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„Podziwiam moją mamę, że mimo bólu i wielu trudności nadal walczy” – historia pacjentki z owrzodzeniem malformacji żylno-tętniczej głowy opowiedziana przez jej córkę

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„Mama była aktywną i samodzielną osobą. Przez chorobę z dnia na dzień stała się zależna od pomocy. Wydaje mi się, że mama źle czuła się z tym, że wszyscy domownicy musieli dostosować się do jej choroby. Robiliśmy to jednak, by jej pomóc. Jako rodzina musimy się wspierać w takich sytuacjach” – o opiece nad pacjentką, która zmaga się z owrzodzeniem malformacji żylno-tętniczej głowy, opowiada jej córka.

Agnieszka Baran, Forum Leczenia Ran: Kiedy rozpoczęła się choroba Pani mamy i jak się rozwijała?

– Moja mama urodziła się z naczyniakiem w obrębie głowy i szyi. W dzieciństwie i młodości zmiana nie była dla niej dokuczliwa. Zmieniło się to dopiero po okresie ciąży, kiedy naczyniak zaczął gwałtownie rosnąć. Po ciążach zdarzały się sporadyczne krwotoki, jednakże nasz problem na poważnie zaczął się pod koniec 2018 roku, kiedy naczyniak zaczął intensywnie wrzodzieć, co powodowało duży ból i częste krwawienia. Lekarze nie wiedzieli, co jest przyczyną tych objawów. Na własny rachunek zrobiliśmy wymaz ze zmian chorobowych. Okazało się, że wdało się zakażenie gronkowcem złocistym.

Jak Pani mama radzi sobie w tej sytuacji?

– Mama była wcześniej aktywną, samodzielną osobą. Przez chorobę z dnia na dzień musiała podporządkować się nowej sytuacji – ograniczyć wyjścia z domu, czasami nawet nie mogła wstawać z łóżka. Było to dla niej bardzo trudne. Wydaje mi się, że mama źle czuła się z tym, że wszyscy domownicy musieli dostosować się do jej choroby. Robiliśmy to jednak, by jej pomóc. Jako rodzina musimy się wspierać w takich sytuacjach.

Nadal walczymy o zagojenie ran, które pojawiają się u mamy. Ja wierzę jednak, że mama wróci do dawnego życia. Jest bardzo silna, podziwiam, że pomimo trudności i bólu cały czas walczy. Dzisiaj mama ma coraz więcej energii i może podejmować się niektórych czynności w domu. Widzę ogromną zmianę w jej samopoczuciu. Ma więcej siły. Wcześniej bardzo dużo leżała w łóżku, oglądała tylko telewizję i czytała książki. Dzisiaj znajduje sobie inne zajęcia i zainteresowania. Myślę, że rzadziej zastanawia się tyle nad tym, co się stało i z czym musi się jeszcze zmierzyć. Jest dobrej myśli.

W jaki sposób rodzina pomaga w opiece nad Pani mamą?

– Codziennie zmianami opatrunków i oczyszczaniem rany zajmuję się ja, rzadziej mój mąż. Wspólnie z całą rodziną mamy jednak ustalony plan, zgodnie z którym każdy opiekuje się mamą – gdy czasami wyjeżdżam z mężem, wkracza mój brat i tata, babcia pomaga w domu. Tak naprawdę wszyscy pomagają, jak mogą i na ile pozwala im psychika, ponieważ zmiany opatrunków są dla mamy bardzo bolesne, ale też stresujące – zarówno dla niej, jak i dla nas. To my, zmieniając opatrunek, sprawiamy dodatkowy ból mamie, ale chcemy jej przecież pomóc. Obecnie ten ból jest nieco mniejszy, ale na początku był przerażający i naprawdę było nam wówczas ciężko.

Jak Pani radzi sobie psychicznie z opieką nad mamą?

– Wydaje mi się, że udaje mi się znajdować w sobie dużo siły. Przede wszystkim staram się być wsparciem dla mamy, chociaż wiem, że nie zawsze potrafię. Dzisiaj dużą część mojego życia pochłania opieka nad ranami mamy. Wymaga to poświęceń i nie jest łatwe, ale robię, co mogę. Planuję swój dzień tak, aby móc zmienić opatrunek w odpowiednim momencie i być przy mamie, kiedy tego potrzebuje.

