How did Mr. Womp Womp Wooomp Downer turn back into his happy self? What caused this transformation? Well, it was a lot of hard work (and trial and error) and the expertise of Dr. Stadtmauer of The Hospital of UPENN. I could not recommend him MORE to anyone having ANY hematological disorders. When you see him, you are going to wait a long time before he actually comes to the examination room, but I’m telling you, he’s more than worth the wait. He’s knowledgeable, personable, and a perfect mix of seriousness/humor for people dealing with really difficult health issues. His team is just as impeccable at HUP. I’ve seen an umpteenth number of his colleagues in my many stays at HUP and they’ve all just been fantastic.
Now, I know this sounds like I’m talking as though I’m cured. I know that my battle is not nearly over and that there may be times ahead, but for right now I am going to enjoy the fact that I am healthy and am able to reasonably enjoy my life again for the first time in about 8 months. And the best part about this news? It took three weeks to get here. Only three effing weeks to turn it all around.
So, after the last battle right before Christmas, Dr. Stadtmauer’s “hail mary” was something called Myleran. The medication is really supposed to be used for cancer patients, but Dr. Stadtmauer was interested in the drug’s ability to suppress the bone marrow from creating cells. Everything else we had tried to do this either had a negligible effect or may have contributed to my blood clotting even more.
At last check, my blood counts were extremely out of whack. My hemoglobin count was fluctuating between 6.5 (at its worst) and 9.1 (immediately after blood transfusions – a normal hemoglobin count is between 14-18 gm/dl). My platelet count, which has caused the most damage to my life with all the clotting) has been astronomically high. Before the new year and before starting on the Myleran, it was hovering around 1.2M (a normal count is between 150K – 400K / microliter.. yep.. About THREE TIMES the MAXIMUM safe amount). These are numbers I have been familiar with for a while. The HGB was not seen double digits since around 2007 and the platelet count shot through the roof following my splenectomy. Alongside Myleran, I switched blood thinners. Either the Warfarin I was taking failed or my body was getting used to it or something because I had the blood in the lung episode while on Warfarin. A new drug called Fragmin would become my new friend. The benefit: Fragmin doesn’t really need to be managed. I just take it and that’s it. Oh! Another incredible amazing wonderful minor benefit of Fragmin is that it is not metabolized in the liver, SO I CAN FINALLY DRINK ALCOHOL AGAIN! Ahem. Which is good.
Anyway, after being on Myleran for two weeks (on my birthday) my blood counts returned at a 9.6 for the hemoglobin (I had a transfusion the preceding week) and miraculously, my hemoglobin returned at 874K. It had fallen 400K in a little more than 2 weeks! It was absolutely nuts. I wanted to jump out of my skin with joy when I heard this. It was the 2nd best birthday present I could’ve gotten behind the PS3 my sister got me.
Again on the 25th, I had another appointment with the good doctor to check the progress again. This time, the results were even more unbelievable. My hemoglobin at 11.1 and platelet 504K! Dr. Stadtmauer even took the time to pat himself on the back. Ha.
Tomorrow, I have another appointment here locally in NJ with my backup hematologist to see where my counts are and for the first time in months, I’m actually looking FORWARD to it to assess my progress instead of being mortified to find out how far I’ve regressed. I wonder if Dr. Kumar (the local hematologist) is going to be amazed when he sees my CBC numbers. How exciting!
As always, thank you to everyone who supported me through all this crap. I’d like to give a special thank you to my very good Tom. When I spent some time with him this weekend, he stumbled over to me and said, “Hey, listen. I’m really glad you’re feeling so much better. I was really worried about you. I just wanted you to know that. I wouldn’t be able to tell you this if I was sober.” Made me laugh and brought a little tear to my eye.
Here goes nothing.
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