Aspergillosis uye Kushungurudzika: Kufunga Kwemunhu

Mental Health yakanyorwa nemabhii akashata.

 

Alison Heckler anobva kuNew Zealand, uye ane Allergic Bronchopulmonary Aspergillosis (ABPA). Pazasi pane nhoroondo yaAlison yezvaakasangana nazvo munguva pfupi yapfuura neaspergillosis uye mabatiro aakaita pahutano hwake hwepfungwa.

Hutano hwemuviri nepfungwa zvinofambidzana. Kuvhura pamusoro pemabatiro angaita mamiriro asingaperi pahutano hwepfungwa kwakakosha kubvisa rusarura uye manzwiro ekuzviparadzanisa nevamwe. Kuno kuNational Aspergillosis Center, tinopa inodziya, isina kumanikidza chaiyo yekutsigira boka kwaunogona kutaura nevamwe, kubvunza mibvunzo kana kungogara uye kuteerera. Mashoko pamusoro pemisangano yedu yevhiki nevhiki anogona kuwanikwa pano. Kana usingakwanise kujoina boka redu retsigiro, isu tine hushamwari Facebook boka kwaunogona kubvunza mibvunzo, kuwana mazano uye kuwana zviratidzo zvezvinhu zvinobatsira.

 

Aspergillosis uye Kushungurudzika: Kufunga Kwemunhu 

Iye zvino zvandisiri kunzwa zvakanyanya pasi, ndafunga kuti inguva yakanaka yekunyora nezve kubata ne "the blues" iri pedyo nekuora mwoyo. 

 

Ndanga ndichinetseka chaizvo nekuenda kwevhiki kana maviri. Kurwadziwa kwepleural kubva kuABPA kwave kunetesa; kuneta uye kupera kunoshungurudza. Mukuwedzera, ndinotambura nemafungu ekunzwa kupisa, kunyanya usiku. Dzimwe nguva, ndinozoziva kuti kufema kwangu kwave kudzika uye nekukurumidza mukuedza kunzvenga kusagadzikana kwekufema (nguva yekukanda mumaitiro akanaka ekufema).

 

Ndanga ndadzoka paItraconazole kwemavhiki anopfuura 8, uye ndinofunga kuti ndaitarisira kuti ichaunza kuvandudzwa, asi kwete ikozvino. Ini zvakare ndine itsvo imwe chete uye 'contorted urethra' inokonzera weti reflux, saka kurwadziwa / kusagadzikana uye nyaya mudhipatimendi repombi. Ndine osteoporosis kubva pakurebesa prednisone kurapwa uye neuro pain mutsoka nemakumbo. Ndinorwadziwa muviri wese. Ndinonzwa kunge ndiri kurarama neparacetamol, inhalers etc. Hapana chimwe chazvo chinoita sechine mutsauko. Vanachiremba vanotsinhira kuti handifemereki.

 

Chinhu chekutanga mangwanani, muromo wangu wakavharwa nekusvibiswa kwakaoma izvo zvino zvinogadzirisa sefuro yero-brown kusvikira sinuses nepamusoro pebronchial turakiti zvacheneswa; zvobva zvaita kuti pave nefuro jena kana rakachenuruka. Kudzosa marwadzo uye kufema pasi pesimba mangwanani ega ega zvinoita senge basa hombe rinotora angangoita maawa maviri kuti meds uye simba rinokwevera rirove (uye pamwe zvakare kadiki tsika yekofi) mukati.

 

Mumwe murwere nguva pfupi yadarika akatiyeuchidza nezvesimba resimba rezuva nezuva richionekwa sezvipunu gumi nembiri pazuva, uye chinhu chidiki chese chatinoita chinoshandisa chipunu chesimba. Nehurombo, munguva pfupi yapfuura, zvipunu zvangu zvangove diki diki saizi!

