The appointment was yesterday. I think part of me expected to walk in there and have him say "I'm sorry, but you need to forget about having kids for now". That did not happen. He was actually surprised when I told him the high risk OB said we needed to wait. From his point of view, creatinine is the be all and end all, but he agreed to talk with her and explain my disease more thoroughly so she could decide what the risks were and what the cutoff for protein loss is and present it to me before we choose a course of action. I'm currently awaiting her call. Chances are I will have to cancel this IUI, too, so there go my July baby hopes.
He did say he thinks my protein numbers were off. He says it's more likely that they're in the 4000s instead of 5000s. I don't know how it's possible but I trust him. I have no or very little edema and my serum albumin is normal. Low-normal, but normal. I thought a bit more about my last post and I guess my worst fear didn't actually come true because my creatinine didn't go up. He actually explained that when it had gone up to 1.2 I was on the blood pressure meds which can make it go up artificially. That said, when I first came to him my creatinine was around 1, and it still is, and it's been a year and a half. He said he thought that I was worrying that my creatinine would go up if we took 6 months off of TTC to do treatments (he was spot on). He doesn't think that's going to happen. He couldn't guarantee it, but he seemed very confident that 6 months is not going to bring me to a creatinine level where it's unsafe to conceive. All of this said, our options are now 2 not 4:
- Try to have a baby right now.
- Take 6 months off and do the Cellcept treatment
If the high risk OB says it's ok after talking to the nephrologist, we will go with number 1. If not, we will wait 6 months and do the Cellcept. I don't want to wait, so I guess it depends If she comes to me and says there's a 50% chance your baby will be born at 28 weeks or earlier, we can't take that risk. I don't want to get 5 years down the road and see my child with developmental delays or health problems and know it was my fault because I was impatient. I have to be responsible and do what's going to be best for both of us, so I'm very anxiously awaiting her call.
I don't really want to do the Cellcept treatment. It's similar to the prednisone I did, meaning I have to go to the infusion center and get IVs. My immune system will be completely compromised so it will be tough to even go out during the fall, and I may have to work from home. There is an up side, however. I've been doing weight watchers and I'm losing some weight. If I could lose 50 pounds that would be a great help. It would make the chance of a healthy pregnancy even higher, and the chance of GD lower. It would help my sugars in general since they've been climbing a bit. It'll help my blood pressure, too. Plus we could save some money which is something we desperately need to do. We'd be able to pay off all of my credit cards and some of Andy's. Plus Andy would have had time for his vitamins and things to work and for his sperm to get as close to normal as possible. I'm trying to see the up side. I want a baby, but I want a healthy baby, and I have 2 Johns Hopkins specialists working on my treatment plan and care, and I know that whatever we come up with will be the best thing for me.
I'm still praying every night about it but it hasn't gotten easier to deal with the fact that I have this problem or that I'm not pregnant. I want this child so bad, and I know that in the scheme of things, if I do have to take 6 months off, it's not a long time. But I can't help how I feel and how much I want this. I keep trying to trust God's timing and I know that if I have to wait that he needs it that way.
These decisions are never easy. I told myself I woudn't do another treatment until I had a child, but if she calls me and tells me the risks are really high, I just cant justify my selfishness. I will need some treatment either way, whether it be now or after we have a baby, and it's pretty scary. Cellcept is not a drug to mess around with and part of me is terrified that it won't work. Because if it doesn't there's really nothing left. The steroids were helping but he doesn't want to keep me on them forever. I suppose I could stay on Cellcept forever... transplant recipients do, but that's if it works in the first place. He did say that the fact that I responded to the steroids is a good indicator that I should respond to this. It wasn't a complete response, but it was something, so I'm hopeful.
Right now I'm just trying to live each day. I'm so scared things won't work and my kidneys will decline, and I'm scared of my dream of a child not coming true. But being scared isn't helping and I need to live my life. So I'm trying. I figured I'd give myself through this weekend to mope and sit on my butt watching movies, but then I need to pick myself up. I have been facing a lot of adversity today, but my point about this baby thing has been that I don't want to give up my dreams. The same goes for my other dreams of being happy and doing what I love. It's really hard sometimes, but new treatments are being discovered every day, and all I can do is hope that one of them works for me, and pursue my interests in the mean time. I'm still confident that I will have a baby of my own, whether it be 9 or 15 months from now. And my kidneys.. well, we're just going to have to figure out a way to fix them. And I have the best doctor in the world for that.