CARDIOLOGY Referral Guidance Sheet

Transcription

1 Tyren, 3 heart transplant CARDIOLOGY I wish t be a fireman DEAR CARDIOLOGY HEALTH CARE PROFESSIONAL, USUALLY QUALIFYING CARDIOLOGY CONDITIONS: Cmplex cngenital heart disease, such as: Single ventricle Duble inlet left ventricle Tricuspid atresia Artic atresia Mitral atresia Hypplastic left heart syndrme Cngestive heart failure Hypertrphic, restrictive, and/r arrhythmgenic right ventricular cardimypathy (ARVC) Implanted cardiac defibrillatr Implanted ventricular assist device Left ventricular heart failure Lng QT syndrme Necessary frequent hspitalizatins pst repair f a cngenital heart defect (nt included in this are rutine studies requiring hspitalizatin) Placement n the heart transplant list Pulmnary arterial hypertensin Recipient f a heart r heart-lung transplant Status pst Fntan prcedure Tetrlgy f fallt with pulmnary atresia and majr artpulmnary cllaterals Ventricular fibrillatin Cmmn arterial trunk Pacemaker implantatin Cmplicatins frm immunsuppressive therapy Pulmnary hypertensin Duble utlet right ventricle Subartic stensis Discrdant ventricularterial cnnectin Tetralgy f fallt Heart failure

2 ENDOCRINOLOGY & METABOLIC CONDITIONS Jazmine, 13 thyrid cancer I wish t g t Hawaii DEAR ENDOCRINOLOGY HEALTH CARE PROFESSIONAL, USUALLY QUALIFYING ENDOCRINOLOGY CONDITIONS: Disrder f glycsaminglycan metablism Disrder f urea cycle metablism Fabry (Andersn) disease Gaucher disease Hyperinsulinism with persistent hypglycemia after pancreatectmy Krabbe disease Lesch-Nyhan syndrme Maple-syrup-urine disease Metachrmatic leukdystrphy Multiple endcrine neplasia syndrmes with evidence f cancer Neimann-Pick disease Panhyppituitarism requiring hrmne replacement with hydrcrtisne and/r desmpressin Perxismal disrder Prader willi syndrme with cmrbidities Sphinglipidsis Tay-Sachs disease Thyrid cancer X-linked adrenleukdystrphy (all thers will be reviewed n a case by case basis) Other cnditins may be eligible fr a wish with cmplicating c-mrbidities.

3 GASTROENTEROLOGY Sheamus, 4 liver transplant I wish t meet my favrite player DEAR GASTROENTEROLOGY HEALTH CARE PROFESSIONAL, USUALLY QUALIFYING GASTROENTEROLOGY CONDITIONS: Bwel transplant Chrnic prgressive liver disease with decmpensatin Hepatpulmnary syndrme Inflammatry bwel disease resulting in shrt gut disease with: Prlnged parenteral supprt Cmplicatins resulting frm immunsuppressive therapy r surgery Liver failure Liver transplantatin (within ne year f transplant) Malignancy r inherited pre-malignant cnditins Prtal hypertensin Shrt bwel syndrme r intestinal failure requiring prlnged parenteral (TPN) supprt Status pst liver transplant (with nging life-threatening cmplicatins) Atresia f bile ducts Hirschsprung s disease Cmplicatins frm immunsuppressive therapy Pancreatitis Crhn s disease Ulcerative clitis

4 GENETICS Nah, 8 genetic cnditin I wish t g n a rescue adventure DEAR GENETICS HEALTH CARE PROFESSIONAL, USUALLY QUALIFYING GENETICS CONDITIONS: Barth syndrme Cngenital anmaly, chrmsmal, r single gene cnditin with assciated life-threatening cmplicatins such as: Intractable seizures Structural upper airway abnrmalities r chrnic pulmnary symptms Heart anmalies that meet Cardilgy Guidance Chrnic renal failure Assciated majr GI dysfunctins Skeletal dysplasias r dysstses with chrnic r degenerative pulmnary cmplicatins Smith-Lemli-Optiz syndrme Trismy 13 and 18 Cmplicatins frm immunsuppressive therapy

