Monday, December 27, 2010

I haven't heard from my doctor, so I don't have any news on the kidney front. I did find out at my last appointment that my kidney pain can actually be caused by my IGA Nephropathy. Apparently my doctor didn't even know that, but did some research and discovered it.

Since I don't have any new updates, I drew a picture of my kidney and how it feels about me.

It is MAD.

And this is my immune system following in his footsteps:

I don't know what an immune system looks like, so that's what it looks like in my head. He has teeth because he's mean and hates me like my kidneys do. 

Wednesday, December 22, 2010

Well, I'm pretty sure I ovulated this month. Despite FF, I don't think I did the last two months. This morning I had the very tell-tale pain in my right side. I get a lot of pains around there, but this one is very specific to ovulation, so I'm hoping to see a temp rise tomorrow. This comes a few days after going down to 80mg of prednisone. The neat thing about it is if I did, it was exactly 4 days after getting watery CM, just like before! I hope this is a good sign and I get my period like I'm supposed to and we can try in January like we wanted to. I have an appointment with the OB on the tenth, and I'm curious to see what she says. I hope she gives the go, because if she does I an start the IVF. I should have my results from the 24 hour urine soon.. I hope they're good!!

Monday, December 20, 2010

I saw my nephrologist today. He seems pretty happy with how I'm doing, but he doesn't like that my blood pressure is consistently in the 140s/80s. I might have to start taking something, but he thinks it may be prednisone-related, so I'm not freaking out yet. He was very happy with how little fluid retention I have, and I turned in my latest 24 hour urine this morning so we should have results soon.

He spoke with the high risk OB and he said that he tinks he changed her expectations. She seemed to think that my kidneys would magically improve with prednisone, but he explained to her that I'm on a different course than last time, and that while I might se a marked improvement, I might not, and that if we want to have a baby, this is probably the best time to do it. I'm going to make an appointment to talk to her directly. He told her that I'm aware of risks and want to go forward, but I want to  go into detail with her and get all the facts. She still says the protein could be harmful for the baby but I just don't see how since it's not making me retain water or lose blood protein, so I'd like to know that. And then hopefully I can tell her I'm aware of the risks and I want to proceed and she will say OK. She did tell him she wants me to get a second opinion from another Hopkins Doctor. I think she forgot that I already did that and the guy pointed to a book, said "Here are the statistics with your creatinine" and sent me on my way. My nephrologist said I was more qualified to have an opinion than that guy. But, if he does that, he should give me a go because mt creatinine is OK, so if that's what I need to do then fine. I just want to get on the way to IVF. I'm hoping that having talked to him and getting all the details from me she will be able to go forward knowing that I'm prepared to do whatever I have to to keep this baby healthy. If I need protein shots or heparin (something about protein and blood clots) I dont care. I'm ready, and we want this. So hopefully they'll call me back and I'll get that appointment soon.

I don't know what to expect from my 24 hour urine. There was a lot more urine this time so I'd imagine there would be more protein, but I guess I can't say for sure. I'd like to see a reduction, but I'm still trying not to expect one. At least not until January. So I guess I'm still at a standstill, but I've got everything done and as soon as she OKs me I'm moving on to the IVF, so hopefully it won't be too long.... if she OKs me at all (I hope so!!!!!).

For now I'm still praying and doing my best to stay positive. Hubs is looking forward to the busy January schedule and so am I. Hopefully we won't need anyone's approval to have this baby and it will come next month! Only time will tell, but I'm hoping God's timing for this to happen for me is coming up soon!

Wednesday, December 15, 2010

The Hail Mary Cycle

What's that little flutter I'm feeling in my chest today? Could that be... hope?? Yes, I think it is!! And I've missed it!! This HSG has done a lot for me, but probably the biggest is re-establishing some hope where there was just so little for so long. It's not that I expected a blockage... but I didn't know, and so many things have happened I wouldn't have been surprised. I'd sort of resigned myself completely to IVF, but I was nervous about my kidneys and that being our only hope. I figured if my tubes were blocked it'd be OK... but then IVF would be our real only option. We just wouldn't conceive any other way by any chance. And if the doctors couldn't be convinced, we were done for in the fertility world. So today? Hope. And this brings us to the Hail Mary cycle.

