Stable January 31, 2007

I received my test results yesterday regarding the mass found in my chest last wednesday. The test done was to rule out a muscle weakness condition called myasthenia gravis. My test was normal, thankfully! So what is the mass in my chest? “Who knows” replied the Doc. He wants the CT scan repeated in 3 months. I can live with that, if it was serious or of major concern the doc would not have me waiting 3 months.

The Good news continues

I received a call from my Cardiologist a few minutes ago telling me that my Echo ( ultrasound of my heart) results from the ER last Wednesday looked great and I do not need to see her until March. She said she is considering me stable at this point. My EF (Efficiency of my Heart) is still at 40% but that is only 10% away from normal so that is just fine. She told me stable does not mean I am restriction free. So I have to remind myself that I need to take it easy and limited physical activity as much as possible. I over did it last week which is why I ended up in the ER she said. I have to remember my heart is still healing and once my EF hits 50% I can slowly increasing my physical activity.

I am so ok with all of this and feel I have so much to celebrate right now. My card told me that Cardiomyopathy does not hurt; most people do not know they have it until they are already in heart failure or close to it. She told me that the pain I am having is a mystery right now but she will get to the bottom of it. She continued to say that if anything I need to look at the pain as a blessing because it brought me to the hospital and caught this before it became really bad. Thank goodness for the pain in that aspect:)

I can live with the pain and not worry, God is obviously taking care of me and so now I put this all in his hands and I carry on loving my family, myself and life:)

A BIG THANK YOU
To my fabulous husband Eric for supporting me, loving me, praying for me, listening to all my concerns and worries and helping me with the household chores! To my precious Noah and Silas for being so patient and such good boys and letting mommy get rest and for their innocent, unconditional love!
To my parents for watching the boys so much and for all their love, concern, prayers and support.
To my Brother Joe and sister-in-law Nina for helping out with the boys and for all their love, concern, prayers and support.
To my sister Joy and Wayne for helping out with the boys and for all their love, concern, prayers and support.
To my Dear Friends and Family (you know who you areJ) that have listened to me for countless hours rambling about my fears, concerns, latest research finds:) and just the typical Juliana rambling and for their love, concern, prayers and support.
To all my fellow PPCM sisters from the a mothers heart website, for their round the clock support, advice, concern, and prayers.
To Dr. Fett for answering all my e-mails right away for his honesty, his expert advice and his genuine concern and support. I have never met Dr. Fett personally and he has given me more info and support then the docs I see at the office. Finally, to all my readers!
I am excited to start my new day of no worries or concern so with that said I am off into the sunshine:)

Not so sure about this

So i loved the idea of switching my blog to weblog but now i am not sure because as you can see the font and size is all over the place.  I am very anal about that i like the presentation to be uniform ya know.  Anyways i have to play around with the code and do not understand code  and really like i have the time to sit around a learn code

Stay tuned!

Welcome January 28, 2007

Welcome to my new weblog.  I like the weblog better than blog:)  Not much new in the life of Juliana.  A couple new health concerns but other than that just the same old stuff.  I have been having a weblog block…I guess you can say I am taking a bit of a brake.  I will keep you posted on my health when I get my latest results back.   Just to bring you all up to speed. I had a CT scan of my chest on Wednesday and they found a small mass in the middle part of my chest.  My Doc is not at all concerned that it is a cancerous tumor or anything like that right now. He has run some blood work to see if it is something called Myasthenia Gravis it is a muscle weakness condition. It is a serious condition but completely treatable and not life threatening. 

So of course I did some research on this condition and read that beta-blockers can cause this and I am taking beta-blockers for my heart. This is rather interesting becasue the mass is small and newly formed.

I am not worried I am over it all! Whatever cards i am dealt, i will play them as best and positive that I can. I should have results back by Tuesday! I hope you are all well!


