Ileukemia yam yanyangwa, kodwa ke ndineempawu ezingapheliyo

Umxholo

• Ndize njani apha
• Ukufumana ileyibhile efanelekileyo
• Into endijongene nayo ukusukela oko ndanyangeka
• 1. Imithambo-luvo yomda
• 2. Imiba yamazinyo
• 3. Umhlaza wolwimi
• 4. I-Graft-versus-host host
• 5. Iziphumo ebezingalindelekanga zePrednisone
• Ndijamelana Njani
• 1. Ndiyathetha
• 2. Ndenza umthambo phantse yonke imihla
• 3. ndibuyisela

I-myeloid leukemia yam ebukhali (AML) yanyangwa ngokusemthethweni kwiminyaka emithathu edlulileyo. Ke, xa i-oncologist yam kutsha nje yandixelela ukuba ndinesifo esinganyangekiyo, ngaphandle kwesizathu sokuba ndothukile.

Ndaye ndasabela ngokufanayo xa ndafumana i-imeyile endimemela ukuba ndijoyine iqela lengxoxo "kwabo baphila ne-leukemia ebukhali ye-myeloid" kwaye ndafumanisa ukuba "yayizezabaguli" ababengena kwaye bengaphandle konyango.

Ndize njani apha

Ileukemia yandibamba xa ndandineminyaka engama-48 ubudala ndisempilweni. Umama woqhawulo mtshato wabantwana abathathu abakwiminyaka yesikolo abahlala kwintshona yeMassachusetts, bendiyintatheli yephephandaba kwaye ndiyimbaleki enomdla kunye nomdlali wentenetya.

Xa ndiqhuba umdyarho weNdlela iPatrick Patrick eHolyoke, eMassachusetts ngo-2003, ndaziva ndidiniwe ngokungaqhelekanga. Kodwa ndigqibile kunjalo. Ndaya kugqirha wam kwiintsuku ezimbalwa kamva, kwaye kuvavanyo lwegazi kunye nomongo wethambo lubonisa ukuba ndine-AML.

Ndafumana unyango kunyango lomhlaza wegazi amatyeli amane phakathi kuka-2003 no-2009. Ndafumana imijikelo emithathu ye-chemotherapy eDana-Farber / Brigham nase-Women’s Cancer Centre eBoston. Kwaye emva koko kwafika ukutshintshwa kweseli. Zimbini iintlobo eziphambili zokufakelwa, kwaye ndazifumana zombini: i-autologous (apho iiseli zeziqu zivela kuwe) kunye neallogenic (apho iiseli zeziqu zivela kumnikeli).

Emva kokubuyela umva izihlandlo ezibini kunye nokusilela kokumiliselwa, ugqirha wam wandinika ukufakelwa okwesine ngokungaqhelekanga nge-chemotherapy eyomeleleyo kunye nomnikeli omtsha. Ndafumana iiseli ezinesiqu ezisempilweni ngoJanuwari 31, 2009. Emva konyaka ndihleli ndodwa - ukunciphisa ukubonwa kwam kwiintsholongwane, endithe ndakwenza emva kokukhuphela nganye - ndaqala inqanaba elitsha ebomini bam… ndiphila neempawu ezingapheliyo.

Ukufumana ileyibhile efanelekileyo

Ngelixa iziphumo ziya kuhlala ubomi bam bonke, andizicingi ukuba "ndiyagula" okanye "ndihlala ne-AML," kuba andisenayo kwakhona.

Abanye abasindileyo kuthiwa "baphila nesifo esinganyangekiyo," kwaye abanye bacebise "ukuhlala neempawu ezingapheliyo." Le ilebhile ivakala ngathi ilungile kum, kodwa nokuba leliphi igama, abasindileyo njengam banokuziva ngathi bahlala bejongana nento ethile.

Into endijongene nayo ukusukela oko ndanyangeka

1. Imithambo-luvo yomda

I-chemotherapy yenze umonakalo we-nerve ezinyaweni zam, ikhokelela ekubeni ndindisholo okanye ukurhawuzelela, iintlungu ezibukhali, kuxhomekeke kusuku. Ikwachaphazele nokulingana kwam. Akunakulindeleka ukuba uhambe.

2. Imiba yamazinyo

Ngenxa yomlomo owomileyo ngexesha le-chemotherapy, kunye namaxesha amade xa amajoni omzimba abuthathaka, intsholongwane yangena emazinyweni am. Oku kubangele ukuba batyhafe kwaye babole. Elinye izinyo lalibuhlungu kangangokuba yonke into endandinokuyenza kukulala esofeni ndilile. Emva kokusilela komjelo weengcambu, ndakhupha izinyo. Kwakungomnye we-12 endilahlekile.

3. Umhlaza wolwimi

Ngethamsanqa, ugqirha wamazinyo wayifumanisa xa incinci ngexesha lokukhutshwa kwamazinyo. Ndifumene ugqirha omtsha-intloko kunye nentamo ye-oncologist-osuse i-scoop encinci kwicala lasekhohlo lolwimi lwam. Kwakwindawo ebuthathaka kwaye epholisayo kwaye ibuhlungu kakhulu malunga neeveki ezintathu.

4. I-Graft-versus-host host

I-GVHD yenzeka xa iiseli zomnikeli zihlasela ngempazamo amalungu omzimba. Banokuhlasela ulusu, inkqubo yokwetyisa, isibindi, imiphunga, izicwili ezinxibelelanayo namehlo. Kwimeko yam, ichaphazele amathumbu, isibindi kunye nolusu.

