10 Reasons I Will Not Cry When I Call And Cancel My IUI (Again)

I'm having difficulty coming up with like.. 2. But I'm forcing myself to find reasons not to be upset about this. I have to cancel it if I don't hear from the high risk OB by Monday. The first appointment is scheduled for Tuesday. I'm 99% sure she's not going to call. She has to get with my nephrologist and he's insanely busy. I want to cry just thinking about canceling a second time, and then taking a 6 month break. BUT... here they are:

1. The Chicago White Sox. If I have to cancel, I will have money to go to the game. I really need something fun.
2. I won't have to up the # of people who've looked "down there".
3. Nothing plastic will make its way through my cervix.
4. I won't have to get up at 6 AM
5. My poor right arm vein will have a chance to rest
6. Andy will have another month of vitamins
7. I will have another month to lose weight
8. I can take comfort in knowing I'm doing the right thing for my baby
9. I'll know that I've put faith in God's timing
10. I'm cheating. I'm still pretty pumped about not having things go through my cervix.

I managed to make that just about the IUI, not even the 6 month wait. To be honest, I'm scared this will never happen for me, but I'm trying not to be. Andy promises me we'll have our own biological baby and I trust and believe him. It's a rough time, but I found ten whole things to be glad about, so I just have to try to focus on them.

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:

1. Try to have a baby right now.
2. 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.

My worst fear has become my reality. Back in July when I was contemplating what to do with my kidney disease, my absolute worst fear was that the treatment wouldn't work, and I'd end up in the same place only 6 months later, with 6 months of wasted time behind me. That's where I sit today, 1 year later. I did 6 months of prednisone. I gained 30 pounds (putting me above the IVF weight I need to return to). I missed a lot of work and felt miserable. When I first stopped the treatment things were looking good. My creatinine and urinary protein had both decreased dramatically. Today, while my creatinine is still OK, (it went from .95 - 1.03, which is within the margine of error for the test) my protein has gone from 1670 to 5700. Proteinuria in this range is called Nephrotic Syndrome, and increases risks during pregnancy. So now I'm faced with choices again:

1. Take anti-rejection drugs. These increase the incidence of cancer, and aren't proven to really have a benefit. Other side effects include hair loss and complete immuno-suppression. They cannot be taken during pregnancy
2. ACE inhibitors. These did not seem to decrease my protein by much the last time I was on them, and my creatinine still increased. They cannot be taken during pregnancy.
3. More Prednisone. This did help while I was on it. I was on an extremely high dose, but only for 9 days out of the 6 month period. The rest of the time I was on 35mg every other day. Protein decreased by 3000mg. I probably can't take the IV dose again, but this is the treatment of choice for nephrotic syndrome. I could try it in a long-term smaller dose. This may or may not help. It greatly suppresses the immune system. It is pregnancy category B, and the benefits of taking it will probably outweigh the risks, since proteinuria can effect a fetus as well.
4. IVIG therapy. This is an extremely expensive therapy requiring 6 IV doses of immunoglobulin G given over 3-6 months 12 hours at a time. This therapy has not been studied well, but 1 study indicated a great improvement in 10/11 patients. It is for people with severe/progressive IGA. This medicine is actually given to women with recurrent pregnancy losses to prevent miscarriage. Side effects are very minimal.

These are my options!?? 1 & 2 are out. I want to continue to persue a pregnancy, and I do not want to take anything that could cause cancer. Not yet, anyway. I'm excited about option 4's potential and am interested to see what the Dr. says. I'm not psyched about #3, but I know that it helped last time, and I have a feeling that a lower dose would still provide some benefit. All in all, I responded well last time, and I feel that with a careful eye on my diet I can keep from gaining weight.

My high risk OB seemed very concerned about beginning a pregnancy with nephrotic syndrome, so I do want to do something to help. The good side is that my creatinine is still good and my BP isn't high, and pregnancies with kidney disease have a "Favorable outcome" with creatinine under 1.4 and no high blood pressure. The proteinuria does add another factor, but without the high blood pressure my outlook is still good. Still, I want to get my proteinuria as low as possible, so I feel I have to try something. I am hoping my doctor will go for one of the treatments I want, though I know he wants to push Cellcept, the anti-rejection drug. I'm just not at a point where I want to take those risks, and the course is for over a year, which means no baby for over a year, and if it didn't work, I might not have a chance at all.

Honestly, I'm devastated. I have no interest in being at work. I want to go home and watch TV all day. I don't have a choice but to be here and do my best, but it's hard. I don't want my kidneys to fail and I want to have a baby. This is a very trying time for me... especially when I thought I was ok. I thought my kidneys might really be getting better. I was so scared to get my results and this is why. I just hope we can do something and I can bring a healthy baby into the world and remain healthy myself.

