BIG NEWS!!

after six years, i am leaving jacksonville, fl.

no idea what is next, but i am moving back to syracuse, ny to take some time and figure it out.




The following responses to my announcement summarize my thoughts:

doreen (cousin)
“be proud of your accomplishments in jacksonville. you came as a young lady and are leaving as a wise woman. you have earned your advanced degree in life.”

billie (friend)
“best wishes. i will miss you. i am glad you are doing what you know is best for you at this time in your life. take good care.”

jeanette (colleague)
“i just want you to know that you a) made very important, concrete positive impact in this community and b) I will miss you. you are an amazing person and I know that the future holds many wonderful opportunities for you both professionally and personally!”

i plan to leave jacksonville sometime in october.

cardiomyopathy CURED?

best news in months

On June 11, I found out the results of
my most recent eccocardiogram and twave tests.

And no, I did not see Dr. Bling.

Got the best news in months -
Not only do I feel better,
but I am g e t t i n g b e t t e r.

my ejection fraction is up to 35%
no defibrillator for now!

my junior prom pictured above


please note the
converse allstars high tops
with black faux-satin gloves


I don't quite feel like I did in high school,
but I feel better than I have in years.



next cardio appointment is in August. more then.

back to work report

On Monday, May 4, 2009, I returned to work as the public art manager at the Cultural Council of Greater Jacksonville! It have been on leave for six months. I have been with the Cultural Council for a bit over two years.




THANK YOUs

My coworkers at the Cultural Council are amazing. Since beginning leave, they have done everything they can to make my return to work possible, pleasant, and smooth. They have worked so hard to cover my responsibilities and to keep me headed in a positive direction. Bob, Amy, Betty, Sandy, Martha, Susan, Amy P, and Gerri - you are the best!!



(Pictured left to right: Susan, Amy, Bob, Martha)


I also wanted to mention a special "coworker" who made my world a better place - Sandy 2 (I have never actually worked with her, she covered my responsibilities when I was gone. Sandy 2 has been a fabulous "seat warmer", program manager, and friend over the past few months.) "Seat warmer" was her term, not mine.



Pictured: Sandy 2


The other half of Sandy 2 is Sandy 1 - our master chief. Sandy covered my immediate responsibilities when I first applied for medical leave. In various ways, Sandy has been with the public art program since the beginning and is the half of my brain that I have forgotten. Thank you Master Chief! Sir! Mam'!



Pictured: Sandy 1


A huge THANK YOU to my colleagues at the City of Jacksonville. Although I was on unpaid leave, I was eligible for the "Critical Leave" program that converts COJ employee's leave donations into a paycheck for me. To the many COJ employees that donated to my leave bank, "Thank you for your generosity. I am so very thankful for your kindness and support. Thank you a million times."




SO HOW DID IT GO??

It was Grrrrrrrrr...GREAT! I could not imagine changing anything about last week. I don't move at the same pace, but I did what I could - turns out that meant 9am-5pm each day!! Not a bad start at all. By eating well, going to bed early, and by learning to manage my pace, I did quite well.



Pictured: Marilyn and I at Knitwitz.

Last, but certainly not least, I wanted to thank my parents. My return to work would not have been possible without my parents. They are the best-est nurses I could have ever had. It has been a long road, but my mother and father have always been there for me. Happy Mother's Day, Mom! I love you!



Pictured: My parents at Jax Beach, FL.

Going back to work soon…May 4 approaches

Although my heart is still very weak, I am feeling better enough to return to work and a normal routine. My dog Brutus (below) has been my constant and faithful companion, but I yearn for human interaction and to return to the world of art.

Brutus and his favorite toy

I have been able to attend several art events in Jacksonville over the past few weeks. As I see friends and colleagues, many respond with, “you look great.” My common response is, “I have been on a diet that I don’t recommend.”

My new outfit for the Fowler Memorial Dedication.

