Akarara pasi pemuchina wekufema kwemwedzi mitanhatu, achimirira kufa kwake. Zvakaitika zvakasiyana. Nhasi, anobatsira vamwe vanorwara nechirwere chisingawanzooneki chine chiratidzo chekupwanya. -Kuti titarise dambudziko redu, pachiitiko cheRare Diseases Day mumigwagwa yemaguta ePoland, tichange tichipa bhuruu-shaped lollipops kune vanopfuura - anodaro Piotr Manikowski, Mutungamiri wePolish Association of People with Pulmonary. Hypertension uye Shamwari Dzavo.
Zvakatora nguva yakareba sei vanachiremba kuti vaone chirwere chako?
-Iyo yaive makore gumi apfuura. Ndaiva nemakore 10 uye ndaisakwanisa kukwira masitepisi okuenda pauriri hwekutanga. Kutopfeka kana kuwacha zvakandiitira basa guru. Ndainge ndokachidzwa, ndakapererwa nemweya wekufema, ndakanzwa kubaiwa nechipfuva. Vanachiremba vanofungidzirwa kuti anemia, asima, pulmonary embolism uye neurosis. Ndakatotora mishonga yekunyaradza. Hongu, hazvina kubatsira, nokuti kuongororwa kwakanga kusina kururama. Mushure memwedzi mitanhatu ndakauya kuWarsaw kuzoona purofesa. Adam Torbicki aine fungidziro yepulmonary embolism, akazoziva idiopathic pulmonary hypertension.
Waiziva here kuti kuongororwa uku kunorevei?
- Kwete pakutanga. Ndakafunga – ndichanwa mapiritsi eBP uye ndichapora. Paiva paInternet chete pandakaverenga kuti chirwere chisingawanzoitiki, chinobata vanhu ve400 chete muPoland, uye kuti pasina kurapwa, hafu yavo inofa mukati memakore maviri ekuongororwa. Ndakashanda semazvikokota weIT. Kuongororwa kwaive kwakabatana nekuchinjira kuenda kupenjeni yekuremara. Mukadzi wangu aive nepamuviri pemwedzi mitatu. Ndaiziva zvangu kuti zvainge zvamuremera. Sezvineiwo, ndakanzwa zvakanyanya uye zvakazoitika kuti ruponeso kwandiri kwaive kuisirwa mapapu. Bazi rezvehutano ndiro rakandipa mari yekundivhiya kuVienna.
Zvakachinja sei hupenyu hwako?
– Ndakanzwa sembwa iri patambo. Ndaigona kuita zvese zvaisaita ndisati ndaiswa, nekuti kuedza kwacho kwaive kusisina kundiomera. Zvinosuruvarisa, mushure memakore matatu, malaise yakadzoka. Kusimwa kwakarambwa.
Warasa tariro here?
– Zvizere. Ndakanga ndiri muchipatara nomuchina unopinza mhepo kwemwedzi mitanhatu ndokumirira kufa kwangu. Nguva zhinji ndanga ndisina chandaiziva, kunyangwe ndaive nemheni yekuziva. Ndinoyeuka kugeza kwemangwanani, kudya uye mishonga - zvakadai semazuva ose emagetsi mabasa.
Sei wakarasikirwa nekutenda kuti chirwere chinogona kukurirwa?
- Ndisati ndasimwa, ndakaudzwa kuti iyi ndiyo yekupedzisira uye kuti kana ndikakundikana, hapana chirongwa "B". Saka apo physiotherapist vakauya uye vakaedza kufambisa muviri wangu, nokuti ndakanga ndive nemwedzi yakawanda ndakarara ipapo, zvakaratidzika sezvisina maturo kwandiri, nokuti ndakanga ndisisina kumirira chero chinhu zvakare. Kunze kwezvo, kunzwa kwokufema kwakanga kwakakomba sokunge waifanira kuisa bhegi repurasitiki pamusoro wako ndokurisunga pamutsipa wako. Ndaingoda kuti zvipere.
Uye ipapo pakanga paine mukana mutsva wekurapwa ...
- Ndakanga ndakakodzera kune yechipiri transplant, iyo yakaitikawo muVienna. Pashure pemwedzi, ndakadzokera kuPoland ndizere nesimba.
Izvi zvakuchinja sei?
– Pave nemakore mana kubva pakusimwa. Asi haumboziva zvichaitika zvakadaro. Ndiko kusaka ndichirarama kwenguva pfupi. Ini handiite zvirongwa zvekure, handidzingi mari, asi ndinonakidzwa nehupenyu, nguva yega yega. Mhuri yangu, mudzimai uye vanakomana mufaro mukuru kwandiri. Ndakabatanidzwa mumabasa ePolish Association of People with Pulmonary Hypertension and Their Friends, iyo yandiri purezidhendi wayo.
