cardiomyopathy day case clinic - royal brompton...

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Cardiomyopathy day case clinic

Cardiomyopathy day case clinic_Patient Booklet 16/12/2015 15:39 Page 2

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Cardiomyopathy day case clinic 3

What does the clinic team do? 3

Where do I need to go? 4

What should I bring? 4

Family history 4

What tests will I have? 5

Who will I meet? 7

What happens if an inherited heart condition is found? 8

What happens if no inherited heart condition is found? 8

What else do I need to know? 9

Who can I contact for further information? 10

Contents

This leaflet gives you general information about yourappointment in the cardiomyopathy day case clinic. It does notreplace the need for personal advice from a healthcareprofessional. Please ask us if you have any questions, using thecontact details on page 10.


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You have been referred for acardiomyopathy clinicappointment at RoyalBrompton Hospital. The mostlikely causes for your referralare that:

• a family member has beendiagnosed with aninherited heart condition

• a family member has died

suddenly from a suspectedor confirmed heartcondition that may beinherited

• you have experiencedsymptoms that need furtherinvestigation.

However, you may have beenreferred for another reason andthis will be discussed with you.

We check for inheritedconditions that can affect thesize, structure and function ofyour heart muscle. If we find aheart condition, we hope to beable to reduce the risk that thismay cause and help alleviateany symptoms that you may beexperiencing.

Often we can also reassuremembers of your family whoare not at immediate risk. Wehope to be able to answer allyour questions, offer adviceand possibly treatment, butthis is not always the case.

Getting a positive or unclear

test result can be very worrying.

A positive test result mayconfirm that you haveinherited a heart condition, inwhich case, treatment optionswill be discussed with you. Anunclear test may show thatfurther tests are needed. If thisis the case, these will bediscussed and arranged withyou.

If you would like to discusswhat your results might meanahead of your appointment,please call the clinical nursespecialist team. The contactdetails are on page 10.


What does the clinic team do?


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Where do I need to go?

On the day of yourappointment, please come tothe main hospital receptionon Sydney Street. Thereceptionist can give youdirections, or follow the blue

signposts, to the NIHRCardiovascular BiomedicalResearch Unit (cBRU) on level1 (basement) in Sydney Wing.Accessible via stairs or lift.

What should I bring?

• An up-to-date list of allyour medication, includingdoses.

• Any medication that youmay need during the day.

• A pair of trainers if you arehaving an exercise test.

• Any information you havelearned about your familyhistory.

• Some things to do, such asreading and puzzle books asthere will be time betweentests and meetings.

Family history

We need more informationabout your family, so we cancompletely understand anyinherited heart conditions. Thisincludes details on the age andillnesses (past or present) ofyour parents, grandparents,brothers, sisters, cousins, aunts,uncles and children. Foranyone who has died, pleasebe aware that we will need toknow the cause of death.

We understand that talking

about your family can bedifficult. If you do not wish todiscuss this at the appointmentbecause other family memberswill be present, please let usknow on the day or call theclinical nurse specialist beforeyour appointment. Their detailsare on page 10. Your medicaldetails will remain confidentialat all times unless you tell usthat you are happy to sharemedical information for thebenefit of your relatives.


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What tests will I have?

You will have several cardiac(heart) tests during yourappointment. The testsmarked with a tick have beenspecifically booked for you:

• Blood tests You will have routine bloodtests to check your generalhealth, specific blood teststhat relate to the heart andpossibly genetic blood tests.

• Electrocardiogram (ECG)This is a recording of yourheart’s electrical activity. It tellsus if there are any problemswith your heart’s rhythm. Youlie down on a bed andelectrodes (small sticky pads)are placed on your chest.Leads from the electrodesconnect to the ECG machine.The test does not hurt andonly takes five minutes.

• Echocardiogram (echo)This is an ultrasound scan thatshows the structure of yourheart, and how well it ispumping blood around yourbody. We will ask you to liedown on a bed. A lubricatinggel will be put on your chestand we will move the

ultrasound probe across yourchest to create an image ofyour heart. The scan does nothurt and only takes about 30 minutes.

• Cardiac magneticresonance scan (CMR)

A CMR scan uses a strongmagnetic field and radiowaves to create detailedimages of your heart. It givesus information about thestructure of your heart andblood vessels, and how wellthey are working. It does notuse radiation.

Please do not bring anywatches, jewellery (gold ringsexcepted), metal items or creditcards with you to the scan.

You will be asked to changeinto a hospital gown. Stickypads (electrodes) and leadsfrom the machine are attachedto your chest underneath thegown before you lie down onthe bed that sits in front of themachine. During the scan, thebed will slide into a hole in themiddle of the scanner. You willstay lying on the bedthroughout the scan. Theradiologist will be in the room


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next door reviewing thecomputer screen. The scan takesapproximately 45 to 50 minutes.

Some patients may need aspecial injection of dye(contrast), called gadolinium,to help us assess heart musclefibrosis (scar).

• Cardiopulmonaryexercise test (MVO2)

This checks how the heartmuscle is working bymeasuring the amount ofoxygen used during exercise. Ithelps when studying problemssuch as breathlessness andfatigue / tiredness.