 

Hapana kana chimwe chezviratidzo kubva pazvinhu zvose zviri pamusoro apa, pachezvazvo, chinganzi chikuru kana chakakosha; asi vanobatana kuti ndinzwe sekunge ndichangobva mukurwara kwakanyanya kwepneumonia (asi handisati ndamborwara zvakadaro). Chiitiko chekare chinonditungamira kuti ndifunge kuti zvese zvinogona kuve zvakanaka zvakare nenguva, kuzorora, uye kuvakazve kusimba. 

 

Zvisinei, chokwadi ndechekuti: Chii chinokonzerwa nemamiriro ezvinhu uye chii chinonzi side effect yemishonga inenge isingakwanisi kuziva. Saka iyo mess iyi yakaoma kuenzanisa chiitiko chechikwata chekurapa pakati pemamiriro akasiyana siyana uye zvinogoneka zvinokonzeresa kuti uwane hupenyu hunonzwisisika. 

 

Ndakanga ndichienderera mberi, ndichidzidza kubvuma kuti ndinofanira kuzorora mumuviri kakawanda asi ndaive nechirongwa chiduku chekugara chandaigona kuita. “Ndinogona kuzvibata,” ndakafunga kudaro. Zvino zvimwe zvinhu zviviri zvakakanganisika; Ndakabvarura imwe ganda kubva pa "prednisone tissue bepa maoko" yaida zvipfeko zvekurapa, ipapo NZ yakanyudzwa muNzira 4 Lockdown nekuda kweCCIDIDA Delta musiyano wakabuda munharaunda. Saka rwendo rwakarongwa rwekukembi rwekupemberera kusvitsa makore makumi mashanu eMuchato weshamwari yangu uye kudzokera kumusha kwangu kumhenderekedzo yegungwa kunoshanda mapurojekiti uye kuunganidza zvinhu zvandakanga ndisati ndatamira kuyuniti zvakakanzurwa, uye ndakavharirwa kumakota. Sndakaerekana ndakurirwa nekupererwa. 

 

Ndakabata Depression makore mazhinji apfuura, uyezve, seMufambisi Wekudzoreredza Kushungurudzika, ndine ruzivo uye zvekushandisa zvekuzvibatsira kuburikidza neizvi. Asi yakauya mumafungu, uye simba rekurwa rakanga risipo. Saka inogona kuva nzvimbo inotyisa zvikuru kuzviwana iwe pachako.

 

Kushungurudzika hakuna musoro (ndine zvakawanda zvekutenda uye mamiriro muNew Zealand haana kuoma). Pandakanga ndichifunga kuti sei ndakanga ndichitamburira kubvisa kuora mwoyo, ndakaona kuti kusvika pamwero wakati; Ndakanga ndisati ndanyatsonzwisisa kuti aspergillosis inochinja sei upenyu hwangu. Ndakanga ndave nenguva dzekunzwa zvakanaka kana zvichienzaniswa nekurwara kwandaive ndaita pandakatanga kubatwa, uye kupisa kwanga kwave kupfupi kubva ipapo. Nguva ino kwete zvakanyanya. Zvakangofanana pawakatanga kushanda kuburikidza nekufirwa, unofunga kuti wakasuwa uye unosvika pakugamuchira kurasikirwa. Kuramba kudiki kwekukanganisa, pamwe. Zvino pakarepo, inorova ... Aspergillosis chirwere chisingaperi. Izvo hazvizodzoserwe kubva. Kucharamba kuine kugadziridzwa mumararamiro anodiwa. 

 

Izvi chokwadi hazvidi kundipinza mukuora mwoyo. Kuziva uye kubvuma chokwadi kunozondipa simba rekuona mufananidzo mukuru. Inogona kutarisirwa (kusvika padanho). Vamwe vakakunda nyaya hombe kupfuura dzangu. Pane zvinhu zvandinogona kugadzirisa zvingabatsira. Kurwisana kwangu kunogona kuva kurudziro kune mumwe munhu. Kutaura nevamwe nekunyora zvese zvinobatsira. 

