Alison Heckler ABPA
Ndibhale malunga nohambo lokuqala kunye noxilongo ngaphambili, kodwa uhambo oluqhubekayo luthatha iingcinga zam kwezi ntsuku. Ukusuka kwiLung/Aspergillosis/ imbono yokuphefumla, ngoku singena ehlotyeni eNew Zealand, ndiziva ndilungile, ndijonge kwaye ndiziva ndiphilile.
Enye yeNdalo yam yangoku yezoNyango:-
Ndaqala i-biologic, mepolizumab (Nucala), ngoSeptemba 2022 emva kweenyanga ezili-12 ezinzima ngokwenene (elinye ibali). NgeKrisimesi, ndandiphuculwe kakhulu kwaye, kwimbono yokuphefumula kunye namandla, ndibe nehlobo elihle; nangona imozulu yayimbi kangako, kwakungekudalanga kwasehlotyeni.
Ndaziva ndikhululekile malunga namanyathelo okhuseleko, kwaye ekuqaleni kukaFebruwari, umzukulwana watyelela into eyajika yaba ngumkhuhlane ombi endiye ndehla nawo. Kwiiveki ezi-6 kamva, i-X-reyi elandelelweyo kwimiphunga yabonisa ingxaki yentliziyo eyayifuna ugqirha wentliziyo ukuba ahlole “kaloku i-aorta stenosis ayiyongxaki enkulu kodwa umbhobho we-aorta awuzange uphile kwasebuntwaneni. Singalungisa kodwa …..” impendulo kuloo nto yaba “Ndingaphezulu kweminyaka engama-70, ndikhulelwe kane, ndiselapha kunye nezinto ezinobungozi ngayo yonke eminye imiba….. ayizukwenzeka”
Ekugqibeleni emva kwezo ziphazamiso zimbini, udade wethu oneminyaka engama-81 ubudala walaliswa esibhedlele, yaye ndandizama ukumthethelela. Ufumene uCovid, endathi ndayifumana kuye. (Ndenze kakuhle ukuhlala ndi-Covid Free iminyaka eyi-2.5). Kodwa kwakhona, naluphi na usulelo endilufumanayo kwezi ntsuku luthatha ixesha elide ukuchacha kulo; Ndandisenayo kwiiveki ezine, kwaye kwiiveki ze-6-8, i-GP yam yayinenkxalabo yokuba ndingase ndiphuhlise i-Long Covid njengoko i-BP yam kunye nesantya sentliziyo sasisencinci kwicala eliphezulu! Udadewethu wafunyaniswa ukuba uneMyeloma waza wasweleka kwisithuba seeveki ezintandathu emva kokuba efunyanisiwe.
Ukususela ekuqaliseni i-Mepolizumab, ndiye ndaqaphela iingxaki ezikhulayo zokungakwazi ukuzibamba, kwaye oku kwavela kwi-Pyelonephritis egcwele ngokupheleleyo (i-eColi Kidney Infection). Njengoko ndinentso enye kuphela, inqanaba lokuxhalaba malunga noku beliphezulu kancinane njengoko iimpawu zazi/ zonke zifana kakhulu naxa enye intso yam yade yasuswa. (Akukho plan B apha). Ukuphosa phezulu: ukwazi ukuphefumla xa uthelekisa nokufunda ukujongana nokungakwazi ukuzibamba?
Ndigubungela wonke u-2023 ngemicimbi yeMpilo yeNgqondo eqhubekayo nomzukulwana wam oneminyaka eli-13-14 ubudala, ke intombi yam nomyeni wayo, endihlala kwipropathi yakhe, babexakeke ngokupheleleyo bezama ukumgcina ekhuselekile kunye nalo lonke ukhathalelo alufunayo. . Sonke sibuhlungu ngokulahlekelwa ngulo mntwana ukhoyo ngoku.
Amanqanaba eentlungu aphezulu, kwaye amanqanaba amandla aphantsi kakhulu. I-Prednisone iyibulele kakhulu imveliso yam ye-cortisol, ngoko ke ndine-Secondary Adrenal Insufficiency kunye ne-Osteoporosis.
