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Председатель якутской «Нефро-лиги» Михаил Сапожников: «Мы боремся за жизнь»

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Материал был сделан в преддверии второго благотворительного фестиваля «Надежда на будущее». Мы благодарим МООНП «Нефро-Лига» за постоянное сотрудничество и поддержку проекта. Также большая благодарность нашим pro bono — профессиональным журналистам, которые помогают качественно освещать тему про донорство органов.

В октябре 2016 г. в Якутске прошел второй благотворительный фестиваль «Надежда на будущее». Фестиваль проводится для пациентов с заболеваниями почек и печени и для широкой общественности. Мероприятий фестиваля много: в основном они касаются органного донорства, трансплантации. Среди прочего, будут и мероприятия по профилактике почечных заболеваний среди взрослых и детей.

Руководитель местного отделения авторитетной всероссийской общественной организации «Нефро-лига» Михаил Сапожников один из тех, кто поддерживает проведение фестиваля. Ведь он не понаслышке знает, что такое находиться на диализе, и каждому желает обрести надежду на качественную жизнь, без привязки к аппарату искусственной почки. То есть надежду на будущее.

Сам Михаил Анатольевич на диализе уже 21 год. За это время многие, кто лечился рядом с ним, погибли. Не все знают, что у диализа много побочных эффектов, от которых можно умереть. Иной выход продлить жизнь больным почечной недостаточностью – это трансплантация нового органа. До недавнего времени в республике существовала только пересадка родственного органа. Теперь стали проводить и пересадки кадаверной почки.

Как многим обязаны

Новички, то есть те, у кого терминальная стадия болезни почек наступила недавно, даже не догадываются, как многим они обязаны Михаилу Сапожникову. Совсем недавно было время, когда аппаратов искусственной почки не хватало, когда люди гибли на улицах после диализа, потому что не в силах были дойти домой без транспорта, когда иногородние больные мучились без жилья в Якутске, когда не измерялся уровень паратгормона, того, гормона, который провоцирует отложение кальция на сосудах, что чревато инсультами и инфарктами, ломкостью костей, и не выписывался жизненно необходимый препарат мимпара.

Сейчас эти проблемы некоторые полностью, некоторые частично решены. И все благодаря Михаилу. Он не сидел, сложа руки. А вместе со своими помощниками обивал пороги высоких кабинетов, привлекал на свою сторону сочувствие СМИ, в свое время дажевыходил с плакатами на площадь Ленина.

И сейчас Михаил Анатольевич настроен боевито. Выясняет, почему затруднено получение мимпары и железосодержащего венофера в поликлиниках, тревожится от того, что до сих пор не объявлен конкурс на оказание услуги транспортировки больных до диализных залов и обратно.  За сайтом якутского минздрава следит пристально, хотя зрения у него почти нет.

Сейчас носит планы обязательно встретиться с новым министром здравоохранения Михаилом Охлопковым, чтобы обсудить все проблемы диализных больных.

О себе

О себе Михаил говорит, что жив благодаря своей семье: матери – врачу по профессии, супруге и сыну, которые всегда о нем заботятся.

До диализа он учился на факультете физики ЯГУ, три года работал на кафедре теплофизики. С конца 1992 года по 2000 год работал в «Связь-банке» ведущим программистом. В августе 1995 года у него отказали почки. Сразу, без, как говориться, «предупреждения». У Михаила диабет. Это заболевание очень часто дает осложнения. Плюс переохлаждение, которое в наших условиях трудно избежать.

— Для меня не было таким уж большим шоком. Некогда было шокироваться, — вспоминает Михаил. – Тогда я много работал, у меня был маленький сын. Поначалу на диализ ходил раз в неделю, уже через год три раза. В 2000 году при Якутском городском обществе инвалидов у нас, диализников, появилось свое маленькое отделение. Возглавляла нашу боевую ячейку Галина Сотникова. Я при ней был заместителем председателя. Потом ей пересадили донорскую почку, она занялась бизнесом. И с 2003 года я возглавил организацию. Постепенно мы «прикрепились» к организации «НЕФРО-ЛИГА».

