Pnh labs

[Heather8773]

So today I picked up my husbands labs

Hgb 5.5 lowest it has been
Plateletts 14 continuing to trend down quickly
Rbc 1.28 gone down
WBC 3.6 only thing that has gone up instead of down this time
Hct 15.0 down

I hope that things start going up

[Neil Cuadra]

Heather,

Ronald's low counts sound very familiar to me because when my wife was first diagnosed with aplastic anemia she had HGB of 4.7, platelets of 14, and WBC of 3.3. That's very close to Ronald's lab results.

Two thing that have changed since my wife's treatment: One is the level of knowledge of the doctors, who learn more about bone marrow failure and its treatment every year. They may not have found a cure for PNH yet but they've made leaps and bounds in understand its biological mechanics. The other changes is the availability of drugs like Soliris that have revolutionized PNH treatment and made such a big difference to so many patients.

I look forward to hearing news of higher counts on your husband's next CBCs.

[Heather8773]

Thank you

It's very comforting to know someone eles has been this low. I was sitting in my car (parked) just staring at the results frozen for awhile. Thinking nooooo! What do/can I do!!! How low is someone humanly able to go!!!

I really appreciate you responding and the second part about advancements being made. At this point I have no idea the game plan. We're just staying w eculizumab and drawing more labs Monday.

I talked to my boss today about taking days off to volunteer w be the match, regional gulf coast blood, and support group meetings and he was so cool and helped me realize i am not the Dr but I can help in some way