  So I should be thankful instead of gloomy.

But I am gloomy.  And it didn't help that I awoke this morning to an article in my email inbox about the FDA approving Medtronic's thoracic stent graft system for people like me living with a dissected descending aorta.

Ugh.  The article starts out in the first couple sentences stating, "Expand Treatment Options for Patients with Dangerous Tears in Upper Segment of Body's Main Aorta".  Hey, my tear goes all the way to my feet so is that dangerous times three for me? Ugh again.

Then the article talks about my condition as a "serious cardiovascular condition associated with high morbidity and mortality in which the upper segment  of the body's main artery has become torn along the innermost layer of the vessel wall."

Using the words, 'morbidity' and 'mortality' is such an endearing writing strategy for those of us living with dissections.

I am so glad the medical profession is working to find solutions.  Without such I'd be dead now of a ruptured ascending aorta.  And I am not wanting to live like an ostrich with my head stuck underground so I won't see or hear (or read) the 'fear' out there.

Yes too I am so thankful for all the blessings in my life.

But chronic pain is real and so is fear of dying way too early in life from a dissected aorta.

I know I am not alone in this struggle.

Hopefully by writing these brief words, someone else out there suffering in a similar fashion will too know they are not alone.

O.K., now that I have had my pity party I will finish reading the article.  Maybe it ends in a note of hope.

Living in the Moment, Family Life and Aortic Dissection

Life is predictably arbitrary.

Dolphin swimming with the current, Mantanzas River

Just when we think we've have mastered our existing set of challenges, other issues capriciously appear out of nowhere, either 'upsetting the apple-cart' or broadening our wisdom, depending on how we want to view these unexpected chapters of our lives.

Yesterday four kids and a dolphin swimmingly through the Mantanzas River's swift currents taught me more about life.

Most days it is all I can do to ponder how I am going to make it through another day with this Marfan Syndrome painted body.  Will my damaged aorta hold out another moon's orbit?    It is so easy for me to become totally absorbed in my own personal health drama.

Don't get me wrong!  Each heartbeat is a gift for me and I know I must be very careful with everything I do from lifting anything over a couple pounds to coping with low pressure weather systems that wreck havoc on my bionic heart parts.

But it is easy to think; me, me, me; my problems.

Compound that with my wife Judy's serious and chronic health issues and I quickly think I am in 'cope ability' overload.

This past month Judy's second eldest daughter suffered a brain hemorrhage, a very serious aneurysm leaving her almost blind.  She is a single mother of two high powered teenagers.  But then again, most all teenagers are 'high powered'.

Judy spent the entire last month sleeping in a hospital room chair, by her daughter's side, every night guiding her through immense periods of pain, helping her daughter navigate the unknown of cerebral bleeding.

I spent the month tending to our two teens, cooking, cleaning, and all the things two parents normally do.

I always say, "my doctor tells me my number one job is to stay alive".  I love this mantra because it allows me to hide inside myself; a place I am familiar with, a place I mostly control and a place where I can placate my self absorbedness.

"It's difficult!" I would proudly and without humility tell those who ask how Judy and I are holding up as we extended ourselves out past our comfort zone.  I loved the attention and I was truly looking forward to her finally coming back to our home once the doctors had stabilized her daughter's bleeding and rehabilitation had begun.

Our two teens are tough enough for two relatively healthy parents to properly raise.  But parenting them all by myself for a short time was taking its toll and I was ready for my wife to come back home from out of town.

Judy's daughter is now recuperating and working with rehabilitation.  Her vision has been seriously impacted, however we are so glad she is alive.  She has a very long road ahead of her with respect to being able to take care of herself again.

Her two teens coming to live with Judy and I, their 'Nana' and 'Papa K', is the best solution until their mom's healing is complete.  Now we have four teens, two teens of our own and two grandchildren teens.

Just the physical logistics of this family integration seemed complicated and overwhelming at first.  But in fact it was a blessing.

Yes the laundry requirements have jumped, as did the amount of food to prepare and the energy output on our part as parents.

But I am learning so much about life from all four teens and also from the dolphin we saw yesterday while out on a picnic down by the beach.

Yes, there are strong currents.  The waters in Mantanzas Inlet are swift.  But if you learn not to fight them, you can go so many new places.  So it is with the many unexpected challenges we face from time to time.

