Living with Chronic Heart Failure

Social Security AdministrationPolicy Conference

September 25, 2008

Bob A. ScottPatient

Biography

• Lifelong resident, Woonsocket, RILifelong resident, Woonsocket, RI• Married with 3 adult childrenMarried with 3 adult children• National Advocacy Chairman, Mended HeartsNational Advocacy Chairman, Mended Hearts• Member, American Heart Association Member, American Heart Association

Founders Affiliate of Rhode Island Board of Founders Affiliate of Rhode Island Board of DirectorsDirectors

• I have chronic heart failureI have chronic heart failure

CHF History

• February 7, 1998:February 7, 1998:– 48 years old48 years old– Playing volleyballPlaying volleyball– Experienced first Heart AttackExperienced first Heart Attack

CHF History

• Diagnosis:Diagnosis:– Heart catheterizationHeart catheterization– Silent heart attackSilent heart attack– Blocked arteryBlocked artery– Caused muscle damage to lower chamber Caused muscle damage to lower chamber

of my heartof my heart– Resulted in chronic heart failureResulted in chronic heart failure– Stent insertedStent inserted

CHF History

• One Year Later – 1999: One Year Later – 1999: – Another heart catheterization Another heart catheterization – Stents unsuccessful Stents unsuccessful – Required heart bypass surgeryRequired heart bypass surgery– Ejection Fraction after surgery = 27%Ejection Fraction after surgery = 27%

• 2002:2002:– Irregular heartbeat due to CHFIrregular heartbeat due to CHF– Implantable defibrillatorImplantable defibrillator

CHF History

• 2006: 2006: – Implantable defibrillator replacedImplantable defibrillator replaced

• 2007:2007: – Received additional stentReceived additional stent– Heart bypass no longer effectiveHeart bypass no longer effective– Drug-eluting stentDrug-eluting stent

Challenges of Living with CHD

Devastating news:Devastating news:My physician says I can no longer workMy physician says I can no longer work

• Daily chest painDaily chest pain• Shortness of breathShortness of breath• I would be talking to someone and fall asleepI would be talking to someone and fall asleep• Lost all of my strength Lost all of my strength • Couldn’t put my hands over my headCouldn’t put my hands over my head• Hard walking and standingHard walking and standing

Applying for Social Security Disability

Originally applied in 1998Originally applied in 1998– 48 years old48 years old– After first heart attackAfter first heart attack

Disability DeniedDisability Denied– Able to do secondary work?Able to do secondary work?

Applying for Social Security Disability

After Denial of Benefits:After Denial of Benefits:– Temporary disabilityTemporary disability– New careerNew career– Big cut in pay and benefitsBig cut in pay and benefits

Applying for Social Security Disability

Reapplied for Disability:Reapplied for Disability:– Age of 50Age of 50– Benefits approvedBenefits approved– Started receiving Social Security Disability Started receiving Social Security Disability

Insurance in January 2000Insurance in January 2000

Day to Day Living with CHF

Every day can bring a new experienceEvery day can bring a new experience

Day to Day Living with CHFDay to Day Living with CHF

Before CHFBefore CHF• Jump out of bed ready Jump out of bed ready

to goto go• Take shower in 5 Take shower in 5

minutesminutes• Hop in the car and Hop in the car and

drive offdrive off• I was in the service I was in the service

and could stand all and could stand all dayday

After CHFAfter CHF• Sit at edge of bed and Sit at edge of bed and

let blood flow before let blood flow before getting up slowlygetting up slowly

• Taking a shower is Taking a shower is one of my hardest one of my hardest daily choresdaily chores

• Once I get to the car Once I get to the car and get in, I have to and get in, I have to catch my breath catch my breath before proceedingbefore proceeding

• Standing or sitting too Standing or sitting too long causes fluid long causes fluid build upbuild up

Day to Day Living with CHFDay to Day Living with CHF

Before CHFBefore CHF• Bend down to pick-up Bend down to pick-up

somethingsomething• Sleep flat on my backSleep flat on my back• Loved to singLoved to sing

After CHFAfter CHF• When I bend down, I When I bend down, I

get dizzy if I get back get dizzy if I get back up too fastup too fast

• If I lay on my back I If I lay on my back I wake up gasping for wake up gasping for breath because my breath because my lungs build up with lungs build up with fluidfluid

• I lose my voice if I talk I lose my voice if I talk too longtoo long

Day to Day Living with CHFDay to Day Living with CHF

Before CHFBefore CHF• Cut the grass in 20 Cut the grass in 20

minutesminutes• Play with my dogPlay with my dog• Paint a room in a dayPaint a room in a day• Work around the Work around the

househouse• Work a full-time jobWork a full-time job

After CHFAfter CHF• On a good day, cut On a good day, cut

the grass in 2 hoursthe grass in 2 hours• Cannot play with my Cannot play with my

dogdog• Sometimes I can do a Sometimes I can do a

small task around the small task around the househouse

• Tried to work part-Tried to work part-time as a golf course time as a golf course ranger, but even ranger, but even riding the cart too riding the cart too long affects melong affects me

In Closing

CHF affects every aspect of my life.CHF affects every aspect of my life.

People with CHF have to take it one day at People with CHF have to take it one day at a time.a time.

You do what you can when you can.You do what you can when you can.

But most of all:But most of all:““You can’t judge a book by its cover.”You can’t judge a book by its cover.”

Questions?Questions?