Wednesday, March 12, 2014

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.

Wednesday, February 26, 2014

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:

It would make my day if you would "like" my Facebook Page for 2kidneybeans

Friday, January 24, 2014

January 2014 Adoption Update

Last night, I had a dream I came home to bunk beds in the living room and my husband telling me we were matched with a sibling set of SIX! That would be pretty exciting and crazy all at the same time. Then I woke up so I don’t know anything else about my dream family.

In December, our county social worker (all foster/adoptive parents have a social worker) called to schedule a meeting to update our home study but I had to tell her that we needed to put it on hold until the summer. This summer we are moving out of the little house in the country and back into our house in town and so we don’t want to put little ones that have already been through so much through another big life change.

It makes me so sad because what if the perfect kids for us get matched with someone else, but then are they really the perfect kids if the timing isn't right? God knows exactly what our family is supposed to look like, so I just keep praying for our kids because it’s likely they are already born.

Thursday, January 23, 2014

Baby M 6 month update

I wanted to post sooner since Baby M turned 6 months on Saturday, but on Friday morning I found out that a newborn baby, born to a mom in my kidney disease support group, had passed away. Her little one was born at 25 weeks and it brought back a flood of emotions since my NICU baby was born and died at 25 weeks also.  Her little one was a twin and yesterday she posted a beautiful picture of the baby being held kangaroo style. I am so close to the mom’s in my group that I knew I would not be able to write a post that focused on Baby M, but now I am glad I can share an update with you today.

Baby M is the best little package I’ve ever received. Being her mom is more awesome than I ever thought it would or could be. Watching her learn more about this huge world she was born into is amazing. She has almost mastered rolling over from back to tummy and from tummy to back, sitting up, and she is becoming an excellent singer.

It’s not always easy to take care of a little 14 pound wiggly baby, but it is the most rewarding task I have ever undertaken. Some nights I have to get up at least every hour to go settle her back to sleep, and that’s hard. Then I remember back to when I was in the NICU with Malakai and I am simply so thankful that she is HERE with me, in my arms, and healthy. Those late night baby snuggles are pretty sweet too, even if I am barley able to walk into her room or we both fall asleep in the glider.

Etsy art, could not find the artist.
Baby M has brought some amazing people in my life too. The ladies that pump extra breast milk so that she can be nourished are amazing. One of them is naturally on a mostly dairy free diet and after a day or so of just her breast milk I commented that she was doing so much better and the other mom said she wouldn’t mind giving up dairy for her too.  My gassy little baby is hardly ever gassy now and if anything made a night of sleep difficult it was a gassy baby. The more I get to know the amazing ladies that pump for us the more I feel like they become a part of our family.

I also could not write a post about my little bundle of sweetness without talking about how awesome my husband is as a dad. Baby M loves him so much and it is evident by the way she looks at him. I also know he loves her so much and he takes great care of her. I’m going to enjoy watching their relationship grow. I have always been a daddy’s girl and I have a feeling Baby M is going to grow up a daddy’s girl too.

Being a stay-at-home mom to baby M and a stay-at-home wife to my husband is the best job I have ever had. Yesterday, I got a call to schedule an interview for a very good job that I had applied for but after hubby and I talked about it I knew I didn’t want to miss out on all the time I have with Baby M.

I love my little family that God has blessed me with, it is better than I ever thought it would be and thank you for caring about us and reading my update.

Tuesday, December 3, 2013

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.

Tuesday, November 12, 2013

Feed Me

This week baby M turns four months old. I look at her and wonder where the time has gone, it has flown by. Before she was even born I started preparing myself for feeding her. I bought cute nursing covers, nursing tank tops, and lots of Lanolin. I didn’t even think about bottles, I was confident things would work and I wouldn’t need them. I’m sure I’m not the only one that goes into parenthood thinking that nursing is going to be so easy and such a great time of bonding. The truth is that for us it didn’t come naturally and I wasn’t sure what I was going to do, every time I tried to latch her all she could do was scream. Truthfully, all I wanted to do was scream too.  I felt like a failure and I had no clue why it wasn’t working.

Pumping made me feel a little better, at least she was still getting breast milk. Then the reality hit that I wasn’t producing enough to feed her and I still had to pull out those cans of free formula they send you while you’re pregnant. What a huge let down! (too bad not the letdown I read about that happens when your breast feeding though) I tried so many things to get my body to produce more milk but all of it only made minor improvements.

One night I even remember accidentally hitting her head on the baby bed after a feeding/pumping session because I was so tired. Talk about feeling like the worst mom ever. The exhaustion of pumping at least every three hours for 45 minutes around the clock was starting to wear on me. I knew that I wasn’t going to be able to do it for much longer because I wasn’t getting any sleep and my body wasn’t able to heal from the traumatic delivery. I also knew that I needed to start taking a medicine that would help my kidneys function better but was not safe for breastfeeding.  I prayed that something would get better because I was so discouraged.