 

Zvinotonyanya kukosha ndezvokuti kwandiri, somuteveri waJesu Kristu, ndinotenda zvakasimba muuchangamire hwaMwari uye pakati pemiedzo kana matambudziko andingave ndinawo munyika ino, Ane hurongwa hukuru hwekundinakira, kuti andikweve. muukama hwepedyo nehutatu hwaMwari Baba, Mwanakomana naMweya Mutsvene, vachindigadzirira nekusingaperi Naye. Miedzo yandinosangana nayo inobatsira pakuita izvozvo. Parizvino ndiri kuverenga zvakare bhuku rakanaka kwazvo, "The Pressures Off" naLarry Crabb, iro riri kubatsira nekufunga kwangu pane izvi. 

 

Kana iwe uchida kuverenga zvakawanda nezvekuti ungatsigira sei hutano hwako hwepfungwa, Yese Mind Matters ine mamwe epamusoro matipi aripo. pano.

Palliative Care - Kwete Zvaungafunga

Vanhu vanorwara nguva nenguva vanokumbirwa kuti vafunge kupinda munguva yekugamuchira rubatsiro rwekurwara. Pachinyakare kuchengetedzwa kwepalliative kwaienzaniswa nekupera kwehupenyu hwekutarisira, saka kana ukapihwa palliative care inogona kutyisa tarisiro uye ndezvemuzvarirwo kufunga kuti vashandi vako vehutano vari kukugadzirira nhanho dzekupedzisira dzehurwere hwako. Hazvina kudaro.

Kupera-kwe-hupenyu kutarisira kunowanzo kutenderera pakuita kuti inguvai yawasiya yakasununguka pazvinogoneka. Kuwedzera kurongeka kwekuchengetedza kunoita zvakawanda kupfuura izvozvo - iyo NHS ruzivo peji paKupera-kwe-hupenyu kuchengetedza inosanganisira zvinotevera:

Kupera kwehupenyu kuchengetedza kunosanganisira palliative care. Kana uine chirwere chisingarapike, kurapwa kwepalliative kunoita kuti ugadzikane sezvinobvira, by kugadzirisa marwadzo ako nezvimwe zviratidzo zvinoshungurudza. Zvinosanganisirawo rutsigiro rwepfungwa, rwemagariro uye rwemweya kwauri nemhuri yako kana vachengeti. Izvi zvinodaidzwa kuti maitiro akazara, nekuti anobata newe semunhu "akazara", kwete hurwere kana zviratidzo zvako.

Palliative care haingori yekuguma kwehupenyu - unogona kuwana rubatsiro rwekunyorovesa pakutanga pahurwere hwako, uchiri kugamuchira mamwe marapirwo ekurapa mamiriro ako.

Kana tataura nezve palliative care kumapoka edu evarwere heano mamwe emashoko:

Palliative care inogona kubatsira zvikuru. Mumwe munhu wandakashanda naye akanga asina kusimba patakatanga kuonana makore mashomanana adarika mushure mekushanda nesimba. Aitotadza kutaura. Akaendeswa kune chimwe chikwata chemunharaunda chekuchengetedza varwere pane imwe hospice uko vakakwanisa kupa zvakasiyana-siyana zvezviitiko, kurapwa kwakakwana uye kushamwaridzana. Iye zvino ari nani zvikuru uye murume ane kutaura, achifamba nehupenyu huri nani.

 vanopinza kudzikama nouchokwadi mumamiriro ezvinhu umo vasingawanzovapo.

Ini handigone kukurudzira kuendeswa kune palliative care zvakakwana. Ndapota usafunge kuti palliative care uye kupera kwehupenyu kuchengetedza kwakafanana.

Palliative care inounzwa neruzhinji rwenyanzvi dzekurapa kuitira kuti mukwanise kubvunza kuburikidza naChiremba wenyu kana chiremba wechipatara. Inogona kuunzwa munzvimbo dzakati wandei - mumienzaniso mishoma yatakanzwa nezve nguva pfupi yadarika imwe hospice yemuno yakapa rutsigiro rwekuzadzisa zvinangwa zvega zvekugara zvakanaka - kumurwere nemuchengeti wavo nemhuri. Zvakaita mutsauko mukuru kuhupenyu hwevanhu vaibatanidzwa.

