I'm living life fully despite chronic disease. Love; an adventure a day, Wild Nature art, short verse, Florida, plants, green roofs, living walls & permaculture gardens, swamps, beaches, native plants, wildflowers and friends. Come explore real life and learn about community sustainability through nature, art, chronic disease lifestyle management & urban sustainability.
Seeking and Arrival. Aortic Dissection and Marfan Life Challenges 2015.
2015 is here! Wow. I dissected back in 2011, having my last open heart surgery in 2012. Honestly, the thought of living this long never entered my mind and I remember weeping silently one day at thought of not seeing the two teens up and grown.
Staying warm to keep Raynauds at bay in the hot Florida sun.
But Jincy is off at the university and well on her way to becoming self sufficient. Ruairi took his first big overnight road trip all by himself last week. His grades and scores are high enough to get him through college on scholarships and grants.
I still need to finish my what to do when I die notebook, but for the most part all the paperwork is in order. When this last effort is complete another worry will disappear.
For the most part the 'now I lay me down to sleep' panic attacks are still there. But now I am able to accept mortality possibility with a 'thank you for another day' and a 'frankly my dear, I don't give a damn', shrug.
No, I am not giving up. Judy and I have a lots to do together. I would like to see the kids finish university and enjoy the grandchildren! But I am wore down from the stress of worrying about living each hour like it is my last.
Time flies by so fast. Best spend time not worrying so much.
2014 was hard and I was hoping 2015 wold be a fresh start.
And 2015 has already taught me a lot. But I was hoping for a stress free, better than last year twelve months, season in life.
Yesterday Ruairi said, 'Dad, the butter is soft'.
We use real butter, I told myself. Real butter is always soft, right?
'Is the refrigerator OK?', Ruairi asked.
Real butter is always soft, I told myself again. If I say that enough the refrigerator will be ok.
But something was really wrong with the refrigerator. I knew it. The unit had been making funny noises lately, kind of like someone throwing the small cast iron skillet around the kitchen sound. I thought the problem would go away if I played Carlos Santana long and loud enough.
It Never ends, I thought and shrugged. I never arrive. I will never get there. New roadblocks pop up every day! Heck and throw in some '#$%&(2@$XXX' for good measure. It never ends.
Don't they realize… 2014 is over!!!
Lets see. Last year we repaired or replaced every appliance in the house, except for the garbage disposal and it is next on my list because it too, like me, is dysfunctional.
In addition to the garbage disposal, the outside air conditioner compressor electronics went out. We fixed them.
The inside air handler furnace in the garage caught on fire and burned out the entire unit. We fixed it. Thankfully the house did not burn down.
The washing machine died, dead in the water. We fixed it by ordering and replacing the water pump. Try disassembling one.
The clothes dryer stopped drying clothes. Believe it or not repairing the clothes dryer was more difficult for the family to fix than the washing machine.
The refrigerator went out in early spring. We fixed it.
The dishwasher died. We replaced the dishwasher.
The microwave door fell off. Turns out it is more expensive to replace the door than buy a new microwave. We replaced the microwave.
The swimming pool pump caught on fire and burned out. We replaced the swimming pool pump.
The stove quit working. We found a used stove. It does not matter to me that it is white while all the other appliances are black or stainless. The stove works. Well, all except one eye.
The fiberglass shower stall cracked. We fixed it.
And that's just the house. The front end of the car had to be completely rebuilt. We installed a new windshield as the old one's crack just kept getting bigger. The stupid under sized spare tire got tossed and new rims and five new tires were purchased along with a ton of new engine parts.
I feel so much better having a full size spare in the trunk, especially since Ruairi is driving so much. We actually put the small spare on one day and it wouldn't even keep the car frame up off the asphalt. But I can say unequivocally, Ruairi has learned so much about being tool handy. Learning about replacing skate board wheel bearings opened many handyman doors for him.
Speaking of automobiles, the State of Florida permanently revoked my drivers license based on my medical condition. Not a suspension mind you, I am now a permanent 'driver-non-grata'.
