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. 

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!   

Why I Don't Want A New Kidney

I had a friend ask me why I can’t go ahead and get my family tested to see if anyone is a match for a kidney transplant. It’s a great question and one that I have been asked before so I thought that I would answer it on my blog today.

Scar from kidney transplant. Check out this cute blog, she has lupus like me too.

Check out her blog here:FlowonLupus

The quick answer is that while it sounds like a great solution, it’s really a double edged sword. Once I get a donor kidney, I will have to start taking anti-rejection meds for the rest of my life. These meds are no walk in the park and have serious side effects. Also, the kidney does not last the lifetime of the recipient, I know of one person that has had her kidney for 20 years now, but the average is much less.

A lot of people find it interesting to learn that the diseased kidneys are not even removed during the transplant; the new kidney just gets placed (normally in a different location) and the old ones are left. The reason for this is that even if they are only functioning at 5% they are still helping filter blood. As they die and stop working completely the body just reabsorbs them. The surgery to remove the kidneys would also be very invasive.

Currently, my kidney function is around 25% which means that for a person with healthy kidneys their blood is filtered through the kidneys about 8 times an hour and so for me it’s a lot less. In order to be considered for a transplant, my kidneys would have to be in failure, and I would likely have to start dialysis while the search begins. Sometimes, I wonder if my kidneys even know they are sick because most days I don’t feel like I have a serious disease. They are just down there doing their thing at a much slower pace.

The procedure is really tough, requires a long stay in the hospital, and is something I hope I can post pone for as long as possible. In fact, I’m waiting for advancements that will reduce the anti-rejection meds, and who knows how long that will be. Lastly, I'm praying for complete healing.

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

Lupus Flare

Most of the time I forget I even have lupus and honestly if my blood work didn't prove it I would think that I didn't. Except for the past several days. I've had lots of cramping in my fingers and toes. It's not been as bad as in the past but I still noticed it. In the past the cramps in my toes have been so bad I have had to pull my car over and park until it passes. I've also got a huge fever blister on the outside of my mouth, when it was first coming I counted over twenty little blisters all clustered together, and there have been a couple on the inside of my lip.

These symptoms really aren't that bad. I can handle a few cramps, they don't last long and the mouth sores is pretty uncomfortable but with the majority of it being on the outside it has not prevented me from eating or caused any major discomfort, its just ugly. I wasn't even going to post about it, but something prompted me to do it. 

This morning when I read all the Facebook comments that people were praying for me, I knew that was why I felt prompted to post. We all need prayer. Amazingly, my fever blister is on the mend even before it got super bad. Thank You all for reading my blog, your prayers and comments are always a welcome encouragement.