Cov Lus Nug
- Hemophilia Outreach Center
- 5
- Cov Chaw Muab Kev Pab Rau Neeg Mob
- 5
- Cov Lus Nug
Yuav ua li cas peb thiaj pab tau peb?
Surgical nquag nug cov lus nug
Cov tshuaj noj yuav yog nyob ntawm seb hom phais cov neeg mob muaj. HOC tus RN thiab Hematologist yuav ua hauj lwm zoo nrog tus kws phais los txiav txim seb txoj kev npaj zoo tshaj plaws.
HOC yuav pab ua kom sib haum tag nrho cov koob tshuaj no.
Tus neeg mob tshiab / Tshiab khiv thiaj paub hais tias cov lus nug
Nyob HOC, peb nyob nraum zoo siab tham nrog koj txog koj cov tsos mob thiab cov tsos mob ntawm hemophilia thiab lwm yam los ntshav disorders. Yog koj ntseeg hais tias tej zaum koj yuav nyob ntawm ib tug los ntshav disorder thiab xav hais lus rau cov kws txawj hais txog tau txais ib tug mob, thov hu rau peb. Peb cov neeg ua hauj lwm yuav zoo siab pab tau ib lub sij hawm teem tseg.
Hemophilia thiab lwm cov ntshav los ntshav disorders yog genetic mob characterized los ntawm lub cev inability los clot ntshav kom zoo. Feem ntau nws raug rau cov txiv neej thiab yuav kuaj tau thaum muaj hnub nyoog li cas. Kev kuaj thaum ntxov tseem ceeb heev rau kev tswj thiab kho. Yog hais tias koj xav hemophilia los yog lwm los ntshav disorder, nws tseem ceeb heev uas yuav tau nrog ib tug kws kho mob uas tshwj xeeb nyob rau hauv los ntshav disorders.
Peb kho cov nram qab no:
- Hemophilia A (Factor VIII deficiency)
- Hemophilia B (Factor IX deficiency)
- Von Willebrand Disease
- Platelet Deficiencies
- Kis tau tus kab mob Hemophilia
- Hereditary Hemorrhagic Telangiectasia (HHT)
Peb kuj ua hauj lwm nrog cov neeg mus nrhiav ib tug mob.
HOC muaj ntau hom kev xaiv rau los ntshav disorder, xws li cov tshuaj, personalized nutrition plans, genetic counseling, physicalrapy, thiab lwm cov neeg. Teem caij mus ntsib peb pab neeg hnub no los txiav txim seb txoj kev kho twg yog suited rau koj txoj kev xav tau.
Cov Lus Nug Txog Kev Kho Mob
- HOC tsis tam sim no koom rau hauv tej kev mus sib hais. Yog hais tias qhov no yog ib yam dab tsi uas cov neeg mob xav txog kev koom tes hauv, thov hais lus nrog ib tus HOC Registered Nurses.
- HOC koom tes nrog kev tshawb fawb txog kev tshawb fawb. Peb tus nurse Coordinators yuav zoo siab tham txog tag nrho cov txuj ntawm tus neeg mob tus neeg mob mus xyuas.
Qhov no yuav tau tham txog ntawm ib tug neeg mob ib xyoos ib zaug. Muaj cov tshuaj noj thiab cov Hematologist yuav pab txiav txim seb cov tshuaj yuav zoo tshaj rau tus neeg mob txoj kev xav tau.
Tsis yog, peb muaj tag nrho cov neeg mob muaj peev xwm xaiv qhov twg lawv tau txais lawv cov tshuaj los ntawm. (Insurance tej zaum yuav sib tham txog qhov twg los)
Thov muab lub Hemophilia Outreach Center hu. Peb cov neeg ua hauj lwm yuav zoo siab pab tau teem tseg.