I am slowly building up my stamina - right now I can go out for two-three hours before starting to "poop out". I have been able to go to an opening at the Cummer Museum of Art & Gardens, the Tillie Fowler Memorial Dedication (below), and the Cultural Council’s Arts Award Luncheon. I am learning that social skills are lost if you do not use them - even a brief conversation can be difficult to maintain when you are out of practice.

Tillie Fowler Memorial, Showing the Way

During the last couple weeks, I have felt more tired and slower. As the dose of heart and blood pressure medications increase, I feel weak and sometimes nauseous. Getting up from sitting is often followed by dizziness, which Dr Constantin says is normal. It doesn’t feel normal when I almost passed out shopping for shoes the other day. As I become used to the level of medications, the symptoms will subside.

Dizziness is a term used to describe everything from

feeling faint or lightheaded to feeling weak or unsteady.

Dizziness that creates the sense that you or your

surroundings are spinning or moving is called vertigo.

Although it may be disabling and incapacitating,

dizziness rarely signals a serious, life-threatening condition.

Treatment of dizziness depends on the cause and your

symptoms, but is usually effective.

Characteristics of dizziness may include:

* A sense that you or your surroundings

are spinning or moving (vertigo)

* A loss of balance

* Nausea

* Unsteadiness

* Wooziness

* Lightheadedness

* Faintness

* Weakness

* Fatigue

* Difficulty concentrating

* Blurred vision during quick head movements

Under normal circumstances, your sense of balance

is controlled by a number of signals that your

brain receives from several locations:

* Eyes. No matter what your position,

visual signals help you determine

where your body is in space and how it's moving.

·

Sensory nerves. These are in your skin, muscles and joints.

Sensory nerves send messages to your brain

about body movements and positions.

·

Inner ear. The organ of balance in your inner ear

is the vestibular labyrinth. It includes loop-shaped

structures (semicircular canals) that contain fluid

and fine, hair-like sensors that monitor

the rotation of your head. Near the semicircular

canals are the utricle and saccule, which contain

tiny particles called otoconia (o-toe-KOE-nee-uh).

These particles are attached to sensors that help

detect gravity and back-and-forth motion.

Feeling of faintness

"Presyncope" is the medical term for feeling faint and

lightheaded without losing consciousness. Sometimes nausea,

pale skin and a sense of dizziness accompany

a feeling of faintness. Causes of presyncope include:

1. Drop in blood pressure (orthostatic hypotension).

A dramatic drop in your systolic blood pressure — the higher

number in your blood pressure reading — may result in

lightheadedness or a feeling of faintness. It can occur after

sitting up or standing too quickly.

2. Inadequate output of blood from the heart.**

Conditions such as partially blocked arteries (atherosclerosis),

disease of the heart muscle (cardiomyopathy), abnormal heart

rhythm (arrhythmia) or a decrease in blood volume may

cause inadequate blood flow from your heart.

**That’s me.

As I prepare to return to work, I am planning how I will do things differently, more efficiently, less stressful. I am normally a “let-me-do-it-all-myself” worker. This illness has reminded me that I can’t do everything myself. I hope to start slowly and be able to build up my stamina and strength. I am certain my supportive colleagues will help me along the way.

One step in front of the other…

Here are a few additional images I have taken over the past month.

Kingsley Plantation

My parents at the beach

Flamingos at Jacksonville Zoo




Loop Train at Jacksonville Zoo

broken heart update

Welcome to My Broken Heart Blog.

This entry is another stop on a long journey.
I am definitely learning patience as a result of this adversity.



Patience (pā-shəns) is the ability to endure adversity without irritation.
Also steadfast, diligent, steady perseverance.





Today, my parents and I went to see Dr Magnano at
Diagnostic Cardiology Associates (also Dr Constantin's group)
about the results of the t-wave test I had on Monday.




Dr Anthony Magnano ("The Electrician")

The t-wave alternans test was negative (the results we wanted) so I do not have an increased risk of sudden heart failure from cardiac arrythmia. Those who are found to be at high risk would therefore benefit from the placement of a defibrillator device which can stop an arrhythmia and save the patient's life. The test examines the t-wave of the EKG or the measurements of the heart's electrical conduction. See diagram below.

