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.