There may be lots more work but there is also lots more laughter, smiles and insights and understanding about our human spirits, like when Dylan ran up to Judy the other day and gave her a really big joyful hug.   Perhaps at the end of the day that is all life is really about.

Yesterday, taking the four teens to Mantanzas National Monument we rode the ferry boat across the river to the fort.  Dolphins swam playfully alongside the craft.  In the middle of the swift flowing potentially treacherous waters, one dolphin rolled up across a wave's crest and loudly pulled in a deep breath.  Our two grandchildren exclaimed loudly pointing, smiling, exclaiming, exuding a sense of wonder and amazement for life in the midst of their deep fear and concern for their mother.

Mantanzas River, Kayaker and Dolphin

Breathing deeply, swimming with the currents, laughing, hugging and living in the moment despite whatever comes our way sure beats that depressing mantra "your number one job is to stay alive".

I think it is time for me to adapt a new mantra.  I am not sure how to word it yet but the thoughts of 'love', 'hope', 'swimming with the currents' and 'living and breathing in the moment' will be what it is based upon.

Maybe my number one job is to breathe deeply, live in the moment and show love and be loved, despite whatever swift currents may drag and pull.  I'll swim with the flow.

Marfan Syndrome Parenting of Teens, My Fears

Being a Marfan parent is hard not only because of the day to day pain of connective tissue problems but also because of the emotional and physical intensity required to mitigate fear of an untimely dissection or other serious health issue in affected children.

Surfer swim-out tribute to Tommy Tant - Marfan Syndrome

I know I am not supposed to worry, but as someone who has a Type A personality I not only worry about my existing dissection, I also worry about what could go wrong in my children's already compromised arterial systems.

My mom underwent aortic valve replacement and has a Dacron ascending aorta.  She had her replacement one month after mine, though unlike mine her procedure was planned.

Over the past two years since both of our surgeries I have talked to her and dad almost every afternoon on the phone.  When I worried about what a loud racket my valve was making, she could relate.  When she fought vertigo, I knew my dizzy spells were not unique to me.  I found much needed inspiration and hope in watching her slow but steady progress with recovery.   She reminds me to check my INR regularly, tells me to avoid grapefruit and checks on new food I mention with respect to blood clotting interactions.

Those days when my St. Jude valve is clicking louder than ever and I worry about it blowing out of my chest, hearing her tell me she is experiencing the same loud aortic noises works better than any medication at calming my fears.

So I want to be the same bastion of security for my children. I don't want them to feel alone in this fight for life against connective tissue health issues.  But learning to be a wise Marfan parent has not been easy for me.

Judy and I do make sure the teens have annual aortic echocardiograms and other health checkups.  The teens are also involved in local community events raising awareness of Marfan Syndrome and aortic dissection and aneurysm issues.  As with any potentially life threatening challenge, awareness has its upside but also can lead to worry in youth.  Finding the right balance with the teens is hard on them and also very hard on us.

There are those who knew of Marfan issues before they had children and decided against raising kids and there are those who made the decision to go ahead and raise children regardless.  I found out about Marfan after Judy and I already had a boy and girl challenged with connective tissue issues.  So now we must make the best of what is and what we are dealt with.  And as most any proud parent would be, I am so very thankful for the our two wonderful teenagers, regardless of Marfan challenges we now face.

But there is a delicate balancing act we must participate in, one with life and death implications.

The awareness activities we encourage our teens to participate in do help them realize the importance of understanding and proper routine medical vigilance.  All this focus on what could happen also sometimes promotes certain fears in both them and in us as parents.

However dealing with fear but having children who are alive is so much better than not knowing about connective tissue issues and loosing a child to a dissection or aneurysm.  My heart cries out for all the parents who have lost children this way.

This past November our teens worked in the Marfan Foundation booth at the Tommy Tant Classic, a national surfing event sponsored to raise awareness of Marfan and aortic dissection.  Tommy Tant died in his sleep at the age of 24 from an aortic aneurysm.  Tommy's mother, Mrs. Tant and his brother Will, and others sponsoring the event have made a huge, positive and important impact on both Ruairi and Jincy, our teens.

The entire event is really a celebration of life and one of the most moving, emotional moments of the event occurs when all the surfers, professional and amateur alike paddle out past the breakers and form a circle in the ocean.

I have been there, done that with the dissection thing and know that even though my descending aorta is still ripped deep down into my kidneys and legs, I am living another day.  However to Ruairi and Jincy the awareness of what could happen has created unnerving uncertainty.

