Thursday, April 28, 2011

Sunny California, Here I Come!

Well, it's been an interesting few months to say the very least.  Our family has gone through some significant changes, all for the best, and we've done a lot of learning and growing together.  We also went on vacation (see above pictures) for 10 days to New Mexico and Colorado which, though it was A LOT of work with 4 small children, was a blast. 
We also contacted the clinic in Southern California about treating my CCSVI with stents.  For more information, see I talked to the coordinator today and right now it costs $10,500 (not including stents), but they are going to start billing insurances soon.  So, they're going to call me next week after they've contacted my insurance and get me scheduled.  I know that some docs think stents are dangerous, but in my mind, having my blood not flow is also dangerous.  Feeling fatigued, dizzy, and in pain all the time is miserable, and the lack of blood flow is probably leading to more lesions on my brain and spine.  That's dangerous.  I guess Jake and I are feeling like stenting at this point is the lesser of two evils, and we feel good about moving forward with it.  We are going to continue to research and study on the subject, though, and if you have any information that you think might shed some light, good or bad, please feel free to share!  In fact, share in the comments section, so that more people than just me will see it.  We'll keep you posted, but right now, it looks like I'll be going in May or June.

Saturday, April 9, 2011

The Break Down.

Well, I talked to Dr. Hatch yesterday afternoon and he made it very clear that there is nothing more he can do for me.  He told me he's not willing to stent my veins and that he doesn't think my veins can handle much more.  Felt like someone punched me right in the stomach.  Jake came home from work at 11 last night and I just lost it.  I wept and wept while he held me for a long time.  I had held it together all day but I couldn't hold it together any longer.  It is difficult enough to have a husband, a home, and 4 children ages 7 and under to take care of while one feels normal and healthy.  But to try and do it all with very little energy and a whole lot of pain and dizziness is getting to be too much.  Something's gotta give.  I only have so much energy and there is so much to be done.  It's causing my children to suffer because I don't have the energy to be extra patient with them, or run and play with them.  It's not fair to them.  My greatest joy comes from taking good care of my family and home, and I feel like a failure every second of the day.  I had lost all hope and felt like there were no more answers for me.  After I finally got it together and took some deep breaths, Jake showed me some research that he had done on his breaks at work.  He told me that we are going to get someone to help with the housework 10 hours a week so that I can spend the energy that I do have on my children.  This morning, he called from work and said that there was a lady coming to look at the house and discuss a plan.  I am going to have to fight my tendency to feel guilty for not being able to do it all.  Before bed, Jake gave the most beautiful prayer, acknowledging God's hand in our lives, knowing that He has a plan for us, and praying for us to continue to be guided and directed as to what to do for my health.  I am so blessed to have Jake.  I am married to my best friend in the world.   

Email from my sweet husband:

the following is a dr that does stent the azygos.  he claims that you have to place one that is 20% larger than the azygos.

i think he's our guy!

here's some info from a conference he spoke at

conversation talking about the medicine i mentioned

Anybody heard of Dr. Hewitt?  Jake is convinced we need to go to California so that I can be treated by him.  PLEASE let me know if you've had any experience with him.

Thursday, April 7, 2011


Well, I felt GREAT for 3 days.  It was wonderful.  Again, my brain was clear, and again, my energy was back up.  The dizziness and balance issues were significantly decreased.  And then...I woke up and was stumbling all over the place, dizzy as ever, and slammed right into the wall.  Fun fun.  Pretty sure those darn veins closed yet again.   What to do, what to do, what to do.  The Dr. is calling me tomorrow so that we can discuss our options on where to go from here.  He's really worried about stenting, for several reasons, including that scar tissue builds up around the stent, which could end up closing the vein even more than the original stenosis.  We'll figure it out.  Continuing to pray for guidance as to where to go from here.  Pretty frustrating, but it could be worse.  I really do have way too much to be thankful for to be complaining.  I look at my sweet, sweet husband and the four little miracles that we've been blessed with, and it's hard to feel sorry for myself at all. 

Friday, April 1, 2011

Cautiously Optimistic

Well, the procedure went well.  It was a little rough at first because they  forgot to put the pain meds in my IV. So they made the incision in my groin, stuffed the catheter in it, pushed it up into my jugular vein, and started ballooning my jugular.  I just figured I was being a wimp and needed to breathe through the pain.  But the blooming was so painful and I finally just started crying from the pain and the nurse was like, "Oh shoot!  I forgot the pain meds!  I promise I won't drop the ball again!"  haha ya that sucked.  But it was totally worth it, because...
My right jugular vein was still open from the last surgery, but the left one was closed again about 25 percent so they opened that up.  He said he used a bigger balloon than normal and he's hopeful that it will stay open this time.  My azygous vein had stenosed again in 2 spots.  It was 80% occluded.  One spot is now 90% opened and the other only opened to 75%. 
Immediately after surgery, my mind cleared out.  I felt like I could see everything brighter and crisper than before, which was the same experience I had when they opened my azygous vein in Costa Rica.  I have way more energy and couldn't even fall asleep last night because my brain was so alert and clear!  So that's been wonderful.  I'm going to try working out in the next few days and I am so hoping and praying that I will feel good.  I'll let you know! 
Thanks to everyone for all of your love, prayers, and support.  I am so truly blessed for such amazing friends and family who step up and help us in our time of need, watching kids, bringing meals, or just checking in on us.  It means the world.