Dear friends! I would like to tell you a story of what happened to me and
ask for help.
I was 20 years old when it all started. Like all young girls, I was studying,
going out, falling in love, and generally being active. In 2004, my college
friend and I went to south of Russia to work as summer camp counselors. When I
returned home to the city, I decided to continue working and studying at the
same time. As you can understand, it is not very comfortable asking your parents
for money, especially since my mother and I lived alone. My parents have been
divorced for six years already. So I began studying during the day and working
in the evenings. I was always lacking sleep, but it did not bother me. I was
working at the cafe around the clock, and then I started losing weight and
my temperature stayed at 37.3C. One day, I felt very unwell when I was out. I
don't remember how I got home and got in bed. I was short of breath and had
no energy. My mother took me to the doctor and I had a blood test. My blood
counts were below norm, and hemoglobin was only 33.
I will not go in much detail how my mom took me to different doctors so that I
could be fully tested. Without someone's help, I could not even go up the second
floor due to shortness of breath and fatigue. Finally, after an ocean of tears
and pain I was admitted to Therapy unit. There I had puncture and was diagnosed
with leukemia. Since there was no hematology unit at the hospital, I was referred
to Ulianovsk in October 2005.
There I started treatment. When I was taken to the unit, I was shocked. It was
a one-story wooden barrack where previously was stables. Despite the dismal
conditions, al the medical personnel was good. Difficult days started: chemotherapy,
variety of medications, hair loss, weight gain and terrible condition afterwards.
My mom was taking care of me. She always was, is and will be with me. My boyfriend
with whom we went through a lot betrayed me. For two years, I suffered while
receiving chemotherapy courses in miserable conditions: 10 people in a room
without a sink and lots of infection everywhere. Despite all the real hardships,
we persevered.
I would like to thank the unit head, Nadezhda Pogodina, my treating doctor,
Natalia Esefieva, and the rest of the personnel. They really helped me to get
through the difficult times. And, of course, I am very grateful to my mother
and all my relatives. After two years of treatment, I was taken off the doctors'
watch and assigned disability group III instead of group II.
I felt so well that I even started working at a clothing boutique. However,
in March 2008 I had a relapse: my disease recurred. I was admitted to hematology
unit again and re-started chemotherapy and treatment. After some time I learned
from a good friend (we were on treatment in Ulianovsk together) that bone
marrow transplantation can be performed in Kirov. We started finding out
about it and how I could be admitted. Finally, we gathered all the paperwork,
the unit head gave her permission, my doctor called the clinic in Kirov, we
received quota and my mom and I went to get my health back. The doctors examined
me again and started treatment (chemotherapy again), but with higher doses and
better conditions.
I got a very good doctor, Irina Dokshina. She does everything to lessen our
suffering. The doses are much higher here but I tolerate them better. I already
underwent six chemotherapy rounds in Kirov, and I need two more. Afterwards,
transplantation is planned. The problem is that intensive care unit is not yet
completed and transplantations have been put on hold. I don't have a donor too,
as my sister did not match as a donor. We agreed even for transplantation of my
own stem cells but in these circumstances we do not know when it will be possible.
Meanwhile, time goes on.
My doctor told me that transplantations are also done in St. Petersburg and
they can help find a donor. However, the donor search costs 15,000 Euros.
Additional 2,500 Euros are required for the delivery of the donor's
transplant from European collection center to St. Petersburg.
I really want to live! Please help me! I would like to have a family and my
own children. But for now, I cannot have that. I cannot make any plans, since I
do not know what tomorrow will bring.
I am only 24, but sometimes I feel like I lived my life already. I know that
there are kind-hearted people in this world who will understand and help me.
Update as of August 8, 2009.
There is no decision yet regarding Ilmira's treatment, as she is
undergoing therapy at her place of residence and was not yet able
to ogranize delivery of her blood samples for typing in St. Petersburg.
Update as of October 21, 2009.
Based on the results of Ilmira and her sister typing, they only match
partially. The preliminary search for an unrelated donor at the
international registry produced only a few donors, and the chances
of one of them being a match are very small.
Further treatment is under discussion.
