CMV and pregnancy #3

When I was about 9 weeks pregnant we went in for our first prenatal appointment. Since it was the first time they would try to hear the baby, I wanted Jeff to go with me in case something was wrong. I tend to worry A LOT, so until I get to see that heartbeat I don’t even try to connect with the pregnancy or baby too much. At the appointment, the midwife asked all the typical questions, and everything was going fine. How could I possibly be on baby #3? It was just so crazy to me that I was going through all this for the 3^rd and probably final time.

It was finally time to check for the heartbeat with a doppler, she looked and looked and couldn’t find it. I of course started to panic; this must be why I haven’t been as sick, something is wrong with the baby. Finally she just brought out the ultrasound machine, and within a few seconds I was able to see the little heartbeat just beating away. It never gets old seeing that new little life, and I was so relieved. We left the appointment so excited and headed down to get some routine lab work done.

When I arrived at the lab, I signed all the usual papers, but they also asked me if I wanted to participate in this study that looks for CMV-cytomegalovirus. What even was that? I’m a health educator, so I am always up for helping science. I let them take an extra vile of blood for this study, sure that it would be negative and I didn’t really think of it again.

A week later I got a call from the midwives office, something had come up on my blood work. She asked me if I remembered signing up to get my blood tested for that CMV study, which I of course did. She then informed me that I was positive and that I needed to call the specialists and schedule a meeting to get more info. As I researched the virus on the internet, I was overwhelmed with information and totally freaked out. CMV is a very common virus, but when caught for the first time in pregnancy it can cause various issues for the fetus. There is about a 50/50 chance your body wont pass the virus to the fetus, but because I caught the virus in early pregnancy if my baby does get it the damage could be more sever than if caught later in pregnancy.

A few days later we met with the specialist. We had an ultrasound and at that time, everything looked fine. They sat us down after and discussed this study that was currently being conducted on women who were infected with CMV for the first time during pregnancy. Basically you are either given an iv filled with immunoglobulin, or you are given placebo. The infusions take 6 hours and are given every 4 weeks during the remainder of your pregnancy. Also, after the baby is born they do additional follow up to look for hearing loss and other issues. Right now, all the treatments for CMV are pretty experimental, so most insurances won’t cover them and for most people they are too expensive to just pay for out of pocket. So, after taking the weekend to think about it, Jeff and I decided to enroll in the study.

Right now, I feel like we are in a limbo of sorts. So far, baby looks healthy but I cant help but worry that maybe we wont be one of the lucky ones who escapes the virus unscathed. At the 20 week ultrasound, we will have a better idea of how baby really looks and if there are any issues with its development. There are so many emotions because usually you look forward to that big ultrasound and gender reveal, and while I still look forward to it, its mostly to know what our future is going to look like. And even then, things are pretty unsure. I have to remember that most babies that end up getting the virus still end up healthy and happy, but everyday I still think about the worse case scenario. I think it’s normal to worry about the baby in any pregnancy, but when you know you are carrying this virus that could greatly impact your baby its like I actually have something concrete to worry about.

I plan to write about the pregnancy on this blog, because it’s been alienating and writing is a therapy of sorts for me. I also think women need to know about this virus. It makes me so mad that they don’t screen you for the CMV virus upon childbearing years just to see if you have had the virus previously and have antibodies. Often children are the biggest transmitters of the virus, so if you know you don’t have immunity you can be even more careful about coming in contact with their bodily fluids. They assume I probably got the virus from one of my girls. We share drinks, treats, even breakfast sometimes, so I feel like if I would have known I didn’t have immunity to this virus already, I could have been really cautious about continuing to share with them.

I have my second infusion in a week and a half, and then our 20 week ultrasound is at the end of September. Regardless of what happens, this experience has taught me so many things already. I have been really grateful for the medical professionals who have watched over me and the baby, and I know I’m blessed to be surrounded by the best care I could hope for. Sometimes, I wish I had never signed up to get my blood screened. Most ladies that are infected with CMV in pregnancy don’t even know they have had it. It’s only until something shows up with the baby that they find out. So now I just sit with the knowledge that I contracted this virus during an imperative time in development, but for now we just wait to see what that could mean. My body has grown two big healthy girls before, even when I struggled with my health. So I have hope that it can grow a healthy baby again and protect it from the effects of CMV. Each day I am trying to choose faith over fear. And some days I am better at it than others!

