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Ilir Kullolli
On this page: About Ilir Kullolli
Aplastic Anemia
Blood elements
Treatment
History of Ilir’s disease
Blood test results
Links
On this site: Pictures of Ilir
Discussion List
Recent Pictures. New!!!
This page was last updated on: November 18, 2005

Ilir Kullolli is a Clinical Engineer from Albania. He was an international student attending Cerro Coso Community College in Ridgecrest, California when he was diagnosed with Aplastic Anemia. He was hospitalized on November 17, 1999. After getting better he transferred to Wentworth Institute of Technology in Boston, Massachusetts and graduated with a Bachelor of Science in Computer Engineering in December 2003. He also finished his graduate studies in Biomedical Engineering at University of Connecticut (and partially at Worcester Polytechnic Institute). Healthwise, he is doing very well and he seems to be sick-free.

Aplastic Anemia: An injury to the bone marrow; specifically the stem cells. Stem cells make red and white cells and platelets. The injury may be genetic, caused by viruses, drugs or other toxins.

One known cause is an antibiotic used in Europe called Chloramphenocol. People who get this have a 1 in 30,000 chance of contracting blood disorders such as Aplastic Anemia. Ilir received this drug three years ago in Albania when he had appendicitis. The doctor is skeptical of this as a cause because of the time between it and the onset of the disease.

In Ilir’s case, the injury is unknown. The effect of this disease is a reduction in the production of all three of the cell types. The disease was noticed by bruises that did not heal, bleeding gums, and finally blood in the urine. All of these were caused by Ilir’s extremely lowered platelet count of 0.2 when first measured.

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Blood elements:
Hemoglobin: Carries oxygen from the lungs to the body and Carbon Dioxide back to the lungs.
Hematocrit: Percent of total blood volume due to the red blood cells.
Platelets: Form blood clots to stop bleeding.
Red Blood Cells: Carry hemoglobin that transports oxygen to the body tissues.
White Blood Cells: Fight infection.
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Treatment:
Find a way to stimulate the stem cells to increase production or replace the bone marrow and hope the new marrow will work properly.
1. Method of choice is to give two drugs in succession.
First, Anti-Thymocyte Globulin (ATG) to reduce the T-lymphocytes in the blood. The T-lymphocytes are what may be attacking the stem cells in the bone marrow, which in turn reduces the red blood cells, white blood cells and platelets.

Next, administer Cyclosporine to further inhibit the activity of the T-lymphocytes.

While the drugs slowly take effect, battle side effects and add needed blood products. Whole blood and platelets are added intravenously. Magnesium is added to stabilize the cyclosporine. Antibiotics are given to fight diseases. Patient is kept in isolation to reduce chance of disease.

2. Last hope is a bone marrow transplant. Patient’s bone marrow is destroyed with drugs and a donor is found to give replacement marrow.
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History of Ilir’s disease:
Before hospitalization: Ilir began having nosebleeds that were attributed to the dry desert air. He had bleeding gums when brushing his teeth. He noticed a decline in energy. He had bruises that would not go away. A minor injury to his right knee became very swollen, stiff and painful.
1999
November 17 Noticed blood in urine: taken to Ridgecrest Regional Hospital and admitted.
November 18 Transferred to UCLA Olive View Medical Center in Sylmar California.
November 19 Placed in isolation.
Platelets given.
November 24 Fund for expenses begun in Ridgecrest.
November 28 ATG treatment begins.
December 2 ATG treatment ends.
Cyclosporine treatment begins.
December 6 Parents and sister arrive from Albania.
December 12 Cyclosporine treatment ends.
Waiting begins for blood counts to increase.


