Ukuvakashela udokotela ngezinye izikhathi kungaba yinto ecindezelayo kakhulu. Kungase kuzwakale sengathi asikho isikhathi esanele sokubuza yonke imibuzo nezinto ezisikhathazayo. Lokhu kuyiqiniso ikakhulukazi uma kukhulunywa ngezimo eziyinkimbinkimbi nezingavamile njenge -hATTR amyloidosis. Ngakho-ke, kubalulekile ukulungiselela uhlu lwemibuzo ofuna ukuyibuza ngaphambi kokuthi uye kobona udokotela wakho. Lokhu kuzokusiza ukuthola konke okudingeka ukwazi futhi uthole ukwelashwa okufanele wena.
Okokuqala, ake sazi kahle ngalesi sifo.
Ukuqonda isimo sakho kubalulekile ekwelashweni kwakho, ngakho ungangabazi ukubuza le mibuzo.
Yini okufanele ngiyiphathe ngezimpawu zami?
Tshela udokotela wakho ngazo zonke izimpawu zakho . Ungase ucabange ukuthi ezinye zazo azihlobene ne-hATTR. Kodwa kubalulekile ukuzitshela zonke. Udokotela wakho angakutshela ukuthi ungaziphatha kanjani lezi zimpawu nokuthi yiziphi izimpawu okufanele uzibeke phambili. Futhi, uma uthatha imithi ehlukene yesibonakaliso ngasinye, bangachaza ukuthi imithi ithintana kanjani (ukuxhumana kwezidakamizwa).
Isifo sami sikusiphi isigaba?
Kunezigaba ezine eziyinhloko zesifo se-hATTR .
- Isigaba 0: Azikho izimpawu.
- Isigaba I: Izimpawu ezincane, kodwa ungahamba.
- Isigaba II: Ukuhamba kudinga usizo, futhi kuvela izinkinga eziningi emzimbeni wonke.
- Isigaba III: Kudinga ukusetshenziswa kwesihlalo sabakhubazekile noma ulele embhedeni, futhi izinkinga ezinkulu zezinzwa, ukuhamba kwemisipha, kanye nezinzwa zenzeka kuwo wonke umzimba.
Ukwazi ukuthi ukusiphi isigaba kwenza kube lula ngodokotela ukuhlela ukwelashwa ngokufanele.
Yiziphi izitho zomzimba wami ezithinte lokhu?
I-hATTR iyisimo esizuzwa njengefa. Kulesi simo, iphrotheni ebizwa ngokuthi i-transthyretin iyaphambuka futhi ihlangane ndawonye ukuze yakhe ama-amyloid deposits ezithweni zomzimba. Ukuhlolwa kungabona ukuthi ama-amyloid deposits akhona enhliziyweni yakho noma kwezinye izitho zomzimba. Lolu lwazi lubalulekile ngoba ukwelashwa okutholayo kuvame ukuncika ohlotsheni lwe-amyloid kanye nezitho ezikuyo .
Ingabe umndeni wami kufanele nawo uhlolwe izakhi zofuzo?
Ngenxa yokuthi lesi yisifo esizuzwa njengefa, ngemva kokutholakala ukuthi unalesi sifo, ungase ufune ukuthola ukuthi kukhona yini omunye emndenini wakho onaso. Uma unezingane, ungase ufune ukucabangela ukuzihlola ukuze uthole i-gene. Ukwelashwa kuphumelela kakhulu uma i-hATTR itholakala kusenesikhathi.Ngakho-ke, ukuqaphela lokhu kungakunika ithuba lokusiza elinye ilungu lomndeni.
Yiziphi izimpawu ezidinga ukuvakashelwa esibhedlela okuphuthumayo?
Nakuba i-hATTR ingadala izimpawu ezahlukahlukene, kubalulekile ukwazi ukuthi yini okufanele uyenze esimweni esiphuthumayo. Ngakho-ke, qiniseka ukuthi ubuza udokotela wakho, "Yiziphi izimpawu okufanele ngiye eMnyangweni Wezimo Eziphuthumayo (ETU) ngokushesha?"
Izinto okufanele uzibuze mayelana nokwelashwa kwakho
Ngokuqonda ngokucacile indlela yokwelapha , ungagwema ukwesaba nokungabaza okungadingekile.
Nginganquma kanjani ukuthi yikuphi ukwelashwa okufanele mina?
Udokotela wakho uzoncoma ukwelashwa ngokusekelwe esigabeni sesifo sakho kanye nezimpawu zakho. Ikakhulukazi, uzohlola izinkinga zemizwa (i-polyneuropathy), njengokungazweli, ubuthakathaka, noma ukuvuvukala kuzo zombili izinhlangothi zomzimba wakho, noma izinkinga zemisipha yenhliziyo (i-cardiomyopathy). Abanye abantu bangase babe nakho kokubili. Lokhu kuzosiza ekwakheni uhlelo lokwelashwa oluqondene nawe. Uma usuvele uthola ukwelashwa, buza, "Uyafuna ukuqhubeka nalokhu kwelashwa noma udinga ukwenza ushintsho?"
Ingabe ikhona imithi emisha engangifanele?
Njengoba isayensi yezokwelapha ithuthuka, izindlela ezintsha zokwelapha lesi sifo nazo ziyavela. Imithi emisha eminingana ivele emakethe eminyakeni embalwa edlule. Kunemithi ehlukene efanelekela izigaba ezahlukene zesifo. Ngakho-ke, kuye ngokuthi ukusiphi isigaba, buza udokotela wakho ukuthi kunezindlela ezintsha ongazizama.
