One More

I want one more baby. Last month, when I saw my nephrologist and talked about getting pregnant again he asked me if I want "One more" in a way that made it sound like every perfect family in America is made up of TWO kids. I said yes, but in a way that left if open for more because truthfully, I would be just like Michelle Duggar and pop out babies every 18 months if I could. I've started a lot later than her so I wouldn't even get close to a dozen kids but I'm just making a point that I want a lot of kids. I've said I want four for at least the last twenty years and to me, it sounds like the perfect number. Here lately though, I've been trying to live in the present and stop worrying about how many kids I might have and just focus on Baby M and the next baby we are trying to have. 

I thought that since we finally found a treatment that worked and helped us bring home a baby, getting pregnant again would be easy. We would just do the same things we did last time and things would go great. It never crossed my mind that we might have another second trimester loss or even a miscarriage at all. I was very sadly wrong.

I found out just days after I got the "blessing" from my neph to get pregnant that we were. It was the Tuesday before my period was supposed to start and I had just a little bit of spotting, which is not normal for my cycle. My brain quickly ran to implantation bleeding as the cause so I took a pregnancy test and it popped up positive. When I was at Target I saw a cute "Big Sister" shirt so I bought it and Baby M was wearing it when hubby got home from work. I had already started planning the nursery and we were getting excited. Well, the bleeding never stopped and only got heavier and the next day it was a full period. I tested again and it was negative.

I went ahead and called my ob and they had me come in to see him and have lab work. My ob said that it's common to have chemical pregnancies and if I had never tested I would have never known but just in case it was caused by auto-immune stuff we doubled my meds. I doubled the plaquinel and baby aspirin and we decided that as soon as I got a positive I would start progesterone and lovenox. 

Fast-forward 26 days and another faint positive. This time, I didn't believe it and waited to test the next day. The line was so light I had to hold it in bright light to see it and even then I wasn't really sure I saw anything. Many, many test and two days later I got a real positive. Still faint but I knew it was really there. Then the next day, nothing, it was totally gone. I went ahead and called my ob to have labs (yesterday) but I'm pretty sure it was negative because they never called me back. I'm going to call tomorrow and ask about getting a rhogam shot and starting progesterone and lovenox even earlier. My period has also not started and since I'm on day 28 of my cycle it should have.

Here's what I think is going on: Conception is taking place but when the little babe goes to implant in my uterus something is going wrong. It's likely due to my anti-body stuff and the fix could be really easy or a little more complicated. Next cycle, I want to add progesterone and lovenox 5 days past ovulation. If that doesn't do the trick then I think I need to see a specialist. My ob has already called my MFM to schedule an appointment with him but I'm not sure this would be his area since they are happening so early. My MFM is really nice but I don't think he would be willing to try the lovenox and progesterone early as a precaution. My ob has always been very willing to try anything but he emphasized that I should wait until I get the positive to start either one. I hope one of them will agree with me. If not, I already have lovenox that I can start early but I don't know what I will do to find progesterone. 

I am really bummed that this has happened twice in addition to all we have gone through to have Baby M. I'm scared that trying to have ONE MORE BABY is going to bring a lot of tears just like it did with Baby M. It took us 5 years to have her and bring her home and it was a long road. 

The Waiting Room of Old People

Yesterday, I had my 6 month check-up with my nephrologist. I felt very out of place sitting in a waiting room with grandpas using walkers and barley able to hear. I looked the healthiest by far of anyone in there, but still, there I was sitting with the old people. Old people have a smell, have you ever noticed it? No offense to any "seasoned" person reading this. I'm sure if your reading this you're hip enough to have a computer and so you probable don't have the old people smell.

Enough of what the waiting room looked like, I'm sure you want to hear the results.

Everything either remained the same since my last appointment or got better! That's great news! Since I started the GAPS diet in April my protein spill has decreased a lot. It's really bad for kidneys to spill protein and it makes pregnancy even harder, but I'm so glad it has come down. I was spilling about 1.5 grams but now I'm only spilling about 300 mg. I've often been told to limit my protein by doctors and nutritionist but since I started GAPS I have been eating a normal amount and I saw improvement doing that. I also feel better when I eat a normal amount. That was the best news of the day.

My cholesterol also improved a lot since starting the GAPS and I have lost 20 pounds. Another amazing thing is that I have been able to completely stop taking a bp medicine. I wrote a post about how cutting out sugar helped bring it down enough to stop taking 1 but I had to go back up to half the dose because it was not low enough all the time and it sometimes would spike. I started using 2 essential oils last week and that's what has helped it come down. I used some before I left for the appointment and even though it was slightly high while there (130/90) it is normally even higher.

I was also given the green light to get pregnant again. He said I will still be high risk and I will have appointments every 2 months and more lab work but whenever we are ready he is supportive. That is going to mean a WHOLE bunch of doctor appointments because I already see the OB or MFM at least every week. I'm going to need a lot of babysitters. He also mentioned that he thinks my kidney function is very stable and does not think it will decline any more over the next year.

I'm going to be completely honest and say that even though the results were great I went in really hoping to see some improvement in my kidney function.   I'll just keep praying that God keeps me healthy so I don't ever have to worry about dialysis or a kidney transplant. God is my sustainer.

