The title is somewhat to my islets and some for me. Things have been confusing and scary lately.
Last week, after my experiences with the pump and high blood sugars, I emailed Dr. Bellin about this problem. She had me go back onto the Rapamune, increased the Prograf and ordered a C-peptide test to check on the health of my islets.
The very good news is that my C-peptide results showed that my islets are still functioning. My fasting C-peptide was 0.87 and stimulated C-peptide was 1.49. This compares to the values from July which were 0.14 and 1.59.
So, that leaves the decision as to what to do about the stress to my kidneys. Now, I'm back on full strength of all three immunosuppressants. And about the time that I went back on the Rapamune, I developed some severe stomach problems. I am also running an occasional low grade fever for no apparent reason. Between those two things, I am feeling very run down.
My BGs have been getting better. I'm not back where I was, but am getting closer to that. I'm increasing my basal rates untilI get them to where I need to be.
I saw my nephrologist yesterday. This appt was moved ahead in response to my elevated creatinine levels. I had done my pre-visit testing and those results were about the same as before with my creatinine still at 2.0. After I told the doctor about my drug transition, she wanted to see how my creatinine was at the moment and ordered some testing to be done during my visit. That creatinine was 2.5. And my BUN was elevated as well. Both are kidney function tests. She decided to take me off of several of the drugs that I was currently taking. The lisinopril and lasix would be replaced by a different blood pressure medicine. Most of my over the counter supplements are on hold and I'm to take one more potassium lowering treatment and then be done with that. She seemed alarmed by these results which worried me. Until this point, she didn't seem overly concerned by my creatinine levels.
I am to have my creatinine and kidney function tests rechecked tomorrow and again on Monday and then I see her again on Thursday. I'm also being tested for CMV and EBV because of my fever and fatigue.
I had the nephrologist fax these results to Dr. Bellin. She decided to again start to wean me off of the Rapamune. When I hold my nephrologist about this plan initially, she was surprised. She believes that its the Prograf that is stressing my kidneys. When I relayed this to Dr. Bellin, she agreed, but said that the Prograff/Rapamune combo was worse than the Prograf/Myfortic combo and was worth a try because taking me off of Prograff was extremely risky for my islets. She says it might still come to that, but is worth trying this way first.
So, I am again waiting and hoping for this all to work out. I feel better than I did last week knowing that I still have islets that are working. I'm just hoping that this is going to be a rough chapter of my story. I just need to stay strong.
Last week, after my experiences with the pump and high blood sugars, I emailed Dr. Bellin about this problem. She had me go back onto the Rapamune, increased the Prograf and ordered a C-peptide test to check on the health of my islets.
The very good news is that my C-peptide results showed that my islets are still functioning. My fasting C-peptide was 0.87 and stimulated C-peptide was 1.49. This compares to the values from July which were 0.14 and 1.59.
So, that leaves the decision as to what to do about the stress to my kidneys. Now, I'm back on full strength of all three immunosuppressants. And about the time that I went back on the Rapamune, I developed some severe stomach problems. I am also running an occasional low grade fever for no apparent reason. Between those two things, I am feeling very run down.
My BGs have been getting better. I'm not back where I was, but am getting closer to that. I'm increasing my basal rates untilI get them to where I need to be.
I saw my nephrologist yesterday. This appt was moved ahead in response to my elevated creatinine levels. I had done my pre-visit testing and those results were about the same as before with my creatinine still at 2.0. After I told the doctor about my drug transition, she wanted to see how my creatinine was at the moment and ordered some testing to be done during my visit. That creatinine was 2.5. And my BUN was elevated as well. Both are kidney function tests. She decided to take me off of several of the drugs that I was currently taking. The lisinopril and lasix would be replaced by a different blood pressure medicine. Most of my over the counter supplements are on hold and I'm to take one more potassium lowering treatment and then be done with that. She seemed alarmed by these results which worried me. Until this point, she didn't seem overly concerned by my creatinine levels.
I am to have my creatinine and kidney function tests rechecked tomorrow and again on Monday and then I see her again on Thursday. I'm also being tested for CMV and EBV because of my fever and fatigue.
I had the nephrologist fax these results to Dr. Bellin. She decided to again start to wean me off of the Rapamune. When I hold my nephrologist about this plan initially, she was surprised. She believes that its the Prograf that is stressing my kidneys. When I relayed this to Dr. Bellin, she agreed, but said that the Prograff/Rapamune combo was worse than the Prograf/Myfortic combo and was worth a try because taking me off of Prograff was extremely risky for my islets. She says it might still come to that, but is worth trying this way first.
4 comments:
Stay strong! ((hugs)) Being the pioneer is rough sometimes.
Hold fast, Kathy! You can do this!
Oh Kathy, what a stressful road you're traveling.
I will keep you in my thoughts and trust that this is just a temporary adjustment that can be handled with patience.
I hope things are going much better this week, and I'll keep you in my thoughts.
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