Friday, August 20, 2010

Ahhh, sweet relief. I finally have a (long, complicated) plan! My doctor wants to start me on prednisone again. He actually thinks it will work better than Cellcept which I'm OK with! Here is the regimen:

120mg every other day for 2 months
100mg every other day for 2 weeks
80mg every other day for 2 weeks
60mg every other day for 2 weeks
40mg every other day for 2.5 months

That's 6 months total, and then we'd taper a bit from 40. I will be doing 24 hour urine tests each month, and they said that in 4 months we can start trying to conceive again. We've decided to move straight to IVF because we want to have the best chance of achieving a pregnancy while my protein is ok. I called my RE to let them know. They want a written copy of our plan and then a letter from the high risk OB when it's ok to start IVF. There is so much going into this and just the paperwork takes a lot of time. I'm nervous because the RE won't help unless she gets the OK... and I'm so nervous I won't get that. I know the prednisone worked last time to a point the OB was OK with and she sent the OK letter. I want to get started so I can see changes occurring. I want to know if it works again. I mean in theory it should. It was only 6 months ago that my protein was 1700 because of prednisone. And I know I did the 3grams over 3 days protocol, but I'm wondering if, because my maintenance dose is 120mg instead of 35, this will be more effective. I need to stop worrying.. I'll find out. I have a few things to do before we start though. I have to do the 24 hour urine baseline and bloodwork next weekend and I have to see the endocrinologist... because I need INSULIN. Yes, prednisone makes your blood sugar go out of control, and the endo said that because I'm on such a high dose, she doesn't think a pill would help. So I have to see her and learn how to use the insulin pen before I can start. I'm hoping to do that next week so we can start sometime the 1st week of September but it will probably be the second.

I'm not psyched about checking my blood sugar 100 times a day and giving myself insulin shots, but it will force me to watch what I eat which I need to do to lose the 20 pounds for IVF. Also exercise helps sugar levels so I will have to do that too. I just keep telling myself it's only for 6 months. And it will be worth it if it works. I did gain weight on prednisone before but I have to lose it now. I'll just have to be extremely careful since I stopped watching what I ate after the wedding last time and that was probably most of it.

I also found a cholesterol medication I can take while TTC, so hopefully I can get that prescribed and sleep a little easier that I will have at least SOMETHING working on my cholesterol for that time. I mean I don't want to be off meds for 2 years for this process. It's not a statin, so it probably won't work as well, but anything that helps is good, and it's high-risk OB approved. I just have to be sure I can take it while taking the insulin. If not, I'll have to take a statin for a few months and then when I'm off the insulin start the Welchol.

My life is a pile of pills and needles. But I like having a life... and I'd like to create another one.. so this is what has to be done. I'm coming to peace with it, I just want to get it over with and I want it to work!!

Wednesday, August 11, 2010

This song reminds me of my husband and I and our journey. I know it's weird that I'm interpreting "get on home to you" as getting pregnant, the "you" being our baby, but.. it is what it is. I love this song. I did remove the parts that didn't make sense.

Poco - Keep on Tryin'

I’ve been thinkin’ ’bout
All the times you told me
You’re so full of doubt
You just can’t let it be
But I know
If you keep comin’ back for more
Then I’ll keep on tryin’
Keep on tryin’

And I feel so satisfied when
I can see you smile
I want to confide in
All that is true, so I’ll
Keep on tryin’ I’m
Through with lyin’
Just like the sun above
I’ll come shinin, through
Oh yes I’ll
Keep on tryin’, I’m
Tired of cryin’
I got to find a way
To get on home to you
I'm having a really difficult time dealing with something. I posted an entire blog entry and saved it as a draft because I needed to get it out, but I was so scared that the person in question would find it that I didn't want to post it even though she doesn't read my blog. I hate that I have to feel this way and that I can't share it with anyone or I seem like a total jerk. This whole process is so hard and I wish the general population had an inkling as to what it felt like so I could say how I felt. I'm tired of having to keep my emotions in because they're "wrong".

This is in reference to pregnant friends and how I feel about 1 in particular. I hope when other friends get pregnant if I'm still unable to try or haven't yet conceived, they will handle it in a completely different way because I shouldn't have to deal with the way this person is handling it, and I shouldn't have to feel bad for disapproving.

Tuesday, August 10, 2010

We ended up missing this cycle. It wasn't on purpose, but the stars just didn't align for us. I have to wonder if it wasn't because it just wasn't supposed to work. To be honest I'm not even sure if I ovulated. I didn't take soy this cycle, and though I did get a +OPK on Friday, I haven't had O pain. What I did have was a spot of reddish-pink fresh blood when I got up on Saturday morning, and then pink-tinged CM lated that day. This has confused and scared me since that has never happened to me in my entire life. Not once. Ever. And it was on CD16, so there's no way it was AF coming or anything. My boobs are sore like crazy, but I'm so used to the bad O pain and I had only a 2-second twinge this month. I don't know what any of this means. Perhaps my TSH is too low now that I'm on the synthroid? I'm sure playing with my TSH can cause problems, but it has only been 2 weeks. I need to set something up with an OB soon. I'm due for a pap anyway and I'd like to ask some questions about the blood and stuff. I suppose the good news is that I haven't really had many other pains in the uterus area, so that may have been soy related. Dear God I just hope it's not another problem. I can only take so many.

Also, of my two pregnant coworkers, one is due in November and the other in February. I was excited thinking I could be pregnant before their babies are born. Now that's not going to happen. Even if the doctors ever get back to me (2 weeks tomorrow), and I start on the medication this month, I won't be off it until February. I'm so tired of getting let down. So. Freaking. Tired.

