Hi everyone
just read, read all the contributions I can see on this thread Including mine. I have not been active in so many things because my sister-in-law had five months ago and performance. It was the hospital and rehab. The most difficult part is that my brother is disabled, as is their only child with neurofibromatosis.. She was the glue that kept the family together and I live in a part of LA. This closest Santa Monica and they live out in the San Fernando Valley the drive on LA freeways if you’re lucky can be 20 minutes up to more than an hour depending on time of day and accidents, etc.
I have two hematologist one at Cedar Sinai in Los Angeles and the other one at Keck USC also in Los Angeles. I have my labs run every month which I think I said before, but the question has come up if you don’t feel a huge difference after the EPO injection how do you know when you should have it? I worry about say the silent effects And or affects that haven’t been discovered or told to me of a low hemoglobin Other than fatigue. However, what’s going on with my life Could make anyone tired.
At one point we thought if my hemoglobin is in the 10 I should take the injection. Then it was thought if it’s 9.5 or lower for the injection. Maybe it’s a combination of low hemoglobin with another marker that would indicate that you should take the EPO and not rely solely on my hemoglobin level. I do have what I consider semi severe osteoarthritis. Send flareup link to low hemoglobin? If so, what would Won think the number or the combination of levels would be?
The other thing I seem to have a copper level that runs around 200 which is high has anyone else had that? I also have normal iron but I have a high ferritin, not dangerously high.
Again, I want to thank everyone for their support and suggestions. Suzanne
Hello everyone. I'm just here to check in with how everyone is doing. I have more fatigue and I'm short of breath. My recent blood work (not in Boston, locally to see how things are going), showed my platelets are slowly getting lower. So I'm not happy about that but everything else still is in the normal ranges. Hope everyone is doing ok.
Hello everyone. I'm just here to check in with how everyone is doing. I have more fatigue and I'm short of breath. My recent blood work (not in Boston, locally to see how things are going), showed my platelets are slowly getting lower. So I'm not happy about that but everything else still is in the normal ranges. Hope everyone is doing ok.
Thank you @pixiesusan for the update. I'm sorry to hear of these recent developments. The unknown can be very scary and make us all feel alone. I hope you can continue to find support here and possibly among close friends and family. I also hope you may also feel some relief with meditation and breath work. Many apps are available to help with this. I particularly like Insight Timer. For me, it helps release some of the anxiety. Regarding your symptoms... you did say your only blood tests that have changed are your platelets. Wondering if your red blood cells, hemoglobin or hematocrit below normal?
Thank you @pixiesusan for the update. I'm sorry to hear of these recent developments. The unknown can be very scary and make us all feel alone. I hope you can continue to find support here and possibly among close friends and family. I also hope you may also feel some relief with meditation and breath work. Many apps are available to help with this. I particularly like Insight Timer. For me, it helps release some of the anxiety. Regarding your symptoms... you did say your only blood tests that have changed are your platelets. Wondering if your red blood cells, hemoglobin or hematocrit below normal?
Not yet; so far, only my platelets have gone down. The rest are still normal. I was diagnosed with CCUS in 2022, so it's been 2 years, but I read that many CCUS patients change to MDS within 5 years (give or take) of the diagnosis. However, I know that's not true for everyone.
Ah, honestly, I feel (so far) quite alone in this journey. My friends "don't really get it" because I look normal. My brother is supportive but lives 1500 miles away. My daughter, well, I am guessing she can't really face it, so she just ignores it - again, partly because I look normal.
I use the Calm app; I should use it more than I do; that's one of my goals. I walk my dog every day, a walk that is pretty and quiet and, therefore, relaxing.
No question, I have a ton of anxiety; I think about this disease every day. But some days, I can put it out of my mind (to some extent) and enjoy the day I have. On other days, I fail at that.
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Hi everyone
just read, read all the contributions I can see on this thread Including mine. I have not been active in so many things because my sister-in-law had five months ago and performance. It was the hospital and rehab. The most difficult part is that my brother is disabled, as is their only child with neurofibromatosis.. She was the glue that kept the family together and I live in a part of LA. This closest Santa Monica and they live out in the San Fernando Valley the drive on LA freeways if you’re lucky can be 20 minutes up to more than an hour depending on time of day and accidents, etc.
I have two hematologist one at Cedar Sinai in Los Angeles and the other one at Keck USC also in Los Angeles. I have my labs run every month which I think I said before, but the question has come up if you don’t feel a huge difference after the EPO injection how do you know when you should have it? I worry about say the silent effects And or affects that haven’t been discovered or told to me of a low hemoglobin Other than fatigue. However, what’s going on with my life Could make anyone tired.
At one point we thought if my hemoglobin is in the 10 I should take the injection. Then it was thought if it’s 9.5 or lower for the injection. Maybe it’s a combination of low hemoglobin with another marker that would indicate that you should take the EPO and not rely solely on my hemoglobin level. I do have what I consider semi severe osteoarthritis. Send flareup link to low hemoglobin? If so, what would Won think the number or the combination of levels would be?
The other thing I seem to have a copper level that runs around 200 which is high has anyone else had that? I also have normal iron but I have a high ferritin, not dangerously high.
Again, I want to thank everyone for their support and suggestions. Suzanne
Hello everyone. I'm just here to check in with how everyone is doing. I have more fatigue and I'm short of breath. My recent blood work (not in Boston, locally to see how things are going), showed my platelets are slowly getting lower. So I'm not happy about that but everything else still is in the normal ranges. Hope everyone is doing ok.
Susan
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1 ReactionThank you @pixiesusan for the update. I'm sorry to hear of these recent developments. The unknown can be very scary and make us all feel alone. I hope you can continue to find support here and possibly among close friends and family. I also hope you may also feel some relief with meditation and breath work. Many apps are available to help with this. I particularly like Insight Timer. For me, it helps release some of the anxiety. Regarding your symptoms... you did say your only blood tests that have changed are your platelets. Wondering if your red blood cells, hemoglobin or hematocrit below normal?
Not yet; so far, only my platelets have gone down. The rest are still normal. I was diagnosed with CCUS in 2022, so it's been 2 years, but I read that many CCUS patients change to MDS within 5 years (give or take) of the diagnosis. However, I know that's not true for everyone.
Ah, honestly, I feel (so far) quite alone in this journey. My friends "don't really get it" because I look normal. My brother is supportive but lives 1500 miles away. My daughter, well, I am guessing she can't really face it, so she just ignores it - again, partly because I look normal.
I use the Calm app; I should use it more than I do; that's one of my goals. I walk my dog every day, a walk that is pretty and quiet and, therefore, relaxing.
No question, I have a ton of anxiety; I think about this disease every day. But some days, I can put it out of my mind (to some extent) and enjoy the day I have. On other days, I fail at that.