This year has been a roller coaster ride with my HES. The Hematologist that I had been seeing the past 5 years retired and I got a new one in January. It's always hard to transition to a new doctor, but I've found my new doctor to be knowledgeable about HES as well as a very nice person to work with.
I'm presently taking Hydroxyurea (chemo) to control my white blood counts. Unfortunately, as the year has progressed the chemo has lowered my blood counts TOO low causing me to be anemic. Recently, my doctor decided to lower the amount of chemo in order for my blood counts to raise. About 2 weeks into my new dosage of chemo I started having more HES symptoms. I won't go into detail on that, but believe me, I knew that my new dosage wasn't going to work out! So, I called the doctor, they had me come in for another cbc and my blood levels had raised up enough to raise my chemo back to where it had been before.
I know this all sounds horrid to most of you, but this is actually a good thing for me. I'd rather be tired, then in pain. So, now I'm about 3 weeks into my raised dose and I'm feeling much better. Yesterday I went to the doctor again for another cbc and visit. She has decided to not mess with my chemo dosage anymore. She believes that we've found the "happy medium" that keeps most things level.
So, that's where we're at for now and I'm fine with that. I'm feeling pretty good and happy to have some energy back during this time of year. Of course, this will be an on going process, so we'll continue to keep tabs on my blood levels.
I wrote a testimony and it was published through my church newsletter if any of you want to read it. It's about some things that the Lord has taught me through all of this. You can find it right here.