Saturday, May 17, 2014

Post-dissection Repair Everyday Challenges, Vertigo and Dizziness

I don't want to fall so I pace myself and have learned how to look for the signs of a vertigo or dizziness onset.
Post-dissection repair cycling has its own set of challenges, but is good PT and good for my mental state too!
I am also learning to recognize some of the post-dissection repair triggers.  This is good because I do not want to fall.  Falling and cutting myself or breaking a blood vessel while on Warfarin could be bad.  As it stands I still have a bruise and lump on my left arm after a small tumble almost two months ago.  Any type of trauma where bleeding is involved can have serious results while on anti-coagulants.

Most of the time I do not black all the way out and if I do it is only briefly so it seems.  But the sensation starts with a quiet ringing in my ears and head.  Very quickly my vision goes from ok to grey out.

When this happens I need to lower my center of gravity quickly.  Sit down Kevin, sit down now.  Falling over while sitting on the ground is much easier on my body than a tumble from way up there where I usually am in a standing position.

These sessions typically occur when I transition from laying or sitting to a standing position, though they can happen anytime during the day.

I suspect that they are a result of my very low pulse rate (less than 40) and lower blood pressure than what I have been used to for most of my life (now running 110/65).  Possibly though the dissected descending aorta and the huge false lumen hog most of the available blood leaving my heart, also contributing to the dizziness.

Either way, it is the new normal for me.  I am slowly learning to deal with it.

If I feel like I a going to pass out I sit or lay down.  I just need to reduce the risk of trauma from a tumble.

Honestly, a couple of times when I was out hiking last year I got so dizzy for so long I thought I was going to the great hiking trail in the sky, sat down, held the cross and hearts hanging around my neck and waited.  But the dizziness left, like it always has so far.

Yesterday on my bike I had a similar incident and had to sit down until the vertigo and fuzzy vision left.  Falling off a bike would be bad too.  So as soon as the ringing starts in my ears and the tingling begins in the top of my head I find a nice grassy area, dismount and plop myself down.

The doctor and the medicine containers all warn of dizziness.  Yes, the whole thing is an inconvenience  but it is the new normal.

So those of you out there with seriously dissected aortas on all types of meds who live with the lightheadedness, I can relate.  You are not alone.  It is a strange new normal.

Wednesday, May 14, 2014

Daily Medications and Travel, Don't Leave Home Without Spare Meds!

Travel is not something I frequently do.  My body is not really up to the stress and of course, not having a driver's license, transportation is difficult if not via a bicycle or hitched ride.
My recycled travel pill bottle
But when I do go somewhere I need to make sure I have access to my medications.

Like clockwork, my heart beat begins to accelerate once the morning dose of metoprolol starts to leave my system.  Likewise with a diminishing concentration of Losartan, my blood pressure rises.  If I do not take my afternoon beta-blocker and blood pressure meds then I invite a good chance of AFib or VTach to kick in.  VTach and AFib are bad influences on a shredded, torn aorta.

Even more important is the Warfarin.  A mechanical aortic valve requires clot-free surroundings and freely flowing blood to operate properly.  Clots like to form around foreign objects inside our bodies.  Warfarin helps protect me from valve issues by mitigating clotting action.

Leaving the house requires me to find my way back to the house in time to stay current with strict medication routines.  This applies to any travel away from the house, be the trip one mile or one hundred miles in distance.

At the end of the day I need to find my medicine.  My life depends upon it.

Even the area where Dr. Bates installed the Dacron graft over my ascending aorta, begins to hurt if I skip a dose of Metoprolol or Losartan.  I am not talking about a three or four pain level either, rather one much higher up on the pain scale.

In order to alleviate potential pain and panic I now carry a one weeks does of all my meds everywhere I go.  Sure I probably don't need that much with me at all times, but having  a 'safety net' of spare meds alleviates potential panic.  Panic generates adrenaline, something I don't need with a dissected descending aorta.

I've been carrying these spare meds around in an old prescription pill container.

There are probably nicer or better spare end cases but I like my old pill bottle.

Just knowing my magic pills are there, inside the plastic bottle is a comfort.  When I leave the house without them I always immediately find a way back home to retrieve them.  I honestly can not imagine not having them with me, even on a short trip across this side of town like a walk up to the corner library.

Just shaking the container and hearing my pills rattle around inside is often the only thing I need to do in order to slow my pulse down.

