Saturday, February 1, 2020
Thursday afternoon I received a call from my oncology office. I was concerned they were calling to tell me to stay away from people. I am already taking two magnesium pills every day because I drink so much milk; I cannot imagine they want me to take three (I will if they tell me to). It turned out neither option was the reason for the call. My hemoglobin has been dropping one-tenth of a point each week for the past few weeks. The office was calling to advise me to get a blood transfusion.
I asked the woman who called, Jordan, what my number was, and she told me 7.9. I just said no to blood. I feel fine so my level is not low enough for me to accept the risk of a blood transfusion. After my reaction to my last transfusion, I am sure I have even more antibodies and it will be even harder to match me. Yes, a blood transfusion may be a good idea, but not for me. I have developed blood antibodies twice for sure and possibly a third time (I will not know for sure until I get my next blood type-match test for a transfusion).
I may very likely need a blood transfusion by the time I finish cycle eight in June (I start cycle four on Friday). I think my number of blood transfusions are limited until I develop so many antibodies my body will be unable to accept blood. I do not want to die because I cannot process blood. When the flesh eating disease was trying to kill me, I was in the five to six range for almost a year, even with regular transfusions. I do not plan to let my number fall into the five range, but it will need to drop below seven before I agree.
I feel for Jordan. I was very polite when I said no; however, she is simply trying to do her job and she needs to report I was an uncooperative patient. I think uncooperative patient and patient refused are offensive terms to use to when someone chooses not to heed a medical professional’s advice. Every time I am admitted to the hospital, my Synthroid is scheduled for the morning and my night medications are scheduled for 6:00 p.m.
I have taken my Synthroid as part of my night meds for more than twenty years, yet each hospital stay I need to “refuse” the morning pill until the pharmacy changes the schedule to nighttime (which usually takes a couple of days). Apparently, most people take Synthroid in the morning because it may cause sleeplessness. I am not most people. I also need to “refuse” my 6:00 p.m. meds until they are rescheduled at 9:00 p.m. The pills are given to me at my preferred time and not sent back to the pharmacy; however, I feel I am being punished for insisting the hospital conform to my home schedule as much as possible.
The hospital also wants to give a few “preventative” meds such as blood thinners and stool softeners to everyone. The blood thinners are given as an attempt to cut down hospital heart attacks and I do not have any criteria that would indicate a heart attack risk, so unless my doctor specifically says I need a blood thinner (such as after surgery), I decline. I do not know why they try to give everybody stool softeners (perhaps working to pass bowel matter might give you a heart attack).
I will be explaining my rationale for declining a blood transfusion to Candice the P.A. when I see her next week and will listen to her thoughts. Candice the P.A. may present a rationale that will sway my thoughts; she may agree with me. Either way, I will be making my concerns heard.
My piece of advice to you is to take back control of your health. When you do not understand or feel a procedure may not be necessary, ask questions until you are comfortable with your decision. Do not let your doctor out of your room until you are satisfied. The five to ten minutes scheduled to talk to you may not be enough, so be a “difficult” patient and demand your medical rights. You doctor wants what is best for you too; give them the time to explain their rationale.
Until next time,
Susanne
Please check out my GoFundMe page.
Thursday afternoon I received a call from my oncology office. I was concerned they were calling to tell me to stay away from people. I am already taking two magnesium pills every day because I drink so much milk; I cannot imagine they want me to take three (I will if they tell me to). It turned out neither option was the reason for the call. My hemoglobin has been dropping one-tenth of a point each week for the past few weeks. The office was calling to advise me to get a blood transfusion.
I asked the woman who called, Jordan, what my number was, and she told me 7.9. I just said no to blood. I feel fine so my level is not low enough for me to accept the risk of a blood transfusion. After my reaction to my last transfusion, I am sure I have even more antibodies and it will be even harder to match me. Yes, a blood transfusion may be a good idea, but not for me. I have developed blood antibodies twice for sure and possibly a third time (I will not know for sure until I get my next blood type-match test for a transfusion).
I may very likely need a blood transfusion by the time I finish cycle eight in June (I start cycle four on Friday). I think my number of blood transfusions are limited until I develop so many antibodies my body will be unable to accept blood. I do not want to die because I cannot process blood. When the flesh eating disease was trying to kill me, I was in the five to six range for almost a year, even with regular transfusions. I do not plan to let my number fall into the five range, but it will need to drop below seven before I agree.
I feel for Jordan. I was very polite when I said no; however, she is simply trying to do her job and she needs to report I was an uncooperative patient. I think uncooperative patient and patient refused are offensive terms to use to when someone chooses not to heed a medical professional’s advice. Every time I am admitted to the hospital, my Synthroid is scheduled for the morning and my night medications are scheduled for 6:00 p.m.
I have taken my Synthroid as part of my night meds for more than twenty years, yet each hospital stay I need to “refuse” the morning pill until the pharmacy changes the schedule to nighttime (which usually takes a couple of days). Apparently, most people take Synthroid in the morning because it may cause sleeplessness. I am not most people. I also need to “refuse” my 6:00 p.m. meds until they are rescheduled at 9:00 p.m. The pills are given to me at my preferred time and not sent back to the pharmacy; however, I feel I am being punished for insisting the hospital conform to my home schedule as much as possible.
The hospital also wants to give a few “preventative” meds such as blood thinners and stool softeners to everyone. The blood thinners are given as an attempt to cut down hospital heart attacks and I do not have any criteria that would indicate a heart attack risk, so unless my doctor specifically says I need a blood thinner (such as after surgery), I decline. I do not know why they try to give everybody stool softeners (perhaps working to pass bowel matter might give you a heart attack).
I will be explaining my rationale for declining a blood transfusion to Candice the P.A. when I see her next week and will listen to her thoughts. Candice the P.A. may present a rationale that will sway my thoughts; she may agree with me. Either way, I will be making my concerns heard.
My piece of advice to you is to take back control of your health. When you do not understand or feel a procedure may not be necessary, ask questions until you are comfortable with your decision. Do not let your doctor out of your room until you are satisfied. The five to ten minutes scheduled to talk to you may not be enough, so be a “difficult” patient and demand your medical rights. You doctor wants what is best for you too; give them the time to explain their rationale.
Until next time,
Susanne
Please check out my GoFundMe page.