An update and a change in plans

Well, a few people have been asking how things are going with this new eating plan so I figured it was time for an update! The first few weeks of starting my new eating plan were rough. My head hurt and I had very low energy. People had warned me that it would happen, and it certainly did for me!

After that initial “withdraw” things started to get better. I was making it through the day without feeling like I had to take frequent breaks on the couch. My physical symptoms also started to improve. I wasn't missing out on things because of my frequent stomach aches and running to the bathroom at inconvenient times. To be honest, I felt better than I had in a long time. Sometimes it was hard sticking to the eating plan, and sometimes I didn't make the best choices, but overall things were going well.

In June, we found out we were expecting a baby again. To be honest, we were shocked! With my second daughter, it took us a while to get pregnant so we planned on it taking even longer this time. For me, it was just confirmed that the changes I had been making taking care of myself were improving my health. We were so incredibly grateful. Later I read a few articles that eating this “paleo” lifestyle can improve your fertility. Should have read those a few months ago!

Anyway, I don’t do pregnancy well, and was really worried about how I was going to do this time around. I usually drop quite a bit of weight and spend months not being able to keep much food or liquid down. As soon as the nausea kicked in those eating changes I had made months before were out the window. It was impossible to eat meat and veggies when just the thought of eating them was enough to send me to the bathroom. At first I felt guilty, but as I read many Instagram posts from moms who we also going through the same thing, abandoning their old caveman eating ways, I realized it didn’t matter and eventually I could start eating that way again when I could.

Luckily, this pregnancy has been a little more bearable. It hasn’t been easy, but I would say I maybe have more typical morning sickness. We don’t know the gender of the baby yet, so who knows if that is why I have been feeling a little better this time.

I’m currently 15 weeks along, and symptoms aren’t really improving so I am still just sticking to eating the foods that I can stomach. I still try to make healthy choices, but now is not the time to obsess either. Hopefully as pregnancy progresses I can get back to eating like I was before, because I know that it was working for me. Right right now I eat what I can get down, but try to make the best choices that I can.

My Treatment Plan

The same day of my last episode, I decided to take action and call into a few doctors offices that I had been waiting to call. All were homeopathic and all came highly recommended. Well, the soonest appointment available with any of those doctors was in August. And the one I really wanted to see was out until October! I know time goes by so quickly, but I couldn’t wait until August to at least TRY to figure out what was going on by myself.

That day I was able to connect with one of my friends who is a Chiropractor. I had contacted him with some questions I had, but he asked me what was going on and told me he thought he could help. He has been wonderful and I’m so grateful for his interest and compassion. So, with his guidance I am trying a few things to get to the bottom of my symptoms.

Now, here is the disclaimer. I am not a doctor and this is not medical advice. I have done loads and loads of research and am full of information, but what I am doing is based on what I have learned and what my beliefs about my own condition are.

All I really know for sure right now is that my gut is unhappy. I have come to believe that a lot of our health really comes from our gut, so if its not functioning well we may see symptoms anywhere in our body.  I have a lot of ideas about what caused it, and I have a lot of ideas about what may help. So the only way to get to where I want to be is to take action. I have preached an ant-diet lifestyle in class after class since I graduated college, and I truly believe it. This is not a diet. I am trying to heal whatever is going on in my gut and from the research I have done its going to take some work. But, I am willing to sacrifice some pleasures now if it means I will be better off in the future.

About 6 weeks ago, after doing some research, I decided to cut out gluten. I had read that some researchers believe there may be a link between gluten sensitivity and gallbladder disease, so I figured it was worth a shot. I can genuinely say it was helping. I wasn’t feeling as sluggish and my stomach seemed more settled than it normally was. However, I experienced another episode in the midst of being gluten free, so to me that said that gluten was not the only piece of what was going on.

About a week ago I started a new supplement regimen. Right now I am taking enzymes before every meal, as well as a supplement that is supposed to kill off the bad bacteria in my gut. In another week or so, I will start a new pre and pro-biotic to build that flora back up again.

