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| But I shall get out, I SHOULD get out. |
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Hi,
My name is Vadim. I am 24 years old. And I have cystic fibrosis - I have this diagnosis since my childhood.
I did not feel myself seriously sick till winter of the last year though I officially have cystic fibrosis since I am 7 months.
Most of my friends did not even suspect any problems. Only the closest people knew about my illness. Thus I had a constant supporting therapy - reception of enzymes, antibiotics, and regular hospitalization.
Nevertheless, in 23 years I had a good work, the beloved with whom we were many years together, true friends and a lot of plans for the future. I worked as a programmer in one of the leading companies of St.-Petersburg, I wished to have my own family. At the same time, I was helping my parents to raise my younger sister. My parents work as engineers. My father is working as the chief engineer at a factory, and my mum when she learned about my diagnosis - left her job and was engaged in the new association in St.-Petersburg that helps the patients affected with cystic fibrosis.
Since January 2007 the situation has changed. Lately, I spent 8 months in a hospital, then a brief break in January, and in February I had to go back to the hospital. In a nutshell, from now on, having a break from the hospital becomes more and more difficult.
This leads to the fact that my only chance to live is transplantation. Some time ago there was a naive hope for carrying out this kind of surgery in Russia, but it is still impossible, and it will be impossible for a long time. Now, I have intravenous injections; I do inhalations and other procedures vitally indispensable to me. I am on constant oxygen therapy.
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But I shall get out, I SHOULD get out! While there is this only one illusive chance, I cannot allow myself to miss it. For the sake of the persons I love, for the sake of my 4-year sister, for the sake of my parents and my family. In order to live and to feel rather healthy, I need the lungs a transplantation that is not possible in my country
I hope I will survive and feel alive again. In order to have the same life as I had until recently.
Please, help me to live. Help me survive. |
Some extracts from the letter of Vadim's mom:
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Vadim has begun to feel bad since he was five months. When he was 1 year
old, the doctors diagnosed cystic fibrosis. I cannot say anymore how many
times he went to the hospital during his 24 years. There was few days
without nursery and kindergarten, so he went to school from the sixth class.
And before that, he only took house courses.
When the "Association that helps patients with cystic fibrosis
(mucoviscidose)" has been registered in St.-Petersburg in 1992, I started to
help this association; I was involved in the public work in order to aid our
children. Vadim was coming with me on all seminars as a volunteer; he was
helping us by working with children with infringement of intelligence. After
he finished school he decided to obtain a specialty "special psychology "
but his love to computers overcame, and during the past three years he has
worked for a computer firm, where he was designing web-sites.
I was always amazed by the strength of mind of our children, including my
son. He has so many procedures every day; he takes antibiotics permanently,
but, nevertheless, he has an active life, the girl he loves and a lot of
friends.
Unfortunately, from 2007 his difficult, but rather normal life became
impossible. From the beginning of this year his health condition went worse;
In addition, we had to take into account the diabetes
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According to the doctors from St. Petersbourg, the transplantation of both
lungs has to be performed for Vadim. It is his unique chance to survive..
Our fund started the negotiations with German and the French clinics for
carrying out this transplantation. The estimated cost of the transplantation
is 150 000 euros
We open fund raising on transplantation of lungs for Vadim and we ask you
not to indifferently close this page, not to pass by Vadim's situation and
to help him.
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Note: mucoviscidosis – (cystic fibrosis) is a systematic hereditary disease caused by mutation of transmembrane mucoviscidosis regulator gene. It leads to eexocrine glands affection, heavy respiratory apparatus and gastrointestinal tract disfunctions.
Mucoviscidosis is the most frequent cause of both lungs transplantation (36% of cases).
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Some phrases from our correspondence with Vadim:
"... I don't feel comfortable to do nothing and to suffer from idleness
since September. But I don't have any choice; I have to do nothing as I am
on constant oxygen support. We have the stationary concentrator at home; in
addition there is one more portable. I go from hospital to home for a WE
with this portable concentrator, and then back. Every trip is as a fight :)
But it worth it....."
