I received platelets yesterday because they had dropped to 9 but I did not get blood because my hemoglobin was 12.7, highest it has been in a very long time.
The wheels are grinding toward getting the medication I need, Exjade, for my iron overload. Dr. Page’s office has done the paperwork and it is in the hands of the pharmaceutical company. They are working to have my insurance company accept the prescription. A company rep called today and said they were working on it and should know in a week and would contact me.
I must say I always thought Popeye got extra strength from the iron in spinach. Excessive iron has not given me that boost in energy and I am very tired most of the time. I have great difficulty sleeping but that is not really a new thing because I had problems with this for a long period of time. Many nights consist of three or four hours of sleep but I do have to rest during the day because of the fatigue. Often I take advantage of the “down time” during dialysis and while in Endoscopy at the hospital for transfusions. So, I guess I get catnaps during the day.
Thursday, March 16, 2006
I keep hoping I will be able to post good news but that does not seem to be the norm for me. I got my numbers from the dialysis center and the news was not good. They take blood for simple testing each Wednesday but once a month they do a complete workup for a better picture of what is going on with each patient. The numbers included my ferritin numbers (iron) and they are very high.
When I was at Dr. Fenves’ office earlier this month, he mentioned that my iron numbers need to be closely monitored because when you are given so much blood over a period of time, the iron collects and is not eliminated in amounts that are needed. During my appointment with Dr. Page yesterday, he mentioned the high ferritin numbers (iron). My numbers are 2,565 and normal is 10-291 and my ferritin sat (calc) is 77% and normal is 20%-55%. Ferritin is an iron compound formed in the intestine and stored in the liver, spleen and bone marrow for eventual incorporation into hemoglobin. I am not able to eliminate the excess amount and this will lead to problems with my heart and liver. My liver has been fine so far but this could change because of the excess iron. My heart is not in the best of shape and this will put more stress on it. Until now, there has been nothing that can be done for this situation but a new drug has been approved and has been on the market for only a few months. Dr. Page wants me to check with my nephrologist to see if a dialysis patient can tolerate it. He has checked and thinks it can be given to me. It is very expensive and (if I can take it) we will have to get approval from our insurance company. I cannot complain about our insurance company because they have been so very wonderful in assuring that I get the best of care. The drug is called Exjade and I will check on it with the nephrologist at the dialysis center tomorrow.
Dr. Page and I have talked about the fact that eventually my body will receive little or no benefit from the blood and platelet transfusions. I asked him what would be done at that point because I want to have the information when that time comes. He said I will continue to receive the transfusions and an example of what will happen will be that my count would be 8. and after transfusion it would only go to 8.5. But at this time, there is nothing else to be done for me. When it gets to that point, they will still continue to transfuse until the end. I have been asked what that time frame is and no one knows. My situation is so unique that every day is a learning experience for my doctors and for me. We just take it a day at a time and hope for the best. Thank you for your support and I hope this blog can be of help to someone when they are facing tremendous odds. Even in the darkest of times, there are good things that happen to each of us. I have many things to be thankful for and continue to hope that what they find from my situation will help others.
Well off to the hospital for two units of blood. My hemoglobin was 9.9 yesterday and my nephrologist wants it to stay above 10…almost made it. My platelets are 12 and that is very low but they are not going to transfuse me with platelets this week.
When I was at Dr. Fenves’ office earlier this month, he mentioned that my iron numbers need to be closely monitored because when you are given so much blood over a period of time, the iron collects and is not eliminated in amounts that are needed. During my appointment with Dr. Page yesterday, he mentioned the high ferritin numbers (iron). My numbers are 2,565 and normal is 10-291 and my ferritin sat (calc) is 77% and normal is 20%-55%. Ferritin is an iron compound formed in the intestine and stored in the liver, spleen and bone marrow for eventual incorporation into hemoglobin. I am not able to eliminate the excess amount and this will lead to problems with my heart and liver. My liver has been fine so far but this could change because of the excess iron. My heart is not in the best of shape and this will put more stress on it. Until now, there has been nothing that can be done for this situation but a new drug has been approved and has been on the market for only a few months. Dr. Page wants me to check with my nephrologist to see if a dialysis patient can tolerate it. He has checked and thinks it can be given to me. It is very expensive and (if I can take it) we will have to get approval from our insurance company. I cannot complain about our insurance company because they have been so very wonderful in assuring that I get the best of care. The drug is called Exjade and I will check on it with the nephrologist at the dialysis center tomorrow.
Dr. Page and I have talked about the fact that eventually my body will receive little or no benefit from the blood and platelet transfusions. I asked him what would be done at that point because I want to have the information when that time comes. He said I will continue to receive the transfusions and an example of what will happen will be that my count would be 8. and after transfusion it would only go to 8.5. But at this time, there is nothing else to be done for me. When it gets to that point, they will still continue to transfuse until the end. I have been asked what that time frame is and no one knows. My situation is so unique that every day is a learning experience for my doctors and for me. We just take it a day at a time and hope for the best. Thank you for your support and I hope this blog can be of help to someone when they are facing tremendous odds. Even in the darkest of times, there are good things that happen to each of us. I have many things to be thankful for and continue to hope that what they find from my situation will help others.
