Okuzwakala Ngempela Ukuphila ne-IPF

-Delile

• UChuck Boetsch, watholakala ngo-2013
• UGeorge Tiffany, watholakala ngo-2010
• UMaggie Bonatakis, watholakala ngo-2003

Kukangaki uzwe umuntu ethi, "Akunakuba kubi kangako"? Kulabo abane-idiopathic pulmonary fibrosis (IPF), ukuzwa lokhu kwilungu lomndeni noma kumngani - noma ngabe kusho kahle - kungadumaza.

I-IPF yisifo esingajwayelekile kodwa esibi esidala ukuthi amaphaphu akho aqine, okwenza kube nzima ukungenisa umoya nokuphefumula ngokuphelele. I-IPF ingahle ingaziwa njenge-COPD nezinye izifo zamaphaphu, kepha lokho akusho ukuthi akufanele uthathe indlela esebenzayo futhi ukhulume ngayo.

Nakhu ukuthi abantu abathathu abahlukene - abaxilongwa ngaphezulu kweminyaka eyi-10 behlukene - basichaza kanjani lesi sifo, nokuthi yini abafuna ukuyiveza nakwabanye futhi.

UChuck Boetsch, watholakala ngo-2013

Kunzima ukuhlala nomqondo ofuna ukwenza izinto umzimba ongasakwazi ukuzenza ngezinga elifanayo lokukhululeka, futhi kufanele ngilungise impilo yami kumandla ami amasha omzimba. Kunezinto ezithile zokuzilibazisa engingakwazi ukuzenza engingazenza ngaphambi kokuthi ngitholwe kubalwa i-scuba, ukuhamba izintaba, ukugijima, njll., Yize ezinye zingenziwa ngokusetshenziswa kwe-oxygen eyengeziwe.

Ngaphezu kwalokho, angihambeli imicimbi yokuzijabulisa nabangane bami kaningi, njengoba ngikhathala ngokushesha futhi ngidinga ukugwema ukuba seduze kwamaqembu amakhulu abantu okungenzeka ukuthi bagula.

Kodwa-ke, ohlelweni olukhulu lwezinto, lokhu kungukuphazamiseka okuncane uma kuqhathaniswa nalokho abanye abanokukhubazeka okuhlukile abaphila nakho nsuku zonke. … Futhi kunzima ukuphila nokuqiniseka ukuthi lesi yisifo esiqhubekela phambili, nokuthi ngingaqhubeka nokuya phansi ngaphandle kwesaziso. Ngaphandle kokwelapha, ngaphandle kokufakelwa kwamaphaphu, lokhu kuvame ukudala ukukhathazeka okuningi. Ushintsho olunzima kusuka ekungacabangeni ngokuphefumula kuya ekucabangeni ngawo wonke umoya.

Ekugcineni, ngizama ukuphila usuku olulodwa ngesikhathi futhi ngijabulele yonke into engizungezile. Yize ngingahle ngingakwazi ukwenza izinto ezifanayo ebengingazenza eminyakeni emithathu eyedlule, ngibusisiwe futhi ngiyabonga ngokuxhaswa ngumndeni wami, abangani, kanye neqembu lezempilo.

UGeorge Tiffany, watholakala ngo-2010

Lapho othile ebuza nge-IPF, ngivame ukumnika impendulo emfushane yokuthi yisifo samaphaphu lapho kuba nzima khona nokuphefumula ngokuhamba kwesikhathi. Uma lowo muntu enentshisekelo, ngizama ukuchaza ukuthi lesi sifo sinezimbangela ezingaziwa futhi sihilela isibazi samaphaphu.

Abantu abane-IPF banezinkinga zokwenza noma imiphi imisebenzi enzima njengokuphakamisa noma ukuphatha imithwalo. Amagquma nezitebhisi kungaba nzima kakhulu. Kwenzekani lapho uzama ukwenza noma iyiphi yalezi zinto uba nomoya, ukhefuzele, futhi uzizwe sengathi awukwazi ukuthola umoya owanele emaphashini akho.

Mhlawumbe isici esinzima kakhulu sesifo kulapho uthola ukuxilongwa bese utshelwa ukuthi usalelwe yiminyaka emithathu kuya kwemihlanu ukuthi uphile. Kwabanye, lezi zindaba ziyashaqisa, ziyahlukumeza futhi ziyabacindezela. Kokuhlangenwe nakho kwami, abathandekayo kungenzeka babe nokushaywa kanzima njengesiguli.

Ngokwami, nginomuzwa wokuthi ngiphile impilo ephelele futhi emangalisayo, futhi ngenkathi ngithanda ukuthi iqhubeke, ngikulungele ukubhekana nanoma yini ezayo.

UMaggie Bonatakis, watholakala ngo-2003

Ukuba ne-IPF kunzima. Kubangela ukuthi ngiphelelwe umoya futhi ngikhathale kalula. Ngisebenzisa ne-oxygen eyengeziwe, futhi lokho kube nomthelela emisebenzini engingayenza nsuku zonke.

Kungazizwa nginesizungu kwesinye isikhathi: Ngemuva kokutholakala ukuthi ngine-IPF, angibange ngisakwazi ukuthatha uhambo lwami lokuvakashela abazukulu bami, okwaba wushintsho olunzima ngoba ngangijwayele ukuhamba ngibabona njalo!

Ngiyakhumbula lapho ngiqala ukutholakala, ngezwa ngishaywa uvalo ngenxa yesimo esibi kakhulu. Noma kunezinsuku ezinzima, umndeni wami - kanye namahlaya ami - kungisiza ukuthi ngihlale nginethemba! Ngiqinisekisile ukuba nezingxoxo ezibalulekile nodokotela bami mayelana nokwelashwa kwami ​​nokubaluleka kokuya ekuvuseleleni i-pulmonary rehab. Ukuba semithini ebambezela ukuqhubeka kwe-IPF nokuthatha indima ebonakalayo ekuphatheni lesi sifo kunginika umuzwa wokulawula.