Khansa Yanga Ya m'magazi Inachiritsidwa, Koma Ndili Ndi Zizindikiro Zosatha

Zamkati

• Momwe ndinafikira pano
• Kupeza chizindikiro choyenera
• Zomwe ndakumana nazo kuyambira pomwe ndidachiritsidwa
• 1. zotumphukira za m'mitsempha
• 2. Nkhani zamano
• 3. Khansa ya lilime
• 4. Matenda olimbana nawo
• 5. Zotsatira zoyipa za Prednisone
• Momwe Ndimapiririra
• 1. Ndimalankhula
• 2. Ndimachita masewera olimbitsa thupi pafupifupi tsiku lililonse
• 3. Ndimabweza

Matenda anga a myeloid leukemia (AML) adachiritsidwa mwalamulo zaka zitatu zapitazo. Chifukwa chake, pomwe oncologist wanga adandiuza posachedwa kuti ndili ndi matenda osachiritsika, osafunikira kunena kuti ndidadabwitsidwa.

Zinachitikanso chimodzimodzi nditalandira imelo yondiitana kuti ndilowe nawo pagulu la macheza "kwa omwe ali ndi khansa ya myeloid" ndipo ndidamva kuti ndi "a odwala" omwe anali mkati ndi kunja kwa chithandizo.

Momwe ndinafikira pano

Khansa ya m'magazi inandigwira ndili ndi zaka 48. Mayi wosudzulidwa wa ana atatu azaka zakusukulu omwe amakhala kumadzulo kwa Massachusetts, ndinali mtolankhani wa nyuzipepala komanso wothamanga komanso wosewera tenisi.

Ndikuthamanga Mpikisano wa Road Saint Patrick ku Holyoke, Massachusetts mu 2003, ndidamva kutopa modabwitsa. Koma ndidamaliza komabe. Ndinapita kwa dokotala masiku angapo pambuyo pake, ndipo kuyezetsa magazi ndi kufufuzidwa kwa m'mafupa kunawonetsa kuti ndinali ndi AML.

Ndidalandira chithandizo cha khansa yamagazi yoopsa kanayi pakati pa 2003 ndi 2009. Ndidalandira mankhwala ozungulira chemotherapy katatu ku Dana-Farber / Brigham ndi Women's Cancer Center ku Boston. Ndipo zitatha izi kudabwera kusintha kwa khungu. Pali mitundu iwiri ikuluikulu yoziika, ndipo ndili nayo yonse: autologous (komwe maselo am'magazi amachokera kwa inu) ndi allogenic (pomwe maselo amachokera kwa wopereka).

Nditabwereranso kawiri ndikulephera kumezanitsa, dokotala wanga adandipatsa kachilombo kachilendo kwachinayi ndi chemotherapy wamphamvu komanso wopereka watsopano. Ndinalandila maselo amtundu wathanzi pa Januware 31, 2009. Patatha chaka ndikudzipatula - kuti ndichepetse kupezeka kwanga kwa majeremusi, zomwe ndimachita ndikamubzala - ndinayamba gawo lina m'moyo wanga… wokhala ndi matenda osachiritsika.

Kupeza chizindikiro choyenera

Ngakhale zotsatira zake zidzakhala kwa moyo wanga wonse, sindimadziona ngati "wodwala" kapena "wokhala ndi AML," chifukwa ndilibenso.

Anthu ena opulumuka amatchedwa kuti "amakhala ndi matenda osachiritsika," ndipo ena akuti "amakhala ndi matenda osachiritsika." Chizindikiro chimenecho chimamveka ngati choyenera kwa ine, koma zilizonse mawu, opulumuka onga ine amamva ngati kuti nthawi zonse amakhala akuchita china chake.

Zomwe ndakumana nazo kuyambira pomwe ndidachiritsidwa

1. zotumphukira za m'mitsempha

Chemotherapy idawononga mitsempha m'mapazi anga, zomwe zidapangitsa kuti ndikhale dzanzi kapena kumva kuwawa, kupweteka kwakuthwa, kutengera tsikulo. Zinakhudzanso magwiridwe anga. Ndizokayikitsa kuti apite.

2. Nkhani zamano

Chifukwa chouma pakamwa pa chemotherapy, komanso nthawi yayitali ndikakhala ndi chitetezo chamthupi chofooka, mabakiteriya adalowa m'mano mwanga. Izi zidawapangitsa kufooka ndikuwonongeka. Dzino limodzi linali loipa kwambiri moti zomwe ndikanatha kuchita zinali kugona pakama ndikulira. Pambuyo pa ngalande yolephera ya mizu, ndinachotsedwa dzino. Inali imodzi mwa khumi ndi iwiri yomwe ndidataya.

3. Khansa ya lilime

Mwamwayi, dotolo wamazinyo adazindikira kuti inali yaying'ono panthawi imodzi yotulutsa mano. Ndili ndi dokotala watsopano - oncologist wamutu ndi khosi - yemwe adachotsa pang'ono mbali yakumanzere ya lilime langa. Anali pamalo obisika komanso osachira pang'onopang'ono komanso opweteka kwambiri pafupifupi milungu itatu.

