Another Feverish Weekend
Right now, we are waiting for the results of the HLA typing to see if there is a donor among my siblings. The last time we checked with Fox Chase Cancer Center, they said the results usually take 12 working days from when they got the blood samples, which would take us to this Thursday, July 22, and I think that is probably the earliest we would hear. After the donor is located, there is further testing of the transplant recipient (for those of you who are getting confused, that’s me in this case), getting approval for the transplant from the health insurance company, and then further testing of the donor before the harvest is started. It seems each of these things will take a week or so, so they said it looks like late August is the most likely time for the transplant to happen.
In the meantime, here is what happened last week:
· Wednesday, I went to see the doctor who originally drained my pilonidal cyst, and he said as far as he was concerned, I was done with it and he would not recommend doing anything further. I’ve healed well and he doesn’t even know if there’s much of a cyst left.
· On Thursday, I woke up with a slight sore throat and some achiness, but I went to work anyway, hoping they would just fade. They didn’t fade much, and I was already scheduled at 3:30 for my weekly hematology appointment to have a CBC. I told them about my achiness and sore throat, but my temperature was 98.9 and my hematologist, Dr. H saw nothing in my throat. My blood counts were very close to what they had been the 2 prior weeks. Dr. H also discussed the possibility of me being treated with Neulasta which is a G-CSF (granulocyte colony stimulating factor) drug to boost my white blood count (WBC). The advantages of taking Neulasta are that it should boost my WBC to decrease the likelihood of more infections, plus if it worked, it would tell us that if I were to get a serious fever, a G-CSF would be an effective treatment. He left the decision up to me, so after thinking about it for a few minutes, I decided not to go ahead with that right now. That night, I developed a fever of about 100.4.
· Friday morning, the fever was still at 100.4 and my throat was even sorer, so I called Dr. H and when I went in, they recorded a fever of 100.4 also, and Dr. H said he saw redness in my throat he hadn’t seen before so he put me on an antibiotic even though he thought I probably had some virus and not an infection. My blood counts all seemed to change quite a bit in one day, with my WBC going up from 1.0 to 1.4 (the highest it’s been measured since 02/03), the platelets going down from 35 to 28 (the lowest it’s ever been measured), and my hemoglobin going up from 9.4 to 10.0. I’m glad to know my body still knows how to increase the WBC when needed. The last reading surprised me the most because the red blood cells I would think would be a little more stable, and there’s not an obvious reason why they would go up as there is for why the WBC would go up (to fight the virus/infection). Dr. H also had no explanation why the hemoglobin would jump. I wonder if the different testing machine could be why. He brought up the Neulasta possibility again, but I said I didn’t know how to evaluate the wisdom of going one way or the other. I think he sort of took this as another declination to do it now, so we’re not. He then sent me for a throat culture and blood culture to check for a systemic infection. I felt pretty bad Friday evening, but the fever broke a little before I went to bed.
· Saturday (yesterday), I felt a lot better, although still not great. I still and a sore throat and my right lymph gland had swollen so big, it was easy to see just by looking at me.
· Today, I feel even better and while the lymph gland is still quite swollen, my throat is not as sore.
I find that getting sick is a bit worrisome because I realize that my weakened immune system could probably be overwhelmed pretty easily. While it seems like things are kind of dragging here lately, my hematologist said that things don’t usually move this quickly for a bone marrow transplant, so I guess more patience is called for.
In the meantime, here is what happened last week:
· Wednesday, I went to see the doctor who originally drained my pilonidal cyst, and he said as far as he was concerned, I was done with it and he would not recommend doing anything further. I’ve healed well and he doesn’t even know if there’s much of a cyst left.
· On Thursday, I woke up with a slight sore throat and some achiness, but I went to work anyway, hoping they would just fade. They didn’t fade much, and I was already scheduled at 3:30 for my weekly hematology appointment to have a CBC. I told them about my achiness and sore throat, but my temperature was 98.9 and my hematologist, Dr. H saw nothing in my throat. My blood counts were very close to what they had been the 2 prior weeks. Dr. H also discussed the possibility of me being treated with Neulasta which is a G-CSF (granulocyte colony stimulating factor) drug to boost my white blood count (WBC). The advantages of taking Neulasta are that it should boost my WBC to decrease the likelihood of more infections, plus if it worked, it would tell us that if I were to get a serious fever, a G-CSF would be an effective treatment. He left the decision up to me, so after thinking about it for a few minutes, I decided not to go ahead with that right now. That night, I developed a fever of about 100.4.
· Friday morning, the fever was still at 100.4 and my throat was even sorer, so I called Dr. H and when I went in, they recorded a fever of 100.4 also, and Dr. H said he saw redness in my throat he hadn’t seen before so he put me on an antibiotic even though he thought I probably had some virus and not an infection. My blood counts all seemed to change quite a bit in one day, with my WBC going up from 1.0 to 1.4 (the highest it’s been measured since 02/03), the platelets going down from 35 to 28 (the lowest it’s ever been measured), and my hemoglobin going up from 9.4 to 10.0. I’m glad to know my body still knows how to increase the WBC when needed. The last reading surprised me the most because the red blood cells I would think would be a little more stable, and there’s not an obvious reason why they would go up as there is for why the WBC would go up (to fight the virus/infection). Dr. H also had no explanation why the hemoglobin would jump. I wonder if the different testing machine could be why. He brought up the Neulasta possibility again, but I said I didn’t know how to evaluate the wisdom of going one way or the other. I think he sort of took this as another declination to do it now, so we’re not. He then sent me for a throat culture and blood culture to check for a systemic infection. I felt pretty bad Friday evening, but the fever broke a little before I went to bed.
· Saturday (yesterday), I felt a lot better, although still not great. I still and a sore throat and my right lymph gland had swollen so big, it was easy to see just by looking at me.
· Today, I feel even better and while the lymph gland is still quite swollen, my throat is not as sore.
I find that getting sick is a bit worrisome because I realize that my weakened immune system could probably be overwhelmed pretty easily. While it seems like things are kind of dragging here lately, my hematologist said that things don’t usually move this quickly for a bone marrow transplant, so I guess more patience is called for.
1 Comments:
From Wayne:
It sounds rather scary to be reminded so vividly of the dangers you face from such a low white blood count while at the same time facing what must seem like a rather drawn-out process to do something about it. It's hard to imagine, though, how much worse it would have been for you to start trying to find the source of the problem only after you started getting sick.
I really hope at least one of us siblings comes up as a match so you can have a good donor quickly. If all goes well from here on, it will turn out to be nothing more than a big scare and life will be the sweeter for forcing all of us not to take it for granted.
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