U-Alison Heckler ABPA
Ngike ngabhala ngohambo lokuqala kanye nokuxilongwa ngaphambilini, kodwa Uhambo oluqhubekayo luthatha imicabango yami kulezi zinsuku. Ngokombono wamaphaphu/Aspergillosis/ Ukuphefumula, njengoba manje sesiza ehlobo e-New Zealand, ngizizwa ngihamba kahle, ngiyabukeka futhi ngizizwa kahle.
Okunye kwesizinda sami sezempilo samanje:-
Ngaqala i-biologic, mepolizumab (Nucala), ngoSepthemba 2022 ngemuva kwezinyanga eziyi-12 ezinzima (enye indaba). NgoKhisimusi, ngase ngithuthuke kakhulu futhi, ngokombono wokuphefumula namandla, ngaba nehlobo elihle; nakuba isimo sezulu sasibi kakhulu, kwakungesehlobo neze.
Ngazithela ngabandayo ngezinyathelo zokuphepha, kwathi ekuqaleni kukaFebhuwari, kwafika umzukulu ephethe okwavela ukuthi kwakuwumkhuhlane omubi engase ngiwe nawo. Emasontweni ayisi-6 kamuva, i-X-reyi yokulandelela emaphashini yabonisa inkinga yenhliziyo eyayidinga udokotela wenhliziyo ukuthi ahlole “kahle-ke ukuthi i-aorta stenosis ayiyona into ekhathazayo enkulu kodwa umbhobho we-aorta awuzange uphole lapho eseyingane. Besingalungisa kodwa …..” impendulo yalokho yathi “Ngineminyaka engaphezu kuka-70, ngakhulelwa izikhathi ezine, ngisekhona kanye nezici zobungozi nazo zonke ezinye izinkinga zami ….. ngeke zenzeke”
Ekugcineni ngemva kwalezo zinkathazo ezimbili, udadewethu oneminyaka engu-81 ubudala wangeniswa esibhedlela, futhi ngangizama ukummelela. Wathola i-Covid, engayithola kuye kamuva. (Ngangenze kahle ukuhlala ngi-Covid Free iminyaka engu-2.5). Kodwa futhi, noma yikuphi ukutheleleka engikuthola kulezi zinsuku kuthatha isikhathi eside kakhulu ukululama kukho; Ngangisenayo emasontweni amane, futhi emavikini angu-6-8, udokotela wami wayekhathazekile ngokuthi kungenzeka ngibe ne-Long Covid njengoba i-BP yami nokushaya kwenhliziyo kwakusekuhlangothini oluphakeme! Udadewethu kwatholakala ukuthi une-Myeloma futhi washona engakapheli amasonto ayisithupha exilongwa.
Selokhu ngaqala i-Mepolizumab, ngangiphawule izinkinga ezandayo zokungakwazi ukuzithiba, futhi lokhu kwavela ku-Pyelonephritis egcwele ngokuphelele (i-eColi Kidney Infection). Njengoba nginenso eyodwa kuphela, izinga lokukhathazeka ngalokhu laliphezulu kancane njengoba izimpawu zazi/ zonke zifana kakhulu nalapho enye inso yami ekugcineni ikhishwa. (Akukho plan B lapha). I-Toss-up: iyakwazi ukuphefumula uma iqhathaniswa nokufunda ukubhekana nokungakwazi ukuzithiba okuthile?
Ngimboza wonke u-2023 ngezinkinga eziqhubekayo Zezempilo Yengqondo nomzukulu wami oneminyaka engu-13-14 ubudala, ngakho-ke indodakazi yami nomyeni wayo, engihlala endaweni yakhe, babematasatasa ngokuzama ukumgcina ephephile kanye nakho konke ukunakekelwa akudingayo. . Sonke sibuhlungu ngokushonelwa yile ngane eseyigadwa.
Amazinga obuhlungu aphezulu, futhi amazinga wamandla aphansi kakhulu. I-Prednisone empeleni ibulale ukukhiqizwa kwami kwe-cortisol, ngakho-ke nginokuntuleka kwe-Adrenal yesibili kanye ne-Osteoporosis.