Freezer Stash of Breast Milk
A best friend and I were talking about how hard it has been and I mentioned that I was even thinking about using donor milk and then she mentioned she had a whole freezer full that we could have. Her little girl is just a couple months older that M and she was pumping everyday because she had so much extra her little one wouldn’t eat and that’s when I really started to seriously consider donor milk. Her stash lasted over 2 weeks before I found the Human Milk 4 Human Babies milksharing network. I quickly had a mom respond to my wanted post and I ran to look and see if what I had stashed in the freezer  would last until we were able to go pick it up. I remember counting and thinking to myself that I didn’t think it would last. The morning we were leaving to go get it I looked again in the freezer and saw we still had a few ounces left. I remember the miracle that Jesus did when he took the 5 loaves of bread and 2 fish and feed thousands and I felt like I had just experienced a similar miracle.

We drove over 2 hours to pick up our next stash of milk and I was again amazed at how God was using women to provide for my baby. This mom had been pumping for months and like my friend, her baby would not drink the pumped milk from a bottle. She didn’t know what she was going to do with all the milk until someone told her about Human Milk 4 Human Babies  It was amazing; her entire freezer was full of pumped milk that she had been storing since before I had found out I was even pregnant. I was amazed that it felt like God was setting everything in motion to take care of M before we even knew she was going to be here.

Next, I found a mom that is local and she has been just as amazing. She pumps everyday for us and she has even taken supplements to increase her supply so that she can give us extra.  I’ve been totally blessed to see others give so much of their time to help us. She has even picked milk up from another mom to give to us. The mom that she received the milk from is also amazing to pump. She was a surrogate mom and she is still pumping for that baby and is giving the extra away. I am totally amazed by the amount of love that these women have shown us. Lastly, I get fresh milk on Monday, Wednesday, and Friday from a friend I went to high school with. She has five little ones at home to take care of and she amazes me with her generosity.

What’s even more amazing than these moms has been witnessing how God has taken care of our needs. It is amazing to see how the timing of everything works out so that we have not had to give one single drop of formula to our little one since I made the tough decision to stop pumping and feed donor milk, and if you haven’t read my latest update on my kidneys, since delivery my kidney function has returned to what it was before pregnancy. Read that update here:

So let me take this moment to say thank you to these awesome moms, my baby is growing and thriving because you take the extra time to pump for us. We love you!

You made all the delicate, inner parts of my body
    and knit me together in my mother’s womb.
Thank you for making me so wonderfully complex!
    Your workmanship is marvelous—how well I know it.
You watched me as I was being formed in utter seclusion,
    as I was woven together in the dark of the womb.
You saw me before I was born.
    Every day of my life was recorded in your book.
Every moment was laid out
    before a single day had passed.
Psalm 139:13-16

Wednesday, October 23, 2013

October 22, 2013 Dr Appointment Update

I had an appointment with my nephrologist yesterday. After the delivery of Baby M three months ago I hemorrhaged and that caused my kidney function to drop drastically. It was around 17 percent function and that was pretty scary. My nephrologist had said that it would come up but he didn’t think it would return to what it was before I got pregnant.

I’m so excited, amazed, and thankful to say that my kidney function improved back to what it was before I got pregnant! It may be a percentage or two lower but the numbers change from day to day so I’m going to say that it’s back to normal. It makes me feel good to know that the pregnancy went well and didn't cause any loss of function. Just in case you’re wondering my function before pregnancy was between 25-29 percent.

My cholesterol was high, and I know that a lot of girls in my kidney support group have high cholesterol but I’m hoping that it was just a onetime thing since we have been eating a lot of convenience foods since we brought Baby M home but we are getting better about eating healthy. We didn't add any medicine for this and I hope when I go back in 3 months it has improved.

My protein was higher than before, and I’m spilling right at 1.5 grams. Anything under a gram is considered good so this makes me a little nervous. As my kidneys spill more protein it causes more scar tissue and a decrease in function. He was not worried about it and said that it was not a lot but we did increase one of my medicines (Enalapril) that help with the protein spillage. I was taking it before I got pregnant as the only medicine to control my blood pressure but this time we are using it at a lower dose and the medicine I took during pregnancy (Procardia) at a lower dose. He said that even though it can help with protein it can actually cause my function to get lower. I think that increasing it just a little is a happy medium.  Enalapril is not safe to take during pregnancy or breastfeeding but he said that staying on the Procardia at a lower dose would make it easier to stop taking the Enalaparil when we start trying again.

I’ve heard several people say that I should not get pregnant again and chance my kidneys getting damaged resulting in dialysis or a transplant. The reality is that my kidney disease (FSGS) is degenerative and even if I don’t get pregnant again they will eventually stop working and I will need a transplant or dialysis.

I will go back in three months to see if the medicine change has helped and I’m praying for the protein to be reduced and more improvement in my function.

Thank you all for praying that my kidneys would get better.