I-GVHD yamathumbu yayiyinto ye-collagenous colitis, ukudumba koloni. Oku kuthetha ngaphezulu kweeveki ezintathu ezibuhlungu zorhudo. kukhokelele kwii-enzyme zesibindi eziphezulu ezinokuthi zonakalise eli lungu libalulekileyo. I-GVHD yolusu yenza izandla zam zadumba kwaye yabangela ukuba ulusu lwam lube lukhuni, kuthintele ukuguquguquka. Zimbalwa iindawo ezibonelela ngonyango oluthambisa kancinci isikhumba sakho:, okanye i-ECP.

Ndiqhuba okanye ndikhwela iikhilomitha ezingama-90 ndisiya kwiziko laseKraft Family Donor Centre eDana-Farber eBoston. Ndilele cwaka iiyure ezintathu ngelixa inaliti enkulu ikhupha igazi engalweni. Umatshini wohlula iiseli ezimhlophe ezingaziphathi kakuhle. Emva koko baphathwa ngearhente yokufota, bavezwa kukukhanya kwe-UV, kwaye babuyela ne-DNA yabo etshintshiweyo ukubazolisa.

Ndihamba qho ngeveki enye, ndehla kabini ngeveki xa oku kwenzeka ngoMeyi 2015. Abongikazi bayanceda ukuhambisa ixesha, kodwa ngamanye amaxesha andikwazi ukuzibamba ndilile xa inaliti ibetha imithambo-luvo.

5. Iziphumo ebezingalindelekanga zePrednisone

Le steroid inyathela i-GVHD ngokunciphisa ukudumba. Kodwa ikwanazo neziphumo ebezingalindelekanga. Idosi ye-40-mg ekufuneka ndiyithathe yonke imihla kwiminyaka esibhozo eyadlulayo yenze ukuba ubuso bam bukhukhumale kwaye buthathaka nezihlunu zam. Imilenze yam yayi irabha kangangokuba ndandishukuma xa ndihamba. Ngenye imini xa ndandihamba nenja yam, ndawa ngomva, ndafumana olunye uhambo oluya kwigumbi likaxakeka.

Ukunyanga ngokwasemzimbeni kunye nokwehla kancinci kwedosi- ngoku eyi-1 mg kuphela ngemini- kuye kwandinceda ndomelela. Kodwa i-prednisone iyenza buthathaka inkqubo yomzimba yokuzikhusela kwaye ingoyena nobangela kumhlaza weseli oxhaphakileyo wolusu endiwufumene. Ndizisusile ebunzini lam, umbhobho wokukrazula, isidlele, isihlahla, impumlo, isandla, ithole, nokunye okuninzi. Ngamanye amaxesha uziva ngathi njengokuba umntu ephilisile, enye into engacacanga okanye ephakanyisiweyo ibonisa enye.

Ndijamelana Njani

1. Ndiyathetha

Ndizichaza ngebhlog yam. Xa ndinexhala malunga nonyango lwam okanye indlela endiziva ngayo, ndithetha nonyango lwam, ugqirha kunye nomongikazi. Ndithatha amanyathelo afanelekileyo, njengokulungisa amayeza, okanye ukusebenzisa ezinye iindlela xa ndiziva ndinxunguphele okanye ndidandathekile.

2. Ndenza umthambo phantse yonke imihla

Ndiyayithanda intenetya. Uluntu lwentenisi luye lwandixhasa ngokumangalisayo kwaye ndaye ndenza izihlobo zobomi. Ikundifundisa uqeqesho lokujonga kwinto enye ngexesha endaweni yokuqhutywa lixhala.

Ukubaleka kundinceda ndizibekele iinjongo kunye nee-endorphins ezikhutshwayo zindinceda ndizigcine ndizolile kwaye ndigxile. I-Yoga, okwangoku, iphucule ibhalansi yam kunye nokuguquguquka.

3. ndibuyisela

Ndivolontiya kwinkqubo yokufunda nokubhala yabantu abadala apho abafundi banokufumana uncedo ngesiNgesi, izibalo, nezinye izihloko ezininzi. Kule minyaka mithathu ndiyenzayo, ndizenzele abahlobo abatsha kwaye ndaziva ndoneliseka kukusebenzisa izakhono zam ukunceda abanye. Ndiyakonwabela nokuvolontiya kwinkqubo ka-One-to-One kaDana-Farber, apho abasindileyo njengam banika inkxaso kwabo bakumanqanaba okuqala onyango.

Nangona uninzi lwabantu lungayazi loo nto, "ukunyangwa" kwesifo esifana neleukemia akuthethi ukuba ubomi bakho babuyela kwinto owawuyiyo ngaphambili. Njengoko ubona, ubomi bam emva kwe-leukemia buzaliswe ziingxaki kunye neziphumo ebezingalindelekanga kumayeza am nakwiindlela zonyango. Kodwa ngaphandle kwento yokuba ezi ziindawo eziqhubekayo zobomi bam, ndiye ndafumana iindlela zokulawula impilo yam, impilo nokuba kwimeko yam engqondweni.

URonni Gordon ulixhoba leukemia ene-myeloid kunye nombhali Ukubaleka uBomi bam, neyabizwa ngokuba yenye ye iibhloko zethu eziphezulu zegazi.