They now come to me periodically, but on a regular enough basis, holding their chest and telling me they hurt.  Yes both are strongly self-contained however try as they may they cannot hide the fear in their eyes.  This always scares me.

"OK", I say.  "Where does it hurt?  Tell me more about how you feel."   I am not a doctor but I am a dissection survivor.  I remember in detail how the tear felt.

Even though I feel I've developed a personal sense of what is cardiovascular related and what is not, I take each complaint of chest pain very, very seriously.  But I do not take them to the emergency room each time these chest pain incidents occur.

Having to make health decisions that the life or death of their children could potentially pivot upon is not easy for a parent.  In fact, it is not something I signed up for.  However it is something now I will without hesitation take on.

I wish on no one the path I went down during my dissection and subsequent heart infection.  I hate the thought that my kids may have to walk the surgery path that my mom and I have both walked.

This Marfan journey has been surreal to say the least and for those of you who have read previous posts here on this blog know of my 'encounters' with this surreal. From guardian angels and near death out of body experience to stunningly vivid, colorful and wildly animated dreams, my life is filled with events I constantly question with respect to levels of reality.

Regardless of just how real some of what I see, hear or perceive is, my world view and my love for the two teens here are inextricably woven together.

Like this morning, when I woke early and wanted to write, first thing I did was clean the grounds out the glass coffee press.  So I carried the carafe out the front door at four A.M. to empty those grounds around the rosemary bushes.  To the left of the herbs there was a little wren holding on to the screen outside Jincy's window, singing a soft,  beautiful song.  I froze. The wren kept singing.  I walked closer and the wren didn't fly away; it kept singing and singing.   The pretty little bird sang for me for until I walked back into the house.  I turned and walked back out to see if the bird was still there.  It was, and singing even louder.

I turned and went back inside.  Shivering from the early morning chill I headed straight for Jin's room.  I know she thinks I am an overly cautious parent because I am always checking on her and her brother while they sleep but I could not see the rise and fall of her chest so I reached and turned on the hall light.  The glare prompted a wince from her sleepy eyes and an "I'm O.K., Dad" half whisper.

I sighed heavily, turned down the light, closed her door and shuffled back into the kitchen to grind dark roast coffee beans.

This morning I fought the fear that the little bird may really have be the spirit of my child singing, leaving her body.  The fear was real, very, very real.  Being a parent is so hard sometimes.

Now, when my son or daughter come to me with a look of concern on their face and hands over their stomach or chest, we do the 'checklist' diagnosis routine.

"Dad, my chest hurts really bad."

I pause, look them in the eyes and ask, "O.K.  Where exactly does it hurt?"

"Here in my chest."  They usually run their fingers up from their stomach to their neck and back down.

First question I come back with is, "Does your jaw hurt?  What about your back?"

"No, it is not my jaw or back," they respond.

"O.K., good", I tell myself.  The thing I remember most about my dissection was jaw and back pain, though caution is appropriate here as these may not be symptoms presented during a dissection or aneurysm.

"Just really hurts deep in my chest," they usually continue.

"What have you eaten today?" We then go talk about the types of foods they've ingested recently.  I key in on any sugary or acidic foods. "Could you have acid reflux?" I may ask.  "What about exercise or sports?"  Sometimes a strenuous activity may be the trigger.  "Could it be a pulled muscle?"

If we cannot quickly pinpoint a food or activity as a potential cause I will take their blood pressure.  Caution is appropriate again here too because unusual blood pressure is not usually an indicator of dissection or aneurysm.  My blood pressure actually dropped during my dissection.  Yet I still like to keep track of their blood pressure and pulse when they start complaining of chest pains.

I'm mostly encouraged when I see systolic and diastolic values of  around 95/60.  Dissection can be, though not always, aggravated by high blood pressure or adrenalin surges.  Knowledge that their aortas are only moderately dilated combined with a low blood pressure reading is somewhat statistically reassuring but still dreadfully disconcerting.

One can never be sure with this connective tissue health problem.

Usually the teen's pain will subside over time.  So far to date, I've not actually taken them to the emergency room for chest pain issues.  And I hope I never have to.  But when all this happens I am participating in a calculated risk with my children's health and lives.

There have been those days where the pain lingered longer than normal.  The teens then expect me to check on them more than once during the night.  And when I do the rise and fall of the sheet tells me they are O.K. for the moment.

