Alison Heckler ABPA

Ndakanyora nezve rwendo rwekutanga uye kuongororwa kare, asi Rwendo rwurikuenderera rwune pfungwa dzangu mazuva ano.  Kubva paLung/Aspergillosis/ Maonero ekufema, zvatiri kuuya muzhizha muNew Zealand, ndinonzwa ndiri kuita zvakanaka, ndichitarisa uye ndichinzwa zvakanaka.    

Zvimwe zvezvino Medical Background yangu:-

Ini ndakatanga iyo biologic, mepolizumab (Nucala), munaGunyana 2022 mushure memwedzi gumi nemiviri yakaoma chaizvo (imwe nyaya). NeKisimusi, ndakavandudzwa zvakanyanya uye, kubva pakufema uye simba, ndaiva nezhizha rakanaka; kunyange zvazvo kunze kwakanga kwakaipa, rakanga risati riri zhizha. 

Ndakashaya hanya nezvedziviriro, uye mukutanga kwaFebruary, muzukuru akashanya aine furuu yandakazobatwa nayo. Kwapera mavhiki matanhatu, X-ray yekutevera pamapapu yakaratidza dambudziko remoyo raida chiremba wemwoyo kuti atarise “aortic stenosis harisi dambudziko guru asi buri reaortic harina kumbopora achiri mwana. Taigona kugadzirisa asi .....” mhinduro kune iyo yaive "Ndapfuura makore makumi manomwe, ndine nhumbu ina, ndichiri pano & nengozi nezvimwe zvangu zvese ..... hazvisi kuzoitika"

Pane imwe nguva pakupedzisira pamusoro pokusagadzikana kuviri ikoko, hanzvadzi yangu ine makore 81 okukura yakapinzwa muchipatara, uye ndakanga ndichiedza kumureverera. Akawana Covid, yandakazowana kubva kwaari. (Ndakanga ndaita zvakanaka kugara Covid Yemahara kwemakore 2.5). Asi zvakare, chero hutachiona hwandinowana mazuva ano hunotora nguva yakareba kuti ndipora; Ndakanga ndichiri nayo pamavhiki mana, uye pamavhiki matanhatu-6, GP wangu ainetseka kuti ndingadai ndakagadzira Long Covid sezvo BP yangu uye kurova kwemoyo zvaive zvichiri padivi repamusoro! Hanzvadzi yangu yakabatwa chirwere cheMyeloma uye yakafa mukati memavhiki matanhatu echirwere ichi.

 Kubva pandakatanga Mepolizumab, ndakanga ndaona kuwedzera kwezvinetso nekusagadzikana, uye izvi zvakatanga muPyelonephritis yakazara (eColi Kidney Infection). Sezvo ini ndiine itsvo imwe chete, kushushikana pamusoro peizvi kwaive kwakakwira zvishoma sezvo zviratidzo zvaive / zvese zvakafanana neapo imwe itsvo yangu yakazobviswa. (Hapana chirongwa B pano). Toss-up: kukwanisa kufema maringe nekudzidza kubata nekusazvidzora?

 Ini ndinofukidza zvese zva2023 nenyaya dzeMental Health dzirikuenderera mberi nemuzukuru wangu ane makore 13-14 okuberekwa, saka mwanasikana wangu nemurume wake, wandaigara, vakabatikana chose nekuedza kumuchengetedza uye nerubatsiro rwese rwaanoda. . Tese tirikuchema kushaya mwana uyu ave kuchengetwa.

 Marwadzo akakwira, uye mazinga esimba akaderera zvakanyanya. Prednisone yakauraya kugadzirwa kwangu kwecortisol, saka ndine Secondary Adrenal Insufficiency uye Osteoporosis. 

