Eyona nto uziva ngathi uthanda ukuhlala nayo IPF

Umxholo

• UChuck Boetsch, ofunyenwe ngo-2013
• UGeorge Tiffany, wafunyaniswa ngo-2010
• Maggie Bonatakis, wafunyaniswa ngo-2003

Kukangaphi uve umntu esithi, "Akunakuba kubi kangako"? Kulabo bane-idiopathic pulmonary fibrosis (IPF), ukuva oku kwilungu losapho okanye kumhlobo- nokuba bathetha kakuhle- kunokudanisa.

I-IPF sisifo esinqabileyo kodwa esibi esenza ukuba imiphunga yakho iqine, isenza kube nzima ukungenisa umoya nokuphefumla ngokupheleleyo. I-IPF isenokungaziwa njenge-COPD kunye nezinye izifo zemiphunga, kodwa oko akuthethi ukuba awufanele uthathe indlela esebenzayo kwaye uthethe ngayo.

Nantsi indlela abantu abathathu abohlukeneyo-bafunyaniswe ngaphezulu kweminyaka eyi-10 bachasane-basichaze esi sifo, nento abafuna ukuyithetha kwabanye.

UChuck Boetsch, ofunyenwe ngo-2013

Kunzima ukuhlala ngengqondo efuna ukwenza izinto umzimba ongasakwaziyo ukuzenza ngezinga elifanayo lokukhululeka, kwaye kufuneka ndilungelelanise ubomi bam kumandla am amatsha omzimba. Kukho izinto endizithandayo endingenakuzenza ngaphambi kokuba ndibhaqwe ukuba ndibandakanya iscuba, ukunyuka intaba, ukubaleka, njalo njalo, nangona ezinye zingenziwa ngokusetyenziswa kweoksijini eyongezelelweyo.

Ukongeza, andizukuya kwimicimbi yezentlalo nabahlobo bam rhoqo, njengoko ndidinwa ngokukhawuleza kwaye kufuneka ndiphephe ukuba phakathi kwamaqela amakhulu abantu abanokuthi bagule.

Nangona kunjalo, kwisikimu esikhulu sezinto, ezi ziziphazamiso ezincinci xa kuthelekiswa nezinto abanye abakhubazekileyo abahlukeneyo abaphila nazo mihla le. … Kukwanzima nokuphila ndiqinisekile ukuba esi sisifo esiqhubela phambili, kwaye ndinokuya ndisihla ndisiya ngaphandle kwesaziso. Ngaphandle konyango, ngaphandle kokufakwa kwemiphunga, oku kudla ngokubangela uxinzelelo oluninzi. Lutshintsho olunzima ukusuka ekungacingi ngokuphefumla ukuya ekucingeni ngawo wonke umphefumlo.

Ekugqibeleni, ndizama ukuhlala usuku olunye ngexesha kwaye ndikonwabele yonke into ejikeleze mna. Nangona ndingenako ukwenza izinto ezifanayo endinokuzenza kwiminyaka emithathu edlulileyo, ndibusisiwe kwaye ndinombulelo ngenkxaso yosapho lwam, abahlobo, kunye neqela lokhathalelo lwempilo.

UGeorge Tiffany, wafunyaniswa ngo-2010

Xa umntu ebuza malunga ne-IPF, ndihlala ndimnika impendulo emfutshane ukuba sisifo semiphunga apho kusiba nzima ngakumbi nokuphefumla njengoko ixesha lihamba. Ukuba loo mntu unomdla, ndiye ndizame ukucacisa ukuba isifo sinezizathu ezingaziwayo kwaye sibandakanya ukonakala kwemiphunga.

Abantu abane-IPF baneengxaki zokwenza nayiphi na imisebenzi enzima njengokuphakamisa okanye ukuphatha imithwalo. Iinduli kunye nezinyuko kunokuba nzima kakhulu. Kwenzeka ntoni xa uzama ukwenza nayiphi na kwezi zinto uye ubethwe ngumoya, ukhefu, kwaye uzive ngathi awunakufumana umoya owaneleyo kwimiphunga yakho.

Mhlawumbi eyona nto inzima kwesi sifo kuxa usifumana isifo kwaye uxelelwe ukuba uneminyaka emithathu ukuya kwemihlanu ukuba uphile. Kweminye, ezi ndaba ziyothusa, ziyatshabalalisa kwaye ziyothusa. Kumava am, abathandekayo banokubakho nzima njengesigulana.

Ngokwam, ndiziva ngathi ndiphila ubomi obugcweleyo nobumangalisayo, kwaye ngelixa ndingathanda ukuba iqhubeke, ndikulungele ukujongana nayo nayiphi na into ezayo.

Maggie Bonatakis, wafunyaniswa ngo-2003

Ukuba ne-IPF kunzima. Kubangela ukuba ndiphelelwe ngumoya kwaye ndidiniwe ngokulula. Ndisebenzisa oksijini eyongezelelweyo, kwaye inefuthe kwimisebenzi endinokuyenza yonke imihla.

Kananjalo kungaziva ndililolo ngamanye amaxesha: Emva kokuba kufunyaniswe ukuba ndine-IPF, andikhange ndikwazi ukuthatha uhambo lwam lokundwendwela abazukulwana bam kwakhona, ebelutshintsho olunzima kuba bendihlala ndihamba ndibabona ngalo lonke ixesha!

Ndikhumbula ukuqala kwam ukufunyaniswa, ndaziva ndisoyika kuba imeko yayimbi kangakanani. Nangona zikho iintsuku ezinzima, usapho lwam-kunye noburharha-bandinceda ndigcine ndiqinisekile! Ndiqinisekisile ukuba ndibeneencoko ezibalulekileyo noogqirha bam malunga nonyango lwam kunye nexabiso lokuya kwi-pulmonary rehab. Ukuba kunyango olucothisa ukuqhubela phambili kwe-IPF kunye nokuthatha inxaxheba ebonakalayo ekulawuleni esi sifo kundinika amandla okulawula.