Top
$25 of $25,000
0%
1 donation

This fundraiser ended on 01/31/12

Create a fundraiser like this

I'm trying to raise funds for ICD surgery, visit an HOCM specialist at CC in FL and Vanderbilt Autonomic Center in TN and heart transplant.

I'm raising funds for ICD replacement surgery, to go see a HOCM specialist at Cleveland Clinic in Weston Florida; to have advanced testing through Vanderbilt Autonomic Center in Tennessee and a heart transplant since my obstruction has worsened over the past 2 years.

I don't want to admit I need help; I've always been a strong, independent person who takes care of everything and everyone. I lost my health insurance in Dec 2011 and can barely afford the prescriptions that keep me alive.

Shortly before Father's Day 2009, I fell and broke my foot. When it didn't heal, I went to my primary with a broken foot and came out with a broken heart.

After the shock wore off from the doctor telling me that I was going to die if I didn't have valve surgery; I started asking questions.

I didn't quite believe him and thought he was over reacting when he told me I was going to die because I walked and ran 3-5 times weekly and even did strenuous yard work. I felt fine and have 4 children aged 9-26 and kept up with them and stayed very active in things they did; but I was a ticking time bomb just waiting for the right time for my heart to stop.

He sent me to several specialists who said I had nothing really wrong, just some mild valve problems associated with aging; which was a huge relief - but they were completely wrong. Everything seemed normal except my EKG's; they showed I had a huge amount of PVC's (premature ventricular contractions) roughly 50,000 “extra” heartbeats daily.

My heart didn't really beat fully; it only quivered like a bowl of jello day in day out. The problem with it beating like this is, the heart becomes very ineffective at pumping and your cardiac output drops and heart muscle damage can occur.

The cardiologist and electrophysiologist I saw did extensive testing and recommended more testing in the hospital. I went in for a sleep study, Tilt table test and EP Study with Ablation. The sleep study revealed I had moderately severe sleep apnea and my oxygen goes from 99% down to 73% at night making it very dangerous for me when I sleep.

The tilt table test was the first inkling that something dangerous was going on inside. I fainted and had no palpable pulse; which is a very rare thing to happen. I was diagnosed with Dysautonomia - Neurocardiogenic Syncope and Orthostatic Intolerance.

I then had an ablation to burn the extra pathways in my heart and get rid of the pvc's I was living with daily. I was told this would be a relatively easy process and given a 95% success rate to get rid of the extra beats completely but it never crossed my mind that anything would happen.

What preliminary tests failed to show, is the pattern and origin of my arrhythmias were in a very dangerous spot to ablate - the RV Apex – in the bottom thin underside of the heart only; 1%-5% of arrhythmia's are dangerous; I just happen to be in that 1-5%.

During the EP Study, I went into cardiac arrest and my heart stopped completely with no rhythm they could shock (Asystole), some how it started again for a few minutes but then stopped again. They were able to shock me back to normal sinus rhythm and luckily, the third time it stopped; it restarted on it's own so I didn't have to be shocked again.

Only 2% of patients recover from Asystole and my doctor's have no answers to how I survived. I was diagnosed with Polymorphic Ventricular Tachycardia; a very dangerous, life threatening arrhythmia. I stayed in the hospital for 4 days trying to find a cause and to be prepped for an ICD (implantable cardiac defibrillator).

It took a cardiac catherization to finally find the problem and to show I had HOCM (obstructive Hypertrophic Cardiomyopathy) and internal high pressures in my valves.

My regular EP had to go out of town after the first procedure, so his partner had to do the implant; he wasn't as skilled as my regular dr and botched the lead implants.

When they checked the leads the next day before releasing me, they found a problem with the lead placement but the dr said it was "ok" and sent me home. Since then, I've had nothing but problems with the unit and been told by several other EP's I need to have the leads replaced and the ICD could be causing part of my problems.

Doctors think my other problems are related to HOCM (obstructive hypertrophic cardiomyopathy) and Autonomic nervous system failure and when I faint, my heart stops briefly causing damage each time this happens.

After the procedure, my body started failing from the damage it sustained the 4 times my heart stopped. My original cardiologist told me I would be in a wheel chair and totally dependent on others for everything by the time I'm 50; which is daunting because in March I'll be 45 and I can't deny the facts - my body is failing.

I was put on 10,000g sodium daily, water/fluid loading, Midodrine (insurance won't cover it $312 - 30 day supply), Propanolol, Pantoprazole, pain meds, suppression hose and binders as well as having to stay supine the majority of the day - which caused my heart failure to worsen and my EF (ejection fraction) to go down.

Nothing the doctor's have tried has helped, I still faint and my heart stops on a daily basis and I never know from one day to the next if something is going to trigger fluid build up and I have an acute attack.

In June 2011 I fainted falling into the side of my tiled tub, lacerating the side of my head in the process, severely sprained my neck and suffered a concussion. After that episode, I became a bit more cautious with every move I make because the dr found declining neurological functioning and mild brain damage; he said any more falls could lead to permanent major brain damage.

With so many previous medical bills and co-pays, I can't afford health insurance any longer. To have my ICD replaced Mayo Clinic wants a $5,000 deposit up front with insurance. My ICD alone is $125,000, leads another $30,000 and then there's the doctor and hospital fees; which I won't know the cost until the procedure is done.

Each heart rhythm specialist and cardiologist I see tell me there is nothing more they can do after going over my history and treatments; I have a long hard fight to go and I have to just be thankful each day I'm alive. Some days I'm really glad I made it through, other days when the problems and pain take over; I wish the dr's had let me die.

I developed PTSD after the procedure, panic disorder and extreme agoraphobia. I went into such a deep depression over my health issues, I was afraid I would never see the lighter side of things again. I finally went to see a psychologist who prescribed Lamictal and diagnosed me with Bi-Polar disorder which has helped greatly but I still struggle on a daily basis.

One day we were just the “normal” every day family and the toughest thing we had to deal with is a child with Autism. Then our whole lives changed in an instant we were dealing with mounting medical bills, expensive prescriptions, tests, appointments, loss of income and dealing with the possibility of death on a daily basis.

You just never know what the day may bring, so keep those you love close to you and never take one second for granted.

From the bottom of my heart thank you - even if it's support to say hey; I'm here if you need to talk or I know how you're feeling.








View more

Supporter activity

Login to post a comment
or Login