Yes, I have figured out how to bike around town and I walk everywhere and feel better physically for it. Actually if I don't walk fluid accumulates around my ankles so I must walk every day as far as I can.
Collaterally, the loss of my drivers license after forty years of being a safe driver, affects my self worth much more than being any inconvenience to getting around.
Don't get me wrong though. Pedestrian life is definitely hard. Even with all the sidewalks around town, this city as well as most others I suspect, are not designed for accommodating pedestrians or bicyclists, especially disabled ones.
Cities are designed around the automobile. No wonder we have such a hard time transitioning to sustainable city life.
One is supposed to be in the prime of their life career during their 50's. Now if I have someone express interest in my expertise they disappear as soon as my 'no driver's license' issue comes up.
In all reality though I think I may be in more danger of dying from being hit by a car than my imminent aorta rupture.
But the wise medical review board for drivers thinks my existing aorta condition is best kept from behind the steering wheel.
And 2014 did bring a couple of significant bleed outs. One was so bad I had Ruairi drive me to the ER in St. Augustine. I honestly thought my dissected renal artery had popped. Turns out I lost about a quart of blood from an internal connective tissue tear. The blood sloshed around my waist for about a month.
Last Bleed Out Episode.
And talk about aneurysms, our second eldest daughter is still recovering from a brain aneurysm that left her almost blind. We took care of her two teens for half a year which was a true blessing, affording us the opportunity to really spend some quality time with two of our grandchildren.
My cardiologist says, 'we don't want to open a can of worms' when I ask him about what we should do for my large descending aorta and renal artery dissection. Then there is the carotid dissection that we haven't really started analyzing yet. Probably because my brain can not even wrap itself around that concept.
I AM so glad I've finally figured out all this is the result of a connective tissue challenge but I still have so many, add another 'so many; for emphasis, unanswered questions.
I just knew 2015 would be the year I could arrive at the answers to my health questions.
Last year I was able to at least label many of the questions I had about what was wrong with me.
My biggest challenges are (in order of severity):
1. a paper thin aorta that I can't do anything other than have the entire descending section replaced with a Dacron tube - I don't think I can do this. The Dacron graft on the ascending portion almost killed me while saving me;
2. vertigo to the point of having to sit down numerous times on my daily walks. Interestingly, I think it is a combination of being on the heart-lung machine for so long (pump head symptoms) and a eye-ear-brain short circuit.
Not only does my pulse of 40 beats per minute and low blood pressure make me dizzy, but anything complex sends me reeling.
For instance, walking on plain white concrete sidewalks is usually OK. But if I walk across intricately laid pavers I typically spin out and end up on the ground, sitting still with my eyes closed until the vertigo stops (hopefully). As a passenger in the car at any stop light I have to look away from the whizzing cars in the intersection or the vertigo starts again and BOOM my head is against the door.
Others have told me how the radio or even the telephone can be a trigger for vertigo.
So I've had to learn to look up when walking across pavers, praying the clouds shapes are not too complex.
Facebook and Twitter are gone from my phone now. The other day I opened up Facebook and had numerous notifications, somewhere around fifty or so. My brain instantly painted a picture of fifty small, smiling avatars each calling to me at the same time and BOOM BOOM I was on the floor again.
Facebook has allowed me to find seriously good, helpful support groups and I've made internet friends around the world. But I open the app and a cross between the feeling of laughing gas, a walk through the carnival's moving funny house wheel and an out of control ferris wheel kicks in. I have to find the floor fast and never go anywhere without my cane or crutch. Surprisingly, I have learned to do some cool baton type twirling with my cane.
Complexity of any type - visual, audio or motion based brings on instant immobility and a way too intimate relationship with the floor below.