2000

January 3 Visitors no longer required to wear masks
January 8 Ilir allowed out of the hospital for two days at a time.
January 10 Magnesium given by IV. GCSF shot given in arm to boost white blood cell count.
January 12 Magnesium and platelets given by IV. EPO shot in arm to boost red blood cell count.
January 14 Magnesium given by IV. GCSF shot given in arm to boost white blood cell count.
January 18 GCSF shot given in arm to boost white blood cell count.
January 20 Blood tests with no medications.
January 23 GCSF shot given in arm to boost white blood cell count.
January 24 Doctor reviewed progress: Ilir is responding well. Blood counts are steady now. Next two months will determine whether the medications have worked. Success will be a gradual increase in the counts towards the normal levels. Counts not expected to reach the norm . . . just get closer. Medications are promoting acne on his back. Clearasil prescribed to avoid infection. EPO shot given in arm to boost red blood cell count.
January 28 Blood tests with no medication.
January 31 Blood tests. GCSF shot to boost white blood cells. EPO shot to boost red blood cells.
February 7 Blood tests. All blood count numbers are up significantly . . . a first. Progress found to be above average. Patients who react this quickly to the medication have a better chance for non-recurrance of the disease. Doctor removed tube which was through the forearm skin, in a vein, to the heart. It was needed for IV medications. Ilir can now play golf (he is allowed to play golf).
February 14 Blood tests.
February 22 Blood tests. Doctor stopped Prednisone pill and decreased Magnesium and Cyclosporine pill dosages. Friday will be the last day for Magnesium.
February 28 Blood tests. Doctor stopped Magnesium pills. She says the Platelets will fluctuate along with the other counts.
March 6 Blood tests. Doctor says the decrease in platelets is OK. It always varies. Will have to watch it to see where it settles down. There is enough there in case he ever needs surgery.
March 13 Blood tests. EPO shot
March 20 Blood tests. Red blood cell count is OK so EPO shot will be stopped. Gums are swollen so a dentist appointment is in order. Ilir needs to study hard this week to get his platelet score up on the next test.
March 27 Blood tests. All counts were up including the platelets. Ilir only has to go to the doctor once every two weeks from now on. He and is family moved to Ridgecrest. Please see their new phone number below.
April 10 Blood tests. Platelets and white blood cells up slightly and other counts down. Family is concerned, doctor is not. Dentist says swollen gums is part of the disease. . . get used to it.
April 24 Blood tests. Everything up except white blood cells.
May 8 Blood tests. All counts are up.
May 22 Blood tests. All counts are up. Doctors say that since his numbers have come up so fast, he has a good chance of the disease not recurring.
May 28 All medication stops. He has been taking cyclosporin, Diltiazem and folic acid. Now we will see how his body will do by itself.
June 3 Father returned to Albania. Mother and sister remain in Ridgecrest with Ilir.
June 5 Blood tests. First check after all medications stopped. Everything looks OK. Come back next week to double check.
June 12 Blood tests. All numbers are down. Come back next week.
June 13 Ilir caught up with all classes at Cerro Coso Community College. He received a grade of A (the highest possible) in all classes. He's trying to get find some funds to pay for his future studies, or get any kind of scholarship. He's very determined to continue his studies!
June 19 Blood tests. All numbers are back up again. Come back in two weeks.
July 7 Ilir moved to Detroit, Michigan.
September 26 Ilir is doing very well now. No blood checks since July, but has to go back soon for a check up.
November 14 As far as we can see this guy doesn't like 2 things.
1. To do some blood checks.
2. To stay in one place all the time!
Ilir moved to Massachusetts where he's hoping to find a University where he can continue his education.


2001

July 5 Finally some blood checks... here are the results:
Platelets: 170.000
White blood cells: 4.5
Red blood cells: 44.5
HCT: 47.4
HGB: 14.8
As we can see everything looks very normal and Ilir is leading a very normal life, playing basketball, soccer, swimming, working, and in September he's starting the school at Wentworth Institute of Technology in Boston, MA.


2002

June 20 No blood checks yet.
Everything looks very normal. Ilir is going to Wentworth Insitute of Technology majoring in Computer Engineering. Except studying hard and working 2 jobs at the same time, he's also playing soccer for the school. Scoring at least 3 goals a game!
This last week his best friends from Cerro Coso College came to visit him. As fas as I know, they had a great time and they all wonder where does Ilir find all this energy to do so many things at the same time!?
September 06 So far no blood checks for this year! He feels great and he just got back from a little trip in Europe where he visited his old international friends from Cerro Coso. Click here to check some pictures he and his friends did in Europe!
September 24 Blood checks on the way!!!

Platelets: 230.000
White blood cells: 6.0
Red blood cells: 47.8
HCT: 46.0
HGB: 15.9
well... Ilir couldn't be any happier! Everything looks normal when is almost 3 years from time of diagnosis. Way to go Ilir! Keep it up... study hard for the next test!


2005

August 08 It has been almost 2 years since the last blood checks. This week Ilir went to Boston Medical Center for some blood checks. Here are the latest results:

Platelets: 216.000
White blood cells: 5.6
Red blood cells: 47.7
HCT: 44.4
HGB: 14.9

Ilir is feeling very well, working in two jobs and getting ready to start his graduate studies at WPI (Worcester Polytechnic Institute) majoring in BioMedical Engineering.
Good Luck!
November 16 Quick Update...

SIX YEARS from time of diagnosis!Ilir is doing very well, and pretty worn out from studies and work! Appearantly Graduate school is not as fun as college!


2008

November 18 It has been a while since the last update. Surprised we still remember the password for this web site!

Platelets: 229.000
White blood cells: 4.71
Red blood cells: 43.7
HCT: 40.1
HGB: 14.2

Ilir is feeling very well, and is currently working as Lead Clinical Engineer for the Perioperative Information Management System in the Biomedical Engineering Department/Anesthesia at Brigham and Women's Hospital in Boston, MA.
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Blood test results:
Hemoglobin levels of Ilir
Hematocrit levels of Ilir
Platelets levels of Ilir
White Blood Cells levels of Ilir
Red Blood Cells levels of Ilir
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Email address Ilir: ikullolli@hotmail.com



Other links:
Aplastic Anemia Foundation of America
Bone marrow donor sites: http://www.marrow.org/DONOR/Center_Map/map.html
Steps to become a donor: http://www.marrow.org/DONOR/steps.html
Bone Marrrow Donors Worldwide: http://WWW.BMDW.ORG/
Bone marrow donor institute: www.sustance.com/bonemarrow/links.html
Albanian students abroad page: http://www.albstudent.com