Video of Great Grandpa and Silas January 16, 2007

Click on the link below to see an adorable short video clip of my grandfather singing a Russian folk song to Silas.
My mom, the boys and I went to Ohio to visit my Grandparents just after Christmas.
Stay tuned for some cute photos of the boys with their Great Grandparents!
http://www.youtube.com/watch?v=tPE1ct-Kx2M
P.S. Excuse my obnoxious laugh:) in this video:)

An interesting twist January 12, 2007

On Thursday evening after the kids were in bed I sat down at the computer with a fresh cup of Mother’s tea and began my research. I was determined to find out more about the virus I contracted, coxsackievirus B4.
In the past couple days I would google this virus and get a whole bunch of information that just made no sense to me. Frustrated with not knowing what this virus is and how I could have gotten it i decided to search harder
So last night I goggled it again with just a little different wording and the first site I click I read the following…

Coxsackie B4 virus is a virus which can trigger an autoimmune reaction which results in destruction of the insulin-producing beta cells of the pancreas, which is one of several different etiologies of diabetes mellitus.

“OH MY, I FIGURED IT ALL OUT” I proclaimed
“I’m so cool, I’m so cool” played in my head for several minutes while I i read and reread the above.
As many of you know Eric was diagnosed with Diabetes in Oct of 2004. Considering it did not run in his family and he was not overweight and did not seem to have any of the risk factors for type1 diabetes we ask his doctors how he could have gotten this and they said a VIRUS. We never pursued what virus, as we were not given the option.
So after reading the above last night, I immediately sent an e-mail to my trusty online doc and asked him the following.
1. Is coxsackievirus B4 linked to be a cause of viral onset type1 diabetes?
2. Is coxsackievirus B4 contagious?
Knowing this is not his area of expertise I hoped for the best:)
He replied stating that my findings were correct and that coxsackievirus B4 is INDEED CONTAGIOUS!
I cannot believe it. After thinking that how, when and where I contracted this virus from will always be a mystery, I may have just figured the mystery out all by myself without a day of medical school:)
Now do not get me wrong I am not at all 100% sure this is how I contracted this virus nor am i 100% sure this is how Eric got diabetes, but it sure makes sense to me!
Now this leaves me a little worried that i may still be contagious therefore worried that I may pass it to the boys. I am not supposed to see my infectious diseases doctor for 2 months but I may just need to put a call into him, just to ease my mind a little.

A Rarity January 11, 2007

So it turns out that once again I am a rarity. As many of you know when I was prego with Noah my Hcg levels did not rise as they normally would making the doctor declare a miscarriage and wanted to do a D&C immediately. Since i had a gut feeling I was not miscarrying and had no symptoms of miscarrying I did a little research of my own and discovered that only 15% of women Hcg levels do not rise as they should. So I choose to get a second opinion instead of a D&C and thankfully I did as I fell into that 15% and my fetus was indeed thriving.

So I am now learning that only about 1000-1300 women are diagnosed with postpartum cardiomyapothy each year. When I came home from the hospital I started doing some online research and I found an online support group for women with PPCM. (postpartum cardiomyapothy)
Through this website I met a doctor who’s practice is strictly for PPCM issues.
He has informed me that he would like my records to publish my case; because evidence is mounting that a virus like in my case may be the cause or trigger for PPCM. He told me it is very important to document cases such as mine so they can continue to see what exactly causes PPCM.
I am becoming quite passionate about this, as I have heard so many stories of women who died due to post labor complications such as PPCM, and other heart and lung issues. Dr. Fett(the online doc) says that most women have symptoms but ignore them as just part of the normal experience of pregnancy and giving birth. I cannot help but feel that if we educate women on these post birth complications, more women might take their symptoms seriously and be treated.

For the second time I am reminded how “trust your instincts” is really important. I trusted my instincts when they told me I was miscarrying with Noah and because of that I did not have a D&C instead I had my first beautiful baby boy.
I am told that if I would not have acted on my symptoms and gone to the ER when I did, my situation may have been much worse. Now my heart at least has a chance of repairing itself! Prasie God!

Were finally getting somewhere

I received a call from my Doctor on Tuesday afternoon informing that I have Viral
Myocarditis.
I contracted the coxsackie typeB4 virus. When, where and how will always be a mystery. This virus weakened my heart muscle, making my heart not pump as efficiently as it should. They have still not ruled out postpartum Cardiomyopathy
as they are finding that viral Myocarditis is the trigger for postpartum Cardiomyopathy. This is about all I know right now. I have a doctors appt tomm and will hopefully find out more then!

Just a few of my favorites January 7, 2007

smiley Silas

Never too young to order at the restaurant

Noah and Alexander with Grandma

“OH WOW, OH WOW, OH WOW” says Noah looking at the ornaments from under the tree with our family friend KJ