- Hu rau ntsuab Bay clinic ntawm (920) 965-0606
- Hu rau lub tsev kho mob Wausau ntawm (715) 680-9810
Txhua tus neeg mob yuav pom raws li lawv txoj kev npaj khomob. Tag nrho cov neeg mob tsis tau nto hnub nyoog 5 xyoos yog pom txhua 6 lub hlis los yog ntau dua. Feem ntau cov neeg mob yuav pom ib xyoos ib zaug thiab raws li xav tau.
HOC coordinates nrog cov neeg mob yuav tsum tau noj cov tshuaj uas yuav tsum tau noj los ntawm HOC los yog ib lub khw Tshwj Xeeb (nyob ntawm daim ntawv kho mob).
- HOC yuav ua hauj lwm nrog cov neeg mob ntawm txoj kev zoo tshaj kom tau lawv cov tshuaj. Peb muaj peev xwm nkoj los yog xa clotting factor rau tus neeg mob lub tsev
- Yog hais tias tus neeg mob tau txais clotting qhov zoo tshaj yuav los ntawm specialty Pharmacy, HOC yuav hu rau tus kws kho mob.
Ib los ntshav disorder txhais tau hais tias cov ntshav tsis clot kom zoo vim ib deficiency ntawm clotting yam.
- Hemophilia A
- Hemophilia B
- Von Willebrand tus (I, II, III)
- Platelet disorders
- Hoobkas 7 deficiency
- Kis tau hemophilia los yog von
- Willebrands
- Lwm yam tsis tshua los ntshav disorders
HOC muab 24/7 On-Call Cov Kev Pab Them Nqi Kho Mob. Cov neeg mob yuav hu rau HOC lub ntsiab (Ntsuab Bay: (920) 965-0606 los yog Wausau: (715) 680-9810) thiab teb cov lus yuav muab koj cov ntaub ntawv thiab cov nplooj ntawv rau tus kws kho mob/tus kws kho mob uas yuav hu rau koj li ntawm 15 feeb.
Peb yuav tau muab tej yam clotting uas tau pom zoo los ntawm fda thiab muaj nyob rau ntawm lub lag luam.
- Bleeds yuav tshwm sim nyob rau hauv los yog sab nraum lub cev. Bleeds rau sab nraum lub cev yog yooj yim npaum li cas los xyuas seb pom tej yam tshwm sim (xws li ntshav, ntshav, ntshav thiab/los yog tsaus nti xiav, o.)
- Tej yam tshwm sim uas tus kab mob thoob ntiaj teb yuav muaj xws li: o, liab, mob, sov so rau cheeb tsam, txo mobility nyob extremities, kaj lug liab los yog tar-li, dub stool (Gastrointestinal bleed), tsis meej pem, blurry tsis pom kev zoo, slurred hais lus, mob taub hau, thiab lwm yam.( (Brain bleed)
- Tsis yog txhua tus neeg uas muaj ntshav los ntshav yuav tsum tau noj tshuaj.
- Cov tshuaj noj yuav yog nyob ntawm seb hom ntshav los ntshav disorder thiab qhov loj.
Feem ntau cov lus nug
Muaj, peb tus txais tos txais tos yuav hu los yog xa ntawv ceeb toom.
Muaj, ib tug neeg yuav tsum tau tsim kom muaj tus neeg mob Hemophilia Outreach Center los utilize programs thiab cov kev pab cuam
Vim yog txoj kev complexity ntawm txhua tus neeg, tsim kom muaj ib tug neeg mob yuav ua tau los ntawm tus kws kho mob xa los yog koj yuav hu tau rau IB TUG KWS KHO MOB HOC Nurse Coordinator ncaj qha thiab lawv yuav qhia koj los ntawm cov avenues ntawm qhov ib tug neeg mob tsim los pab rau HOC.
- Hemophilia A (Factor VIII deficiency)
- Hemophilia B (Factor IX deficiency)
- Von Willebrand Disease
- Platelet Deficiencies
- Kis tau tus kab mob Hemophilia
- Hereditary Hemorrhagic Telangiectasia (HHT)
- HOC – Hemophilia Outreach Center
- HTC – Hemophilia Treatment Center
- ATHN – American Thrombosis & Hemostasis Network
- HRSA – Health Resources & Cov Koom Haum Saib Xyuas Txog Kev Pab Cuam
- CDC – Centers for Disease Control & Prevention
- NHF – National Hemophilia Foundation
- GLHF – Cov Pas Dej Hemophilia Foundation
- PSI – Patient Services Inc.