Friday, August 6, 2010

We have had a hell of a week. On top of all the kidney issues and uncertainty of where to go, one of Andy's best friends passed away Tuesday. It was an incredibly tragic situation, and they were close. He was in our wedding and we really cared about him. I don't understand why such horrible things happen to such amazing people as Josh. And I can't help but keep thinking about how he's never going to get to hold our kids. How they'll know Uncle Eric and Fran, etc, but not Josh. It's just not right.. it's not how it was supposed to be. Andy wants to make Josh the godfather on paper. I agree. And I keep getting these mental images of just hugging him again and telling him how much I care about him. Like when I go to Philly next he'll still be there. I dunno.. the world is a different place now.

I made a decision last night that we're going to try this month. I feel like I'm... "supposed" to. When I talked to my nephrologist he said he doen't think my protein loss is as bad as what the numbers say. And he really thinks the creatinine is a big deal. I know he's not an OB, but I feel like she needs to have more info from him. They were supposed to get together and talk so he could give here more info about my situation so she could decide what my risks were and call me. I feel like things might change some when he explains it. I don't know everything.. but he does. But no one has called me anyway. I know they're really busy but it's been 10 days. I don't think it's impatient of me to expect something by now. I kind of thought to myself "I'm spending this whole month waiting to find out what's happening. I don't have an official word back, and I'm tired of putting my life on hold".

 So I said to myself that if she didn't call me today we'd try. Things just seem to be lining up (which I will get to momentarily). I even helped out her cause by calling to remind her, but the office called back after getting my message and she's not in the office. She's downtown at Hopkins all week (3 floors from my nephrologist.. I hope she stops by!) and she won't see my message until Monday. I'll have already Od by the time I hear from her and I don't want to miss it in case she comes back and says "Well with all the new information I think maybe you should try now". I already cancelled the IUI, so I feel like if it DOES happen, it's because it's supposed to. So I don't feel like I'm putting my baby at risk if I do get pregnant. Not just because of wild suppositions, but because I know I have two amazing doctors to work with, and even if she does come back next week and say we probably shouldn't, we'll still have amazing care. She needs to hear that I don't have edema or a blood protein deficiency.. that the urinary protein is JUST urinary protein right now. So it might be a while different story since usually when you tell a doctor you are leaking protein it comes with low serum albumin and edema and that's probably what she thinks. And once I get the official word, we'll put TTC on hold to treat my kidneys if we have to. But also, people with diabetes and all sorts of problems that may never be "under control" get pregnant all the time. But I know for me that I'm working with people who know exactly what my situation is and how to monitor it if we do conceive. And if two weeks from now I call her and say "Well, I'm pregnant" and she says "I thought we cancelled the IUI" I will say "I did cancel the IUI, but while I was waiting to hear back from you about whether we would treat my kidneys or TTC right now, it happened" and we'll just have to do the best we can. I'm always going to be high risk because of my kidneys, and it's just a matter of weighing pros and cons. The fact is, I don't have solid info on the risks (after updated info from the nephrologist), and I DO want to have a child. My mom and husband agree that we should continue until a decision is made.

The other thing is that I got EWCM yesterday. On DAY 14!!! I usually O 3 days after I get EWCM the first time (I don't know why, but it's on like 4/5 charts or something). Which puts O at day 17? That's like.. almost normal!!!! Why, on a month when I was taking a break, would my body suddenly decide to be normal!? I have had 2 full weeks of the synthroid so maybe having high TSH really was doing something? I don't know, but it just seems like such a shame to waste.

I don't know if I'm being delusional or selfish or what, but this is our decision. I'm not wasting time unless I know for a fact I should be. After talking with the nephrologist and having him look at me funny when I said the OB was worried about the protein, I felt better. After hearing he thinks my protein loss is actually lower and my albumin was normal... you know, I knew she didn't know this stuff. So this whole thing is probably ridiculous because I'll probably get my period 13 days after O like I always do and then we can start treatment if they want... but maybe this really is supposed to be my month. It's the July cycle. It was supposed to be this month. Maybe it still can be. Maybe Josh has a little Andy picked out that he wants to send to us. Maybe he saw him waiting up there and thought he was the perfect baby for us.. his Godbaby. Maybe he told the little guy that he had a good friend that would love him more than anything. I like the thought that our little one got to meet his Uncle Josh... even if it's not on earth where it should be.

We miss you Josh. We're always thinking of you and missing you. And if our baby is up there with you, please give him a hug and send him on down. We're ready.

Tuesday, August 3, 2010

Well, my appointment time came and went. Tara, our nurse, called me to tell me how sorry she was when she got my message. I rambled because I was trying not to cry. My coworker is 13 weeks pregnant and announcing it Thursday. I'm so happy for her but it's SO HARD. When she got pregnant I figured we'd be pregnant before she gave birth. Now that's probably not going to happen. I do not expect the doctor to tell me I can go ahead and keep trying. So she'll be giving birth before I'm even trying to get pregnant again. If I have to start this medicine I want to do it now. I do not want to keep waiting... I just don't. I don't want to be a part of it at all. I want healthy kidneys.. but for the love of God let me get the meds over with. I'm terrified and dragging it out is just messed up on so many levels. I need to have some control here. I need to know what happens... if it works. What if it doesn't and 6 months from now I'm still in the same place? I WANT A CHILD OF MY OWN. And yes, I want a biological child, and no, I don't feel guilty about it. Whatever is going to happen needs to happen so I don't have to sit here and agonize over it any more. I can only sit here and worry about getting 9 months down the road, having done the treatment only to have it work for a few months and then have bad protein levels again. About never being able to carry a baby. I can't do it anymore. I JUST CANT. I need to get this started. I need to know if I can carry a baby. I'm terrified. And I can't deal with it anymore.