And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Thursday, July 1, 2010

Who is Your Hero?

Ours is God!!!

As we have said from the beginning, we want God to be the hero of this story!  After today, it appears that is exactly what is going to happen...

First, God continues to answer your prayers with timing...

We had our first appt. today with the OB dietitian.  She shared with me a few things that we will need to change for the sake of pregnancy and our little one's safety.  However, there aren't too many changes and we think these should be fairly easy transitions.  She is sharing all of those things with the Keto dietitian.  So, when we meet with her tomorrow, she will be able to design meal plans based on the new recommendations.

Second: as we were leaving that appt., we received a call from the cardiologist's office that he could see me sooner.  So, we went straight over to his office.  He said that my heart is healthy!!  That is a huge praise!!  I was told that my heart was 1/3 smaller than that of a healthy sedentary female & my stroke volume was 1/3 less.  He said that with the POTS diagnosis, my stroke volume might be lower while standing.  However, laying down, my heart is just the right size & stroke volume is on target.

Mayo is one of the leading research facilities with POTS.  This doc shared with us that the main thing they have learned is that it is not a cardiovascular issue, it is an autonomic issue; thus, treated best by Neurologists.  He used to treat POTS patients, but they no longer do at Mayo...he said that he can't tell me what to do, but he can tell me what not to do.  That is: Don't see a cardiologist for POTS.  Well, the only two docs we have found in Dallas that treat POTS are cardiologists.  So, we are going to need to uncover more there.

He kept stressing the autonomic aspect of POTS.  Throughout this journey, we have been told that my seizures sound autonomic in nature, but no one was really willing to give them a name.  This doc kept emphasizing how the POTS is autonomic.  So, we did some research on autonomic seizures and it's amazing how accurate this description even says to test your thyroid levels.  My first real health issue ever was when my thyroid went crazy in 2004.  We have been asking the docs about how it could play into all of this...every single one answered that it couldn't...well, we found some research today that stated otherwise. 

Thus, we were super excited about my appt. this afternoon with the endocrinologist.  We just knew that he would be able to put all of the pieces together and explain how my thyroid was the start of all of this...well, he said, "your thyroid numbers are fine.  Do you need anything else from me?"   Grrrr....
We tried asking the question fourteen different ways to get at the fact that just because we were supplementing the right amount doesn't mean that my thyroid is treated 100%.  He didn't agree and said that all he treats is the thyroid and if it was anything else endocrine related, he would have to send me on to another specialist.  So, he has referred us to another that we hope we can see tomorrow.

Finally, we went to see if we could get an appt. with the neuro (so that we don't have to come back on the 15th).  Though it was after 5p, he agreed to see us!!!!  WOW!!!  So, he basically told us everything we've already been told and said that he doesn't really know what to do, but maybe we should add another med. 

I asked why we would do that since I had more seizures on meds than I've had since switching to the Ketogenic Diet.  He said it's because I am still having seizures.  I kept trying to make the point that I'm having fewer than when I was on meds, but it kept going over his head.  So, we agreed to go home, pray about it, and talk about it once we are in the 2nd trimester.  Research shows that once you have tried 2-3 meds and they each fail, your chances are less than 5% that another will work.  I've been on nine different, the statistics are low!!!

Anyway, the final options that he offered are surgical and aren't yet approved.  So, it would be next year, at the earliest, before they could even consider those choices....However, he feels meds are the way to go...

It was so frustrating leaving his office and not feeling like we uncovered any answers.  So, this has got to be about the Lord & His healing.  We meet with the dietitian in the morning to look at the diet in more depth and see how we can better treat these...the man that brought his son (that had epilepsy) to Jesus for healing, was told by Jesus to Pray & Fast.  The Keto Diet mimcs fasting.  Thus, we keep telling ourselves this is a Biblical approach!!!  This is about God being the hero of this story since man can't seem to do it on his own!!!!!

All of this to say, we have an appt. with the dietitian and the pituitary specialist tomorrow.  Then, we should be headed home...your prayers are such a special gift to us.

Thank you & sorry I don't have any good pictures!!!

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