You will have small sticky pads(electrodes) and leads fromthe ECG monitor attached toyour chest. You will also beasked to wear some breathingequipment, a bit like a maskand snorkel. You will breathein and out of it while you areexercising on a treadmill orexercise bike. Your heart rateand rhythm, blood pressureand lung function aremonitored closely by the teamthroughout. The test lasts upto 30 minutes.

Please wear comfortable shoessuch as trainers, and loosefitting clothes for this test.

You must not eat or drink anything containingcaffeine for two hoursbefore this test. Caffeineis found in tea, coffee,

some soft drinks,chocolate and nuts andcan affect your heart

rate.

• 24 or 48 hour ECGmonitor (Holter)

This is a 24-hour recording ofyour heart’s electrical activity.It is painless. We placeelectrodes on your chest. Leadsfrom the electrodes connect toa small, portable monitor,which you wear at homeovernight. You shouldcontinue with your normaldaily activities. The monitor isreturned the following day.We are not able to give youthe results of the Holtermonitor on the day of yourappointment. However, youcan call our team of clinicalnurse specialists for the resultsapproximately two weeksafter the test.


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Who will I meet?

Clinical nurse specialist(CNS)At some point during yourappointment the CNS ininherited cardiovascularconditions (ICC) will meet you,and may also be with you whenyou have your consultation. TheCNS’s role is to give any adviceand support that may beneeded. You can contact theCNS before and after yourappointment, with anyquestions or concerns you mayhave.

Consultant cardiologist After your tests are completed,you will see a consultantcardiologist to discuss theresults that are available, andplan your future care.

Clinical geneticist orgenetics counsellorGeneticists specialise in geneabnormalities that can causeinherited conditions byanalysing DNA. We may askour geneticist to test forinherited conditions in you ora member of your family.Testing family members isimportant as some individualsmay not have the symptoms ofa heart condition, or it maynot have been picked up bytheir own tests. However, theymay carry the abnormal genefor a heart condition. Thegeneticist will counsel youthrough your options.


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If we diagnose an inheritedheart condition, we will planyour treatment with you.Treatment is based on theresults of your tests, yourmedical history and the effectthe inherited condition ishaving on your daily life.Treatment may includemedication or lifestylechanges, such as doing gentlerather than competitiveexercise.

If we find out that you have

an inherited condition, we canscreen other relatives, such aschildren, brothers and sisters.

We appreciate that findingout you may be affected by aninherited cardiovascularcondition can be difficultemotionally for you and yourfamily. We can discuss anyanxieties you may have and, ifyou feel it would be helpful,we can refer you to our clinicalpsychologist for furthersupport.

What happens if an inherited heart condition is found?

We may continue to see you inour outpatient clinic and runfurther tests until such timethat we are sure you do not

have an inherited cardiaccondition. We will dischargeyou after this, back to yourlocal hospital consultant or GP.

What happens if no inherited heart condition is found?


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Breaks and free timeYou may have several breaksbetween tests during yourappointment. If you choose toleave the unit, or the hospitalgrounds, we will provide youwith a “patient pager”. Thiswill allow us to contact youregarding the time of yournext test.

The hospital canteen is locatednext to the BRU (where youare having your tests) on level1 (basement). There is also acafé on the ground floor, closeto the main hospital receptionin Sydney wing. Pleaseremember not to have anycaffeine.

Please return your pagerat the end of your

appointment

Personal possessionsPlease do not bring anything ofvalue with you on the day.Space is limited, so only a smalllocker is provided.

Research studiesResearch into cardiovascular(heart) and respiratory (lung)medicine is central to the Trust’smission, and as a result, wehave an international researchreputation. Should you wish totake part in our research trials,we would be extremelygrateful for your help.

During your visit you may beapproached by a member ofthe research team for aparticular study. He / she willexplain the research study toyou and, if you are interested,provide information to helpyou decide if you want to takepart.

If you decide not to take part,your clinical care will not beaffected in any way.

What else do I need to know?


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• If you have any queries regarding your appointment date,please contact:

Cardiomyopathy scheduler

Tel: 020 7352 8121, extension 2919

• If you have any other questions or concerns, please contact:

The ICC clinical nurse specialists

Tel: 020 7352 8121, extension 2205 or 8823

If we cannot take your call, please leave a message and anurse specialist will call you back.

If you have concerns about any aspect of the service you havereceived in hospital and feel unable to talk to those peopleresponsible for your care, call PALS on:

• Royal Brompton Hospital – 020 7349 7715

• Harefield Hospital – 01895 826 572

You can also email [email protected]. This is a confidential service.

Who can I contact for further information?


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Royal Brompton HospitalSydney StreetLondonSW3 6NPtel: 020 7352 8121textphone: (18001) 020 7352 8121

Harefield HospitalHill End RoadHarefieldMiddlesexUB9 6JHtel: 01895 823 737textphone: (18001) 01895 823 737

Website: www.rbht.nhs.uk

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© Royal Brompton & Harefield NHS Foundation Trust December 2015


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