The wren outside my daughter's window may really be just a wayward singing bird.  But I still worry and need to make sure Jincy is in her room, sleeping, breathing, and alive.

No matter what happens in our connective tissue torn lives I will be grateful for the friends within the Marfan support community I've found over the past several years.  There are those who have already lost children, spouses, parents, family and friends.  There are those who are presently fighting for their lives and those who have survived the worst.  Groups like The Marfan Foundation offer resources and serve as a much needed safe haven of knowledge from fear of not-knowing how, when or why this serious health issue manifests itself.

But even with all the family, friends and community support, it is still hard to know just what to do when someone who is Marfan challenged, especially when that person is a child comes to you and complains of a hurt in their chest.

I love the mystical beauty of the wren singing on my daughter's window in early morning hours.  I'm sure I'd enjoy the sweet bird call more though if I wasn't so worried about my daughter's Marfan issues.

Personal Marfan challenges are tough enough to deal with.  But I've momentarily beat my dissection.  Being a parent of a Marfan child, though, well that is a whole different song…..

Dissected Aorta, Connected Tissue Disorders and 2014

It has been an entire month since I last published a blog post.

Dissected aorta or not, must keep going!

Pain and depression I've battled lately have discouraged me from writing. However I know that I need to keep pushing my partially functioning brain.  Last thing I want is to end up with moss and fungus growing all over and inside my head.

The memory loss and recall issues is so very frustrating. My conversations are sometimes filled with nonsensical terms as I reach into once word filled but now empty grey matter chasms.

And my body hurts so bad.  Last night I had promised others I'd show up for New Year's eve fun.  However after taking the teens out for pizza I felt the imminent crash of pain and exhaustion and had to have Jincy take me home.  Stumbling into the bedroom I fell on the floor and passed out into unaware oblivion until the midnight neighborhood fireworks rocked the house.

There are no words to truly describe the feeling of muscles shredding, pulling apart, unraveling, burning with uncoolable heat.  Curling into a fetal position I lay still for hours, until I fell asleep once more, the rest a gift of mercy from my guardian angel and from God.

It is so easy to feel sorry for myself.  With a dissected aorta, an obnoxiously loud aortic valve, chronic fatigue, the worry and pressures of living life as a disabled person without a driver's license, watching my wife nurse her second oldest daughter laying in the hospital with a cerebral hemorrhage, two teenage additions to our family (who are truly blessings) experiencing the turmoil of their sick mother and having to be transferred to a different school midyear, the physical demands of keeping up with the parenting and energy input requirements of four teens, and all the other 'stuff' that happens to us all, well....it is easy to become self-absorbed in pity.

I can say I will choose the higher path, one with love, care and concern for others above myself.  That sounds so good.  But I know I am only human and will soon fall back into the narrowly focused pit of pain and hurt, because I really do hurt!

But I am going to try.  I will fight off the ... (I cannot think of the appropriate word for the state of being where depression and pain are so friggin bad - maybe - monumental BLAHS) and commit to trying, at least for a day.

So I will be once more posting diet and blood pressure and Marfan Syndrome - Dissected Aorta life notes here on the blog.

Maybe if I can get through today I will do the same again tomorrow.

Yes, I am thankful too.  I do have a wonderful family, wife and children.  That loud aortic valve means I am alive.  My friends are so encouraging.  My guardian angel sits faithfully outside my window and follows me wherever I go.  There is a marvelous organic garden outside.  Sidewalks bring beautiful and adventurous pathways for miles along most of the roads here.  Wildlife and wildflowers inspire haiku and poetry and life's beauty is inspiring.

But the depression of hurt sucks.  I am not going to lie to myself about this.

Just going to focus on making it through today.

It is going to be a good one.  Despite.  Hallelujah, right?

The Cold Front That Almost Killed Me; Barometric Pressure and Cardiovascular Failure

Today is Friday and I am alive and writing about how I thought I was going to die just forty eight hours ago and at that time I had no clue as to why I felt as though my aorta was about to aneuryze.

But now I know what happened, thanks to several research papers published to the internet and input from others who are challenged with similar conditions.

Watch Out For Low Pressure Systems

I would like to take this opportunity to share my experience with others.  Hopefully someone suffering from these symptoms may find this information useful and the following links educational, for feeling like death is imminent can be an unsettling experience.

