×

Please take a moment to share your thoughts with us.

1. Based on your experience today, how likely is it that you would recommend CaringBridge to a friend or family member?

No Thanks

My 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.

Feed

Jordan Culbreath posted a new journal entry.

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 ... Read more

Linda Robicheaux signed Jordan's Guestbook.

Dear Jordon, thanks so much for sharing our disease with the world.  I know none of us AA people like anyone to know we are weak at times, but your courage sharing your ... Read more

Laura Newsom signed Jordan's Guestbook.

Dear Jordan - My 10-year-old son was diagnosed with AA in January. He too is a talent athlete and also realized something was wrong due to his tiredness when he was ... Read more

Kevin Kennedy signed Jordan's Guestbook.

Hi Jordan, Not sure how the link to my son's caringbridge site is getting misdirected, but its going to a bar site!  See the post below from me. Anyway, have a great ... Read more

Becky Culleton signed Jordan's Guestbook.

Jordan, thank you for sharing your story.  As the mother of a son with AA, it is encouraging to read about your successes.  His biggest complaint is that he has had to ... Read more

Kevin Kennedy signed Jordan's Guestbook.

Hi Jordan, I just read your story and will be voting for you for most Uplifting Athlete.  My son also has aplastic anemia and he was also treated at the NIH by Dr Young ... Read more

Jose Roque signed Jordan's Guestbook.

Jordan; Well done today! Great victory vs Lafayette. The Roque' Family extends their dearest and warmest regards to you. May God always bless you and stay strong, son. ... Read more

gib kirwin signed Jordan's Guestbook.

Jordan- It has taken a while to compose myself after reading of your return to the team.  What a well kept secret that has brightened everyone's day.   Best wishes ... Read more

Mark Disler signed Jordan's Guestbook.

Jordan: It has been good to learn of your progress and I look forward to your next update. All the best, Mark Disler '74 Read more

Mark Ethridge signed Jordan's Guestbook.

Great news, Jordan.  It was fun to see you at reunions. See you this fall. Best, Mark Ethridge '71  Read more

Show more recent activity