Here are the highlights of what I’m doing diet wise:

Can't Haves:

Added sugar

Lactose

Grains

Legumes

Can Haves:

Most fruits and veggies

Meat, poultry and fish

Most nuts and seeds

Healthy fats

Now like I said, this is based upon my own experience and my own research and the help of my friend. If you are familiar with Paleo or Whole 30 it is similar to those, but I’m not doing this to drop weight or challenge myself. It’s purely for health reasons. Trust me, I wouldn’t give up a sugar cookie if I didn’t have to.

I am about a week in right now, and I have to say it has been challenging. It’s almost like my body is throwing a tantrum that I am eating so clean. Like I said previously, I was a pretty healthy eater before, but I still loved a little chocolate or added sugar now and then…and doughnuts. Part of my reaction may be the supplement I am on also, but right now I am tired and a little bit grumpy and underfed. It’s hard to get enough to eat sometimes, but I am working on that-I just need to do a bit more prep work! I think I am headed in the right direction though, and that feels great! I don't know how long this regimen will be necessary, but my gut (no pun intended) tells me I will need to do it until my gut is healed, and right now there is no way to know how long that will take.

I will probably write more about this later, but if you too are struggling and looking for more insight here are some things to look into.

1. Leaky Gut: I had never even heard of this until a family member of mine was diagnosed with it recently, but it is fascinating. After doing some research I have come to believe that it may be what’s going on with me too. Hence the diet modifications. http://www.wholehealthchicago.com/2894/understanding-leaky-gut-syndrome/
2. The Standard American Diet: (ironic that the acronym is SAD). http://www.nytimes.com/interactive/2011/07/24/opinion/sunday/20110724_SAD_Timeline.html?_r=0
3. Antibiotic use. I was on these constantly as a baby and we just didn’t know back then what they were capable of.                                             http://www.sciencedaily.com/releases/2013/07/130703160623.htm
4. My friends and Chiropractors website.                                                        http://livingelevatedfmc.com

Some other things to consider if you have an un-diagnosed health condition that you are struggling with.

1. No one knows your body like you do or cares about it as much as you do.
2. Your symptoms aren’t imaginary, not matter what anyone says.
3. You are not alone.

Well, I could talk about this topic forever, but I will refrain myself and stop there so I have more to post about later! If you have any questions or would like me to address anything specific in future posts let me know. I have to say, we are so incredibly lucky to have the internet, Yes, it can be a curse at times too, but valuable information is literally at our fingertips, and for a girl that doctors cant figure out, that is pretty amazing.

Life Without A Gallbladder (part 3 of 3)

I remember waking up in the recovery room of the surgical center, feeling like I had been run over by a semi truck. I really just wanted to perk up so I could see my husband, but my eyes were just too heavy and I kept drifting in and out of sleep. Eventually, they were able to wheel me out to go home. Anesthesia and I are not friends, and honestly coming out of that was the worst part of the entire surgery for me.

My husband was headed out of town for a few weeks to Jackson Hole, so it would just be me and my little 22 month old at the house during that time. Things went pretty well. I was sore, but my chronic back pain had dissipated and overall I felt surprisingly good. A week after surgery I decided to take the trip back up to Jackson with my husband, since both my daughter and I were going a little stir crazy being cooped up. On the way we made a pit stop and grabbed a few treats for the rest of the trip. I don't remember exactly what I had, but I believe it was a flavored water and some kettle corn. Well, as we were in the car about 30 minutes later, the sulfur burps started and I began to panic. We were able to make it to the condo, but I spent the next few days in and out of the bathroom as my body did what it had been doing for months. How could this be happening? Here I had this major surgery and within a week I had another episode. I was so devastated, and being up in gloomy Jackson Hole sure did not help make me feel any better. I wanted to be home. I think that's still why I'm not too fond of that place!

Well we hoped and prayed and luckily that was the last episode I experienced for a while. Over the next year we were able to get pregnant with our second daughter, and for the most part I felt okay. Her pregnancy was really rough, but I was just so grateful to be granted the gift of having another baby. My body and I were at odds a lot, but somehow it managed to carry these huge babies to term, which still astounds me.

