My Dissection Timeline

Last Updated 11/02/2018

11/28-29/2011 Experienced Aortic Dissection from root to foot, ascending portion replaced with Dacron Graft. Aortic valve replaced with St. Jude valve.  Surgery lasted ten hours at Memorial Hospital in Jacksonville, Florida.

1. Near death experience in the operating room

11/30/2011 to 12/05/2011 Recovery in ICU at Memorial Hospital Jacksonville, Florida

1.      Awoken by Dr. Bates gently shaking my leg I quickly faded back out into sleep
2.      My second memory was seeing Judy standing by my side, holding my hand.  I then threw up, projectile vomit, all over myself

12/01/2011 Recovering in our 'new' home in Palm Coast.  Spending most days resting in the recliner.

• Having lots of night chills/sweats
• Need towel to sleep on at night, soak a towel several times per night
• Slight temperature keeps afflicting me during the day - 100F or so
• Home health care nurse - Ted Rhodes is concerned
• Started taking Tylenol three times daily to keep fever in check
• My chest, in the area above the heart incision, is beginning to turn red and become inflamed

12/02/2011  Cannot keep fever down below 101 even with Tylenol, going to go to the thoracic surgeon's office in Jacksonville @ Memorial Hospital

• saw nurse practitioner, she squeezed/pressed down on the swollen red area above my heart and surgery incision
• nurse practitioner prescribed antibiotic and sent me home with instructions to watch the swelling red lump on  my chest

12/03/2011  Home health care nurse, Ted says the chest swelling is a bad infection and for me to get to the hospital, but it is the weekend....

12/04/2011  Getting sicker.  Can't keep fever down, even with Tylenol.  Chills, night sweats and loss of appetite

12/05/2011 Both Judy (wife) and Ted (home health RN) say I must go back to hospital.  Judy and I head to Jacksonville's Memorial hospital and thoracic surgeon's office.

• Surgeon's physician's assistant immediately takes scalpel and cuts open the swelling lump on my chest over the aortic repair incision, relieving a significant amount of puss and blood
• I bite my tongue as he is cutting into me and squeezing without any pain killers,
• PA tapes me up and sends me over to Memorial Hospital next door.  I am admitted and quickly put on antibiotic IV

12/05/2011 - 12/09/2011  On antibiotic IV at Memorial Hospital in ICU

• Received large amounts of strong antibiotics for a week through IV.  
• CT Scans and other diagnostic tests to try and determine why I had a chest infection
• Infections symptoms subside with massive doses of antibiotics
• I now have a 3 cm diameter hole in my chest where the PA cut out the infection
• Equipped with wound vac to help the 'hole' in my chest heal.
• Prescribed antibiotics sent home for home health care on 12/10/2011
• I believe it was during this stay that my sternum was first ripped apart from being wired together during first surgery.  I was being wheeled, in my bed, down the hall by an assistant when she asked me to hold the rolling IV stand as she could not guide my bed properly as fast as she was pushing me.  Stupidly ( I was on pain meds and couldn't think clearly) I complied and when she took off pushing, my arm jerked back, pulling my chest and sternum apart.  I could feel a 'pop' and rip in my chest.  Today I still have an unstable sternum.

12/10/2011  Home in Palm Coast under supervision of home health care RN, Ted Rhodes- wearing wound vac to help hole in my chest heal - hole was result of PA cutting out infection with a scalpel in doctors office (without pain killers btw) - bad aspect of would vac was my hairy chest kept the vacuum from sealing properly so the nurses would apply more and more latex tape around the wound vac.  Turns out I am allergic to latex, especially latex tape!  My entire chest broke out in a bright red rash  The rash was so painful I felt like skinning myself!

Temperature will not go below 99-100F.  Scheduled visit with thoracic surgeon, Dr. Bates, in his Orange Park office on December 23, 2011.

I hate the wound vac!  First of all I ended up being allergic to the latex tape used to attach the wound vac to my body.  They whenever the wound vac was changed, pulling the tape off my hairy chest was excruciating.  Because of the hair on my chest, more tape was added and the problem compounded!