Hospice UK

 

Aspergillosis Murwere & Muchengeti Tsigiro

Maoko mazhinji anofananidzira vanhu vanouya pamwechete uye vane hanya uye vachiuya pamwechete kuti vabatsire mumwe nemumwe neaspergillosis yavo.

Pano paNational Aspergillosis Center, tinonzwisisa kukosha kwekupa rubatsiro uye kudada pachedu pakuunza avo vakabatwa neaspergillosis pamwechete.

 

Kuburikidza nematanho edu enhau dzemagariro, boka redu revhiki nevhiki rekutsigira uye misangano yevarwere pamwedzi, tinopa mapuratifomu anosvikika uko vanhu vanogona kubvunza mibvunzo, kugovana zvavakasangana nazvo muhupenyu neaspergillosis, uye kuratidza manzwiro avo uye kushushikana - nevanhu vanonzwisisa pekutanga. Nhengo dzedu dzinogara dzichigovera zano reanecdotal uye isingaperi sosi yerutsigiro nekurudziro. Chikwata cheNAC chinogara chiripo kuti chipe ruzivo, signpost kune zviwanikwa, uye pamusangano wepamwedzi wega wega, tinopa pamusoro penyaya dzine chekuita neaspergillosis.

Tine a vhiki nevhiki boka rekutsigira rinosangana (zvichida) China yega yega na10am uye imwe yakarongeka musangano wepamwedzi neChishanu chekutanga chemwedzi wega wega, 1 - 3 pm. Munhu wese anogamuchirwa. Misangano yakavharwa, uye haufanirwe kunge uri murwere weNAC - kutaura zvazviri, hautombofanire kunge uri muUK - tinogamuchira vanhu vanobva pasi rese!

Alison Heckler anobva kuNew Zealand, uye ane Allergic Bronchopulmonary Aspergillosis (ABPA). Alison aive nemoyo munyoro zvekuti akatiudza kuti sei, mavhiki mazhinji, achigara achipfuura nguva yake yekurara kuti abatanidze musangano wedu wevhiki werutsigiro.

 

Ndakapinda muAspergillosis Support Group pandakatanga kubatwa nechirwere chinonzi aspergillosis. Ini ndakapihwa zero ruzivo, saka ndanga ndichitsvaga kwainovimbika kunobva ruzivo. Ndakanga ndichirwara panguva iyoyo, uye imwe nhengo yeboka yakandivimbisa kuti kana mishonga yangu yave yakarurama, ndaizowana imwe nhanho yehupenyu zvakare.

 

Wese munhu aikurudzira asi achiri kutaura chokwadi uye akatendeseka pamusoro pekuoma kwemamiriro acho.

Graham nevamwe kubva kuchikwata cheNAC vaigona kupindura mibvunzo kubva kune ruzivo, maonero ehunyanzvi, pamwe nekupa ruzivo nezvetsvagurudzo nebudiriro.

 

Ini hapana wandinoziva muNZ ane Aspergillosis, saka zvakanaka kuve neboka reshamwari dzinotora pandinenge ndiri (health-wise), vasingade tsananguro uye vane zvinhu zvinokurudzira zvekutaura. Vanoitira hanya kubva pachinzvimbo chehukama nekunzwisisa kuti "kutaridzika zvakanaka" hazvireve kuti ndiri ini.

Zvinobatsirawo, pandinenge ndichinyanya kushushikana, kuziva kuti vamwe vari kubata nenhau dzakatowanda uye kudzosa zvinhu mugwara.

 

Nekuti boka iri rinenge riri reBritish, nhaurirano yacho inowanzotarisana neNHS, asi kunyangwe izvo zvinobatsira kuti ndirambe ndiine maonero. Pane ruzivo runofanira kuunganidzwa. NZ ine yakafanana Public Health System, uye timu yangu yazvino yekurapa inoita seinonzwisisa ABPA. Nekukanganisa kwayo kwese, ndinotenda zvikuru zvatinazvo, kunyanya kana ndine manzwisisiro ehurongwa mune dzimwe nyika.