(My second sweet squishy daughter, born October 2012, 8 pounds 10 oz.)

After the birth of my second daughter, I had a lot harder time bouncing back than I did with my first. I figured that was normal with your second, since you go into it being exhausted! Well, I kept waiting to feel better, but I just continued to not feel like myself. We had good days and bad days, but I was much more emotional and depressed than I ever had been. I kept telling my husband I felt like something was wrong with me, but I couldn't put my finger on what was going on, I just felt like I was in a fog most of the time. I would get a full 8 hours of sleep and by noon I would have a hard time staying awake. Again the guilt set in. We were spending too much time in front of the TV while I slept on the couch, an all too familiar story.


Well my youngest is now 19 months old, and about 6 weeks ago I had another episode; the first one in almost 2 years. At first I thought it was maybe a fluke, but  3 weeks later I had another one which confirmed to me that it was probably not a coincidence. My stomach has had its issues since my surgery, but its these few days of stomach flu like symptoms that are really challenging for me to deal with. Both physically and emotionally. I personally feel like all the symptoms I have been experiencing are connected; the fatigue, the fog, and the stomach problems.

So...that's where I am right now.

I have to say I am scared, because I don't want to go through what I went through last time. It was so difficult on my body, and I worry about what will happen if I get that sick again. But, fear often prompts change and that's what I am trying to do, find the root of what is making me feel sick and hopefully avoid what happened to me before.

I cannot tell you how frustrating it is to know so much about health and nutrition and not be able to "fix" myself. I tend to follow a little more of the Eastern medicine route, so I really believe there is something in my diet that my body just does not know how to handle or that my gut is just too sick and leaky to process much at all. I am a very moderate and healthy eater in general, but apparently that isn't enough any more.

I wanted to start writing to document my journey, track my progress and share my story with others who also may be struggling. Its so overwhelming to try and figure out what the issue is, when there are about 1,000 things that it could be. But I do have hope. Hope that with the help of professionals and a lot of prayer I will be able to live the best life that I can and find the answers I yearn for. I am incredibly lucky to have the life that I have, and even if this is something I have to deal with forever, I know others have it far worse than I do. Everyone has something, don't they?

On Thursday I will be updating you about what my treatment plan is at this point and how things are going so far. Thanks for all your kind words and messages of support! I cannot tell you how much they mean to me.

Apple juice, Gallbladders and The 3 F's (part 2 of 3)

After that very disappointing scope, I was feeling pretty defeated. Of course no one ever wants to receive a detrimental diagnosis, but sometimes it gets to the point where you wish someone would just put a label on what you are experiencing. I was so grateful everything looked ok, but I didn’t know how much longer I could keep living like I was. Of course I could, but the task seemed insurmountable at times especially with the lack of answers or understanding.

I decided to go ahead and make an appointment with another doctor in the area to see if he had new insights. I arrived to my appointment with my daughter in tow, I loved having that girl with me even though all these appointments were probably well out of her range of comprehension. After a few minutes they took me back and the jovial nurse had me get on the scale. I didn’t have one at home, so I wasn’t really sure where my weight was sitting. I don’t remember exactly, but I believe my weight flashed at around 105 pounds. I mumbled under my breath about how unhappy I was with that number, to which the nurse exclaimed, “That’s great! I wish I weighed 105 pounds. Other moms would love that.” Seriously? Who says something like that?! I think 13 year olds can weigh 105 healthily but not a grown woman who was 5 feet 6 inches tall. After her comments (and I realize she probably had no idea how unsympathetic she sounded) I wasn’t very hopeful for the rest of the appointment.

The doctor came in, and again I explained all my symptoms. He told me that I looked great and decided to run some simple blood tests and sent me on my way. Yet again I left feeling worse than when I went in.

The episodes were getting worse and I was spending hours searching the internet for some kind of clue. I tried probiotics, homeopathic parasite cleanses, as well as dietary interventions and nothing was working. The more I read the more I wondered if my issues were being caused by my gallbladder. I had talked to the GI doc about it, previously, but he said I didn’t fit all of the 3 F's that usually accompany gallbladder problems-fat, female, and over forty. Nice huh? So obviously I was female but the other two criteria eluded me. The doctor had said if I wanted to go down that road, he could order the tests to check my gallbladder status. Since I was out of ideas, I went ahead with setting those up as quickly as possible.

