Monday, June 25, 2012

Appointment Anxiety

My follow-up appointment is just 2 days away. I'm getting so nervous; it’s like I fear I am going to go in and he is going to say my kidney function has drastically declined. It’s very unlikely though, so I don't know why I am always so nervous before appointments. I actually feel like I'm doing a lot better here recently. My OB-Gyn was also more optimistic about getting pregnant again when I saw him for my yearly check-up. He was very impressed my protein was negative; he didn’t expect my kidneys to recover so fast. So I don't know why I am so nervous. Maybe it’s because I'm scared he is going to tell me I need to take prednisone or some other horrible med. Again, it’s not likely. I'm expecting that I will either hear that I have some improvement, or none at all, but I doubt that I would hear that I have had a decline. 

The reasons I think I have improved are mostly due to that fact that at my last spot-check for protein the test came back negative and this was in April. What that basically means is that after Malakai was born due to high levels of protein and sudden onset of pre-eclampsia, the doctors at UAB did not think I would recover this quickly (or at all) and had told me it would be unsafe to try again(due to the sudden decline in function). Since the protein has gone back to negative meaning there is none in my urine, my kidneys can start to recover from their loss of function. I hope that I see recovery when I get my results back. I know I have friends praying for a complete recovery, and that would be an amazing answer to prayer.

I've been going over some of the questions I want to ask him in my mind:

What are more specific signs of protein in my urine? My kidney support girls and I have been discussing this one a lot. We know that bubbles mean there is protein in our urine, but when I googled it, I read that it’s normally foamy and looks a lot like a draft beer, so just a few bubbles is normal, but that really doesn’t help me much.

What creatine levels or GFR would alert us to needing to prepare for dialysis or transplant?
My baseline of function hangs out around 40 GFR and 1.8 creatine, but after Malakai it dropped to under 30 GFR and over 2.2    creatine. I also want to know the answer to this question because it’s been a topic with my kidney girls.

What could we do to lower the anti-bodies if we decide to try and get pregnant again? In my last two pregnancies (neither went full-term); I took prednisone to lower the anti-bodies that fight my pregnancies. The prednisone increases blood pressure and since I already have high blood pressure it made controlling my blood pressure harder and I developed pre-eclampsia before I was in my third trimester. I have been reading a book, Is your body baby friendly, by Dr. Alan Beer relating to auto- immune diseases such as APS and Lupus (I have both) and it’s been very informative. We have been so close to having the right treatment during pregnancy but missing little pieces of the puzzle to make it more successful. Dr. Beer suggests using a treatment called IVIG if prednisone does not help. It seems to be a pretty simple and symptom free treatment. It’s very expensive, but hopefully my insurance would cover it. I called last week to have him look into it to see if it would be an option. I’m sure he has since he is on board with us trying again.

Are my current medicines safe for pregnancy? The medicines that I am currently taking to control my blood pressure are doing an absolute fantastic job, not to mention I am feeling somewhat normal only having to take them once a day and its only 2 small pills. They were prescribed by the MFM at UAB after I delivered Malakai and had planned to pump breast milk. Since they said its safe when pumping I would also think they would be safe during pregnancy, but I need to be positive.

Would you recommend I see a Reproductive Immunologist? If he still supports us trying to have a baby again, and he thinks the IVIG treatments would not harm my kidneys I think it would be a good idea to have a Reproductive Immunologist give us a detailed treatment plan for the next pregnancy. There are only 3 well known and highly respected reproductive immunologists in the US and they are all out of state. Sounds like a good reason to take a vacation to me.

Can you think of anything I should ask?

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