If you're reading this blog I'm sure you know what I'm referring to. Hell, when I said it to my husband he knew what I was referring to. He asked for it in so many words a few months ago - remember - "Honey can we PLEASE have ONE more cycle where you say 'honey, we have to do it RIGHT NOW'?" Well, dear, we can. Thank you, God. Now that this HSG is over, I can start BCPs the second my kidneys show improvement. My RE does the mock embryo transfer during BCPs. I'm doing my 24 hour urine this Sunday since my period keeps screwing that up. We'll have some results that I don't expect much of. To be honest, I expect to start to see good news in January and get to start BCPs in February or so. MAYBE March. Which means January should be wide open. And there are some awesome things about January.

  • I had an HSG this month. There is a theory rolling around that HSGs can up your fertility. Clearly, given my 30 second, non-rolling-from-side-to-side test, my tubes are clear. But supposedly they're more lubricated after it, too. So... maybe.
  • I am down to 80mg of prednisone. 60 on 12/28, and 40 on 01/11. That's like a 20mg a day dose, which is a LITTLE higher than recommended, but WAY better than 60. Also, my period was relatively normal on 35mg , so hopefully the extra 5 won't matter much and I'll ovulate.
  • Andy will have had 2 months of religiously taking his meds.
And... we now know that (prednisone aside) I'm OK! There's NO reason I shouldn't be able to get pregnant and have an implanter. I know the prednisone might have messed with day 3 hormones a bit, but on the lower doses I should be getting better.. hell they might be normal now. As for Andy.. well, he was being a jackass and not taking his meds, but by then he'll have more than 2 solid months of perfection. Plus I got him back in Zinc which helps with volume. More volume = more sperm. So even though his morph is 5%, if we get more boys, we have a better chance. And his last SA really wasn't that bad. he had over 30 million, and good motility, so there are definitely some guys in there to meet my egg! Plus, the 5% was strict, and it's very possible there are plenty more with super minor defects that could still pentrate the egg. So we'll see. And finally, we've agreed to a very busy uhm... schedule. Every other day from EWCM through +OPK, then every day for 3 days. Which is waaay more than what we usually do. We have low sex drives. It happens when you have a brain tumor and an SSRI drug meeting up to try to make a baby. But.. too bad. We're doing it anyway. We have fun, we just struggle to care beforehand lol.

And if it doesn't work... well.. that's the Hail Mary cycle. You pray and you ask the universe for positivity and you do everything you can. And if it doesn't work, you move on. But right now we're READY to move on. REALLY ready. Our cycle is paid for, our tests are done. And if my kidneys cooperate, I could be injecting myself for a February or March transfer! Things always take a few extra days, so right now I'm working from.. Good news Feb 1, star BCPs the next week. 3 weeks of BCPs, 2 weeks of stims, mid-late March transfer, and I'd be due late November (38 weeks, per OB). Even if we end up with an april transfer, we'll be trying on our own... which means t here is a CHANCE for pregnancy, and HOPE again. I'm begging my kidneys... I'm praying for them all the time. If they do this for me, I could REALLY have a baby by IVF next year or at least be pregnant. Or maybe even on our own. It's possible now. It's really possible!!!!

Tuesday, December 14, 2010

The Dreaded HSG Story

Anyone that has been reading my blog knows that I have been absolutely horrfied about this HSG procedure. I've put it off since June when it was first mentioned to me. This is mostly because I made the unfortunately mistake of reading stores on the internet. Some of these stories began with "I wish I could tell you something different, but it wa sthe WORST pain of my life". I read tales of people throwing up and crying and yelling and screaming. And me... after having my midwife say "You're getting and HSG? TAKE VALIUM" becaus of my issues in those areas... well, I was unhappy. This entire last week has been dreadful. So many moments have been filled up with "I'll be able to look forward to Christmas soon because my HSG will be over". Well, my HSG is over. And here's how it happened.