Добрые женщины власти

Михаил Анатольевич рассказывает о своей общественной работе, как о военных действиях в коридорах власти:

— Мы в 2000 году на удивление быстро нашли общий язык с тогдашним руководителем управления социальных проблем Якутска Альбиной Поисеевой. Мы ей рассказали, что после процедуры многие слабеют, и нередки стали несчастные случаи. Аня П. попала под автобус, а Василий А., поскольку диализ заканчивался поздно, возвращался домой под ночь, его забили насмерть на автобусной остановке. Нам помогли наладить доставку больных до диализного зала и обратно.

Когда Альбина Иннокентьевна ушла через два года, вопрос завис. И тогда мы стали пробиваться на отчеты правительства перед населением. Мы задали вопрос Евгении Михайловой, тогда она была заместителем председателя правительства республики. Она позвала нас на личный прием. После него нам стали выделять 2000 рублей на транспортные расходы.

Это была серьезная по тогдашним временам поддержка. На остаток мы все покупали лекарства. Ведь в то время были трудности с лекарственным обеспечением. Когда вышел 122 федеральный закон «О монетизации льгот» стало легче. Он определил, какие лекарства должны причислятся к жизненно-необходимым. И мы стали получать лекарства по бесплатным рецептам.

Постепенно 2000 рублей перестали спасать положение. Это было уже в 2009 году. Не найдя с властью общий язык, мы в отчаянии вышли на пикет. Было уже холодно, конец сентября, но выходили почти каждый день целую неделю. Кроме транспорта мы еще решали проблему определения уровня паратгормона. Такого анализа в республике не делали.

Диализ постепенно вымывает кальций из организма, увеличивается уровень фосфора в крови. Последнее провоцирует рост паратгормона. Нормальный показатель до 300.

Кальций вместо того, чтобы усваиваться в костях, откладывается на сосудах. Опасность гибели от инфаркта или инсульта при высоком паратгормоне увеличивается в 50 раз. В 50!

Плохо отражается паратгормон и на костях. Как раз к 2010 году я сам стал «сыпаться», уменьшился в размерах…

И этот важный показатель паратгормона в республике не определяли! Кроме пикета, мы обратились с письмом в прокуратуру. Слава Богу, последняя не оставила нашу жалобу без внимания…

И вот только в 2010 году впервые нам сделали анализ. Результаты оказались шокирующими. У многих уровень оказался в районе 2000, а то и 3000 тысяч.

Срочно встал вопрос об обеспечении мимпарой. Не дождалась препарата и умерла моя помощница…

И сейчас этот вопрос актуален. Многие жалуются мне, что в поликлинике трудности с обеспечением.

Хорошо было бы, чтобы все препараты выдавали по месту получения диализа. Тем более, что понятие амбулаторного диализа на самом деле в законе нет. Процедура чисто юридически относится к дневному стационару. А все стационарного типа учреждения должны обеспечиваться лекарствами.

В общем, есть чего добиваться и за что воевать.

В Якутске на диализе находятся много пациентов из улусов, поскольку на местах им помощь оказана быть не может.Они вынуждены уходить с работы, бросать семьи. Трагедия, в общем. Дьулустан П. у нас умер от туберкулеза. Снимал за дешево непригодное жилье.

Очень сильно помогла нам председатель правительства Галина Данчикова. Иногородние получают помощь в размере 5 прожиточных минимумов раз в полгода. Это им позволяет частично возместить затраты на аренду жилья.

О фестивале

Михаил Анатольевич говорит:

— Многие удивляются, как человек с моим здоровьем еще умудряется делать столько работы. Но я отвечаю, это не общественная работа, это борьба за жизнь.

Фестиваль «Надежда на будущее» делают общественники. Они тоже борятся за жизнь. Врачей мало, нас много. И если мы не будем привлекать внимание общественности, никто это за нас не сделает…

Школы пациентов

22 октября в Республиканской Больнице №1 — НЦМ состоятся Школы пациентов для людей, ожидающих трансплантацию органов. Приглашаются также близкие родственники. Школы будет вести почетный гость фестиваля — Сергей Мещерин — — заведующий отделением координации органного донорства ФГБУ «Федерального научного центра трансплантологии и искусственных органов им. ак. В. И. Шумакова» Минздрава России.

Начало в 10.00.

Место проведения: г. Якутск, Сергеляхское шоссе, д. 4. Республиканская Больница — Национальный Центр Медицины, КДЦ, третий этаж.

Подробная информация на сайте проекта «Надежда на будущее»: proekt-hope.ru

Больше материалов наших pro bono про трансплантацию органов  в разделе сайта «Статьи»

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