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Jordan’s Story

Hey everyone,
As you might've already heard I was diagnosed with Aplastic Anemia on October 5th. A week prior to that I had blood tests done because I was experiencing extreme fatigue and headaches among other symptoms. Upon receiving my results Dr.Putukian sent me to Robert Woods Johnson Hospital.  After a week of tests I was sent to NIH to receive treatment.


At the start of camp I began to feel unusuall fatigue and occasional minor headaches that I attributed to football just as anyone would have done.  As time progressed the fatigue became more noticeable, but I still pushed it aside and believed it may have been a mental issue that I was building up because of mounting expectations and pressures.  Eventually the headaches became more consistent and combined with the headaches and numbness in my fingers and thighs I knew something was wrong and it could no longer be ignored.  A lot of people close to me realized something was wrong, and after the spraining my ankle in the Lehigh game Dr.Putukian pulled me aside and suggested I get blood test taken.
Monday, September 28th I had blood drawn and early the next morning a received a call from Dr. Putukian alerting me that my blood counts were at critically low levels.  No more than an hour later I was on my way to Robert Woods Johnson Hospital (RWJ) in New Brunswick, NJ to see a blood specialist.  I was admitted into the hospital right away and had a bone marrow biopsy and more blood tests done.  The doctors at RWJ determined I have Aplastic Anemia/PNH.  It is a rare disease in which my immune system is attacking my bone marrow and is preventing it from making neccessary blood cells.
There were two treatment options: a bone marrow transplant and immuno suppressant therapy.  The first choice would have been to get a bone marrow transplant if my sister was a perfect match, which was only a 25% chance.  This was because a BMT would effectively cure me of the disease.  The second option involves suppressing my immune system and allowing my bone marrow to hopefully recover.  This was the second option because since I will still have the same bone marrow in my body there is always the chance of a relapse. 
After eight days at RWJ, I was released to go home for a couple of days.   After finding out that my sister was not a match I was admitted to the NIH on October 13th to began my immune suppressive treatment. I received my first dose of the medication (ATG) on the 14th and experienced pretty significant side effects, but none that were not expected.  Since then I have received two more doses of the ATG drug and it is to be administered over two more days.  I have been receiving blood transfusions and platelet transfusions in order to keep my counts at safe levels although they are still critically low.  After the ATG is administered I will be able to be treated on an outpatient for the remainder of the treatment, which will last for about a couple of weeks.  And that's where I'm at now.  Obviously football is out of the question for this year, but I'm in the process of determining whether I will be able to return to school, finish out this semester and graduate with my class or if I will have to take the year off.

Latest Journal Update

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Hi Everyone, I hope you are enjoying your summer so far.  I know it’s been awhile.  It’s been over two months since my last entry and since I stopped taking my immunosuppressant medications, and I’m happy to report that my counts are continuing to go in the upward direction and I'm still feeling good!  I had my thirteenth dose of Soliris this past week and my red blood cells keep increasing along with my platelets…  Since my last update, I’m also happy to report that Mike and I finished our senior project, which is currently being housed in the Princeton athletic training facility.  Currently, I am at home for the summer continuing to workout and get back to the shape I was in pre-AA/PNH.  I know I have a long way to go, but I’m hoping to get there before I head back to Princeton to complete my senior year in the Fall.  Once again, I want to thank everyone for all your prayers and positive thoughts.  It has been a large part of my recovery process.  I also want to express a special thank you to those that have donated to this website in my name....the Catapano family, Jonathan Hein and most recently, my high school, George C. Marshall.  Unless things change, my next update will probably not be until after my return to school. No news is good news!  I hope everyone has a wonderful summer and a Happy and Safe 4th of July.