This Wednesday, November 13th, I retired to the bedroom early in the evening, feeling especially tired and lay out my sleeping pad by the tall, opened bedroom window.  I sleep on the floor because  of my back and feel so much better for doing so, but sleeping on the floor is another story.

The bedroom window opens out to the large screened lanai over the pool.  The lanai is surrounded by Judy's herb and flower gardens which are in turn enclosed by a thick pine and saw palmetto flatwoods forest area.

When the moon is full the shimmering light dances across the broadleaf palmetto, reflecting nature's silhouettes on the swimming pool's surface.  Cool breezes laden with oxygen from the woods flow into the window and cover me while I sleep, filling my lungs with fresh, invigorating air.

Wednesday's weather forecast called for a low pressure system to move in from the north, rapidly covering the area with the year's first heavy cold air. 

Sometime, around three a.m. I woke, my St. Jude aortic pounding loudly, my pulse racing.  The front was coming through,  bringing with it forty mile an hour winds.  The tall pines swayed more than I'd ever before seen them sway.

My chest tightened as though someone was reaching around me squeezing me tightly.  But the cooler air felt good across my face and I rolled to my side to see if the mechanical valve would quieten.   The valve beat louder and faster and the pain did not subside.

Alarmed, I rolled up to my hands and knees, stood and walked into the bathroom to take a Losartan tablet as well as my beloved beta-blocker, Metoprolol.  Usually an extra dose will calm things down when unexpected heart pain hits.

Sometimes my medication induced vivid and colorful dreams can really jump the blood pressure and pulse, but I could not remember any such dream having taken place that night and my chest was much tighter than normal.  Was this an anxiety attack?  I'd not experienced this level of discomfort since my dissection but the sensation was much different than the aorta tear.

I sat down on the floor and began to do gentle stretching exercises, hoping to release the muscle tension.  No luck.  Turned on the Ipad's relaxing music station, and again no success.  Working with my breathing usually helps but not that night.  So I lay back down, covered up and waited for whatever challenge my body had in store for me.

Sleep eluded me for the next several hours and when daylight finally broke I was glad.  The pain persisted.  My blood pressure soared, especially the systolic.   I just knew the big aorta tear was around the corner.  Times like these are difficult because I can go to the ER like most everyone including the doctor usually suggests but doing so always results in a contrast dye CT scan.  I have been in renal failure already and absolutely hate the contrast dye.

Avoiding the ER is always my first thought because of my kidneys and because the doctors usually can not figure out what is happening anyway.  They give me some pills and send me on my way until the next incident where they run a CT scan, scratch their heads, give me some pills and send me on my way once more.

By early after noon the horrible pain was gone and I felt as good as ever.  The weather front had moved through and sunny, cool blue filled the afternoon skies.

Then it struck me.  I bet it was the weather.  Blame the weather.  It just made sense.  My mom and I talk about our mechanical valves always rattling louder during storms or when a system comes through.  I was almost sure my intense pain was do to the weather.  So I started researching the internet's library of barometric related health conditions.

Turns out I found the culprit, at least so I am convinced.

Looking to the NOAA weather site for barometric pressure tracking in Florida, I found that as the cold front came through the local barometric pressure quickly dropped by almost an inch of mercury over a very short time span.

As a scuba diver (pre-dissection) I was well aware of what differences in ambient pressure can do to the body.  Interestingly, an inch mercury drop in barometric pressure could be compared to climbing several thousand feet or more in altitude in a matter of minutes.

 As air pressure decreases, available oxygen also decreases.  Because my heart's output function is already extremely low due to my dissection, valve damage and surgery stress, it has a hard time supplying my body with the oxygen I need.  When, all of a sudden my body is screaming for more oxygen because the existing air O2 content has just dramatically decreased, my heart freaks out.  And wow, did it ever as the cold front was racing through.

Interestingly, my pulse really was not affected after I had taken the big blue pill at 3 a.m.  Metoprolol controls my pulse like a hen-pecked husband who is stifled by his over bearing wife.  But because my heart could not pump faster, it beat 'harder'.  Peripheral arterial vessels constricted and my systolic pressure shot through the roof.  It was like jamming on the brake and throwing down the accelerator all at the same time, a mega Valsalva maneuver.  Worst of all I had no idea of what was happening.

But now I do. And I want to share it with you, just in case you are ever faced with the same symptoms.