The test was very simple and non-invasive stress test. Twelve leads were attached to my chest and midsection (after the nurse roughed up my skin with sandpaper at each lead site - OUCH!). Then I walked at a slow pace on a treadmill for approximately seven minutes. The leads fed data to a monitor that recorded the electrical wave patterns of my heart. The computer analyzed the data and issued its finding - My results were negative.





T-wave alternans testing acts as a risk stratifier between patients who need implantable cardiac defibrillators (ICDs) and those who do not. Patients who test negative for t-wave alternans are LESS likely to require a defibrillator than those who test positive.


Dr Magnano, nicknamed "The Electrician" by Dr Constantin, explained that my "electronics" are stable and my heartbeat is regular. If my t-wave alternans test was positve, a defibrillator would have been ordered immediately. Because of my age, both doctors are cautious of implanting this "machine" too soon, but they are very concerned about my low ejection fraction - still below 20%. Basically, my blood flow is good, my electronics are good, but my "ticker" is weak and can't push the blood at a healthy rate. Both doctors believe I will continue to improve as they slowly increase my medications.





I am gradually getting stronger and my stamina is increasing. The picture about was taken during a trip to Jacksonville Beach for dinner at Tacolu with my friend Toni. Lately, I move easier, with less effort, and my heart is not as stressed as before. For example, after helping my father give my dog Brutus a bath this week, I was tired, but not out of breath or palpitating.
I have had outings to First Friday in Five Points (below right)
and the Jacksonville Zoo and Gardens
(new Bamboo Gardens are a must see, below left).





I am still monitoring my sodium intake - learning about food along the way.
I am trying to move into the new Whole Foods - I hate leaving that place.




Get the Salt Out: 501 Simple Ways to Cut the Salt Out of Any Diet
by Ann Louise Gittleman

In this day and age, when fat is blamed for all our health problems, it's often easy to forget that salt can also be a dietary culprit. While salt is necessary for both bodily and cellular function, and is certainly crucial to the satisfying taste of some of our favorite foods, recent research shows that its excess consumption can also lead to hypertension, strokes, and a variety of cardiovascular problems.

In Get the Salt Out, nationally recognized nutritionist Ann Louise Gittleman reveals 501 ways to avoid excess salt intake by serving a variety of delicious low-sodium foods, taking advantage of tasty salt substitutes and steering clear of many surprising hidden sources of salt. She provides more than fifty delicious recipes for low-sodium foods, which will add healthful new staples to the diet of anyone who wants to "get the salt out."

Other features include:

¸ Advice on how to use herbs effectively to reduce sodium intake
¸ Tips for reading labels to expose salt where it is hidden as well as supermarket salt savvy
¸ Ways to reduce the salt level in your water
¸ Advice for avoiding salt when you eat out
¸ Tips for dealing with stress and other impediments you may face
¸ A week-long menu plan
¸ A resource section

Get the Salt Out has all the tips, menu plans and recipes to help you enjoy real foods again and create meals that both your taste buds and your body can truly savor!

ISBN:9780517886540

Author: Gittleman, Ann Louise

Publisher: Three Rivers Press (CA)

Subject: Salt-free diet

Publication Date:December 1996

Binding: Paperback

Pages: 240

Found this tattoo online - thought it was very appropriate.



NEXT UPDATE: June 30, 2009
Appointment with doctors regarding progress.



To my loved ones, friends, and colleagues.
Thank you for your love and support.
I could not have made it this far without you.

the state of the heart

I just returned from my cardiologist, lovingly nicknamed “Dr. Bling Bling.”

Last week, I had an echo-cardiogram to determine if my heart has improved since I was in the hospital four months ago. The test showed that my heart has strengthened and is returning to its normal shape. My ejection fraction has improved, but not enough to take me out of the danger zone. My ef is up from 10%, but still well below 35%, so I will be seeing a doctor that specializes in defibrillators next week. On Monday, I am scheduled to have a T Wave test.

