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Akop died on July 20, 2012

 


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.

Akop Gulabyan


 

Medical conclusion
Epicrisis: page 1, page 2, page 3, page 4

 

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.

Update as of February 22, 2012. Unfortunately, Akop developed acute GVHD with involvement of lungs and skin again. He will have a consultation with Prof. Afanasiev regarding further treatment. Vfend is still needed.

Update as of April 5, 2012. Akop has a very serious infection, and he is in intensive care with high fever.

Update as of April 19, 2012. Akop is feeling better and has been transferred back to the ward from intensive care. There are signs of a neurological speech disorder.

Update as of June 9, 2012. Akop was transferred to intensive care unit in a serious condition due to a viral encephalitis. He is in a coma and lost a lot of weight.

Update as of July 6, 2012. Akop is still in intensive care unit in a critical condition.

Records of money received
 Name  Sum  Transferred from  Date
Liza 700 rub qiwi 25.02.2010
  - - 500 rub qiwi 28.03.2010
  - - 1000 rub webmoney 31.03.2010
  - - 1000 rub unikassa 31.03.2010
Alexander Kurdin 3000 rub wire transfer 08.04.2010
Anton Semenenko 500 rub wire transfer 09.04.2010
Liza 480 rub qiwi 13.12.2010
  - - 1000 rub unikassa 18.07.2011

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