I took 1mg of Xanax Sunday night hoping it would take the edge off. It didn't. So I took 2mg on the way there. I felt loopy, but not like a bumbling idiot. It honstly felt lie having a really good buzz except my legs were a little woozy. I also took 800mg motrin (which I'm not supposed to have so don't tell anyone). I honestly don't thnk these helped with the pain except in 1 instance which I'll explain later. We were running very late because of traffic. It was a 45 minute drive according to my GPS, but it took us 2 hours. We'd left early, so we were only 5 minutes late for the actual appointment (though we were supposed to be there 30 minutes early). As soon as I sat down they called me back. I spoke with a nurse for a few minutes who answered my questions and put me at ease. I told her I was nervous, and she gave me the great news that my actual doctor (from a different office!!!) would be dong my procedure! Then took me back to the room. It was very familiar looking except it had a little more equipment. I undressed from the waist down and put on a gown. They had a huge pad to sit on and a reglar hospital pad for afterwards. When I came out, I sat on the table waiting for the doctor. She came in not 3 minutes later, had me put my feet in stirrups and scoot all the way down, as per usual. She put the speculum in, which, of course, is not comfortable, but it was less uncomfortable than my last pap. I could tell she was cleaning in there but barely - I almost didn't feel it. and then she said she was done. I assumed she meant with the setup, so I said "with the setup you mean?" and she said "No, you're all done". I couldn't believe it. I felt NOTHING.. and I mean that. Nothing. I sat up and she showed me the xrays and the spillage and I said "that was less uncomfortable than my last pap!". She said I was the second person to say that that day. The x-rays were SO COOL. I could see my uterus and tubes, and the dye spilling freely from both. It was amazing. And oddly enough, I didn't get any "spillage"... like onto the table when I sat up. I did bring a pad from home because I do expect something at some point, but... nothing so far.

I think the xanax helped a little just in that I was more relaxed than normal. I think how tense I am is probably what makes my paps uncomfortable. But the dye? Nada. I can't believe how little it hurt. I sat up, got dressed, and I'm at work. Andy drove and is picking me up because of my medication, but I would've EASILY been able to do it myself. So now I'm sitting here, hours later, with not a cramp in site. To be honest, and this is TMI, I'm a little gassy, and I feel bubbles, but that's it. It was easily smoother than an annual exam, and if they told me I had to get one tomorrow I wouldn't hesitate. I didn't feel the catheter go in, I didn't feel a balloon... nothing. From the time I was on the table and they put the speculum in it was literally 1 minute. Maybe 1:30.

AND everything is PERFECT. My uterus is actually smack in the middle.. perfect triangle shape with my tubes almost evenly distanced on either side. The dye spilled out so fast I didn't even have to roll over. No fibroids, no polyps, no scars... perfect. So now I can stop freaking out about the random pains. And I know I have an actual shot to get pregnant naturally!!!!! Once my kidneys are good, we've done EVERY test. I can literally sign papers and start BCPs immediately!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I can't believe what great news. Finally something has gone our way in fertility land!!!! My uterus is ready for a baby!!!

Edit: I noticed in re-reading that I had a LOT of typos. Please pardon those.. it was the xanax (which I really expected to knock me out but it did no such thing). Also, I feel SOMETHING "down there" which might be intestinal, or it might be the mildest cramp ever. Either way... I am a jackass for getting so upset. Andy's been taking his meds, and I'm down to 40mg prednisone every other day as of January.. Hail Mary cycle here we come. Oh.. she did mention I need to lose weight. Yes I know. I'm back on the train soon. Promise, RE.

Sunday, December 12, 2010

Today was the day to test-drive the Xanax. I read that the starting dose was .25-.5 mg, so I tried .5 and it didn't do a damn thing. So I took another .5, and it still didn't do a damn thing. So now I don't know what to do. After what Xanax did to my mom and my husband I figured it would help me... and it really hasn't done anything at all. So I'm going to try a whole pill (2mg) on Tuesday, but now I'm terrified because I don't think it's going to do anything for me! Which makes the whole thing even scarier. I'm not less tense.. I'm MORE tense. I'm also freaking sick. I'm supposed to go to work tomorrow because I have to bring stuff in for Tuesday's baby shower because I might be in really late because of the HSG. But I feel like CRAP and I don't want to go to work. And there's no way I can make this cake tonight. I have no idea what to do. I have to get there at some point to get this stuff to the other girl putting the shower together. But I don't know how.

Wednesday, December 8, 2010

So I have this coworker who is amazing. I knew she'd struggled to conceive and had miscarriages and ended up adopting a baby last year, but I didn't know much about it. Two days ago another coworker told her about my HSG because I was nervous and she knew other coworker had had one. So coworker asks me to go to lunch with her and we do. She talked to me about all of their struggles - how they'd been told they wouldn't conceive naturally, but they did, and then lost the baby. They didn't want to do heavy intervention so they started the adoption process, but then got pregnant again, and the miscarried again. She talked to me about the feeling of loss, and dealing with pregnant women around you. She was open about how she couldn't face baby showers or look at a pregnant woman. She let me vent about how everyone here is pregnant so easily, and she understood. I mean REALLY understood what it's like to watch everyone around you - even those who don't want it - get what you want more than anything. She talked about her husband having to come around to adoption, and how she still has some issues talking about certain things despite having a beautiful little boy (who will be 2 in January) through international adoption. She said some of it is easier now that she is a mom, but she really, really got it. She sent me a website just now about women who post real secrets about pregnancy.. feelings of loss and failure. She said she'd be thinking about me on Tuesday.

