D+225 (6/13/2014) - Chapter 3
6/13/2014 - went for 20th post transplant checkup HGB dropped to 9.1 (13-17 g/dl)
6/20/2013 - HGB dropped to 8.8, Diagnosed Auto immune disorder attacking my RBC's, and started IVIG for 4 days straight.
6/23/2014 - HGB dropped to 7.2, received 4th dose IVIG, and a Blood transfusion. Was blood typed B- (my old blood type, and questioned it) Screener said: You're indeed AB+ type, but that I was testing positive for an 'Anti-A' blood type antigen
6/24/2014 - woke up feeling terrible, rushed to urgent care at MSK, had a 20 minute 'spinal and pelvic' migraine attack massive pain 9/10 pain. Get to Hospital HGB had dropped to 6.4 even after prior day transfusion. received 2 units B-, HGB up to 8.1 admitted for observation.
6/25/2014 - More observation, HGB at 7.9 and BMB/BMA, this caused another 20 minute attack and a bad result for the BMA as dr. was distracted by my writhing.
6/26/2014 - HGB at 7.8 released from urgent care and went home, no attack today!!!
6/27/2014 - HGB up by itself to 8.0, outpatient for follow up and re-do of BMB/BMA, dr. got a good sample, and my pain attack happened again afterwards, sent home.
6/28/2014 - Another 20 minute attack, as before completely gone after done.
6/29/2014 - Another 20 minute attack, as before completely gone after done.
6/30/2014 - Another 12:30pm dr. appointment, woke up 5:00am to another 20 minute attack, 9:00am another 20 minute attack, 9:30am another attack. In the car to appointment, and at 10:30 another 20 minute attack, 11:00 another attack, get to dr. appointment, HGB at 6.1, two units of B-, and two more attacks (plus Ativan and two intravenous morphine shots) admitted into Hospital.
7/1/2014 - HGB at 7.6, no new attacks, first 'poor' BMB/BMA came back 6% blasts, but perfect flow cytometry??!! showing sample wasn't taken well. Had chest x-ray, and spinal and pelvic MRI.
7/2/2014 - HGB at 8.0 (no transfusion), no new attacks, second 'better' BMB/BMA came back 4% blasts, waiting for bone sample analysis, told from prelim analysis appears that I have Erythroid RBC Leukemia (not pure).
7/3/2014 - HGB at 8.6, platelets at 37, given platelets and another RBC to get me through the weekend, and I was released for the weekend.
7/4/2014 - so here I am faced with another go around the chemo / BMT rollercoaster, amazed at how fast things can change with these diseases. I still consider my self one of the luckiest people on earth, knowing that I have the opportunity to be surrounded by friends and family... I have the opportunity to have a second and now a third chance at a longer life...
All the best to all of you in your fights, May God Bless!!!
David
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ![Smile](images/smilies/smile.gif) ; 5.5% blasts down to 3%, now 1% (post BMT)
Last edited by Whizbang : Fri Jul 4, 2014 at 11:36 AM.
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