5 HEMATOLOGY Katya, 8 hematlgic disrder I wish t g n a cruise DEAR HEMATOLOGY HEALTH CARE PROFESSIONAL, USUALLY QUALIFYING HEMATOLOGY CONDITIONS: Aplastic anemia Severe cngenital r acquired bld cell disrders with: Bne marrw transplant (within ne year) Treatment requiring chemtherapeutic agents Hemphagcytic lymphhisticytsis Serius cmplicatins resulting frm transfusin therapy Severe cngenital r acquired bleeding (e.g., irn verlad) Sickle cell disease (Hb-SS, Hb-SC) r thalassemia disrders with: Hemrrhage in vital rgans resulting in significant mrbidity (e.g., intracranial hemrrhage with neurdeficits, rgan injury requiring intensive supprtive care, etc. High titre hemphilic inhibitrs resulting in repeated life-threatening bleeding episdes Severe cmbined immundeficiency (SCID) Stem cell transplant (within ne year) with severe r chrnic cmplicatins such as: Acute chest syndrme Splenic sequestratin Strke r severe cerebrvascular disease Necessary regular transfusin Pulmnary hypertensin Multiple severe pain crises within past year End rgan damage requiring additinal supprtive measures Cmplicatins f immundeficiency Cagulatin disrders r frm immunsuppressive therapy

6 Jennifer, 15 HIV IMMUNOLOGY & INFECTIOUS DISEASE I wish t have a Quinceañera DEAR IMMUNOLOGY & INFECTIOUS DISEASE HEALTH CARE PROFESSIONAL, USUALLY QUALIFYING IMMUNOLOGY & INFECTIOUS DISEASE CONDITIONS: Bne marrw transplant (within ne year f transplant) Immundeficiencies with: Severe autimmune cmplicatins and/r significantly diminished life expectancy. Primary immundeficiencies that require lifelng treatment Life expectancy is anticipated t be significantly shrtened if the treatment is nt available Ex: Wisktt aldrich, Brutn s agammaglbulinemia, chrnic granulmatus disease Primary immundeficiency diseases that result in frequent unplanned hspitalizatins where infectin is nt well cntrlled. Severe Cmbined Immundeficiency Disease (SCID) Status pst bne marrw transplant (with nging life-threatening cmplicatin) Cmplicatins frm HIV immunsuppressive therapy

7 NEPHROLOGY Delfina, 15 end-stage renal disease I wish t have a Quinceañera DEAR NEPHROLOGY HEALTH CARE PROFESSIONAL, USUALLY QUALIFYING NEPHROLOGY CONDITIONS: Chrnic kidney disease (stage 3 r greater) with: Multiple acute illnesses/exacerbatins in the last year requiring hspitalizatin Dialysis dependent renal disease Kidney transplant (within ne year f transplant) Kidney diseases that are dependent n lngterm infusins and/r plasma exchange Ex: atypical hemlytic uremic syndrme requiring chrnic anticmplement therapy t stay in remissin Status pst kidney transplant (with nging life-threatening cmplicatins) Cmplicatins frm immunsuppressive therapy Refractry nephrtic syndrme Ex: multiple acute illnesses r relapses requiring infusin medicatin and multiple immunsuppressive medicatins

8 NEUROLOGY Max, 8 Duchenne muscular dystrphy I wish t fly like my favrite superher DEAR NEUROLOGY HEALTH CARE PROFESSIONAL, USUALLY QUALIFYING NEUROLOGY CONDITIONS: Alpers disease Cerebral palsy with assciated life-threatening cmplicatins e.g., intractable seizures, cmprmised respiratry functin Cngenital neurmuscular disease with respiratry r cardiac cmplicatins including: Mytnic muscular dystrphy Duchenne muscular dystrphy Spinal Muscular Atrphy types 1 and 2 Epilepsy/uncntrlled seizures that are: Intractable Refractry Treatment Resistant Familial dysautnmia (Riley-Day) Friedreich s ataxia Huntingtn s disease Leigh s disease Lennx-Gastaut syndrme that is: Intractable Treatment resistant Leukdystrphy Mya mya disease Neurdegenerative disease with significantly shrtened life expectancy Neurnal brain irn accumulatin (NBIA) Prgressive cerebrvascular disease, strke with nging life-threatening cmplicatin Prfund neur-develpmental delay with assciated life-threatening c-mrbidities requiring significant and nging life-sustaining medical supprt Rett s syndrme Tuberus sclersis Arhinencephaly Mypathy Encephalpathy Neurfibrmatsis Hydrcephalus Spinal bifida Megalencephaly