"..My mood is the mood of a fighter. I didn't make anything yet what it will
be spoken with gratitude after my death. So, it is too early :)" |
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| Documents |
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Contacts |
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195220
Saint-Petersburg
Apt. 29,
68 Grazhdanskiy prospect,
Baranov Vadim Mihailovich
Tel: +7 951 6651486 (Vadim)
Tel: +7 921 3193432 (Elena Vladimirovna) |
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Postal address:
195220
Saint-Petersburg,
Apt. 29,
68 Grazhdanskiy prospect,
Baranova Elena Vladimirovna (Vadim’s mother)
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Реквизиты Сбербанка:
Северо-Западный банк Сбербанка РФ
Санкт-Петербург
Калининское ОСБ №2004
БИК: 044030653
ИНН: 7707083893
К/счет: 30101810500000000653
Р/счет: 30301810255000605508
КПП: 780432006
ОКОНХ: 96 ОКПО 09171401
Получатель:
Баранова Елена Владимировна
Л/счет: 42307 810 4 5508 2107612 48
ИНН: 781418017001
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You can transfer your money to our bank accounts or use the payment systems WebMoney and Paypal with note:"For Vadim Baranov treatment"
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Could you please let us know about money transferring calling to +79052225182
or writing an email: otzovitesnam@mail.ru
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If you have transferred money and didn’t see the transaction confirmation in a report on a patient webpage, please, write us to otzovitesnam@mail.ru and mark your name or organisation name, payment receipt (reference number), time and location and the method you used for that (the patient’s personal account or to Natasha Fund). You can help us to control the money flow. We need to ensure that your kind donations will be used properly, for patient’s needs.
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15.07.08 Yevgeny Komarov :
I don't write very often on the website. Only when all my thoughts reach their summit and splash out, and there is no way that I can contain them. Very often I felt it with Natasha. Because she meant everything to me, and whatever happened to her passed through my heart, soul and brain, tearing them apart. I don't keep a journal, so afraid I am of the thoughts, blowing my mind up. I don't have a livejournal, because I keep all my innermost feelings in the world that I built for myself only.
But today I just can't contain my emotions. I was visiting Vadim Baranov in the hospital. A quiet ward, the balcony door is open, allowing pigeons to peer in and even attempt to enter. Two beds, the oxygen is rustling, running through the pipes to the lungs, hidden in the man's chest, crying, imploring to help them. I'm not going to start telling, how miserable Vadim is. I just can't tell it – Vadim doesn't let anyone see it. He has an admirable strength of mind, of body, of soul. He doesn’t complain. Vadim is a real man. Attentive, participating, very thoughtful. It's as if we talk about someone else, as if HE is trying to help someone.
During our conversation Vadim talks about his girlfriend. It happens when someone you love is always in your heart and your mind. We talk, he is laughing. Vadim walks with me to the door. He jokes that he can only walk where the oxygen equipment, to which he is tied by thin plastic трубочка permits.
Both Lilia and I were in phone and e-mail correspondence with Vadim for a long time. And none of us heard a word of complaint from him. It is obvious how hard all this must be for him, but he keeps everything inside, and that's how it always is with real men.
Sometimes, falling asleep, I imagine that I'm one of those people who we are trying to help. I try to feel, what would it be like to feel what Natasha felt. "Palpitation, straining the neck so hard, that all the veins become visible, gulping down the precious air. And all the time – trying to see through the future. To look into that dark abyss in a vain attempt to understand how many hours, days, week I have left. Will I survive the operation? Will I live? What will be next?
It's all in vain. No matter how hard I try – I cannot see, I don't understand.
I just want to live! I want it! I want it so much!"
I think of Tanya Borisova. "Fear, expectations, waiting for any news about the operation. Mum's kiss and tears. Looking at everything and everyone around me. Anesthesia."
I try to picture Vadim.
"Nothing has been decided yet. When I will have an account, when will there be a place in the hospital, will there be money or not? My own body…".
Mother is always around. She is always worried about her child. No matter how old the child is - five, twenty four, thirty three. Even forty five. Mum is always nearby, like a bird circling around the nest, worried about her fledging. She is there to protect and to care about her child. And to cry for him.
I want to beg Vadim, Tanya and many, many others to forgive me for all these words.
Let's just all try to picture what it is like to face a terrible disease. Just imagine, and you will be scared. Some of us will be healthy all their lives, thank God. Some may not be so lucky. Right now out lives do not go the same way as the lives of those people. We are trying to hide behind the day-to-day things, behind the TV and entertainments. We are trying not to think about someone, who is at the death's door.