Kodwa ndinombulelo
Ndinombulelo ongazenzisiyo kuba ndisikeleleke ngokuhlala kwilizwe elineNkqubo yezeMpilo yoLuntu (makube yinto efanayo ewohlokayo njenge-NHS). Ndiye ndakwazi ukufudukela kwindawo enesibhedlele sokufundisa esilungileyo kwaye ndisondele kwintombi yam (ugqirha wokhathalelo lwePalliative) kunye nomyeni wakhe (i-Anaesthetist), ndinokufikelela kumayeza ezempilo oluntu asimahla kunye noGqirha obalaseleyo omamelayo, ujonge wonke umfanekiso kwaye wenza konke okusemandleni akhe ukuba afumane zonke iiNgcali ukuba zihlole imeko. Ii-x-reyi zakutsha nje kunye ne-Dexta Scan ibonakalise ubungakanani bomonakalo kunye nokuwohloka kwe-spin: Ulwazi endifuna ukuzisa kuqwalaselo lwePhysio ezama ukundinceda ngenkuthazo yam/yokuvula imithambo yokomeleza. I-Endocrinology iphakamise ukunyuka kwe-5mg kwi-hydrocortisone yam kunye nokukhupha ixesha ledosi, kwaye oko kwenze umahluko OMKHULU kwindlela endijamelana ngayo nokujongana nayo yonke into eyenzekayo kunye neentlungu. I-Urology ekugqibeleni yamnkele ukuthunyelwa ukuba iphonononge imeko yezintso zam, nangona kusenokuba ziinyanga ezimbalwa ngaphambi kokuba bandibone. Uvavanyo lwamva nje lwePhysio lufumanise ukuba umthambo wenze umahluko, kwaye ndomelele kakhulu emilenzeni yam. Ndisenobunzima bokwenza ezi zinto, kodwa le nkcazelo indixelela ukuba kufuneka ndizingise.
Elona dabi likhulu sisimo sengqondo
Ibali ngalinye lethu liya kuba lilodwa, kwaye ngamnye wethu, idabi liyinyani. (Xa ndibhala konke okwam, kuvakala kukhwankqisa, kodwa ngokubanzi, andiyicingi ngolo hlobo. Ndabelane ngebali lam kuphela njengomzekelo wokuntsokotha kohambo.)
Simelana njani nalo lonke utshintsho olusifikelayo? Ndandisazi ukuba impilo yam iza kutshintsha njengoko ndisiya ndikhula, kodwa ndivakalelwa kukuba indifikele ngokukhawuleza. Andizange ndicinge ukuba ndimdala, kodwa umzimba wam ngokuqinisekileyo ucinga kwaye uziphatha ngolo hlobo!
Ukufunda uku:
Zamkele izinto endingenako ukuzitshintsha,
Ukusebenza kwizinto endinokuzitshintsha,
Nobulumko bokwazi umahluko
Le nkqubo yokuyeka amaphupha kunye nethemba kunye nokubeka usukelo olutsha, oluthozamileyo lube lubalulekile. Ndiye ndafunda ukuba emva komsebenzi onzima ngakumbi (ngokwezinto endinazo ngoku), kufuneka ndihlale phantsi ndiphumle okanye ndenze into endivumela ukuba ndiphumle ndize ndibe nemveliso. Ngaphambili bendikade 'ndingumntu othanda umsebenzi' kwaye ndingenasicwangcisi, ngoko ke olu tshintsho alukhange lubelula. Zonke ezi nguqu ziyiNkqubo yokuKhala, kwaye njengayo nayiphi na intlungu, siphilisa ngcono ukuba siyayivuma ukuba yintoni na, ngoko sinokufunda ukuhlala kunye nentlungu yethu. Singaqhubela phambili kuyo yonke 'imilinganiselo emitsha'. Ngoku ndinedayari yokucwangcisa enamanqaku ento endifuna ukuyenza/ekufuneka ndiyenze, kodwa ayicwangciswanga ngokweenkcukacha njengoko kufuneka “ndihambe nokuqukuqela” njengoko kwakunjalo kubungakanani bamandla endinawo ukwenza izinto. Imbuyekezo kukuba ekugqibeleni ndiya kuzilungisa izinto. Ukuba yinto e-1 okanye emi-2 kuphela yemihla ngemihla, kulungile.