Cov Lus Nug Txog Nyiaj Txiag
Xa ntawv tuaj rau hauv ib daim tshev, nyob hauv xov tooj daim credit card, Them hauv internet, tag nrho cov ntaub ntawv nyob rau hauv tus neeg
Qhov no yuav yog nyob ntawm seb tus neeg mob cov kev pab them nqi kho mob. HOC yuav tau choj cov neeg mob rau cov neeg mob yog hais tias xav tau.
Muaj
Muaj
Muaj, muaj ntau hom kev pab cuam uas tej zaum yuav muaj rau koj. Thov tiv tauj peb nrog peb tus neeg ua hauj lwm Pab Tus Neeg Ua Hauj Lwm Pab Neeg. Peb yuav pab koom tes nrog cov kev pab cuam uas koj muaj feem tau txais kev pab.
HOC txais ntau yam ntawv kho mob thiab yuav tsis muab ib tug neeg mus saib tau cov kev pab kho mob raws li lawv daim ntawv kho mob, txawm tias peb tsis tam sim no cog lus nrog ntawd tej ntawv kho mob. Thov hu rau peb lub chaw ua hauj lwm los nug txog seb peb puas muaj ntawv cog lus nrog rau daim ntawv kho mob rau koj. Yog peb tsis sib cog lus, peb yuav caum lub sijhawm los cog lus nrog tuam txhab uas muag ntxiv tuam txhab uas muag specific rau lub zej zog uas peb pab. Tsis tas li, yog hais tias koj yog ib tug neeg uas tau txais kev pab kho mob uas kws kho mob muab tshuaj, tej zaum koj daim ntawv kho mob yuav sib tham txog qhov twg koj tau txais cov tshuaj raws li koj txoj kev npaj them nqi kho mob.
Tus nqi pav ca uas tus neeg mob yuav tau them ib zaug thaum koj mus ntsib tus kws kho mob.
Tus neeg mob yuav tsum them ua ntej yuav them ua ntej yuav them rau cov kev pab them nqi kho mob pib
Qhov feem pua ntawm cov nqi uas koj them tom qab qhov yus them yus.
Feem ntau, qhov no yog qhov ntau npaum li cas uas tus neeg mob yuav tsum tau them nrog daim ntawv kho mob rau ib lub xyoos.
Kos, nyiaj ntsuab, HSA FSA & credit card
Cov neeg mob thiab/los yog Guarantor
Muaj ntau yam vim li cas ib lub tuam txhab tuav pov hwm yuav tsis tau them. Feem ntau yog, nrog rau HSA lub hom phiaj, kev pab them nqi kho mob tsis feem ntau pib mus txog rau thaum uas yus them yus.
- Feem ntau peb yeej yuav tau nqi thawj thiab lwm yam ntawv kho mob.
- Nyob rau hauv cov kev tshwm sim uas peb tsis tau, nws yog them raws li txoj cai pertaining rau HOC tsoom fwv teb chaws cov nyiaj pab
Cov Tsev Kho Mob Uas Nquag Nug
Tsis tau, cov neeg mob muaj txoj cai tsis kam mus ntsib tej kev qhuab qhia ancillary yog hais tias nws tseem tsis tau pertinent rau tus neeg mob thiab lawv xav tau.
- Nyob rau ib xyoos twg yuav siv sij hawm li 2 teev.
- Virtual txhua xyoo piv txwv li 45 feeb- 1 teev
Lub sij hawm teem tseg yuav yog nyob ntawm seb tus kws kho mob cov kev txiav txim. Feem ntau, peb yuav tsum tau tias cov neeg mob yuav tsum tau pom tsawg kawg yog ib xyoos ib zaug kom muaj ib txoj kev npaj kho tshiab.