A Quick Kidney Update

I put the orange jug in the fridge and shut the door. Yup, it's time to do labs and, as always, it includes that orange jug of pee. It's not easy to mistake it for juice though, it certainly doesn't look like anything anyone would want to drink from ;) I'm pretty pleased with it, it's almost full. 

I usually get nervous before lab day and the appointment (which is at the end of the month) but I'm really not. I know I've Prayed a Bunch and God is going to take care of me no matter what those labs say. They are just numbers and sometimes I really wonder if my kidneys even know that most of their filters are damaged.

Since I got my last labs done (in April) I have been doing a new diet. I started GAPS in April and its an anti-inflammatory, low-carb diet. I did gluten free/ dairy free when I got pregnant with Baby M and this is very similar. I can eat cultured dairy now like yogurt and cheese but I have removed all grains from my diet. I can't say I feel a lot better but I have lost a lot of weight. I also have more energy and I think that's a pretty big deal since my biggest symptom of lupus is tiredness and I have a baby to take care of.

There is a book that goes into detail about the diet and it was really interesting. It talked a lot about the gut and how so many things can damage it. Almost everything that can damage it I have taken, like steroids (took to stop the kidney disease from progressing) antibiotics (I got sick a lot as a child) and the list goes on.

I've also tried acupuncture in the last few months. I didn't really like it and so after 2 sessions I decided not to go back. I just had a feeling about it. 

One thing I've seen a lot of lately and I am researching is Essential Oils. I'm going to start slow with it though. Hubby is a little nervous that they won't help and so we don't want to jump in and spend a lot up front. I did find this though:Olivia's Oil Testimony A testimony of how they help one fellow FSGS patient. It's a pretty amazing story!   

February 26, 2014 Doctor Appointment Update

I’m normally so nervous leading up to an appointment, but today I had an amazing amount of peace and calmness. It’s easy to be nervous when I go to appointments, it’s not as bad as I’m sure it would be if it were a check-up for cancer, but it’s pretty close. I’m always scared that I’m going to go in and hear that my function has dropped and I’ll need to start dialysis soon. I also feel so out of place when I’m in the waiting room and look at all the retired men and women who must be in their 60’s or even older. Many of them have obvious degenerating health but there I am, young and healthy looking (this is how I see myself anyways). It gets even more awkward when they call me back and ask me all the usual questions like: are you experiencing swelling in your legs, feet, ankles, or blood in your urine, or… the list is pretty long. Then they go over my medications and make sure nothing has changed. After I answer all these questions with the nurse I have to go and wait again. I’m sure your thinking to yourself right now, how long am I going to have to wait for this update…

Today, I saw the nurse practitioner and the doctor. I really like the NP, she is nice, soft spoken, and seems to have a really good understanding of kidney related issues. I met her in the hospital after delivery and today was the first day I had seen her since. She said that everything looks stable and it seems like my function has returned to base line for me. When I delivered M my creatinine had jumped to 3.03, it went down about 3 months later and today it is still where it was 3 months ago. The best news is that my protein spill came down to less than 1 gram (950 mg). She said that we can start trying to have another baby as soon as we are ready and everything looks fine to try again. My neph came in next and looked over my labs and said basically the same thing. He added that we would stop the Enalapril at my next appointment and then we can start trying to get pregnant then. He was happy with all the lab results and I’m happy that my protein came down. Even though my function did not increase it stayed the same over the last 3 months and that’s still really good news.  

I’m happy with the results and I feel relieved that my function is stable. We all agreed to talk about trying again in 6 months and for now I am going to try not to think about it too much. Getting pregnant can easily consume my thoughts, but I have more important things to focus on for now.

Kidney updates from last year:

http://2kidneybeans.blogspot.com/2013/10/october-22-2013-dr-appointment-update.html

http://2kidneybeans.blogspot.com/2013/08/kidney-update.html

It would make my day if you would "like" my Facebook Page for 2kidneybeans https://www.facebook.com/2KidneyBeans

Grace

As October approached, I started to get very sad. I had been thinking about all the things I would have liked to have done with Malakai at his big 1 year birthday, but am unable to since he left us so soon. Several of my friends were so sweet to me. I had a couple close friend send me cards to let us know that they still remember him and are thinking of me. A couple friends that were with us through Malakai's journey wanted to celebrate his day, so they took me to lunch. Another sweet friend thought of me when she was at a craft fair and picked up the picture I have posted today "Grace".

Looking back, I was so crushed that we were once again not able to bring home a baby. I was so ready to jump into adoption and fill that space in my heart with kids that needed a mom and dad. We really thought that God was leading us toward adoption. I mean- adoption is talked about as a awesome thing in the Bible, surely God would want that for us. We continued to pray that God would direct us and it seems pretty clear that God wants us to build our family another way. First, with the failed private adoption, and then second with the road blocks to get our approval for state adoption from foster care. God does like to surprise us, so maybe he has a curve ball for us, but for now we have peace about getting pregnant again.

Tomorrow, I have an appointment with a Maternal Fetal Medicine doctor and I hope that he will prescribe IVIg treatments I have mentioned before. I am getting excited about the future for our family. Sometimes, I find it hard to get excited when things have gone wrong so many times in the past, but this time I am getting really excited. I will be completely honest, last pregnancy was so hard. I was so scared I would go to my next appointment and we would not be able to find the heart beat. I think I missed some of the joy of my pregnancy because of fear. I'm sure I will still have those moments, but I hope that in that moment I can remember to put my trust in the Lord.

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?