How Do I Know?

[ellenok]

30 years ago, almost to the day, I lay in a hospital bed hearing the news. A month away from marriage, I was told I had leukemia and would be dead by winter. He married me anyway!

1983: Spring, Diagnosis of Leukemia
1983: Fall, Oops, diagnosis correction Aplastic Anemia, University of PA Hospital, Philadelphia, PA
1983-1986: Living the high life on prednisone
1986: Fall, deep nose dive on the counts
1987: Winter, nirvana - I write to all 12 of the Hematologist/Oncologists listed as the best in the country in Good Housekeeping Magazine - hey my mom didn't raise no dummy - pre internet, I wrote to them all and 11 wrote back and told me about Duke's program.
1987: Winter, Spring experimental at the time, I agreed to an ATG because of my age and the possibility that I could have or need a bone marrow next
1987: no response, or at least not if you count a severe reaction that had me learning to walk and talk all over again.
1988: the clouds open and the sun shines through - my counts begin to rise
1988 - 1996: as normal is for people with this disease
1991: Oops forgot to mention the most important activity. Birth of a daughter on 10.10.1991
1996: Pain in elbow=osteonecrosis of left elbow
1999: Rising from a chair and fall down=osteonecrosis of right knee
2000: Knee Replacement
2001: Back Surgery, Disc replacement
Fast forward 2013 on the eve of celebrating my 30th wedding anniversary, I receive a call from the doctor that my Platelets are dangerously low.
Spring 2013: sitting in the office - age spots on our hands, greying around the temples, some extra pounds on our bodies and our usual cracking jokes to put everyone else at ease. This new Hematologist that wasn't alive when I was a pioneer in this disease, is star struck on my 30 year span with Aplastic Anemia and PNH. Unsettling.
Do I have to have a bone marrow biopsy? What tells me that they are both back? Where do I go 30 years later? Who has the most expertise that fits my profile?
One day at a time, just trying to answer the questions.
To be Continued.....

[triumphe64]

I was hoping someone would have answered you by now.

Here are two good suggestions:

First: Contact Leigh Clark at AAMDS.
http://www.aamds.org/

She knows everything that can help you.

Second: Call Dr. Neal Young at The National Institute of Health.
I'm sure they would be interested in anyone with a 30 year remission.
His nurse is Olga Rios 301-496-4462.

Both of those people are very helpful, but also very busy. They will get back to you, but it may take longer than you expect.

[Neil Cuadra]

Ellen,

Your story is incredible. You've shown us what's possible, but also that the ups and downs with aplastic anemia can be hard. Pioneering doctors saved your life and made the life of your daughter possible. These days there are many more experts you can ask to help you.

Congratulations on your long marriage and how far you've come. Good luck with your continuing journey, specifically getting an explanation and a plan of action for your low platelets.