Sometimes when you're having a rough time, you meet someone, and they change everything. She'll never know I wrote this, but thank you anyway, Margaret. You don't know how much your support means to me.

Tuesday, December 7, 2010

Must. Stop. Reading. HSG Stories.

Seriously. I am driving myself way past insane. Why can't my brain just accept that there's no way to know how it will go until I do it? I think I'm going to tell them how nervous I am and ask if they can tell me what they're doing as they do it. And beg them not to use a tenaculum. And... Xanax. My new best friend.

I'm trying to think about Christmas and that by the time it comes the HSG will be long past done. They told me we were to have protected intercourse this month, though. I found that odd, but I suppose there's a reason.

The high risk OB hasn't called, so I really need to just call tomorrow to schedule an appointment.

I am freaking out. Dammit.

Monday, December 6, 2010

Well I didn't realize this, but my nephrologist told the high risk ob that he didn't know if the prednisone would work at all, and that if it did, the results might not be maintained. She's supposed to call me this week. I think I'm just going to call and make an appointment with her. I want to talk to her about the risks. Right now is going to be the best time for us to try the IVF. I've spent months trying various treatments, and there's no way to say if another treatment would work, so I want to do this while my kidneys are still filtering. I need to find out what the risks are to the baby, but I still think it's due to lower blood protein and mine is close to normal, so I want to see if we could work something out to make sure the baby is healthy. I don't care if I have to give myself extra shots. I'm going to get all the information and tell her that I want to go through with the IVF ASAP, and hopefully she'll say it's OK.

I also talked to a coworker today about infertility. She was able to conceive twice, but lost both babies and went on to adopt. It was weird having someone to talk to who actually understood exactly what I was talking about. She also told me her HSG sucked, and she didn't even get to the dye because she had a blockage right at the beginning. I really want the HSG over with!

I keep having delusions of a January BFP... but maybe it'll happen! If not, I'm really hoping to go to IVF in February. I didn't get to do the 24 hour urine because I got my period, but I'm going to do it this Sunday, so maybe I'll have good news there, and if not, I'm going to talk to the high risk OB about what we can do to get and stay pregnant and keep me and the baby healthy while dealing with the protein. It's been done before so we can do it. I'm trying, still, not to be negative and to be hopeful. I want this so much.

Friday, December 3, 2010

UPDATE: My HSG is scheduled for Tuesday, 12/14.

I am terrified, but so ready to get it over with and know what's going on. Ugh, it even says on their website that some people may experience intense pain. Xanax here I come.
I got approval to do the HSG, and since it's Day 1 of my cycle, I called my nurse to see if we could schedule it for this month. She might want to get the document from the doctor first, but I got it in an email so I could show it to her. I want this over with! Unfortunately, there was one more interesting tidbit in the email:

"I am not sure we will see a great response with the urine protein, but my fingers are crossed."

 WTF? Why would he add that in there? I guess because I sounded very positive in my email saying "We will start WHEN the protein goes down". Yes, Dr., I know it might not work. You've never said it would, and I know that you can't guarantee anything, but you also don't have to re-open a wound and throw salt in it. I'm trying to be hopeful here. But now I'm thinking "Well sure it worked last time, but maybe changing up the protocol was a bad thing! Maybe we should've done it the same way again!". I thought higher sustained doses would be better. So far it's not... what if it was stupid to change it up!?

So then I go on to think "Ok, so my insane blood sugar, constant needles and finger-pricking, extra-hairy face (because it wasn't hairy enough already), and fucked up periods are all for NOTHING?". I'm TRYING not to think that way because I know it's possible it will work. I know it took a long time last time. I know he has hope. But... I just don't need to be reminded that it might not. Why would he add that in there? Perhaps he thought I wasn't depressed enough about the situation? I just needed a little extra reminder that I might never have a child.

The problem is, I really don't know where to go after this. Do we give up and try on our own for a little while? Do we find a new RE who might be willing to help us? Do we try another 6-month kidney program? Because the first two haven't been hard enough? I don't need to make another tough decision like this. I want something to work out right so I don't have to choose between sucky and suckier.