 

Ini ndinoda misangano chaiyo paZoom nekuti ndiri kutaurirana nevanhu chaivo; haingori chikafu chakanyorwa chisingazivikanwe. Tinogona kuseka uye kuseka pamwe chete uye kugovana zvishoma zvehupenyu hwedu. Hurukuro dzakanangana zvishoma, dzinowanzoitwa nemubvunzo wemumwe munhu, dzinodzidzisa uye dzinobatsira. Izvi zvinobva zvarumbidza zvinyorwa zvakakosha zvakatumirwa pamapeji ekutsigira uye webhusaiti.

Kuti uwane rumwe ruzivo uye ruzivo rwekuti ungajoinha sei misangano yedu, tevera zvinongedzo pazasi:

Aspergillosis Patient & Carer Virtual Support Group, China yega yega 10am. 

Aspergillosis Monthly Patient & Carer Meeting, Chishanu chekutanga chemwedzi wega wega, 1 - 3pm.

 

Unogona kutiwana paSocial Media:

Maringazuva, kuzvimiririra uye kuongororwa kenza kwanga kusiri: nyaya yaMarie's aspergillosis.

Muiyi podcast naMy Rare Disease, Katy, muvambi wenhevedzano, anotaura naMarie nezverwendo rwake rweaspergillosis.

Marie anotaura pachena nezve kubata neiyo diagnostic odyssey, kukanganiswa kwemanzwiro, kudiwa kwekuzvimiririra uye kuvimba nehunhu hwako hwemukati, uye kuti anotenda sei kuti zvese zvakatanga nesunflower.
Paakakumbirwa kupfupisa aspergillosis, Marie anoshandisa mazwi matatu ane simba achabaya mwoyo nevarwere vakawanda kwazvo vane aspergillosis:
  • Zvinotiza
  • Zvinoshamisa
  • Permanent
Iko nzwisiso yerwendo rwusina chokwadi varwere vazhinji veaspergillosis vanofanirwa kutsungirira vasati vasvika pakuongororwa, uye unogona kuteerera kuchikamu chiri pazasi kana kuburikidza neicho chinongedzo. pano.

Unogona kuteerera kune mamwe ehurukuro dzaKaty's podcast nekushanyira https://www.listennotes.com/podcasts/my-rare-disease-katy-baker-thapc81FBOw/
Kana iwe uchida kuziva zvakawanda nezve aspergillosis shanyira yedu ruzivo peji pano. 

Rwendo rwekuongorora aspergillosis

Mufananidzo unoratidza mufananidzo wemapapu maviri, ane mavara 'An aspergillosis diagnostic journey' Gwynedd Mitchell

Aspergillosis chirwere chisingawanzo uye chinopedza simba chinokonzerwa neaspergillus mold. Chiumbwa ichi chinowanikwa munzvimbo dzakawanda, kusanganisira ivhu, mashizha ari kuora, manyowa, huruva, uye zvivakwa zvinyoro. Kune akati wandei echirwere ichi, anonyanya kukanganisa mapapu, uye kuongororwa kwakaoma nekuti zviratidzo zvakaita semamwe mamiriro emapapu. 

Gwynedd Mitchell ane makore 62. Ane vana vaviri vakura uye anogara nemurume wake muWales. Gwynedd anoziva nezvezvinetso zvoutano; ane allergies zvakanyanya, akatambura kufema kubva pamasvondo matanhatu, uye achiri mwana, akaonekwa kuti ane asima uye aigara achirwiswa. Asi muna 2012, akasiiwa akavhunduka paakaonekwa aine matatu aspergillosis akasiyana, allergic bronchopulmonary aspergillosis (ABPA), chronic pulmonary aspergillosis (CPA) uye matatu aspergillomas (bhora remukuvhu mumapapu).

Ichi ndicho chiitiko chake cheaspergillosis yekuongorora rwendo.

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