Cov neeg mob yuav tsum tau coj ib daim ntawv kho mob tshiab.
- Hematologist
- Tus Nais Maum
- Tus Kws Kho Mob
- dietitian
- Tus Neeg Uas Muab Kev Pab Tu Lub Qhov Ncauj
- Tus Kws Paub Txog Kev Noj Qab Haus Huv
- Neeg Tawm Tswv Yim Pab Tswv Yim
- Tus neeg mob Pab Navigator
- Tus TswjM Ntawv
Cov Lus Nug Txog Cov Lus Nug
- Ib qhov zoo tshaj yuav VIII (yog hemophilia A nyob hauv tsev neeg) los yog factor IX (yog hemophilia B nyob rau hauv tsev neeg) uas pom zoo rau cov poj niam uas paub los yog tau hemophilia muaj.
- Ib qhov zoo tshaj yuav VIII los yog factor IX theem nrog rau cov ntaub ntawv hais txog tus poj niam keeb kwm ntawm los ntshav yav tag los, yuav pab peb pab neeg ntsuam xyuas koj qhov teeb meem rau abnormal los ntshav.
- Peb pab neeg muaj kev txawj ntse thiab yuav pab tau koj tau qhov kev kuaj ntawd thiab kev tshuaj ntsuam uas koj xav tau.
- Koj muaj txoj kev yuav muaj tus cab no nyob ntawm seb leej twg thiab muaj pes tsawg tus neeg hauv koj tsev neeg muaj tus mob hemophilia no.
- Peb muaj cov lus teb koj tab tom nrhiav. Peb pab neeg no yuav zoo siab tham nrog koj, xav paub ntxiv txog koj tsev neeg keeb kwm thiab chaw nyob koj cov lus nug. Hu rau peb pab neeg ntawm 920-965-0606.
- Genetic testing yuav muab ib lo lus teb mas nws yeej teb txog seb ib tug neeg hemophilia muaj nyob rau ntau yim neeg.
- Peb muaj facilitated genetic testing rau ntau cov poj niam uas xav paub seb lawv yog hemophilia carriers.
- Seb genetic testing yog muaj rau koj seb nws yuav txiav txim seb hemophilia muaj raws li txoj cai nyob ntawm seb muaj ntau yam xws li nram qab no:
- Puas muaj genetic testingly twb nrhiav tau tus kab mob hemophilia rau ib tug neeg hauv koj tsev neeg uas muaj tus mob hemophilia no?
- Koj hais li cas txog tus neeg / cov neeg uas hemophilia nyob hauv tsev neeg?
- Kauj ruam tom ntej: hu rau peb pab neeg ntawm 920-965-0606, peb yuav pab tau.
Tseem ceeb Acronyms, Pharmaceutical terms & jargon
Affordable Care Act (abbreviation of PPACA)
American Thrombosis & Hemostasis Network
Centers for Medicare & Medicaid Services
Zaub mov thiab tshuaj Administration
Great Lakes Hemophilia Foundation
Hemophilia Federation of America
Department of Health and Human Services
Insurance Portability thiab Accountability Act of 1996
Kev Tu Lub Koom Haum Kho Mob
Hemophilia Outreach Center
Cov Chaw Muab Kev Pab Thiab Kev Pab Cuam
Hemophilia Treatment Center
National Hemophilia Foundation
Chaw ua hauj lwm ntawm Pharmacy Affairs
Kev Pab Rau Cov Neeg Ua Hauj Lwm Hauv Kev Pab
Phau ntawv koj lub sij hawm teem tseg hnub no
Yog hais tias koj los yog ib tug hlub ib tug nyob nrog ib los ntshav disorder, mus cuag HOC rau personalized care uas mus tshaj ntawd tej kev kho mob. Peb pab neeg ua hauj lwm yuav ua hauj lwm nrog koj tsim ib txoj kev npaj khomob uas chaw nyob koj xav tau thiab pab koj nyob koj lub neej zoo tshaj plaws.