Travelling the road
My husband was diagnosed in May, 2014 with low risk MDS. He is only 72. To date he has had 20 units of packed red cells. He has been receiving Procrit shots weekly since the end of May. The intervals between transfusions is getting shorter, we were 5 wks, then 4 and now at 3 wks. I am concerned that he is not low risk as he was diagnosed. I am concerned about the frequent transfusions. In only 6 months we have come to this.
He is not interested in learning about his diagnosis. He just wants to go to the Dr. every week and have Dr. tell him what he needs to do. When I research and share he gets anxious so I try to keep it to myself. Because he has already had 20 units, I did mention tonight that the Dr. will probably check his iron levels and he may have to do something to reduce the iron in his body. It made him fearful. I just did not want him to get blind sided. He does not want me to go to his appointments with him.
I am still in the work force and I have been trying to get information about symptoms, therapies available, clinical trials etc so that I will know what to do. I do not know if I need to take a leave of absence.
We used to travel a bit but that is a challenge now. He cannot walk very far so I have to drop him off and go park the vehicle which is my pleasure to do but he hates it. He says that he is supposed to do that for me, not the other way around. He is more comfortable at home and spends most of his time watching t.v. and reading.
I am trying to stay positive and not let him see how scared I am.
I think information is power; I haven't been able to find the information that I feel I need to be a good support for my husband or to address the questions I have. Hopefully someone will read this and say that I am anxious for nothing and that this is a perfectly normal scenario for MDS and that he can enjoy a long life with good quality even with this disease.
He is not interested in learning about his diagnosis. He just wants to go to the Dr. every week and have Dr. tell him what he needs to do. When I research and share he gets anxious so I try to keep it to myself. Because he has already had 20 units, I did mention tonight that the Dr. will probably check his iron levels and he may have to do something to reduce the iron in his body. It made him fearful. I just did not want him to get blind sided. He does not want me to go to his appointments with him.
I am still in the work force and I have been trying to get information about symptoms, therapies available, clinical trials etc so that I will know what to do. I do not know if I need to take a leave of absence.
We used to travel a bit but that is a challenge now. He cannot walk very far so I have to drop him off and go park the vehicle which is my pleasure to do but he hates it. He says that he is supposed to do that for me, not the other way around. He is more comfortable at home and spends most of his time watching t.v. and reading.
I am trying to stay positive and not let him see how scared I am.
I think information is power; I haven't been able to find the information that I feel I need to be a good support for my husband or to address the questions I have. Hopefully someone will read this and say that I am anxious for nothing and that this is a perfectly normal scenario for MDS and that he can enjoy a long life with good quality even with this disease.
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