Kodwa ngiyabonga
Ngibonga kakhulu ngokuthi ngibusisekile ngokuhlala ezweni elinoHlelo Lwezempilo Lomphakathi (kungaba oluwohlokayo olufanayo njenge-NHS). Ngikwazile ukuthuthela endaweni enesibhedlela esihle sokufundisa futhi ngaba seduze nendodakazi yami (udokotela we-Palliative Care) nomyeni wayo (I-Anaesthetist), ngiyakwazi ukuthola imithi yezempilo yomphakathi yamahhala kanye nodokotela ongcono kakhulu olalelayo, obheka isithombe sonke futhi wenza konke okusemandleni akhe ukuthi bonke ochwepheshe babuyekeze isimo. Ama-x-reyi akamuva kanye ne-Dexta Scan yembule izinga lomonakalo nokuwohloka kwe-spin: Ulwazi engidinga ukukwazisa ngalo u-Physio ozama ukungisiza ngokungikhuthaza/ukwenza kusebenze izivivinyo eziqinisayo. I-Endocrinology iphakamise ukwanda kwe-5mg ku-hydrocortisone yami kanye nokuphusha isikhathi somthamo, futhi lokho kwenze umehluko OMKHULU endleleni engibhekana ngayo nakho konke okwenzekayo kanye nobuhlungu. I-Urology ekugcineni yamukele ukudluliselwa ukuze ibuyekeze isimo sami sezinso, nakuba kungase kube izinyanga ezimbalwa ngaphambi kokuba bangibone. Ukuhlolwa kwakamuva noPhysio kwathola ukuthi ukuzivocavoca kwenze umehluko, futhi nganginamandla kakhulu emilenzeni yami. Ngisakuthola kunzima ukukwenza lokhu, kodwa lolu lwazi lungazisa ukuthi ngidinga ukuphikelela.
Impi Enkulu Kunazo Zonke Isimo Sengqondo
Indaba yethu ngayinye izohluka, futhi komunye nomunye wethu, impi ingokoqobo. (Uma ngibhala konke okwami, kuzwakala kukhungathekisa, kodwa ngokuvamile, angikucabangi ngaleyo ndlela. Ngabelane ngendaba yami kuphela njengesibonelo sobunzima bohambo.)
Sibhekana kanjani nazo zonke izinguquko ezisehlelayo? Ngangazi ukuthi impilo yami izoshintsha njengoba ngikhula, kodwa nginomuzwa wokuthi ingifikele ngokushesha. Angizange ngizicabange njengomuntu omdala, kodwa umzimba wami nakanjani uyacabanga futhi uziphatha ngaleyo ndlela!
Ukufunda uku:
Yamukela izinto engingeke ngikwazi ukuzishintsha,
Ukusebenza ezintweni engingazishintsha,
Nokuhlakanipha ukwazi umehluko
Le nqubo yokudedela amaphupho namathemba nokubeka imigomo emisha, enesizotha kakhulu ibibalulekile. Ngiye ngafunda ukuthi ngemva komsebenzi onzima kakhulu (ngamakhono ami amanje), kufanele ngihlale phansi ngiphumule noma ngenze okuthile okungivumela ukuba ngiphumule futhi ngikhiqize. Ngaphambilini bengingumuntu 'oyisigqila sokusebenza' futhi angiyena umhleli kangako, ngakho lolu shintsho alubanga lula. Zonke lezi zinguquko ziyiNqubo Yokudabuka, futhi njenganoma yiluphi usizi, siphulukisa kangcono uma sikuvuma lokho okuyikho, khona-ke singafunda ukuphila nosizi lwethu. Singaqhubekela phambili kukho konke 'okujwayelekile okusha'. Manje nginedayari yokuhlela enamanothi alokho engikufunayo/engidinga ukukwenza, kodwa akuhlelwanga ngokuningiliziwe njengoba kufanele “ngihambe nokugeleza” njengokungathi mangakanani amandla enginawo ukuze ngenze izinto zenzeke. Umvuzo wukuthi ngizogcina ngilungise izinto. Uma kuwumsebenzi wansuku zonke ongu-1 noma emi-2 kuphela, kulungile.