 Asi ndinotenda

Ndinotenda zvikuru kuti ndakaropafadzwa kugara munyika ine Public Health System (ngave iri kuputsika zvakafanana neNHS). Ndakakwanisa kutamira kunzvimbo ine chipatara chakanaka chekudzidzisa uye kuva pedyo nemwanasikana wangu (Palliative Care chiremba) & murume wake (Anaesthetist), ndinokwanisa kuwana mishonga yehutano yeveruzhinji yemahara uye GP akanakisa anoteerera, anotarisa mufananidzo wese uye anoita nepaanogona napo kuti Nyanzvi yese iongorore mamiriro acho. Nguva ichangoburwa x-rays uye Dexta Scan yakaratidza kukura kwekukuvara uye kudzikira kweiyo spin: Ruzivo rwandinofanira kuunza kune iyo Physio iri kuyedza kubatsira nekukurudzira kwangu / activation yekusimbisa maekisesaizi. Endocrinology yakaratidza kuwedzera kwe5mg mune yangu hydrocortisone uye kusundira kunze kweiyo dose nguva, uye izvo zvaita MKURU mutsauko mukubata kwandinoita nezvese zviri kuitika uye kurwadziwa. Urology yakazobvuma kutumirwa kuti iongorore mamiriro eitsvo dzangu, kunyangwe zvingangove mwedzi mishoma vasati vandiona. Kuongororwa kuchangobva kuitwa naPhysio kwakaona kuti maekisesaizi akanga aita mutsauko, uye ndakanga ndakasimba zvikuru mumakumbo angu. Ndichiri kunetseka kuita izvi, asi ruzivo urwu runondizivisa kuti ndinofanira kutsungirira.

Hondo Huru ndiyo Mafungiro Epfungwa

Imwe neimwe yenyaya dzedu ichave yakasarudzika, uye kune mumwe nemumwe wedu, iyo hondo ndeyechokwadi. (Pandinonyora zvangu zvose pasi, zvinonzwika kuva zvinoti wedzeredzei, asi kazhinji, handizvifungi saizvozvo. Ndangotaura nyaya yangu semuenzaniso wekuoma kwerwendo.) 

Tinorarama sei neshanduko dzose dzinouya patiri? Ndaiziva kuti utano hwangu hwaizochinja sezvandaikura, asi ndinonzwa sokuti hwakakurumidza kuuya kwandiri. Ndakanga ndisingazvifungi sechembere, asi muviri wangu uri kunyatsofunga uye kuzvibata nenzira iyoyo!

Kudzidza ku:

Gamuchira zvinhu zvandisingakwanise kuchinja,

kushanda pazvinhu zvandinogona kuchinja,

Uye uchenjeri kuziva musiyano

Iyi nzira yekuregedza zviroto netarisiro nekuisa zvitsva, zvibodzwa zvine mwero kwave kwakakosha. Ndakadzidza kuti pashure pebasa rinonetesa zvikuru (kupfurikidza namano angu azvino), ndinofanira kugara pasi ndokuzorora kana kuti kuita chimwe chinhu chinondibvumira kuzorora ndokuva anobudirira. Ini ndakambove ndiri 'workaholic' uye ndisiri murongi, saka shanduko iyi yanga isiri nyore. Kuchinja kwese uku iNzira Yokuchema, uye sekurwadziwa kupi nokupi, tinopora zviri nani kana tikabvuma kuti chii, ipapo tinogona kudzidza kurarama nenhamo yedu. Tinogona kuenderera mberi mune ese 'new normals'. Ini zvino ndine dhayari rekuronga rine zvinyorwa pane zvandinoda / zvandinoda kuita, asi hazvina kurongwa zvakadzama sezvandinofanira "kuenda nekuyerera" sezvazvaive pamusoro pehuwandu hwesimba randinayo kuti ndiite zvinhu. Mubairo wacho ndewekuti ndinozopedzisira ndagadzirisa zvinhu. Kana ari 1 kana maviri emazuva ese mabasa, zvakanaka.