3. immobilizing Raynauds Syndrome - once the temperature drops below 60 F my fingers and toes turn blue, I loose feeling and my pulse jumps into overdrive to try to pump blood into the constricted periphery vessels - there is not much I can do about this other than stay warm or get a job as an icicle (if no drivers license is required);
4. memory loss is so difficult for someone who loves words. At first the fear of Alzheimer's plagued me constantly. But now I recognize the inability to recall short term memory as one of the results of surviving those nights in the ER with a disconnected heart. The neurologist says 'cognitively challenged' as a result of embolistic events. I hear you Vincent.
5. depression. ugh. Depression really is a bad thing. Walking helps.
Thankfully there are those close to me who have gone through similar operations and cannot find the words for their thoughts sometimes and the vertigo and the other issues also. I am not alone with this challenge.
But I just KNEW 2015 was going to be better. 2015 was going to be the year I arrived. 2015 was the year of the destination.
Then on January 2nd the refrigerator broke. This was a sign of what was to come! I was floored (not literally this time but I did have to sit down).
I've got to get to a point in my life where I can focus on what my primary care physician says - 'your number one job is to stay alive, Kevin'. I need to focus on health, not on machines.
People look at me and see a tall, fit man. I've managed to control the beta-blocking result of weight gain because I walk so much. I look healthy. Because I look healthy people think I am healthy.
If I try to explain what I face daily most scratch their heads and think one word - 'hypochondriac'.
Or the evangelicals sometimes say - 'I am glad I did not buy into believing what my doctors told me'. I am tempted to ask 'then why are you dealing with those horrible hemorrhoids?' But instead I just smile and shrug.
So the world expects me to keep going at breakneck speed, machines and people both.
And to start the new year off right, the refrigerator broke. Not an auspicious start to an arrival year.
Today I placed a chair in front of the stainless doors and sat down, staring alternatively at the closed door, the bright fluorescent light inside and then the outside of the closed door once more.
I know nothing about refrigerators. I waited for the machine to speak to me and tell me what was wrong. My cocktail of heart and other such medications sometimes provides unique visions and I hoped for spontaneous enlightenment about freon and condensation and such. Where are you John Gorrie?
I can't buy a new refrigerator and would not even if I could.
Sitting in the chair I could vaguely see my reflection in the smudgy but pretty clean stainless door. I felt sorry for the man I watched in the door's reflection. Pity party time. But the more I stared the louder my artificial heart parts clanged (is there such a word?).
Sheez. I'll never get to where I need to be. I muttered. Stupid refrigerator. I need to be exercising my rotator cuff, not probing around inside a dead refrigerator's innards.
Then, as I opened the door once more the fluorescent light inside almost knocked me over - this brilliant, bright light - road to Damascus bright, light popped on and shown deep into my head. Thankfully it did not blind me. More thankfully it was not so complex so as to cause me to fall over out of the chair onto the floor.
It was one of those really plain, simple pure white concrete sidewalk moments.
I had already arrived.
All that broken appliance stuff from last year really was meaningless in the big picture. Happiness, wealth and fortune is not really found in possessing fine appliances and a driver's license.
I may be poor but I am really rich. I am a rich pauper. I am truly blessed.
As I sat there staring at that piece of stainless junk….. wait, let me re-phrase….
I had just been gifted over 36,000 heart beats and it still just a little after noon. Add to the 36 grand heart beats another 5,000 or so breaths.
As Jesus says, 'Peace, be still'.
Thats all that matters. I am alive. I have family who are healthy and happy even though they too are struggling with their challenges.
The steel will rust and plastic melt. If I wait until the machines and people are perfect then I am 'SOL'.
I really have got there. I found the end of the rainbow in 2015.
So for the rest of the day I said 'thank you' after each breath. I tried saying 'thank you' after each heart beat but found myself on the floor again. Keep it simple. The destination was never really that far away. In fact the destination I was searching for was always near by. Dorothy's face floated by.
Yes, my depression won't go away and neither will my dissected aorta or my Raynauds or that horrible vertigo or my friend's hemorrhoids; and the appliances and car will keep breaking.
But all that I asked for - the space to work on my challenges - is already here. I just had to accept it.