Day +45!!!!

[kmartino07]

Hello All!!! I hope everyone is doing well or on their way. Today is Day +45 post BMT for me. I remember Day 3 wondering to myself. How in the world was i going to make it. I felt so weak and drained then. Now here i am.

I would love to say that i have been discharged and my numbers are great. And i am moving on with my life. But thats simply not the case. Overall I feel fine. Some days i feel more fatigued than others. Some days I can't eat, some days all i do is eat. My main concern is my numbers.

My numbers are fluctuating like crazy. Which is really frustrating for me. Two weeks ago my numbers shot up.

WBC 1.78
HGB 10.
PLT 77!! (highest since i been diagnosed)
ANC 1040!!

Only for the following week for my numbers to tank.
And everyday after my numbers got lower and lower. Then last week they went up. And now they're down.

My doctors said that it was normal for counts to go up and down for a while. But at what point do they intervene?
My Chimerism actually did show good numbers. They confirmed that my brothers cells are there. They say they look at 3 diff cell lines. (sorry i cant remember the terms)
But one line was 97% Another at 75% and the last at only 9% but they weren't too concerned since the other numbers were so high and technically it's still early. They also did a biopsy and i cant remember the result bc when they tried to explain to me, i couldn't concentrate bc of some drug they had me on for some neck pain i was having. I just know it wasn't a high percentage but again, it's still early..

I know I'm being really impatient but only bc i would like to go home to my children and fiance'. I'm discharged from the hospital but i have to stay close in case of emergency. So i'm staying local with my grandmother.

I know everyone's experience is different. But how long after engraftment did it take for your numbers to become semi-normal, normal? Should i ask about getting the neupogen shot? Is there anything i can do to increase my WBC?

Any input is appreciated. Thank you

[bailie]

I think it is normal to not have "normal counts". I am at Day +530 and my counts have never stabilized. I feel fine and I can't tell much from the counts. As long as they stay out of the "danger zone" the body seems to do ok.

[PaulS]

Hi Kamara - you are doing exceedingly well - it is very early to expect normal counts - I'm at day 125+ and am still not normal in platelets and RBC - Day 100 is more of a marker and even then all your counts may not be normal. Relax and take care of yourself - a good time to learn patience. Hopefully you'll continue to sail through - but don't be surprised if there are setbacks along the way.

You need to be especially careful about avoiding infections - especially with young children - lovable and cute disease vectors - My doctor describes the transplanted immune system as that of a premature infant. Listen to the instructions about wearing mask and gloves, hand washing, avoiding crowds etc. Take time to heal!

Best wishes for a continued, boring recovery.

Paul

[kmartino07]

Thank you guys, Good to know this isn't uncommon. I def need to learn to be more patient with this process.

[DanL]

Like many others have already said, normal can take a while and may mean something different to each person. My blood counts weren't normal until about November 2015 - transplant was February 26, 2014. Even then, my HGB is below the actual normal range of 14.2, but it is hanging out around 11-12, which to me is great. I have not required but one transfusion in the nearly 2 years since transplant, which is my measure of success, along with remission of course.