Yesterday Soley (my wife ) and I headed off to Juravinski Hospital in Hamilton fully expecting to hear more of my probable bone marrow transplant. I think it’s been since March that we have been hearing of the transplant because whatever they try my immune system does not seem to improve. Immunoglobulin IVs , Neupogen does not seem to budge my neutrophils or white blood cell count.
So the doctor comes in and said that she could not get approval for a bone marrow transplant because they are still not 100% sure. They are not sure it is the problem.
She explained my cells act like a freeway with no cars in sight but all the dealerships are full of cars. I have a lot of cells the biopsy showed 80% in fact and all in regular shape and appearing healthy.
So I asked what about my neutrophils count at 0 and my white blood cell count at 0.9? She said usually people with that low count have about three months to live unless action is taken. Their immunity is so low they catch infection and die. In rare cases such as mine I can go on living for years with low blood counts.
Bottom line is the bone marrow transplant is a big deal and it would be awful to go through all that and still have the same result. That I get.
Another add on is my liver biopsy which I was led to believe was reassuring showing no concern the second one I had showed more cellular lymphoma cells. It is a mild cancer that can be treated with oral medicine. So we have to keep an eye on that now.
So does this mean I will never need that transplant? No one knows for sure but I think I have to be near death’s door to get one. They will not do it if my cells all appear healthy. Like I have heard before they are just lazy. Only work when they have to. The doctor said in the past 9 months I have had no infections of any kind. I asked what about the sore throats and she said that was nothing. Normal stuff.
Basically they cannot diagnose what the problem is coming from. That makes convincing a board of a transplant pretty difficult.
She said stay off work and in three weeks come back after they have looked at the liver biopsy and bone marrow biopsy more closely.
Meanwhile I still go for the bi-weekly bloodwork to check on the hemoglobin to see whether I need a transfusion. My goal now is to start working on getting that up higher so I do not have to go as often.
In conclusion the doctors are baffled like the one in Guelph was and for three years the one in Orangeville. This is probably something I have to live with indefinitely but my hopes of this going away with a transplant are faint. They will be monitoring me though should anything starts going haywire.
At least we found out about the liver. That could be the problem not the bone marrow. It could be causing the problem but at this moment anyone’s guess is as good as mine.
If you are confused about all this it appears the professionals are as well. I am learning as I go also.