My blood pressure bottomed-out again yesterday. I felt fine until I stood for my standing blood pressure count and I became very dizzy and the count was 58/38. I had to wait for a while but the numbers did not come back to a level that they would allow me to drive home. Arthur picked me up and after an hour or two, I felt better.
My phosphorus count is very high and that has contributed to my itching. I was taking one phosphorus binder a day but they have increased it to two per meal. When your phosphorus gets too high, it leaches out of your bones and into your blood stream and this causes itching.
Thursday, February 23, 2006
4:11 am cst
Friday, February 17, 2006
Dialysis went well today.
I went in for my lab work and my hemoglobin was 11.1 (great) and my platelets were 19,000 (good for me). Today was my appointment to see my oncologist, Dr. Page. I asked him to decipher the results of the Free Kappa & Lambda Lt. Chain Assay I had in January. He explained it very well and the bottom line is it does not show amyloid deposits in my blood and shows no evidence of Multiple Myeloma and both of those findings are very good. These tests are relatively new and I am glad to have the test as part of my records.
I asked Dr. Page if anyone ever has stem cells that do not develop and he said it was a possibility. He feels we have gotten a minimal response from the stem cells and that will probably be all we get because he said with me being a year out from the transplant, he does not feel they are going to respond any better. He has told me before that each time I get blood and platelets (over a long period of time) they do me less and less good. I asked him if my stem cells were not going to work, when would we know that and what then? He said the platelets will be the best gage and when they are between five and ten and a transplant does not move that number then we will know. I asked him what then, would I continue to get transfusions? He said yes but we will deal with that when it happens. At this time, they have nothing else to offer.
The last two times I have received transfusions have resulted in me itching all over at dialysis the next day. I asked Dr. Page if this was just a coincidence and he said it was more likely that my system is building antibodies against receiving so many transfusions. As I receive more of each, my body will fight the intruder with antibodies. It is just my body trying to control the situation and it is unable to do so. It is trying its best but my maladies are just too strong for it to deal with. Too much being thrown at it over these last six years.
I went in for my lab work and my hemoglobin was 11.1 (great) and my platelets were 19,000 (good for me). Today was my appointment to see my oncologist, Dr. Page. I asked him to decipher the results of the Free Kappa & Lambda Lt. Chain Assay I had in January. He explained it very well and the bottom line is it does not show amyloid deposits in my blood and shows no evidence of Multiple Myeloma and both of those findings are very good. These tests are relatively new and I am glad to have the test as part of my records.
I asked Dr. Page if anyone ever has stem cells that do not develop and he said it was a possibility. He feels we have gotten a minimal response from the stem cells and that will probably be all we get because he said with me being a year out from the transplant, he does not feel they are going to respond any better. He has told me before that each time I get blood and platelets (over a long period of time) they do me less and less good. I asked him if my stem cells were not going to work, when would we know that and what then? He said the platelets will be the best gage and when they are between five and ten and a transplant does not move that number then we will know. I asked him what then, would I continue to get transfusions? He said yes but we will deal with that when it happens. At this time, they have nothing else to offer.
The last two times I have received transfusions have resulted in me itching all over at dialysis the next day. I asked Dr. Page if this was just a coincidence and he said it was more likely that my system is building antibodies against receiving so many transfusions. As I receive more of each, my body will fight the intruder with antibodies. It is just my body trying to control the situation and it is unable to do so. It is trying its best but my maladies are just too strong for it to deal with. Too much being thrown at it over these last six years.
Monday, February 13, 2006
Dialysis went well today.
I went in for my lab work and my hemoglobin was 11.1 (great) and my platelets were 19,000 (good for me). Today was my appointment to see my oncologist, Dr. Page. I asked him to decipher the results of the Free Kappa & Lambda Lt. Chain Assay I had in January. He explained it very well and the bottom line is it does not show amyloid deposits in my blood and shows no evidence of Multiple Myeloma and both of those findings are very good. These tests are relatively new and I am glad to have the test as part of my records.
I asked Dr. Page if anyone ever has stem cells that do not develop and he said it was a possibility. He feels we have gotten a minimal response from the stem cells and that will probably be all we get because he said with me being a year out from the transplant, he does not feel they are going to respond any better. He has told me before that each time I get blood and platelets (over a long period of time) they do me less and less good. I asked him if my stem cells were not going to work, when would we know that and what then? He said the platelets will be the best gage and when they are between five and ten and a transplant does not move that number then we will know. I asked him what then, would I continue to get transfusions? He said yes but we will deal with that when it happens. At this time, they have nothing else to offer.
The last two times I have received transfusions have resulted in me itching all over at dialysis the next day. I asked Dr. Page if this was just a coincidence and he said it was more likely that my system is building antibodies against receiving so many transplants. As I receive more of each, my body will fight the intruder with antibodies. It is just my body trying to control the situation and it is unable to do so. It is trying its best but my maladies are just too strong for it to deal with. Too much being thrown at it over these last six years.
