Friday, April 9, 2010

Getting Back on the Horse!

Hey Everyone!

I'm so sorry for not posting...I can't believe it's been a month!  My health has been so good that I've been going 100% trying to make up for all the household things that got behind while I was bedridden!  I have so much to write and I've been tearing myself up about not posting, then I'd get anxious about how behind I am, so I decided that I'm just going to start from here and try and fill you in on the past month in small, manageable chunks.

I hope you will accept my apology.  I have been gift giving like crazy, sometimes big, sometimes very small, but I'm having fun.  I have so many things to tell you.  I went to Boston and learned all about Alpha 1 and it was fabulous!  Tim and I helped earn over $20,000 in one night which was matched by a pharmaceutical company making it over $40,000!  We learned all about how to throw our own fund-raising events and met the most amazing people.  What's more, is I got excellent medical advice and was hooked up with THE Alpha 1 doctor in Arizona.  He confirmed everything that I learned and I will be starting weekly blood transfusions to help keep my lungs functioning at their best.  This treatment does not help the liver, but the liver is less likely than the lungs to have major problems.

I am so deeply blessed as I learned that the infusions (the cheapest ones) are over $12,000 per month and I will need them for the rest of my life.  I had to work the numbers, my first co-pay is $2,400 but thank the Lord for His guidance, as Tim and I had invested in the best insurance plan and there is an annual cap of $2,000 out of pocket!!! My doctors were shocked with how much my insurance was going to cover.  We also had to worry about my lifetime max as I will be going through the money quick, we were thrilled to find my policy covers 5 million dollars just for me!!!  That's 50 years of transfusions!  We are so grateful.  I start these in about two weeks and I'm very excited as I know they will help me feel much better.  There is a likely cure going through the FDA process currently, it should be available in 10-15 years.  The transfusions will keep me healthy long enough to see the cure!

My health has been better than in a long time.  I've gained some weight and struggling with that, but I'm exercising and eating great.  I'm can't wait to start sharing with you my gifts as they come.  Thanks for all of your support and prayers!!!


Kelly said...

Glad to hear you are back online and blogging again! I've missed your stories! I'm so glad everything is working out and you'll be able to get the transfusions for so long and so often. My husband got called into an accounting interview for a huge multi-billion dollar company out of Scottsdale yesterday! They asked him if he would be willing to take a higher position in the company due to his education and experience that makes more than what I make now as a music therapist!!!! I hope they offer him the sounds really great and in an amazing location and amazing benefits, etc. Here's to a better life looking forward and hopefully smiles from here on out for all of us! =)

-Kelly West
Music Therapist for Justin and Jamie =)