My name is Akop Gulabyan. I am 39.
Since 2007 I have been sick with acute myeloblastic leukemia. I received several
courses of intensive chemotherapy and then was on maintenance therapy. Unfortunately,
at the end of November I had a relapse and now my only chance is bone marrow
transplantation.
I have no matches at the international registry, so it was decided that I would
undergo haploidentical transplantation from my sister.
It is likely that I will need expensive medications after the transplantation,
such as Vfend, which I will not be able to afford. I have not been able to work
for 3 years. My wife is the only income earner in our family of four (I have
two daughters, 9 and 11 years old).
I will be grateful for any help.
Update as of March 7, 2010.
Since Akop's sister is only a partial match, he will need to pay
for the special equipment for cleaning of the donor's transplant.
We are waiting for the doctor's recommendation and the invoice from a
distributor. We expect the cost to be over 500,000 rubles.
Update as of March 16, 2010.
We received an invoice for the cylinders
for cleaning of donor's cell for 519,932 rubles.
Please help Akop with paying the bill.
Update as of March 30, 2010.
Akop was hospitalized at R. Gorbacheva
Pediatric Hematology & Transplantology Institute and he is preparing for the
transplantation. He feels well, but is very worried about the procedure.
The bill for the columns for cleaning of the donor's transplant is not yet
paid off.
Update as of April 3, 2010.
Akop was diagnosed with a relapse. He is urgently starting
pre-transplantation chemotherapy. Stem cell harvesting from his sister
who will be the donor is scheduled for April 9. The hospitalization
and cell harvesting will cost them 67,000 rubles,
because Karina is not a Russian citizen.
Update as of April 30, 2010.
Transplantation took place on schedule. Akop is now recovering,
and he developed skin GVHD. He is planned to undergo
therapy with photopheresis.
Update as of May 19, 2010.
Akop's condition improved somewhat, but leukocyte count is still low and
he is still fatigued. Akop is now treated as outpatient. He goes for tests
to the clinic. Based on the test results, he was diagnosed with aspergillosis
and needs Vfend therapy. Akop is thanking all the supporters and volunteers
of AdVita fund for their help.
Update as of June 17, 2010.
On June 9th Akop was taken to intensive care unit with bleeding
due to ulcer. On June 16th he was transferred to a regular room.
He is gradually getting his appetite back. Akop does not have skin
GVHD now, so he was taken off hormones. Since he cannot take pills,
all the medications are administered intravenously, including Vfend.
As of now, Akop receives intravenous Vfend, Albumin and Quamatel.
Flora, Akop's wife
Update as of July 13, 2010.
Since July 9th, Akop has been in day hospital. He cannot walk by himself yet.
Akop takes Vfend and hormones for skin GVHD, as well as antiviral drugs.
Update as of August 2, 2010.
Akop's condition improved and he can now walk. He is monitored as an outpatient.
Akop takes Cellsept, Quamatel and Valcyte, as well as Prednisolone due
to skin GVHD.
Akop's wife
Update as of September 10, 2010.
Akop is a day patient. He had developed skin GVHD. He takes large doses of hormones.
The doctors plan to refer him for photopheresis. Akop is taking Vfend, Cellsept, Almagel,
Biseptol, Pariet and Advantan ointment.
Akop's wife
Update as of November 3, 2010.
Akop still has skin GVHD symptoms. He is undergoing therapy with
photopheresis. Akop needs to continue Vfend therapy.
Update as of December 9, 2010.
Akop spent two weeks in a hospital with a fever of an unknown origin.
He continues photopheresis and hormonal treatment for skin GVHD.
He still needs Vfend.
Update as of December 24, 2010.
CT scan showed that a fungal leason still remains. A course of
photopheresis has been postponed, Akop continues to take Vfend.
He takes lots of medications for skin GVHD.
Flora, Akop's wife
Update as of January 19, 2011.
Akop's skin GVHD worsened and he will undergo photopheresis
courses on January 20-21. He is still taking a number
of various medications.
Flora, Akop's wife
Update as of February 20, 2011.
According to CT of lungs, fungal lesions have grown, and Akop
was referred for additional blood tests and bronchoscopy. His skin
GVHD is acute, Akop feels pain and his skin is peeling. He need various
ointments and medications, as well as photopheresis. Vfend is still needed,
although after tests its dosage may be changed or an additional medication
may be prescribed.
Akop's wife
Update as of May 4, 2011.
Akop is still getting treatment against complications: Vfend, Valtrex,
inhalations with Pulmozyme and Pulmicort. He is feeling ok.
Akop's wife
Update as of June 21, 2011.
Akop's condition has not changed much: he is monitored at the day hospital,
undergoes photopheresis therapy and receives Vfend,
Pulmicort and Pulmozyme.
Akop's wife
Update as of July 5, 2011.
Unfortunately, Akop is not responding to photopheresis and it was decided
to continue therapy of GVHD with Mabthera. Akop lost a lot of weight and
does not feel well. He constantly takes Vfend, Cyclosporine and Gleevec.
He is in remission in regards to primary diagnosis.
Update as of August 10, 2011.
Akop still has significant skin GVHD, and the doctors were unable
to improve his condition much so far. He still needs Vfend.
Update as of October 30, 2011.
Akop was in the hospital for a long time due to skin GVHD and loss of weight.
He is very fatigued and cannot walk well. Akop still needs Vfend and inhalations.
In the next few days he will have CT of lungs to determine further treatment.
Akop's wife
Update as of January 24, 2012.
Akop feels much better and he is starting to gain weight.
Cellcept was canceled, but Vfend is still needed.
Akop was discharged for outpatient monitoring.
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703840712001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT: RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT: RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Bank of New York Mellon,
New York, USA
SWIFT: IRVT US 3N Correspondent Account No:
8901003069
Correspondent Bank #2:
JP Morgan Chase Bank,
New York, USA
SWIFT: CHAS US 33 Correspondent Account No:
822839205
*,**
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703978312001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Deutsche Bank AG,
SWIFT: DEUT DE FF Correspondent Account No:
9477134
Correspondent Bank #2:
Commerzbank AG,
Frankfurt am Main, Germany
SWIFT: COBA DE FF Correspondent Account No:
400886482900
*,**
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