Varwere vane pulmonary hypertension vanoda rubatsiro - chii?
- Kuziva nezvechirwere ichi munharaunda, sezvimwe zvirwere zvisingawanzoitiki, hazvipo. Munhu ane utano haatombofungi kuti wechiduku asingagoni kufema kazhinji anomira onyepedzera kunyora meseji kuti asamutse manzwiro. Vaya vanorwara vanoshandisa mawiricheya pavanosimuka kuti vapinde mumotokari kana mukamuri vanomutsawo manyawi, nekuti zvinobva zvabuda kuti havana kuoma mitezo. Ndokusaka Sangano richikurudzira ruzivo nezvechirwere ichi kwese kwese.
Ruzivo urwu runodiwa zvakare nemachiremba…
- Hongu, nekuti chirwere chinoonekwa chanonoka. Uye nekuda kwekuti mishonga iripo nhasi inotadzisa kufambira mberi kwechirwere, zvakakosha kuti utange kurapwa kusati kwanyanya kukanganisa muviri.
Matambudziko api ari kurwisana nesonganiro yacho?
- MuPoland, varwere vanogona kuwana mishonga yepulmonary hypertension pasi pezvirongwa zvekurapa, asi ivo vakakodzera kwavari chete kana chirwere chacho chasvika padanho rinokosha rekufambira mberi. Vanachiremba vanotenda kuti kurapwa kunofanira kutanga nokukurumidza sezvinobvira, nokuti kudziviswa kwekukura kwechirwere kunotanga panguva yekutanga. Saka tiri kuyedza kunyengerera gurukota rezvehutano kuti vachinje maitiro ekukodzera chirongwa. Kugamuchirwa kwezvinodhaka zvakare dambudziko. Kare, chipatara chaigona kumutumira nenhume. Nhasi, varwere vanofanira kuzviita ivo pachavo. Rwendo runotyisa kune avo vari muhutano hwakakomba. Ndinoziva mukadzi anorwara anofamba kubva kuTri-City kuenda kuOtwock.
Tinodawo kuti pave nenzvimbo dzakati wandei dzine hunyanzvi hwepulmonary hypertension muPoland, uko vanachiremba, vachisangana nevarwere vazhinji, vanogona kuita tsvakiridzo nekuvandudza nzira dzekurapa. Sezvo chirwere chacho chisingawanzoitiki, zvakaoma kuti chiremba awane ruzivo rwechipatara paanenge achitarisira murwere mumwe chete kana vashomanana.
Chii chawakagadzirira Rare Disease Day?
-28 Kukadzi gore rino muWarsaw uye muna Kukadzi 29 gore rino. MuKrakow, Bydgoszcz neTri-City, yakakosha "blue brigade" yeSangano redu ichaonekwa mumigwagwa uye munzvimbo dzakasarudzwa dzekutenga, iyo pasi pechirevo chekuti "Kana uchinge wapera mweya ..." ichaita mushandirapamwe wekudzidzisa pamapurmonary. hypertension. Chiito ichi chichavhurwa nekuita muWarsaw - munaFebruary 28 gore rino. 12-00 pamberi peMetro Centrum. Chero ani zvake anofarira achakwanisa kuona chiono cheunyanzvi chekurwisana nechirwere chinoitwa nevatambi vanobva kuPuszka Theater. Mukati memushandirapamwe, mapepa edzidzo uye miromo yeblue-shaped lollipops achagoverwa mumaguta ose ataurwa pamusoro apa - chiratidzo chemushandirapamwe, nokuti miromo yevarwere inoshanduka kuva yepepuru.
Pulmonary hypertension chirwere chinopfuurira, chinouraya chinokanganisa mapapu nemoyo. Iyo inoratidzirwa nekukwirira kweropa mumapapu emapapu. Huwandu hwekufa mupulmonary arterial hypertension dzimwe nguva hwakakwira kupfuura mune mamwe magomarara, kusanganisira kenza yemazamu uye colorectal cancer. Vanhu vanotambura nechirwere ichi chakakomba vanoda rubatsiro sezvo ichikanganisa zvinhu zvakawanda zvehupenyu hwezuva nezuva, zvakadai sekufamba masitepisi, kufamba uye kupfeka. Zviratidzo zvinowanzoonekwa zvechirwere ndezvekufema, miromo yebhuruu uye kuneta. Zviratidzo hazvisi zvakanangana, saka pulmonary hypertension inowanzovhiringika neasthma kana zvimwe zvirwere, uye zvinotora mwedzi kusvika kumakore kuti uongorore. MuPoland, vanhu mazana mana vanorapwa chirwere ichi.
Mubvunzurudzo: Halina Pilonis