Healing Heart

Today marks eight months since Malakai passed away. Today, I look back at the journey that has brought Matt and me to this place and I am so thankful that we have had each other to support and encourage each other through this process. My heart was so hurt, disappointed, discouraged, I could go on and describe the emotions. I wasn’t sure that my kidneys would improve and return to their normal function and that was so scary. I wasn’t sure that we would ever be able to try again. I really wasn’t even sure if we would ever get to be parents to a baby at all. After we went back to UAB to talk about trying again they threw a ton of numbers at us, it was so discouraging. I really felt like the only doctor that was willing to help us was my kidney specialist. He was positive through the whole situation. At my appointment on Wednesday he talked with me about trying again, about what the doctors at UAB said, and about my heart.

He said that he has been impressed with how we have dealt with Malakai’s death, and we have handled it very well. If we can handle the possibility of another baby not making it, if our hearts can go through it one more time, he doesn’t see any reason why we should not try again. He said my heart took the most damage and everything else will heal, but could my heart heal again?

Honestly, what made Malakai’s death so much more bearable is that I know that he is in Heaven, and there’s no better place he could be. God is now parenting him, and I will see him again. There is no way that I would ever want him to come back to me and leave heaven. He is healed, his lungs work perfectly, and he is whole there. The pain of losing a child to the arms of God is much less painful than a failed adoption. I know that in heaven he is perfectly whole, but when the opportunity to adopt a baby fails, there is no reassurance that the mom of that baby is going to be able to provide a loving and healthy home for that little one.   We are going to complete our home study for adoption, but we will not be actively pursuing that option at this time.  

The Test Results

The test results came back showing improvement! It’s not a lot of improvement, but it’s enough to let me know that the damage is reversible. My protein is drastically down from last time and it’s so low that the protein dip sticks cannot pick it up. My creatine has also improved, decreasing from 2.3 down to 2.09. My antibodies were very high, so he wants me to see a rheumatologist to see if there are any treatments to lower this number so that when we try again we can manage the antibodies better. I’ve also lost over 15 pounds since the last time I saw him. I’m hoping for total recovery within the next year. I’ll see him again in 4 months and pray for more recovery, eat healthy, and exercise until then.

Gadget Girl

I’m so excited about the package that was on the front porch when I got home from grocery shopping today. Inside was a new kitchen gadget. Some people love shoes and have tons of them, I happen to love kitchen gadgets. My little gadget is a new grain mill. I have been trying to go gluten free since it helps auto-immune disorders, but I have read some research that suggest our bodies are able to process the gluten if its first soaked. Think along the lines of sour dough bread, but I won’t bore you with details. Just believe me when I say that there is not a slice of gluten free bread out there that tastes better than cardboard. Since I already make my bread, I figured why not add another step to the process. Now I have to find a home for my new little gadget in my already small kitchen. Matt did put shelves up in the laundry room and they are already full of other gadgets, I guess he may have to put up a few more. Here’s a picture of one wall in the laundry room and it’s full of my vintage Pyrex. 

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? http://www.kidney.org/atoz/content/gfr.cfm
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?