Xa ekugqibeleni ndafunyaniswa ngoxilongo ngo-2019, ndaxelelwa ukuba “yayingengomhlaza wemiphunga; yayiyi-ABPA, enganyangekiyo kwaye enganyangekiyo kodwa enokulawulwa”. Oko 'kulawulwa' kubandakanya, ngokuqinisekileyo andizange ndibandakanyeke ngelo xesha. Onke amayeza esiwathathayo azakuba neziphumo ebezingalindelekanga; i-antifungals kunye ne-prednisone ziphezulu apho, kwaye ngamanye amaxesha yimiba esecaleni enzima kakhulu ukumelana nayo. Ngengqondo, kufuneka ndizikhumbuze ukuba ndiyakwazi ukuphefumla kwaye andizange ndibulawe yinyumoniya yesibini ngenxa yeyeza ezigcina i-aspergillosis iphantsi kolawulo. Ndiyaphila kuba ndilawula ukuthatha kwam iHydrocortisone yonke imihla.
Ukulinganisa iinzuzo ngokuchasene neziphumo ebezingalindelekanga. Kukho amayeza endithe ndafunda iziphumo ebezingalindelekanga kunye nokuchasana kwaye ndalinganisa olo lwazi ngokuchasene nezibonelelo zokuthomalalisa i-Peripheral Neuropathy, ndiye ndadibana noGqr, kwaye sayiyeka. Amanye amayeza kufuneka ahlale, kwaye ufunda ukuhlala kunye nokucaphuka (i-rashes, isikhumba esomileyo, intlungu eyongezelelweyo, njl.). Kwakhona, ngamnye wethu wahlukile kwinto esinokuyilawula, kwaye ngamanye amaxesha, sisimo sengqondo (inkani) esisondela ngayo kwimeko eya kugqiba isikhokelo sethu.
Inqaku malunga nenkani…. Kulo nyaka uphelileyo, ndizibekele usukelo lokufumana umgama wam wemihla ngemihla wokuhamba ubuyela kwi-3k ngosuku. Ibiyi mission encinci xa ngezinye imini ndingafiki ku 1.5K. Namhlanje, ndikwazile ukuhamba ngeflethi e-4.5 elunxwemeni kwaye, okona kubaluleke kakhulu, ndabona umndilili wemihla ngemihla kwiinyanga ezili-12 ezidlulileyo ufike kwi-3k ngosuku. Ke, ndibhiyozela ukuphumelela ixesha elide. Ndenza i-clip-on pouches ye-iPhone yam ukuze ndihlale ndiyiphethe ukurekhoda amanyathelo am, kwaye ndisanda kuthenga i-Smart Watch equka ukurekhoda zonke iinkcukacha zempilo yam. Kuyinto eqhelekileyo ukulandelela le nto, kwaye iQela lophando le-NAC liyazibuza ukuba loo datha ingasinceda ukuba siqikelele ukuvutha kwe-ABPA njl.
Kum, ukholo lwam elongamo lukaThixo lubalulekile ekundigcineni ndigxile kwaye ndiqhubele phambili.
“Wandibiyela esizalweni sikama. Imihla yam imiswe ngesandla sakhe. INdumiso 139 .
Ndisindisiwe ngobabalo, nguKristu yedwa.
Ewe, inani leemeko zonyango lwam linokuba negalelo ekufeni kwam; sonke siyafa ngaxa lithile, kodwa ndinokuphila obona bomi bumnandi ndibuphilayo ngoku, ndisazi ukuba uThixo usenomsebenzi afuna ndiwenze.
“Eli hlabathi asilokhaya lam. Ndiyadlula nje.”
Ukuthetha nabanye kwiVidiyo yeQela kunye nokufunda izithuba okanye amabali kwiNkxaso kaFacebook okanye iwebhusayithi yonke yongeza ekundincedeni ukuba ndihlale ndinethemba. (Okungenani kumaxesha amaninzi) Ukuva amabali abanye abantu kunceda ukuba ndibeke owam umva kwimbono … ndinokuba mandundu. Ngoko ke, kangangoko ndinako, ngoncedo lweNkosi, ndinethemba lokukhuthaza abanye ukuba baqhubeke behamba kwindlela enzima okhe uzifumane ukuyo. Ewe, kunokuba nzima kakhulu ngamanye amaxesha, kodwa yijonge njengomngeni omtsha. Asithenjiswanga ubomi obulula.