Jak przebiega leczenie choroby Pani mamy? Czy są Państwo zadowoleni z opieki, jaką mama otrzymała?

– Lekarze nie wiedzieli, co zrobić z problemem mojej mamy oprócz przepisywania kolejnych antybiotyków. Łącznie mama przeszła 18 miesięcy antybiotykoterapii. Poza tym nie mieliśmy żadnej pomocy, a stan rany stale się pogarszał. Mama bardzo cierpiała. Czułam żal, złość, bezradność, strach. Wiedziałam jednak, że nie możemy się poddać, bo mama potrzebowała pomocy. Staraliśmy się szukać rozwiązania na własną rękę.

Na początku nawet nie wiedzieliśmy, że ranę, którą mama ma na głowie, trzeba regularnie oczyszczać i odpowiednio się nią zająć. Przypadkiem trafiliśmy na pielęgniarkę – panią Elżbietę Szkiler. Najpierw wpadła nam w ręce jej książka, którą z trudem udało mi się kupić w antykwariacie. Potem trafiliśmy na jej prezentację, w której pokazywała, jakie dobre miała efekty w leczeniu ran. Uznaliśmy, ze to nasza ostatnia szansa. Postanowiłam się skontaktować z panią Elą. Odpowiedź na mojego maila była bardzo długa i kompleksowa. Pani Ela odpowiedziała na wszystkie moje pytania.

Znalezienie kompetentnej osoby, która potrafiła nam pomóc, to była ogromna ulga. Pielęgniarka była dla nas ogromnym wsparciem. Pani Ela wykazywała się dużą cierpliwością, odpowiadała na każdy telefon, czasami kilka razy w tygodniu. Postanowiłam, że będę słuchać rad pani Eli w 100 procentach, chociaż czasami miałam ogromne wątpliwości – bałam się krwotoków, które wcześniej tak bardzo komplikowały leczenie. Musiałam też nauczyć się cierpliwości. Początkowo myślałam, że leczenie potrwa maksymalnie kilka tygodni. Teraz mamy już na liczniku ponad rok. Ale idziemy do przodu i to dzięki wiedzy i wsparciu pani Eli, która nas uratowała.

W jaki sposób wyglądały konsultacje online z pielęgniarką?

– Mieszkamy w województwie mazowieckim, natomiast pani Ela prowadzi swoją praktykę w Elblągu. Nie mogliśmy zgłaszać się na wizyty bezpośrednie, ponieważ tak długa podróż byłaby bardzo ryzykowna i obciążająca dla mamy. Jedynym wyjściem były konsultacje online.

Z jednej strony ta forma kontaktu wiązała się z utrudnieniami, bo pani Ela nie mogła bezpośrednio obejrzeć rany i ocenić jej stanu. Diagnozy stawiała na podstawie wykonywanych przez nas zdjęć. Pani Ela zawsze instruowała mnie, jak mam wykonać fotografie, by mogła na ich podstawie ocenić, co dzieje się z raną. Musiałam się też nauczyć samodzielnego wykonywania wszystkich czynności przy ranie – oczyszczania, zmiany opatrunków. To nie było łatwe. Obawiałam się, że mogę popełnić błąd i zrobić mamie krzywdę, zamiast pomóc. Z drugiej strony zdalne konsultacje były dużym ułatwieniem, bo mogliśmy skontaktować się ze specjalistką właściwie w każdym momencie i uzyskać poradę.

Mam nadzieję, że gdy rana się wygoi, to pojedziemy do Elbląga podziękować pani Eli osobiście. Wycieczkę zaczęłyśmy planować już po 2 miesiącach leczenia, gdy efekty terapii były bardzo widoczne. Ciężko jest mi mówić bez wzruszenia o tym, jak bardzo pani Ela nam pomogła, zupełnie bezinteresownie, po prostu z powołania. Byliśmy naprawdę postawieni pod ścianą, nie mieliśmy już żadnych możliwości. Dzisiaj jesteśmy dobrej myśli. Stosujemy się do wszystkich zaleceń pani Eli. Wierzymy i mamy nadzieję, że rana wygoi się całkowicie i mama będzie mogła wrócić do normalnego życia. Czasami bywa bardzo ciężko, staramy się jednak nie porzucać nadziei.

 

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