There is so much information on the web also.  For instance, googling terms like 'barometric hear attack', 'weather related health issues', and 'barometric migraine', I came across many interesting sites, including;

• A great blog post by Rashid discussing heart attacks and barometric pressure,
• Reuters Health post on barometric pressure and heart issues,
• Nature's International Journal of Science post on temperature, pressure and heart issues,
• Dr. Oz's comments on the same in the Huffington Post,
• A list of cities in the U.S. with the smallest barometric pressure changes,
•  and another post on barometric health issues by the Mayo Clinic.

As the cold front passed, the barometric pressure rose with the influx of clear, cold air and my heart and chest, felt so much better.  My blood pressure settled to normal.

Frighteningly though, there are plenty of studies and data to show that cardiac fatalities do occur on a frequent basis associated with weather systems arriving and departing.

I truly believe I am lucky to have survived the first real cold front of my post-dissection life.

Unfortunately I am not sure what to next time a fast moving cold front comes through.  I may shut the window, hoping the enclosed house will mitigate the sudden drop in pressure and allow me to acclimate to the pressure drop somehow.

I may hide under the covers and pray, or take a hot shower, or who knows.

If you have suffered similar barometric attacks I'd love to hear how you deal with the frightening symptoms.

Sheeez.  Living with Marfan, connective tissue complications and a dissected aorta is a challenge.

But I am up for it so bring it on.

A Marf Morning Musical; Marfan Syndrome Issues

Here is a short parody about waking up, a blend of ballet and orchestra in the bedroom.  I will call the typical daily event my "Marf Morning Musical".  Enjoy!

Drum rolls start as my Coumadin dose is now due and without the beta-blocker my St. Jude aortic valve is clicking louder and louder, faster and faster.  The St. Jude drum section wakens me from a fitful sleep of wild, medication induced dreams.

The only way to quiet the drum section is to take my meds.  That means getting up.  So I stretch and the stringed up sternum section sends a loud thunderous pop, louder than the St. Jude drums, as my unstable sternum pops open once more, as it does every morning.  Added to the sternum pop is the prolonged and melodious 'owwwch" coming from my lips as the chest cage breaks apart.  It has been two years since the last cut through and still no healing (Thank You connective tissue disorders!).

Of course the pain from the popping sternum sends the St. Jude valve section into wild non-rythmic AFIB or VTACH beating, changing the beat from a slow 4/4 to a rushing drum roll.  Now I know I must quickly reach the medication drawer and slip a big blue pill under my tongue.

I roll over to my hands and knees, up from the floor bed pad I've made because my lower back detests the bed mattress and push up to a standing position, taking the first few steps towards the bathroom and the pills.

Ker-pop, ker-pop, ker-pop echos the sound of me walking across sheets of bubble wrap strewn across the floor.  Of course there is no bubble wrap laying anywhere in our house.  But my knees, ankles and other joints must go through their daily popping, releasing all the body gas built up in the joint sections.

But with the ker-pops and St. Jude valve section in full play, my seemingly beautiful and graceful dance across the floor ends up with a loud crash into the bathroom door as the connective tissue in my ankle gives way and my tall, lanky frame flings furiously forward.

No, that is not blue make up covering my forearms and face, just bruises from the Coumadin regime and the morning smacks from the floor, doors, dresser and walls.

Things begin to slow down with my first cup of dark roast  in the French press and a hot shower.  Then then pick up again as the day progresses.

Such is the Marf Morning Musical.

I know there are lots of you out there who can relate.

It is good to know I am not alone with my music and dance.

Sunshine and Cardiovascular Health

I find peace and God along my walks in the deep Florida sunshine and quiet nature, with camera, walking cane and whispering salty breezes.

Cardiovascular health can be found in nature walks

For someone trying to preserve the integrity of a severely dissected aorta, low blood pressure and slow pulse are so very important.

Nature's indescribable display of colors, forms, geometry, music and scents woven in simply complex life create peace for my soul, and I feel like there may be a chance my heart and cardiovascular system may hold on for a season more.

As can be found on the poetry page of my blog here, haiku and one breath words are my way of conveying the peace found along the path to you and others seeking cardiovascular health.  So here is my haiku for the Imperial Moth, Eacles imperialis and the willow tree, Salix sp.:

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Life Shared
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dirt, dew, light fusion

shy moth and willow spring forth

weaving a story

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Flagler Beach, Florida, October 2013

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May you find peace for your heart today outside in the sunshine.

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.

• 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.