What’s that?

The T wave alternans (TWA) test uses an electrocardiogram (ECG) measurement of the heart's electrical conduction.

The microvolt T-wave alternans (MTWA) is a non-invasive heart test that can identify patients who are at increased risk of sudden cardiac death. It is most often used in patients who have had myocardial infarctions (heart attacks) or other heart damage to see if they are at high risk of developing a potentially lethal cardiac arrhythmia.

Those who are found to be at high risk would therefore benefit from the placement of a defibrillator device which can stop an arrhythmia and save the patient's life.

For more information on the T-wave test,

visit: http://en.wikipedia.org/wiki/T_wave_alternans

Bottom Line

The results of my echocardiogram alone were not enough to determine whether or not a defibrillator is necessary. The T-wave test will provide additional information to determine this.

My heart is working better than it was four months ago, but still below the minimum acceptable levels.

I will continue to take medication – Coreg was doubled to continue the progress of strengthening the heart.

My heart is still alarmingly weak and I am still at high risk of heart failure.

To defibrillate or not to defibrillate?

After the test on Monday and the consultation with the "electrician" (cardiologist specializing in the electronics of the heart) on Wednesday, I will know more about the defibrillator.

Surgery to Implant a Defibrillator (According to hearthelp.com)

Implanting a heart device involves making a small incision, approximately 2 inches, in the upper chest, and guiding leads (thin insulated wires) through a vein and into your heart. It is not an open heart procedure. Patients are generally awake throughout the procedure, and a local anesthesia is typically used.

Your doctor will then connect the lead wires to the implanted heart device and program the device settings. Finally, the heart device will be inserted beneath the skin and the incision in your chest will be closed. Most people stay in the hospital overnight and go home the next day.

Before the procedure you will be given medication to make you sleepy and comfortable. After the implant you may see a slight bulge under your skin where the device is located. The leads are very thin and will not be visible.

You will usually stay in the hospital overnight and receive instructions for home care. You may be asked to restrict movement of the arm near the device for a short period after the implant.

For more information, visit http://www.hearthelp.com/sca/defibrillator-surgery.html

Azaleas are in bloom all over.
This is from my front yard.


A quick update.

On Tuesday, I had my echo-cardiogram.

The technician who administered the test was not able to read it, but she did suggest that the medication was "helping."

In the meantime, I am spending time with my parents, going on stamina-building excursions,
organizing my entire picture collection, and exploring the Internet. I won't be running any races anytime soon, but I feel stable and centered, which must be a silver-lining.

I will be posting following my results next Tuesday. Wish me luck!

Echocardiogram on Tuesday

Over the last few weeks, I have started to feel much better.

My spirits are up.


(picture taken circa 1980)

I managed to stay out of trouble since my dad has been gone.


(picture taken circa 1996? please note: eyebrow ring)

I have been cooking!!



I am reorganizing my photo collection.


(I am on the left, sitting next to my sister, Anne Marie.)

I have been taking a lot of photos of whatever is around me.


(Dumpster I parked next to on Valentine's Day.)

I try to get out each day on an "outing" of some sort - groceries, dinner, movie, etc.


(Bob White, Betty Francis, me, Susan Demato)

My weight, blood pressure, and heart rate have been stable.

I will be having the first echo-cardiogram since my hospital stay in November on Tuesday, March 17 (St Patricks Day). This test will determine whether the medications I have been taking have improved my heart. I will find out the results of the test on March 24. I am not sure what will happen next...pacemaker? more meds? Will know more soon.