I went in for my lab work and my hemoglobin was 11.1 (great) and my platelets were 19,000 (good for me). Today was my appointment to see my oncologist, Dr. Page. I asked him to decipher the results of the Free Kappa & Lambda Lt. Chain Assay I had in January. He explained it very well and the bottom line is it does not show amyloid deposits in my blood and shows no evidence of Multiple Myeloma and both of those findings are very good. These tests are relatively new and I am glad to have the test as part of my records.
I asked Dr. Page if anyone ever has stem cells that do not develop and he said it was a possibility. He feels we have gotten a minimal response from the stem cells and that will probably be all we get because he said with me being a year out from the transplant, he does not feel they are going to respond any better. He has told me before that each time I get blood and platelets (over a long period of time) they do me less and less good. I asked him if my stem cells were not going to work, when would we know that and what then? He said the platelets will be the best gage and when they are between five and ten and a transplant does not move that number then we will know. I asked him what then, would I continue to get transfusions? He said yes but we will deal with that when it happens. At this time, they have nothing else to offer.
The last two times I have received transfusions have resulted in me itching all over at dialysis the next day. I asked Dr. Page if this was just a coincidence and he said it was more likely that my system is building antibodies against receiving so many transplants. As I receive more of each, my body will fight the intruder with antibodies. It is just my body trying to control the situation and it is unable to do so. It is trying its best but my maladies are just too strong for it to deal with. Too much being thrown at it over these last six years.
Thursday, February 9, 2006
OK so much for “not so bad” numbers. I went in Wednesday after dialysis to have blood taken and see what was happening. The platelets were 7 and that is the lowest they have ever been. The hemoglobin was 8.00 and I have been warned that it must stay at 9.0 or above and the white blood cell count was 2.2 even though I had given myself 4 shots of Neupogen. I am now giving myself 4 more shots to try and bring the wbc up. I went in today and received 2 units of packed red blood cells and 10 units of platelets.
I have long fingernails and tonight when I blew my nose (sorry, I know that is not what a lady talks about but you all have been through a lot with me) I accidentally scratched my nose. It bled and bled and I finally stopped it with extreme pressure. It is all right now and I certainly learned a lesson…be a bit more gentle. The whole time it was bleeding, I kept thinking to myself…oh, dear I just got that blood today.
So, obviously the stem cells are still just hanging around and not earning their keep.
I have long fingernails and tonight when I blew my nose (sorry, I know that is not what a lady talks about but you all have been through a lot with me) I accidentally scratched my nose. It bled and bled and I finally stopped it with extreme pressure. It is all right now and I certainly learned a lesson…be a bit more gentle. The whole time it was bleeding, I kept thinking to myself…oh, dear I just got that blood today.
So, obviously the stem cells are still just hanging around and not earning their keep.
Thursday, February 2, 2006
At least dialysis was not quite as eventful yesterday as Monday. Made it almost to the end and the cramping started again in the legs, feet and hands. The physician’s
assistant was there and she, the head nurse and my tech discussed my situation. Starting tomorrow, they are keeping me on the machine for an extra 15 minutes. Instead of three hours, it will be three hours and 15 minutes. They feel the extra time will allow the machine to remove the toxins and fluids a bit slower and not put such a strain on my heart and system. Most of the people there are on for four hours but that can depend on your size. I am small and can be on for a shorter period of time but since my heart and blood pressure are reacting so violently, they want to try me on for another 15 minutes. If it will make things easier, I guess the extra time is worth it.
I must say I do get a great deal of things done while at dialysis. Many of the people just sleep but I cannot do that because I feel I am wasting my time if I do not accomplish something each day. Tomorrow I will complete my December and January time sheets for volunteer hours for Master Gardeners and then do my nails. Now I did not say I try to do anything that is earth shaking because remember I am limited to what I can do sitting in that chair. I read, do crossword puzzles, watch TV, listen to my CD player, do my grocery list, talk on my cell phone, plan what I will do after dialysis and anything else I can do under those restrictive conditions. Sometimes my plans are put on hold until I can gain my strength back from the dialysis but I always have my list ready.
assistant was there and she, the head nurse and my tech discussed my situation. Starting tomorrow, they are keeping me on the machine for an extra 15 minutes. Instead of three hours, it will be three hours and 15 minutes. They feel the extra time will allow the machine to remove the toxins and fluids a bit slower and not put such a strain on my heart and system. Most of the people there are on for four hours but that can depend on your size. I am small and can be on for a shorter period of time but since my heart and blood pressure are reacting so violently, they want to try me on for another 15 minutes. If it will make things easier, I guess the extra time is worth it.
I must say I do get a great deal of things done while at dialysis. Many of the people just sleep but I cannot do that because I feel I am wasting my time if I do not accomplish something each day. Tomorrow I will complete my December and January time sheets for volunteer hours for Master Gardeners and then do my nails. Now I did not say I try to do anything that is earth shaking because remember I am limited to what I can do sitting in that chair. I read, do crossword puzzles, watch TV, listen to my CD player, do my grocery list, talk on my cell phone, plan what I will do after dialysis and anything else I can do under those restrictive conditions. Sometimes my plans are put on hold until I can gain my strength back from the dialysis but I always have my list ready.
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