Ted Rhodes, RN has always been so very encouraging and helping me through this difficult time with daily vital checks.

12/28/2011 Drive to Thoracic Surgeon's office with Judy.  Sternum unstable, Dr. Bates very concerned about temperature (fever) and wants to admit me to the hospital for observation and tests.

Looks like I will be in the hospital for the holidays.

12/28/2011  I feel like this is the beginning of the end.  Once I go back into the hospital for another open heart surgery, my chances of pulling through it are significantly less than they were with the first operation.  Oh well.  Without another surgery I may die from endocarditis.

Somehow I know everything will be all right - at least this is the way I am thinking right now.  But there is also the big unknown.  The beauty of it all is that I will be under anesthesia and will be unaware of the pain during the surgery.

Note:  I did not have a near death experience with the second open heart operation.  My heart was not put on by-pass the second time such as it was during the first emergency surgery.  I do not think I came anywhere near as close to death this second time as I did the first, though the surgery was still very 'iffy' and if the infection had been too bad, the surgery could have necessitated graft removal and replacement of aorta.

Very, very long and lonely seeming recovery with lots of quiet time for rest.  The hospital was undergoing remodeling and I remember the newness of smells (like paint) and the noise of construction.  I enjoyed my recovery at Orange Park Medical Center so much better than at Memorial Hospital.  Staff were so different at OPMC, so much more 'in-touch' and caring it seemed.

More coming soon as I find the energy to type and deal with the painful memories......

2011-2012 to be filled in soon

February and March 2012 were months where I was confined to the living room recliner most of the tine.  During this period I underwent intensive anti-biotic and anti-fungal IV treatment.  Picc lines were installed in my right bicep area and threaded up near my heart.  Periodically the lines would be removed and replaced to prevent additional infection.

During the time of my IV treatment Judy would help with injecting saline solution and Heparin to keep the Picc lines from clogging prior to hooking up bags of Diflucan (Fluconazole), and other anti-fungal and anti-biotic medications every eight hours or so.  Each IV session would last anywhere from one to two hours.

Weekly trips to the Infectious Disease doctor in Jacksonville wore both Judy and I down, not to mention the automobile.  I was always amazed to see the prevalence of HIV literature spread across the ID doctor's office, glad and hopeful that the organism attacking my Dacron aorta graft was not permanently established in my body as the HIV virus was in others.

April 2012 arrived and so did the time for ending IV treatments.  This period time was very stressful.  I did not know if the treatments had been successful and only time would tell if the endocarditis was healed.

Ted Rhodes removed the Picc line in our home.  I will never forget the strange sensation of the tube being pulled out of the vein leading to my heart.

The thermometer went everywhere I did and I constantly took my body temperature checking to see if any elevated temperatures would be indicative of a returning infection.

But the IV treatment had done its job.  Infection was gone, at least for the time being!

05/14/2013 CT Scan at Flagler Hospital - see story here

05/22/2013 Off to cardiologist in St. Augustine for follow up consultation about CT Scan from last week - will find out if aorta is still dilating - descending aorta is still dissected but somewhat stablized

08/04/2013 - On vacation to Tallahassee at parent's house - ER visit.  lots of blood in urine, I suspect renal aneurysm, turns out CT scan shows kidney stone - no stones passed, still having blood in urine at 08/12/2013

08/16/2013 Renal Echocardiogram scheduled in St. Augustine.  Right renal artery is dissected, new echo will show if left renal artery is intact or dissecting.

08/21/2013  Trying to swim laps for my cardio since it is too hot to walk.  The other day I tried to make a road trip with a friend to Ft. Myers and ended up lying down on the asphalt thinking I was going to die.  Became lightheaded and disoriented, I think due to heat and exhaustion.

