Just a quick update on how I am doing. On Monday (5/19) I went down to La Jolla for my bi-weekly infusion of IVIG. I have had a couple of blood tests since my last update. On May 7th I had a test and I was at 11.0, then on May 12th, I was at 11.7, and then Monday (11/19) I am at 11.6. So it seems that the Prednisone is helping to keep me on the upswing. After the rise to 11.7 the doctor, took me down from 80 mg / day to 60 mg / day. After the test Monday, they decided to lower my dose to 40 mg / day and see what happens next.
If my hemoglobin continues to rise, they will lower the dose once again. If it stays the same or starts going down, we are not sure what will happen then (probably increase the Prednisone). Keep in mind the NORMAL hemoglobin range in males is either 12 or 13 depending on who you talk to. So right now, I am still on the low side. I am feeling surprising well, even with that low level, but I think the Prednisone is keeping me up a little.
Overall, my numbers are still much better than back in November, so that is a good thing. My white count continues to rise (not so good), so the good doctor thinks that I should begin treatment for the CLL as soon as I can get off of the steroids. The hope is that I can be off of steroids in about 6 weeks if all the numbers keep pointing in the right direction. There is also thinking that the CLL might actually induce AIHA, so if you can get the CLL more under control, it also controls the AIHA. There are several options for treatment, so we will have to make a decision about that in the next month or so. I see Dr. Kipps on June 3rd, and we will discuss those options in more detail then.
It is a little funny that every single small thing makes me wonder what is going on. When my heart races a little, I start to cough, or I get a little weak, all make me pause. All of those things make me wonder, 'is it the Prednisone, is it the AIHA coming back, is it the CLL raising its ugly head, am I coming down with something?' So it seems like I am always anxious, which I know is not a good thing, but it is always in the back of my mind. Then I will go a day or two with no symptoms, and I forget that anything is wrong.
A side note. There is a lot happening with the Evans Clan this week. Sarah, our youngest daughter graduates from her Interior Design program, our son Matt applied for Newport Beach Fire (keep your hoses crossed). Jeff is leaving for Spain on Saturday. Our daughter Aimee is flying over to Spain and meeting Jeff (and his friends Jared and Tim) in Spain next week. My Dad and his wife leave on a 3 week European Adventure on Wednesday, on the 29th, they (my Dad, Lois and Jeff and Aimee) will all be in Barcelona, so there will be some sort of meeting over there of part of the Evans clan. Then the next week my sister and her partner Cherese fly to Paris for a week, then on to London where they will meet my Dad and Lois for a week there. Almost too much to keep up with.
Another, side note. Yesterday was my 3 year retirement anniversary. I can't believe it has been that long. A lot has sure happened in that time. As much as I enjoyed my job and the people at the City, I have no regrets about retiring, and have enjoyed the traveling, the golf, the going out to dinner in the middle of the week, 2 & 3 day mid-week trips to here and there, home improvement projects, and time with the family. In the back of my mind, I knew that the CLL would become an issue, and I am glad that I had the opportunity to retire somewhat early and start doing all the things that you want to do when you retire.
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