 Pandakazoongororwa muna 2019, ndakaudzwa kuti “yaisava kenza yemapapu; yaive ABPA, isingarapike uye isingarapike asi inogona kubatwa”. Izvo 'kudzorwa' zvinosanganisira, ini zvechokwadi handina kutora panguva iyoyo. Mishonga yese yatinotora ichava nemhedzisiro; antifungals uye prednisone zviri kumusoro uko mune izvozvo, uye dzimwe nguva inyaya dzeparutivi dzinonyanya kuoma kubata nadzo. Mupfungwa, ndinofanira kuzviyeuchidza kuti ndinogona kufema uye handina kufa nepneumonia yechipiri nekuda kwemishonga inochengeta aspergillosis pasi pesimba. Ini ndiri mupenyu nekuti ndinogadzirisa kutora kwangu kweHydrocortisone mazuva ese.

Kuyera mabhenefiti maringe nemhedzisiro. Pane mimwe mishonga yandakambodzidza nezve mhedzisiro uye contraindications uye kuyera ruzivo irworwo maererano nemabhenefiti ekubvisa Peripheral Neuropathy, ndakabvunzana naDr, uye isu takairasa. Mimwe mishonga inofanirwa kugara, uye iwe unodzidza kurarama nekushatirwa (rashes, ganda rakaoma, kuwedzera kurwadziwa shure, nezvimwewo). Zvekare, isu takasiyana mune izvo zvatinogona kubata, uye dzimwe nguva, iwo mafungiro (kusindimara) kwatinosangana nawo nemamiriro ezvinhu anozosarudza gwara redu.

Chinyorwa pamusoro pekusindimara…. Gore rakapera, ndakazvimisira chinangwa chekuwana avhareji yekufamba daro rangu kudzokera ku3k pazuva. Yakanga iri basa rekuita apo mamwe mazuva ndakanga ndisingasviki 1.5K. Nhasi, ndakakwanisa kufamba 4.5 pamhenderekedzo yegungwa uye, zvinotonyanya kukosha, ndakaona avhareji yemazuva ese pamusoro pemwedzi gumi nemiviri yapfuura kusvika ku12k pazuva. Saka, ndinopemberera kuhwina kwenguva yakareba sezvainogara. Ini ndinogadzira clip-pamapochi e iPhone yangu kuitira kuti ndinogara ndakaitakura kurekodha nhanho dzangu, uye ini nguva pfupi yadarika ndakatenga Smart Watch iyo inosanganisira kurekodha hutano hwangu data statistics. Chinhu chitsva chakajairika kuteedzera zvinhu izvi, uye Chikwata chekutsvagisa cheNAC chiri kushamisika kana data rakadaro rinogona kutibatsira kufanotaura ABPA flares nezvimwe.

Kwandiri, kutenda kwangu muhutongi hwaMwari kwakakosha mukundichengeta ndakatarisa uye ndichifambira mberi.     

 “Iye akandiruka ndiri mudumbu ramai vangu. Mazuva angu anosimbiswa noruoko rwake. Pisarema 139. 

Ndakaponeswa neNyasha, naKristu chete. 

Hongu, huwandu hwehutano hwangu hunogona / huchabatsira pakufa kwangu; tose tinofa pane imwe nguva, asi ndinogona kurarama upenyu hwakanakisisa hwandinogona iye zvino, ndichiziva kuti Mwari achine basa rokuti ndiite. 

“Nyika ino haisi imba yangu. Ndiri kungopfuurawo zvangu.   

Kutaura nevamwe paTimu Vhidhiyo uye kuverenga zvinyorwa kana nyaya paFacebook Tsigiro kana webhusaiti zvese zvinowedzera kundibatsira kuti ndirambe ndine tariro. (Kazhinji kazhinji) Kunzwa nyaya dzevamwe kunobatsira kudzosera kumashure maonero angu … ndingatonyanya kuipa. Saka, nepandinogona napo, nerubatsiro rwaShe, ndinotarisira kukurudzira vamwe kuti varambe vachifamba munzira yakaoma yaunozviwana uri mairi. Hongu, dzimwe nguva zvinogona kuoma, asi zvitarise sedambudziko idzva. Hatina kuvimbiswa upenyu huri nyore.