9/4/2013  Trip to St. Augustine with Ruairi to see Cardiologist, Dr. Lochandwala.  Doc says that I do not need to see him for a year.  He wants to put stints in the descending dissected aorta but says there is too much dissection to easily stint.  Moreover the dissection extends into my renal artery and down into leg.  Doc says that attempting to insert stints would be possibly 'opening a can of worms'.  Also, there is a coronary pseudoaneurysm that appears to be stabilized so managing both issues with my many medications is the best route to take he says.   This is good news and this is bad news.  Now the only improvement will come from the losartan or by a miracle or through healing of some type, natural or miraculous.  Live each day to its fullest!

9/20/2013 Some days my mechanical aorta valve beats so loud.  Seems when a weather front comes through or full moon is in the sky the valve clicks so much louder.  Trying to fight fatigue.  Someone on a Facebook Marfan support page compared the fatigue to 'swimming in jello'  and that analogy is so accurate!  Trying to do physical therapy and exercise daily - stretching in the morning and gentle swimming in the afternoon.  Keeping diet guidelines simple - mostly eating fruits, nuts, vegetables and fish.  INR has been a challenge to control lately.  Last time I checked INR, a week ago it was above 6 and I was urinating blood.  Eating more greens and broccoli to offset the high INR.

9/21/2013 My right wrist and right ankle have stayed sprained all my life.  They are painful everyday, from the moment I wake up until the moment I get in bed at night.  I do not know what to do about them.  I do wear stretchy ankle supports most days but these also restrict blood flow.  Pain killers help but they also constipate me.  Grin and bear the pain is my motto!

9/24/2013 Scheduled Genetic testing for Jincy and Ruairi for April 2014 - takes such a long time to see a Geneticist.   Called Social Security today to ask about Medicare.  For me, living here in Florida, there is a two year waiting period after my entitlement date before I am eligible for Medicare since I am under the age of 62.  This means I am without insurance for two years since disability begins.  I really do not understand this policy.  Sure compounds hardships.

9/26/2013 My heart has been aching lately.  Mostly in the afternoon after a day's activities.  Last night it was hurting when I laid down in bed to go to sleep.  My sternum always aches and the heart ache is a different pain than the sternum ache.  Sternum still clicks and is unstable.  INR has dropped down from 6 to a more manageable level.

9/30/2013 Sleeping on yoga mat last three days.  My joints and back can not take sleeping on the bed. Hard to get used to at first but am feeling a little better in the morning.

10/02/2013 - Government is shutdown - this actually has been stressing me - kinda silly because I know it will all work out, but stresses me and I can feel my pulse jump around.  Medium afib episodes three times during the day.  These last about four or five minutes and are really scary because it feels like something else has taken control over your heart and the wild beating might cause a heart attack.  Such is life with Marfan Syndrome and a dissected cardiovascular system.

10/11/2013 - Trying to sleep on my side last night I felt my sternum break apart again where it has been trying to heal.  It was a 'snap, crackle, pop' feeling!  The surgeons have cut through multiple times and it never has really grown back fused even though it is wired together.  This is a really freaky sensation to have the ribcage feeling ever so 'floppy'.  But again, more importantly, it is good to be alive.

10/13/2013 - I think my INR may be creeping up.  Lots of small bruises have been forming on my arms and I am starting to feel that feeling of perpetual fatigue once again.  Will eat more greens and check INR this week.

10/16/2013 - Couple things this week.  My blood pressure has been creeping up and I am not sure why.  Systolic has increased by about 20 points.  My diet changed slightly due to company and I have not done my PT as faithfully.  My ankles were extremely swollen last night and for the first time in a long time I was really scared when I went to sleep about dying, for some reason.  I pretty much deal with possibly dying but last night I started thinking about my teens and Judy and all the things I really want to do before I pass.  Just thought I'd mention it. K

10/17/2013 - lots of fear of the night....not sure why, but I dissected at night.  Cannot sleep much.  it is 4 am now and I've been up for three hours., Legs and ankles still swollen but a little better.

10/18/2013  - trying to do stretching in the mornings - on the bedroom floor.  Been sleeping on the floor at night - seems to help my back pain.

10/19/2013 - supposed to start jury duty Monday.  Will see if I pass out not being able to take multiple naps and if my bad short term memory disqualifies me.