Love

I am a very lucky woman. The last few days, and being a lurker on some Nest message boards has helped me to see this. My husband is amazing. I don't know that I've ever admitted this to anyone, but he does probably 80% of the house work. I clean bathrooms, and help him here and there on Sundays. He vacuums, mops, does laundry, empties the dishwasher, etc. We have a little bit of an arrangement because I'm paying more bills right now, but to be perfectly honest, he works way harder and more hours than I do. And he still takes care of me when I'm not feeling well. Yesterday I called him terrified all of a sudden that I was going to die an not be able to be with him and he helped me to calm down. He lets me lean on me when I'm struggling with my health issues.. he carries me when I'm depressed about not being pregnant yet. And through all of it he stays insanely positive. His attitude lifts me up when I'm down. I don't know if there's any way I could repay my husband for the strength he gives me when I have none left. I wish I could express in words what I feel in my heart and I just can't. I want him to have everything in the world that he wants. I don't ever want him to feel an ounce of pain or heartache. I feel guilty when I cry because I know it hurts him to see it. I don't think he'll ever read this blog, and I don't think he'll ever know how truly grateful I am to have him in my life. I thank God every night for him, and I'm not sure that he knows. I am so terribly in love that it aches to not see him sometimes. The way I feel make me think we really are meant to have a child together. I told him yesterday that I never realized how much I could really love someone. I think this often, and each time it's true because it grows stronger. I know that this entire entry is a big pile of sap, but I need to write it down, because despite all the things I don't have... or have that I wish I didn't... I will always be thankful for my husband and everything he is and everything he's given me.

I still haven't heard from the kidney doctor. It's driving me insane. I really want to be ok and not knowing is horrible. If things are worse we have to really look at what we're doing and when. If it's stable then we actually have a little room to relax... at least some. The good news is I saw the endo today and my blood pressure was normal! I'm pretty sure the headache I had at the last doctor was making my bp high. WHEW. She did give me medicine for my thyroid. I don't know what I expect it to do but maybe it helps? I'm at the point where I hope my period doesn't come, but if it's going to, I want it to be NOW lol. I guess I'll just wait and see. My mom said she felt like she was getting her period before she was pregnant. It's so annoying that pregnancy symptoms and AF symptoms are exactly the same. I really have no reason to think I'm not pregnant but I guess I just don't want to be disappointed. I'm still hopeful. But we'll see.

Well yesterday's cramping has subsided for now thank God. 9-10DPO were pretty terrible. I had the ovary stabs and crampies and then yesterday just plain cramps. Today I still feel like a pre-AF mess. My tummy is a-rumblin' and I'm an emotional wreck, but that's what happens when AF is headed here. There's a teeny piece of me that hopes the two days of crap was implantation, but mostly... I'm jsut preparing for disappointment again. And to be honest, I'm not even excited about the IUI. I don't want to tell my husband again. I don't want to wait 3 weeks to even have the IUI. And they want me in on day 12 for the ultrasound. I don't usually ovulate until day 18! They better not make me come in more than 3 times 'cause I simply cannot afford it. I really can't afford 3 times, but I'll have to figure it out.

Still no word about my kidneys.

I am a mess today, and I am grateful that I have a 4 hour work day, otherwise it'd be  a big mess. I'm so not interested in being here. AND I had a beautiful baby dream last night where I had a 3 month old son. I just want that for real. I am hoping and praying my test results come back ok. I'm scared shitless and on the verge of tears. My cholesterol was over 500 last time and is probably higher now. I pray hard that it isn't. I need to call MFM about the cholesterol med that's supposed to be pregnancy-ok.

I'm terrified right now of my kidneys, my cholesterol, and IF... of never having my own baby. I can't take it right now. I just want to go home and sleep.

I'm not out, but I feel it. Yesterday with all those weird aches, pains, stretches, etc... got me hopeful. Now not so much. I feel like AF is just around the corner, and she's scheduled to show up on Friday. I was so excited for this month. I guess I'm not out until I'm out but I feel out. My temp is still in the 98s, but it usually is 10DPO. Negative test this morning. And I'm getting scared that the pains the week before AF are actually a problem. I'm going to mention them to Tara... the aching back and hips and the sharp ovary pains. Maybe it's nothing and I hope it's nothing but it's worth bringing up. This TTC thing is starting to wear on me. We're moving into our 6th real cycle after 4 months of the MFI dealings... so it'll be 10 months we've been dealing with it and it's starting to take a toll. I told Andy... "If I knew 100% I was going to have a biological baby, I wouldn't sweat this AT ALL". But I don't know that 100% and the uncertaintiy is so stressful.  *sigh* I just want a baby with my husband... to see his chubby cheeks in our little one. Next month is our IUI.. and it's still July.. but what's with all the pain!? I hope the RE has answers for me soon.