Yini okufanele ngiyilindele kulezi zindlela zokwelapha?
Ulwazi lungamandla. Ukwazi kusengaphambili ngemiphumela emibi engaba khona kanye nezingozi zokwelashwa ozokuthola kuzokunika amandla okubhekana nazo ngaphandle kokukhathazeka.
Kuthatha isikhathi esingakanani lokhu kwelashwa?
Akukho ukwelashwa kwe-haATTR, ngakho ukwelashwa kungase kube impilo yonke. Kodwa-ke, udokotela wakho uzokwazi ukukunikeza umbono oqondile wokuthi uzodinga isikhathi esingakanani sokwelashwa, ngokusekelwe esigabeni sakho sesifo, izimpawu, nezinye izici.
Yimiphi imiphumela emibi engaba khona yale mithi?
Lokhu kuyahlukahluka kuye ngokwelashwa. Isibonelo, umuthi obizwa ngokuthi i-`inotersen (Tegsedi)` kungenzeka ungabi yinketho yokuqala ngoba ungabangela imiphumela emibi kakhulu. Kodwa-ke, imithi efana ne-`tafamidis (Vyndamax, Vyndaqel)` ayizange ibonakale inemiphumela emibi ebalulekile ezigulini ezine-`cardiomyopathy` ezivivinyweni. Lapho udokotela wakho ekubhalela umuthi, qiniseka ukuthi ubuza ngemiphumela emibi engaba khona.
Yiziphi izivivinyo okwakufanele ngizenze esikhathini esizayo?
Lesi sifo siyaqhubeka ngokuhamba kwesikhathi, ikakhulukazi uma singelashwa. Ngakho-ke kuzodingeka ukuthi uhlolwe njalo ukuze ulandelele inqubekela phambili yesifo. Thola ukuthi yiziphi izivivinyo okufanele uzenze nokuthi nini.
Ngingazi kanjani ukuthi lokhu kwelashwa kuphumelele?
Ithimba lezokwelapha elikwelaphayo lizokubona njalo. Lizosebenzisa izivivinyo ukuqapha lesi sifo, futhi lizokucela ukuthi uhlale unolwazi ngezimpawu zakho ukuze libone ukuthi ukwelashwa kuyasebenza yini.
Ubaxhumanisa kanjani odokotela abangochwepheshe kanye neminye imisebenzi?
Ngenxa yokuthi lesi sifo sithinta izitho eziningi zomzimba, kuzodingeka ubone ochwepheshe abaningi.
| Udokotela ochwepheshe | Indawo yethonya |
|---|---|
| Udokotela wenhliziyo | Izinkinga ezihlobene nenhliziyo |
| Udokotela Wegazi | Izinkinga ezihlobene negazi |
| Udokotela wezinzwa | Izinkinga zobuchopho nezinzwa |
| Udokotela Wesisu | Izinkinga zomgudu wokugaya ukudla kanye nesibindi |
| Udokotela Wezifo Zomdlavuza | Ngoba i-amyloidosis ingahlotshaniswa nezimo zomdlavuza |
| Umeluleki Wezakhi Zofuzo | Ukweluleka ngethonya lezakhi zofuzo elidluliselwe ezizukulwaneni ngezizukulwane kanye nezingozi emndenini |
Ukwelashwa kuhlanganiswa kanjani phakathi kwalaba odokotela?
Njengoba uzobona odokotela abaningi abahlukene, kubalulekile ukuthi bonke basebenzisane njengeqembu, babelane ngolwazi. Ungase ukwazi ukuthola ukwelashwa esikhungweni se-amyloidosis, lapho bonke laba ochwepheshe besesibhedlela esifanayo. Uma kungenjalo, qiniseka ukuthi ubuza, "Ulwazi luzokwabelwana kanjani phakathi kwalaba odokotela? Ingabe imiphumela yami yokuhlolwa izokwabelwana ngayo kuwo wonke umuntu, futhi ingabe bazonquma ukuthi yini engcono kakhulu kimi?"
Ubani okufanele ngimbuze ngezimali zami kanye nomshwalense wami?
Ungadinga ukunakekelwa kwezokwelapha okuningi ngalokhu. Ngakho-ke, buza udokotela wakho, umhlengikazi, noma umphathi wesibhedlela, "Ingabe umshwalense wami uzozikhokhela lezi zindleko? Ubani okufanele ngikhulume naye ngalokhu?" Uma udinga usizo lwezezimali, buza ngabantu abangakusiza ngalokhu.
Umlayezo Wokuya Nawe Ekhaya
- Ngaphambi kokuthi uye kudokotela, bhala uhlu lwemibuzo ofuna ukuyibuza. Lokhu kuzokusiza kakhulu.
- Tshela udokotela wakho ngokwethembeka ngisho nangezimpawu ezincane kakhulu ozizwayo, ngaphandle kokuzifihla.
- Yazi kahle isigaba sesifo sakho nokuthi yiziphi izitho zomzimba ezithintekile.
- Khuluma ngokuthi amanye amalungu omndeni nawo ayakudinga yini ukuhlolwa kofuzo.
- Buza ngokucophelela ngezindlela zokwelapha, imiphumela yazo emibi, nokuthi ungazi kanjani ukuthi ukwelashwa kuyaphumelela yini.
- Buza ukuthi ukwelashwa kwakho kuzohlanganiswa kanjani phakathi kochwepheshe abahlukene.
- Ungesabi ukukhuluma ngezindleko zokwelashwa kanye nosizo lwezezimali.
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