So, of course, I texted Andy. I expected him to be asleep since it was pre-8AM, but he was up, and he called me right away. He said that my doctor is great at doctoring, but not at.. people-ing. That he understands that he wants me to know this isn't guaranteed, but the way he says it is very negative, and that we already know, so he really doesn't need to say it again. He promised me we'd have a baby together with all the faith and hope of someone who hasn't been going through infertility for over a year. And he's either a fantastic actor or he really believes it. I love my husband.

I was telling myself this morning that we'd start the adoption process if I wasn't pregnant by 32. I turned 30 Nov. 22, so that's 2 years from now. Even if we do go through another 6 month treatment, that'll give us over a year to try IVF cycles, trying on our own.. whatever we want. I know 2 years is going to fly by, and hopfully I'll have a baby way before then. But at that point, after 3 years of dealing with IF, I think it'll be time. I'll have tried everything there is to try (since I'm going to IVF the second I can).

Before I jump that far ahead of myself, however, I do have some plans. I have said before that I can't sit here and complain if I'm not doing everything I can for myself. And Andy can't promise me we'll get our baby if he's not doing everything he can. And we have a lot we can work on. Whether we go IVF or natural, we both have weight to lose. And if I can get under 230, I have another RE who is willing to help me. But either way, losing weight might help my fertility, so I HAVE to get back on my diet. I need to anyway, because I need to be 271 to do the IVF. I should be exercising, too. I should be taking my fish oil for my kidneys and I'm not doing a very good job. So I need to take that correctly. I need tot ake my cholesterol meds right, too, so they actually help me. I need to look into LDL apheresis too, since it can help so much while I'm not on meds. Normalizing my cholesterol is a big thing, so I'm going to see a cardiologist. And Andy needs to take his vitamins and stop complaining about it. Some of them can improve his count and morphology, and I'm going to force them down his throat if I have to. He wants this baby, and with everything I'm going through, he can take some damn vitamins. And he needs to get on the healthy eating train, too, so tonight we're going to sit down and talk about all the things we need to do to make this happen.

Finally, we're doing to do it. A lot. If I get this HSG, we'll know my tubes are clear, and that is the last hurdle. With all my other hormones in check, I should be able to get pregnant. We just need his boys to get there somehow. I get super tired and not in the mood a lot 'cause of my meds, but it's just too bad.

So that's it. Yes, I'm wallowing a little and upset. And still hoping to go to IVF in early 2011. But I have backup plans, too. Lose weight, try naturally in the mean time, get my cholesterol under control, get my HSG, get Andy on vitamins... there's a lot more I could be doing, and it's about damn time I do it. I'm taking my life back into my own hands. I WILL MAKE THIS PREDNISONE WORK! I WILL MAKE MY KIDNEYS WORK! Everything I'm referring to will help my kidneys AND the baby process. So.. whether we do IVF (YES WE WILL!) or we get pregnant naturally, I WILL HAVE A BIOLOGICAL BABY!

Thursday, December 2, 2010

Apparently I don't know my body as well as FF. I just got my period, making this month technically "normal" at 34 days (I put it down for tomorrow since it's late). And, I may actually be functional because I think if I did O it was probably a day or two after FF said, making this a 12-13 day LP! Weird stuff going on, but I'm glad to have my period. Hopefully by next month I'll have all my documentation so I can do the HSG in January. I hope I hope I hope!
I definitely didn't ovulate. Damn you, solid crosshairs! I know my body. I know I didn't. I don't know if I will, or if I'll just eventually get my period. I hate what the prednisone is doing to the rest of my body.. I hope it starts working on the part it's designed for! I have another 24 hour urine coming up on Sunday, so.. maybe I'll get some good news!? I'm not expecting as much again, but it would be nice. I'm hoping around the third month to see some really good stuff, and this is 9 weeks. I'll be disappointed if it's not looking better, but again, it's still early in treatment.

I decided to stop being a baby, and I asked the nephrologist for a note saying it's OK for me to get the HSG. I want to get that done and in the rearview, so if he gets it to me soon, I could get it done next cycle since I have no period in sight yet. That would be just grand. I just want it overwith at this point. It's my last stumbling block other than the kidneys to getting this show on the road. It would be nice to know there wasn't a blockage, too. Sometimes I still feel like I've got issues in there, so it'll be good to have a clear picture.

I'm SO READY to be pregnant! I'm trying to get myself used to the idea of not starting until March or so, but I really hope we get to start in February. I have a business trip on the 13th and I'd love to be on BCPs then, or at least have a timeframe. That's over 2 months from now, so that's not too much to ask for. Come on, kidneys... heal, guys! You can do it!!!!