Sometimes something so seemingly insignificant and little can really make a difference in the quality of life for people with disabilities, like myself.  

Friday, May 9, 2014

Getting Through A Connective Tissue Disorder Day

My embolistic hit brain needs things laid out clearly or panic, vertigo and unending uneasiness set in.  I sit down then, put my head in my hands or lay down under the window and become immobile.  At least I want to.
My Connective Tissue Disorder Life Day-Bloom
Many times the lack of clarity leads me to wander around the room or house through a confusing mental fog.  I need structure and order during my day.  I need an easy to understand roadmap that helps me keep moving forward, something to held avoid the confusion stroke related dyslexia and ADHD brings.

So when I lay awake at night staring at the stars out the window, I see my day and my week and the year in the form of a big circle, like a clock, probably due to looking at clocks now for fifty seven years.

Even fresh ground coffee in the French press does little to clear out the fog.

But pictures so help.

Since I love flowers I thought I would take the 'clock' concept of a day and turn it into a blossom, a bloom, a 'day-bloom'.

I have printed my day-bloom out and attached to the kitchen refrigerator.  The kitchen refrigerator is an important place to me because it is where I usually end up after wandering around wondering.

When I open the stainless door a flood of bright light rolls out of the cold ice box.  I usually stand still for several minutes mesmerized by the potential snacks and cold air enveloping my feet.  Then the thought of sardines in the pantry and the humming sound of the refrigerator compressor kicking in shakes me out of my zombie like state and I shut the door.

Now my day-bloom will be there, right in front of my face to remind me of what I think I need to be doing.

Yesterday while riding in the vehicle with a friend I kept falling forward and couldn't keep my eyes open, probably because events of the last couple months have given me an excuse for not focusing on my day-bloom schedule.  Remembering the doctor has told me that my number one job was to 'stay alive', I am going to try and stick to consistent physical therapy, exercise and rest.

Using pretty pictures is more fun than a bulleted list.

I can't even seem to keep my eyes open to write this post and it is only 10:20 am.  Struggling with the side effects of the meds controlling a barely beating but loudly beating heart when it is behaving is tough.

Now, life seems like  it may contain only a few really important things; like family, friends and Love.

My day-bloom reminds me of this.

Even when I do not have my reading glasses with me.

Because I can see the hearts and the smiling sun.  And one more smile for me.

Wednesday, May 7, 2014

Magna Cum Laude and Off to College, Daughter With Marfan Syndrome Overcomes Challenges

Jincy received the Magna Cum Laude award last night during her Mantanzas High School awards ceremony.  It brought a tear to my eye.

Daughter with Marfan Syndrome Graduating Magna Cum Laude
Although she is just seventeen, turning eighteen this summer, she gives me and so many others inspiration each and every day.

After dual enrolling in college while a junior and senior in high school, she faced academic challenges, but despite being several years younger than other students Jincy went on to achieve almost a 4.5 GPA where 'A' = 4.0.

This was notwithstanding the fact the fact that she was right in the middle of her dad's long, hard post dissection recovery period with multiple heart surgeries.  She subsequently learned that her and her brother's aortas were not only beginning to dilate but that she was also faced with other quite difficult Marfan Syndrome health challenges.

Jin volunteered with the Humane Society, working with homeless dogs and cats throughout her late teens, worked with orphans in Honduras and volunteered with Marfan Foundation benefits like the Tommy Tant Surfing Classic held every year in Flagler Beach.  She wrote poetry, taught herself guitar and ukelele and cleaned her elderly grandparents house.  As of late she has been a 'mother'-big sister to her teen nephew and niece whose mother recently suffered a brain aneurysm and has always tried to advocate for disadvantaged groups of people, no matter what their issues were.

Sure, she showed her spirit in ways I did not approve of, like the time when she climbed out her window, leaving a bunch of pillows under her bedspread and a pumpkin pie under the sheet for a strange looking head and face.  She climbed up to the top of our two story house when two years old, seriously frightening her mother and would take off as a toddler, crawling straight out into the ocean waves.

I envy her youthful and unquenchable zest for her adventures and life ahead, around the corner.

She wants to major in Communications while attending University of South Florida (USF).  Her studies will continue to be a challenge for her and she will need to work hard to support herself economically as well as academically.  I am thankful USF is providing as much help as they are.

But she can do it and the desire to overcome her challenges is what fuels her drive and successes.

I am so proud of her.  For now she has showed those Marfan challenges just who is boss.