9 ONCOLOGY Natalia, 10 brain tumr I wish t create a sup and feed the hmeless DEAR ONCOLOGY HEALTH CARE PROFESSIONAL, USUALLY QUALIFYING ONCOLOGY CONDITIONS: Bne marrw/stem cell transplant (within ne year f transplant) Lw grade tumrs with any f the fllwing criteria: Requiring treatment with chemtherapy r radiatin Requiring mre than ne majr surgery such as cranitmy Lcatin f tumr requiring nging medical interventin (ex: seizures r endcrine deficit; significant functinal impairment (ex: paralysis); r ther majr neurlgic impairment) Assciated with extensive cmplicatins (ex: a lengthy unplanned hspital stay) Malignant neplasm Requiring and within ne year f cmpletin f chemtherapy r radiatin treatment Neplasm f unspecified/uncertain behavir Status pst bne marrw/stem cell transplant (with nging life-threatening cmplicatins) Cmplicatins frm immunsuppressive therapy

10 PULMONARY Brandn, 15 cystic fibrsis I wish t be a Navy SEAL DEAR PULMONARY HEALTH CARE PROFESSIONAL, USUALLY QUALIFYING PULMONARY CONDITIONS: Chrnic hypxemia requiring supplemental xygen Chrnic respiratry failure Chrnic ventilatr dependence Cystic fibrsis Lung transplant Mderate t severe lung disease secndary t chemtherapy and radiatin Placement n the lung transplant list Prgressive histicytsis including multi-fcal Prgressive interstitial lung disease assciate with immundeficiency, aut-immune disease r immune dysregulatin Pulmnary fibrsis Pulmnary graft vs. hst disease Pulmnary hypertensin Pulmnary lymphangectasia Severe respiratry cmprmise incmpletely respnsive t therapy and resulting in recurrent life-threatening episdes Surfactant prtein dysfunctin Trachestmy placement fr chrnic respiratry failure r severe airway bstructin Acute respiratry failure Chrnic Obstructive Pulmnary Disease Brnchpulmnary dysplasia Primary ciliary dyskinesia Children having a trachestmy with xygen Severe Asthma requirements depending n the underlying Severe restrictive lung disease medical diagnsis r reasn fr the Cmplicatins frm immunsuppressive therapy trachestmy

11 Grace, 12 inflammatry muscle disease RHEUMATOLOGY I wish t have a bedrm makever DEAR RHEUMATOLOGY HEALTH CARE PROFESSIONAL, USUALLY QUALIFYING RHEUMATOLOGY CONDITIONS: Antiphsphlipid syndrme with recurrent thrmbsis/active disease (nt just psitive antibdy titers) Autinflammatry cnditins i.e. TRAPS, CINCA/NOMID, HIDS, CANDLE, DIRA Chrnic vasculitis: Esinphilic granulmatsis with plyangiitis Granulmatsis Micrscpic plyangiitis Plyangiitis Plyarteritis ndsa Takayasu s arteritis Juvenile dermatmysitis With any end-rgan invlvement, calcinsis r therwise recalcitrant (greater than ne year f treatment r tw r mre relapses) Mixed cnnective tissue disease with end-rgan invlvement Pediatric systemic lupus erythematus with end-rgan invlvement Plychndritis resulting in end-rgan damage Prgressive Systemic Sclersis (Systemic Sclerderma) Systemic JRA/JIA with macrphage activatin syndrme Cmplicatins frm immunsuppressive therapy