The day came, and again I went in for more testing. They were planning to do an ultrasound as well as what is called a hida scan that looks at the ejection fraction of the organ. The ultrasound was first, and as the tech poked around my gallbladder I became very nauseated and it was very uncomfortable. After the ultrasound, I went down the hall to have the hida scan. The tech there was so sweet and had the whole room decorated in a patriotic theme. For this test they inject what she called a “liquid cheeseburger” into my body and wait to see how my gallbladder reacts. A couple hours passed and the test was complete. I didn’t feel great, but I wasn’t feeling horrible so I had convinced myself that this test too would come out negative. Well to my surprise the test did show that my gallbladder wasn’t functioning well, and the tech told me it was very sick and needed to come out, and to expect to hear from my doctor shortly.

Well, I never did get a call from my doctor so my sweet mother-in-law actually went to the hospital herself to pick up the test results. Luckily, we have an uncle in the family who is a doctor and was so wonderful to get me a referral to a highly recommended surgeon that both he (ER doc) and my mother-in-law (respiratory therapist) felt good about. They all worked in the same hospital and I was assured he was the best.

I was quite nervous for the surgery, but the surgeon gave me a 75% chance that it would help me. Not the best odds ever, but we were desperate at that point. My eccentric hippie side was so worried about getting an organ cut out of my body, but I had exhausted all other avenues (or so I thought) and didn’t know what else to do. I had been living off apple juice and bagels at that point and who can do that forever?

Well the day came and they wheeled my 12 year old lookin’ bod to the operating room (I weighed in at just around 100 pounds at surgery). I was met with the same response I had heard before, “Well! You don’t meet the 3 F’s!’ (In my un-solicited opinion doctors need to stop using that term behind patients backs) “Don’t worry,” the nurse said, “you are in great hands.” I hoped what she said was true and that this surgery would be the end of my struggles. And within a few seconds I was off to la la land for one of the best naps I had since becoming a mother. I wish I could say that was the end of my journey, but apparently there was more in store for me to learn.

(right before surgery...I look scary, but I sure was excited)

Where it all began...(part 1 of 3)

First off, I just want to preface this post by saying that I genuinely do not feel like I am a dramatic person. I'm not writing about my life because I think it is awful, I love my life. However, I have had the feeling over the last few weeks that I am not alone in my story, and that I should share it with others. I cant tell you how many people have come out of the woodwork with similar histories once they heard about mine. Some people are not into personal sharing on the internet, and that's fine with me. But to be honest, so much of what populates the internet is about the way things visually appear. We see beautiful homes, perfect children, incredible looking parties, which is so fun to look at and enjoy. But I want this blog to be about what’s going on behind all that perfection. Because we are real and I think through sharing what’s real we become better people. So, here we go!

In June 2009 we welcomed our first little girl into the world. I had studied and practiced hypnobirthing for months, and was able to have the natural birth I had wanted. After her birth I felt on top of the world. She was a beautiful baby, and even with some challenges my recovery went pretty well. She had acid reflux, so we spent the first few months of her life a bit overwhelmed and very tired. Eventually we got that figured out and really enjoyed being parents. A few months after her birth, I started to have a lot of stomach issues. I often had lots of gas, bloating and the dreaded diarrhea (it kills me to write that on a BLOG! But it is what it is). I had always had stomach problems, but they were definitely worse than they had been before. I made an appointment with my OB in hopes these issues could have something to do with my birth or something. I brought my mom along for moral support and I was so glad to have here there with me. At the appointment, my OB sat down with me and asked me what my symptoms were. I told her and she asked a few questions. She asked me about the medication I had been on to increase my milk supply (which was always a struggle, btw. Holy cow). Anyway, I told her it hadn’t really worked well and I had not been taking it. Well after that point she didn’t listen to a word that came out of my mouth. She was convinced it was the medication I had been on that was causing my stomach problems and would not entertain any other ideas. I knew it wasn’t, since I had not been on the medication for months and only took it for a short time, so I left feeling pretty defeated and unheard.