10/30/2013 - no jury duty - excused.  Been having a lot of fear lately just before going to sleep bout dying.  Also chronic fatigue is back, I had to take three long naps yesterday where I just fell asleep right in the midst of what I was doing almost.

1/15/2014 - Kathleen Mcllean passed away during surgery to have her descending aorta repaired.  Kathleen had shared her experiences and hopes about angels with me several times.  Her passing frightened me as I know one day I too will have to have the same highly risky surgery.  I've also been struggling with high systolic  blood pressure readings lately - mostly staying above 140-150.  The doctor wants to keep the systolic around 110.  My diet is good for the most part but I am letting sodium slip back in, in the form of added salt.  Healthy diet - living is difficult for me as I love to eat.

1/29/2014 - so struggling with depression lately - feel like no one has a clue to what I am going through.  UGH.  But will make the best of this…. :) :(

03/24/2014 - glad cold gloomy weather is almost over.  Cold weather and change in barometric pressure causes my heart to AFib or take off racing.  My hands stay so cold.  I am 57 years old now!  Yaaay!

06/1/2014 - So glad warm weather is here.  Cold weather was taking its toll on me.  My heart seems to have leveled off as the temperatures rise.  I am now on Medicare though I do not know how to use the benefit.  I do have a couple appointments this month so I will be learning soon.  I need to write a list of my questions and concerns for my primary care physician as I would never be able to remember 'what ails me' if I just walk into the examination room.  The list would include some of the following:

• My right foot keeps growing longer while my left foot is shrinking.  It is the right iliac artery that is dissected down through my leg
• My right ankle and right wrist stay painfully sprained most days
• Sternum is still not grown together and 'clickity clicks' as I turn my torso  or move my arms.  This is especially noticeable at night
• My confusion level stays high.  I am not sure if it is the statin drug I am taking for my cholesterol or the same old embolistic event damage incurred during my surgeries
• Chronic fatigue
• Depression, serious, severe depression sometimes.  I feel isolated.  With my driver license taken, I am totally dependent on others for transportation or the bike.  But my bike is falling apart.  The chain and sprocket are so worn that they slipped right in the middle of a road crossing the other day, causing my safety concern.  I am saving up for a new bike
• AFIB and VTACH can arise at any given moment, sending my heart into wild palpitations 
• Dizziness and vertigo both spin my head and blur my vision
• Ugh!  I can't remember how to spell or what words to use when writing
• Slurred speech and stuttering

07/27/2014 - The hot summer is so good for my blood pressure.  Seems like the warmer weather facilitates blood flow through my extremities, lowering my blood pressure.  My systolic is staying around 110 now while my diastolic is usually in the high 50s range.  This is 50% lower than winter readings and I can feel the difference in my heart and body.

09/26/2014 - Ugh - Hemotoma forms on right shoulder blade as a result of torn muscle - loosing lots of blood, fainting and dizzy.  Ruairi drives me to ER in St. Augustine and I see cardiologist on the 22nd.  Read more here: http://aorta-tear.blogspot.com/2014/09/dissected-aorta-and-hematomas-keeping.html

03/18/2016 - Moved to Fort Myers.  Raynauds has all but disappeared.  With the warmer winters I've only has a couple minor episodes.  Discontinuing Amlodipine.

02/22/2017 - Time flies by - Met Steve Gee last year in downtown Fort Myers for coffee, met Jodie Wilcox on Sanibel for coffee too!  Children are off to college.  My last CT scan results showed generally stable big descending dissection down into renals and iliacs.  Gallstones too - ugh.  Blood pressure under control generally.  Weight optimal and exercising as I should with lots of walking.  Love nature hiking.  Occasional hematoma that can become painful and persistent - have gone to ER here in Fort Myers for such.  This is coumadin life for sure.

11/02/2018 - Off aspirin.  After seven years of daily aspirin my stomach has started bleeding episodes.  Endoscopy scheduled for December.  Kidney pain still prominent from renal dissection.  Cognitive - pumphead challenges maybe a bit more obvious to me.  Must take daily naps. Really working on healthy diet.

OK that's a start! :)