Well off to the hospital for two units of blood. My hemoglobin was 9.9 yesterday and my nephrologist wants it to stay above 10…almost made it. My platelets are 12 and that is very low but they are not going to transfuse me with platelets this week.
Thursday, March 9, 2006
The headaches are gone and I did not go to the doctor about them. I got to feeling better and decided not to rock-the-boat. If they occur again, I will go then and be tested to see what it might be. I am hoping it was just one of those things that occasionally happens to everyone and there is really no real problem.
Dr. Shorie, the nephrologist at the dialysis center, made rounds on Monday and talked to me about the itching that I experience. He said it is usually a sign that the body is building antibodies against the blood and platelets that are received over a long period of time. Dr. Page had told me this and there is nothing that can be done about it. Dr. Shorie has upped the Epogen injections to 50,000 units at each dialysis session to try and make the red blood cells more active and help with my fatigue. It had been at 45,000 units, which was considered very high, but now the amount is higher. I said I thought the 45,000 units was the max and they said the 50,000 is very, very high but he wanted to try and see if the higher number would be of any help. He now wants the hemoglobin to remain above 10.0 because even the 9.0 he has suggested a couple of weeks ago is not high enough to keep my heart from working so very hard.
My hemoglobin was 10.7 and my platelets were 17,000 and I did not have to have transfusions this week. Enjoyed that fact because it is nice to have a day once in awhile that does not involve anything medical.
Dr. Shorie, the nephrologist at the dialysis center, made rounds on Monday and talked to me about the itching that I experience. He said it is usually a sign that the body is building antibodies against the blood and platelets that are received over a long period of time. Dr. Page had told me this and there is nothing that can be done about it. Dr. Shorie has upped the Epogen injections to 50,000 units at each dialysis session to try and make the red blood cells more active and help with my fatigue. It had been at 45,000 units, which was considered very high, but now the amount is higher. I said I thought the 45,000 units was the max and they said the 50,000 is very, very high but he wanted to try and see if the higher number would be of any help. He now wants the hemoglobin to remain above 10.0 because even the 9.0 he has suggested a couple of weeks ago is not high enough to keep my heart from working so very hard.
My hemoglobin was 10.7 and my platelets were 17,000 and I did not have to have transfusions this week. Enjoyed that fact because it is nice to have a day once in awhile that does not involve anything medical.
Sunday, March 5, 2006
Dialysis has been about the same and I had blood and platelets on Thursday. Never one to enjoy the status quo, the new thing has been a dreadful headache located on the right side of my head. Take your hand with your fingers spread out and place it over your right ear then think of an imaginary line on the top of your head, this is the area that is affected. I do not think it is a sinus headache because I have had those and it does not feel the same. The left side does not hurt nor does the back of my neck. It is a dull ache but about every 30 seconds a sharp shooting pain goes through that side. It makes me blink and sometimes give off a quite almost silent moan. It is hard not to fear the worse but I am hoping it is an inner ear infection or something simple. It has been a problem since last Wednesday but got worse Thursday evening and I planned to go to my primary care doctor, David Reeve, Friday after dialysis but it went away. It returned on Friday evening, always before the weekend, and has continued so I will go to Dr. Reeve on Monday.
I went to my Dallas nephrologist, Dr. Fenves, last week for an appointment and did get some good news. He is impressed with the way my catheter has preformed. He feels since it has been in for a year that it will perform well for some time to come. He feels with the care the dialysis center has given it and with me keeping it so very clean, the chances of infection are remote. He realizes it must keep performing because of the danger of having to install another one could present problems because of my low platelet count. Even minor surgeries would be major problems for me because of my blood not having the capacity to coagulate. He also does not want to give up on my stem cells and says they could still begin to work. He is so very kind and calls me his miracle lady and always brings an associate into the room for my visits. He tells them of my initial disease (the Waldenstrom) and how very rare it is then on top of that, I have another rare disease (Amyloidosis) and how extremely rare it is to have both. It does not bother me because I keep hoping that one of these young doctors may be the one who finds the reason and cure for my maladies.
I went to my Dallas nephrologist, Dr. Fenves, last week for an appointment and did get some good news. He is impressed with the way my catheter has preformed. He feels since it has been in for a year that it will perform well for some time to come. He feels with the care the dialysis center has given it and with me keeping it so very clean, the chances of infection are remote. He realizes it must keep performing because of the danger of having to install another one could present problems because of my low platelet count. Even minor surgeries would be major problems for me because of my blood not having the capacity to coagulate. He also does not want to give up on my stem cells and says they could still begin to work. He is so very kind and calls me his miracle lady and always brings an associate into the room for my visits. He tells them of my initial disease (the Waldenstrom) and how very rare it is then on top of that, I have another rare disease (Amyloidosis) and how extremely rare it is to have both. It does not bother me because I keep hoping that one of these young doctors may be the one who finds the reason and cure for my maladies.
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