From youtube

normal echo dilated cardiomyopathy


From Wikipedia

An echocardiogram, often referred to in the medical community as a cardiac ECHO or simply an ECHO, is a sonogram of the heart. Also known as a cardiac ultrasound, it uses standard ultrasound techniques to image two-dimensional slices of the heart. The latest ultrasound systems now employ 3D real-time imaging. (click here to see an echocardiogram)

In addition to creating two-dimensional pictures of the cardiovascular system, an echocardiogram can also produce accurate assessment of the velocity of blood and cardiac tissue at any arbitrary point using pulsed or continuous wave Doppler ultrasound. This allows assessment of cardiac valve areas and function, any abnormal communications between the left and right side of the heart, any leaking of blood through the valves (valvular regurgitation), and calculation of the cardiac output as well as the ejection fraction.

I plan to post after my March 24th appointment.

How are you feeling?

convalesce (verb) to recover health and strength after an illness


Thank you friends for reading my blog and for all of your
thoughts, prayers, love, and support.


This time has been difficult – I am uncertain, impatient, frustrated, isolated, depressed, doubtful, and hopeless – and that’s all before breakfast!
but I am taking one day at a time and I know that this will make me stronger!


In the beginning, I did not reach out to many people -
It is hard for me to tell my story, but I am using all of my means
to keep in touch with everyone. Please excuse me if I do not respond to messages right away … don’t worry, I will be in touch.

I wrote this to help develop my "laidbackness"

Wait & See
by Allison Gale Graff

There once were two brothers from Relax-city,

One was named Wait and the other one, See.

The whole family always seemed to go with the flow,

Their mother’s name was Patience and their father's name was Joe.

They never worried or scurried or pondered so much,

They never planned breakfast or dinner or lunch.

They took what was given and did the best that they could,

They never said I should of or I could of or I would.

So the next time that you begin to stress, just think of Wait and See,

Take in a breath and hug yourself, be all that you can be.

to be continued...

Waiting...

Right now, I don't agree with Andy Warhol, waiting is not making this experience more exciting. It has been awhile since I posted last.

Not much has happened, but let me catch you up.

I was on FMLA leave from November 17 – February 8, 2009, after being hospitalized for ten days and diagnosed with cardiomyopathy, a serious heart condition. After five weeks in New York, my father and I returned to Florida. On January 20, I met with my cardiologist who recommended returning to work part-time. Unfortunately, the City of Jacksonville does not offer benefits for part-time employees. After reviewing my options on January 27 with my supervisor, I applied for Leave without Pay for three months (February 9 – May 1, 2009).

My cardiologist supported this action.

Currently, the medication I am taking has stabilized my blood pressure and heart rate, but I am not able to exert myself without having increased heart rate, weakness, and extreme fatigue. I also have decreased stamina and low endurance for any activity. The medications are also (supposed to be) strengthening my heart, but their effect will not be measured until March (three months from start of treatment).

In order to maximize my recovery, to ensure my return to my full-time position, and most of all, to guarantee my long-term health, I decided to request this additional leave.

I am scheduled for an echo-cardiogram on March 17 and a follow up with my cardiologist on March 24. This test and appointment will determine, for the first time since my hospitalization, if my heart function has improved. The echo-cardiogram is typically administered three months after starting pharmaceutical treatment. It will measure my “ejection fraction” - the amount of blood exiting my heart to the rest of my body. During my hospital stay in November, my ejection fraction was dangerously low at 10%. If my ejection rate does not improve by March 17, I will be referred to a doctor specializing in pacemaker/defibrillators. This, of course, may required heart surgery. Following this additional leave, I hope to return to work full-time.

Meanwhile...

My father stayed with me in Florida until March 18.

Now he is enjoying the snow in New York (haha).

My mother and father will return in March.

My father and I visited Silver Springs, Florida and rode in a glass-bottom boat.

I visited Catsby at 11E - his new mom is taking great care of him.

My father and I enjoyed the Super Bowl with Sandy and her family.

I have been taking a lot of photos of things around me.

My father and I discovered the joy of flea/farmers markets!

The Cultural Council invited me to a Valentines Day Tea Party at Cozy Tea in Five Points.

Most recently, Pops and I explored Timucuan Ecological and History Preserve.

Look for a post following my March 24th appointment.