For the next year or so I just dealt with the issues on my own, and they weren’t too bad. I just had to make sure I was never too far from a bathroom but for the most part these symptoms weren’t keeping my from living my life. Well, one night shortly before Thanksgiving in 2010 I decided to do a late night shopping trip to Wal-Mart. I wanted to get a few Christmas items purchased before the big rush happened. As I was checking out, and be prepared this is TMI, I got what I like to now call a "sulfer burp". Some of you may have experienced these yourself, but if you haven’t a less politically correct name to call them is "egg burps" and they are about as disgusting as anything I have experienced. I got out of there, and continued to have the burps all the way home. I started to become extremely nauseated and decided I must be getting some sort of nasty stomach bug. Well that night and into the next day my body pretty much got rid of anything I had in my stomach. I had never seen my stomach and intestines gurgle and move like they were. It’s like some animal was trapped inside there. Gross. So after a few days I was a few pounds lighter and a bit weaker, but I returned to life as normal and didn't think about the episode too much more.

That is until I had another one a month later.

I remember thinking that maybe I had another stomach flu, but knowing it was strange I was the only one in the family sick. Well these "episodes" as I like to call them became worse and worse over the next few months. Instead of happening monthly they were happening weekly and even started happening multiple times a week. I was miserable and felt utterly alone. These episodes would knock me out for a couple days. I felt horrible as a mother as well. My daughter and I spent many days on the couch watching movies and TV...which really bothered me. I think she came out with a sweet disposition for a reason because those months were HARD. I had learned it was best to just let these episodes run their course because nothing I did helped. I had to fast for a day or so before I could reintroduce foods into my diet. But it was just usually a matter of time before I was sick again.

I decided to go to a gastroenterologist in Bountiful to see if he had any ideas about what could be going on with me. He was nice, and at our appointment he ran some basic tests, and of course those all came back ok. He told me to cut out dairy and return in a few weeks to report what had happened after this dietary change. Well the episodes continued so when I went back in he decided to do an upper GI scope to check things out. The day of my scope came and I was so hopeful he would be able to find something. I had lost quite a bit of weight at this point and I remember lying in the procedure room freezing because I had little body fat to warm myself up. I remember waking up to my sweet mom in the recovery room, I was glad to see her. After a little bit, the doctor came in and informed me everything looked normal and he wasn’t sure what was going on. I started to cry. How could that be? How could I feel like this and everything look ok? My mom told him about my weight loss, and he said, "Yeah, she is pretty little." He decided I had IBS (even though I have since learned its not normal to lose weight with IBS) and sent us on our way. I knew this wasn’t IBS, but what in the world was it?

More of my story to come. I don’t want to bore you all in one post!

A little about me

Hello! I'm Whitney, some call me Whit or Twitters, hence my blog title. I wanted to give a little introduction for those who may not know me. Currently, I am a stay at home mom and consider myself lucky to really love it. Its not work for the faint of heart but at the end of the day when I am covered in food particles and may smell a little like dirty diapers I am convinced its where I am supposed to be. Before I quit my full time job I was employed as a Health Educator. Health is my passion and I loved learning about all aspects of our health and helping others educate themselves as well. To make a long story short (details to come in future posts) after years of heath struggles myself, I have decided to blog about it.

I know, I know, every stay-at-home mom these days has a dang blog. Right? Well, it sure feels that way.

But after feeling so isolated and alone with my own issues, I figured there have to be more of you out there who are a lot like me. Doctors look at us and think we look good, so whats the big deal? Well, when my health started to change what I was able to do each day I started to get a little ticked off, its not good enough for me. That stubbornness and will to find change is what has lead me here. I am hoping to embark on a new journey to really figure out what is holding me back through different dietary strategies and any other homeopathic therapy I feel good about. Sure, I understand that I may not ever have 100% amazing days, but I hope through me sharing my journey I may be able to help someone else. And maybe you can help me through what you have learned through your own trials. I hope this can be a place where we can talk about what is real, good and bad. I will be updating more of my story soon! I would love to hear from you!