4. Matenda olimbana nawo

GVHD imachitika pamene maselo a omwe amaperekayo amalakwitsa ziwalo za wodwalayo. Amatha kuwononga khungu, kugaya chakudya, chiwindi, mapapo, ziwalo zolumikizana, ndi maso. Kwa ine, zidakhudza m'matumbo, pachiwindi, ndi pakhungu.

GVHD yamatumbo imayambitsa collagenous colitis, kutupa kwa m'matumbo. Izi zinatanthauza kupitirira milungu itatu yomvetsa chisoni yotsekula m'mimba. zinayambitsa michere yambiri ya chiwindi yomwe imatha kuwononga chiwalo chofunikira ichi. GVHD yakhungu idatupa manja anga ndikupangitsa kuti khungu langa liume, ndikulepheretsa kusinthasintha. Ndi malo ochepa omwe amapereka chithandizo chomwe chimafewetsa khungu lanu pang'onopang'ono:, kapena ECP.

Ndimayendetsa kapena kukwera ma 90 mamailo kupita ku Kraft Family Donor Center ku Dana-Farber ku Boston. Ndimagona kwa maola atatu kwinaku singano yayikulu ikutulutsa magazi mmanja mwanga. Makina amalekanitsa maselo oyera oyera. Kenako amathandizidwa ndi photosynthesizing agent, kuwunikira kuwala kwa UV, ndikubwerera ndi DNA yawo yasinthidwa kuti iwakhazike mtima pansi.

Ndimapita sabata lina lililonse, kutsika kawiri pa sabata pomwe izi zidachitika mu Meyi 2015. Anamwino amathandizira kupititsa nthawi, koma nthawi zina sindimatha kulira pamene singano igunda minyewa.

5. Zotsatira zoyipa za Prednisone

Steroid iyi imachepetsa GVHD pochepetsa kutupa. Koma imakhalanso ndi zotsatirapo. Mlingo wa 40-mg womwe ndimayenera kutenga tsiku lililonse zaka zisanu ndi zitatu zapitazo unapangitsa nkhope yanga kudzikuza komanso kufooketsa minofu yanga. Miyendo yanga inali yovunda kotero kuti ndimagwedezeka poyenda. Tsiku lina ndikuyenda galu wanga, ndinagwa chambuyo, ndikupeza maulendo angapo opita kuchipatala.

Thandizo lakuthupi ndi kuchepa pang'ono pang'onopang'ono - tsopano 1 mg tsiku lililonse - zandithandiza kulimba. Koma prednisone imafooketsa chitetezo cha mthupi ndipo imathandizira pama khansa ambiri amphuno akhungu omwe ndapeza. Ndawachotsa pamphumi, mkodzo, tsaya, dzanja, mphuno, dzanja, ng'ombe, ndi zina zambiri. Nthawi zina zimangomverera kuti monga m'modzi wachira, wina wopunduka kapena wowonekera amaimira wina.

Momwe Ndimapiririra

1. Ndimalankhula

Ndimalankhula kudzera mu blog yanga. Ndikakhala ndi nkhawa zamankhwala anga kapena momwe ndimamvera, ndimalankhula ndi wondithandizira, adotolo, komanso namwino. Ndimachitapo kanthu moyenera, monga kusintha mankhwala, kapena kugwiritsa ntchito njira zina ndikakhala ndi nkhawa kapena kukhumudwa.

2. Ndimachita masewera olimbitsa thupi pafupifupi tsiku lililonse

Ndimakonda tenesi. Gulu la tenisi lakhala likundithandiza modabwitsa ndipo ndapeza abwenzi kwanthawi zonse. Zimandiphunzitsanso machitidwe oyang'ana chinthu chimodzi nthawi imodzi m'malo motengeka ndi nkhawa.

Kuthamanga kumandithandiza kukhazikitsa zolinga ndipo ma endorphins omwe amatulutsa amandithandiza kuti ndikhale wodekha komanso wolunjika. Yoga, pakadali pano, yandithandiza kuti ndizitha kusinthasintha.

3. Ndimabweza

Ndimadzipereka mu pulogalamu yaukatswiri yophunzitsa kuwerenga ndi kulemba yomwe ophunzira angapeze thandizo ndi Chingerezi, masamu, ndi mitu ina yambiri. M'zaka zitatu zomwe ndakhala ndikuchita izi, ndapeza anzanga atsopano ndikumva chisangalalo chogwiritsa ntchito luso langa kuthandiza ena. Ndimakondanso kudzipereka mu pulogalamu ya Dana-Farber's One-to-One, pomwe opulumuka ngati ine amathandizira omwe amathandizidwa kale.

Ngakhale anthu ambiri sakudziwa, "kuchiritsidwa" matenda ngati khansa ya m'magazi sikutanthauza kuti moyo wanu umabwereranso momwe udalili kale. Monga mukuwonera, moyo wanga watatha khansa ya m'magazi yadzaza ndi zovuta komanso zoyipa zosayembekezereka zamankhwala anga ndi njira zamankhwala. Koma ngakhale awa ndi magawo opitilira moyo wanga, ndapeza njira zowongolera thanzi langa, thanzi langa, komanso malingaliro anga.

Ronni Gordon ndi amene adapulumuka matenda a khansa ya m'magazi komanso wolemba Kuthamangira Moyo Wanga, yomwe idatchedwa imodzi mwa magazi athu apamwamba a khansa ya m'magazi.