"Who is this stranger to me?" we think. "What can I do? How can my 100 rubles help, when this person needs millions?!"
But it's not true! It's not!
And I ask everyone to come together – it's so much easier to help when we are a team! What if you are the one who will change it all, who will not let the most horrible thing happen?
02.07.08 Unfortunately we haven’t received any reply from Vienna University. We are working out several alternatives:
1. Vienna University. All medical extracts has been sent. We are waiting for a reply.
2. Clinics in Hannover (Germany) All extracts has been sent. We received a reply that the main doctor personnel are on summer holidays.
3. France – 2 extracts sent to 2 clinics.
4. Vadim’s doctor prepared documents for sending to Essen clinic (Germany) (after agreement with professor P.K.Yablonsky)
5. We are looking for other clinics abroad.
We know that many people abroad read our site (USA, France, Norway, Germany etc.). In all those countries there are clinics which make lung transplantation. You could help us to negotiate with these medical centres. If you have any possibility please get in contact with us. (007-905-222-051-82) or write to otzovitesnam@mail.ru We’ll work out all details and agree on a action plan.
Vadim really needs help. Time doesn't work for him now. The main problem for now is finding a clinic and getting an invoice for treatment. Without getting this invoice we can't ask Media to help us or officials
Vadim is still in the hospital, when we are asking how does he feels he say all right. He makes jokes and trying to stay strong. But of course he is worried about silence from clinics abroad.
17.06.08 Thank to Rohin Oleg from Kirov for the help to our patients. Oleg transferred 3000 Rub. for Vadim. We sincerely grateful to Oleg for his sympathetic attitude to those in need
20.06.08
Today we received $300 and 2000 Rub. from Yulya (Norway) and Alexandra (Saint-Petersburg) for all patients. We decided to split the sum between Vadim and Natasha Pylkova. Thank you Yulya and Sasha for you help and support
15.06.08 Nalasha Anikanova’s relatives managed to find money for her treatment therefore money received from Sergey Lukyanov at the beginning of June were readdressed to Vadim and Natalya Pylkova upon Fund Natasha’s decision. We don’t receive almost any money for Vadim.
Vadim is still in the hospital and will be there for some time, the lung attack was removed.
Thank to Dmitriy Ryazanov who sent 1000 rub. For Vadim treatment
11.06.08 Today Vadim had a lung attack, he couldn’t breath. Now Vadim is in hospital.
Dear friends, St. Petersburg people, please support Vadim, let’s help him all together. Even a little help given by dozens, hundreds people could be a chance to have a future for him.
Now we are waiting for a final decision from 3 clinics, where documents sent. The other request if you could help us with a page translation, please write us.
30.05.08 Today Vadim has a birthday! We congratulate him heartily on this day. We wish all the intentions make happen and the main dream to come true: always to have people nearby who won’t stay ignorant, who will help and support. Happy Birthday, Vadim! We wish you and your girlfriend to have 3 other things: believe, hope and love!
29.05.08 We thank sincerely the Australian doctor Ophelii Hirth, our constant helpmate in medical document translation. Today we received the extracts which he translated for free. They will be sent to clinics of 3 countries. Thank you, Ophelii, for you help!
28.05.08 Yesterday we got the Vadim’s extract. It is sent to our friend – Australian doctor Ophelii Hirth
22.05.08 Currently the doctors of the State St. Petersburg hospital intensive pulmonology department (the hospital where Vadim is a patient) are preparing a new extract. It will be translated into English for sending to foreign clinics |
Report on collecting donations
| Name of sponsor |
Amount |
Type of Transfer |
Date |
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| Alexandra (SPb) |
1000 rub
(from 2000 rub) |
to Fund |
20.06.2008 |
| Stefan Selch (Germany) |
1000 euro |
current account
Fund |
17.06.2008 |
| Julia (Norway) |
150 $
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current account
Fund |
17.06.2008 |
| Oleg Rochin (Kirov) |
3 000 rub |
current account
Fund |
17.06.2008 |
| Dmitry Ryazanov (SPb) |
1000 rub |
to Fund |
14.06.2008 |
| Sergei Lukyanov (SPb) |
10 000 rub |
to Fund |
02.06.2008 |
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