Lapho ekugcineni ngithola ukuxilongwa ngo-2019, ngatshelwa ukuthi “akuwona umdlavuza wamaphaphu; kwakuyi-ABPA, engalapheki futhi engelapheki kodwa engalawuleka”. Okushiwo 'ukuphathwa', angizange ngikubambe ngaleso sikhathi. Yonke imithi esiyiphuzayo izoba nomthelela omubi; ama-antifungal kanye ne-prednisone aphakeme kakhulu kulokho, futhi ngezinye izikhathi yizinkinga eziseceleni okunzima ukubhekana nazo. Ngokwengqondo, kufanele ngizikhumbuze ukuthi ngiyakwazi ukuphefumula futhi angizange ngibulawe inyumoniya yesibili ngenxa yemithi egcina i-aspergillosis ilawulwa. Ngiyaphila ngoba ngilawula indlela engidla ngayo iHydrocortisone nsuku zonke.
Ukulinganisa izinzuzo ngokumelene nemiphumela emibi. Kuneminye imithi lapho sengifunde imiphumela engemihle kanye nezingqinamba futhi ngakala lolo lwazi ngokumelene nezinzuzo zokuqeda i-Peripheral Neuropathy, ngathintana noDkt, sabe sesiyiyeka. Eminye imithi kufanele ihlale, futhi ufunda ukuphila nokucasuka (ukuqubuka, isikhumba esomile, ubuhlungu obungaphezulu emuva, njll.). Futhi, ngamunye wethu uhlukile kulokho esingakuphatha, futhi ngezinye izikhathi, isimo sengqondo (inkani) esisondela ngaso esimweni esizonquma indlela yethu.
Inothi ngenkani…. Ngonyaka odlule, ngazibekela umgomo wokuthola ibanga lami lokuhamba elimaphakathi nsuku zonke libuyele ku-3k ngosuku. Kwakuwumsebenzi omncane lapho ngezinye izinsuku ngangingafinyeleli ku-1.5K. Namuhla, ngikwazile ukuhamba ngezinyawo okungu-4.5 ogwini futhi, okubaluleke nakakhulu, ngabona isilinganiso sansuku zonke ezinyangeni eziyi-12 ezedlule sifika ku-3k ngosuku. Ngakho-ke, ngigubha ukuwina inqobo nje uma kuqhubeka. Ngenza izikhwama ze-clip-on ze-iPhone yami ukuze ngihlale ngiyiphethe ukuze ngirekhode izinyathelo zami, futhi ngisanda kuthenga i-Smart Watch ehlanganisa ukuqopha zonke izibalo zami zedatha yezempilo. Kuyinto entsha evamile ukulandelela lezi zinto, futhi Ithimba labacwaningi be-NAC liyazibuza ukuthi ingabe idatha enjalo ingasisiza yini ukubikezela ukuvutha kwe-ABPA njll.
Kimina, ukholo lwami ebukhosini bukaNkulunkulu lubalulekile ekungigcineni ngigxile futhi ngiqhubekele phambili.
“Wangiluka ngisesiswini sikamama. Izinsuku zami zimiswe ngesandla sakhe.” IHubo 139.
Ngisindisiwe ngomusa, nguKristu yedwa.
Yebo, izimo zami zempilo eziningi zinga/ziyoba nomthelela ekufeni kwami; sonke siyafa ngesinye isikhathi, kodwa ngingaphila impilo engcono kakhulu engingayiphila manje, ngazi ukuthi uNkulunkulu usenomsebenzi okufanele ngiwenze.
“Lo mhlaba akulona ikhaya lami. Ngimane ngiyadlula.”
Ukukhuluma nabanye kuvidiyo Yamaqembu nokufunda okuthunyelwe noma izindaba ku-Facebook Support noma iwebhusayithi konke kunezela ekungisizeni ngihlale nginethemba. (Okungenani isikhathi esiningi) Ukuzwa izindaba zabanye abantu kuyasiza ukuthi ngibeke ezami umbono ngendlela … ngingaba mubi kakhulu. Ngakho, ngokusemandleni ami engingakwenza, ngosizo lweNkosi, ngithemba ukukhuthaza abanye ukuba baqhubeke behamba endleleni enzima ngezinye izikhathi ozithola ukuyo. Yebo, kungase kube nzima kakhulu ngezinye izikhathi, kodwa kubheke njengenselele entsha. Asithenjiswa ukuphila okulula.