The Bumps Are More Like Mountains

I knew going into this process that I would encounter bumps along the way. I just never realized I would get my first curve ball thrown at me before I was even listed for transplant.

Tom and I received a phone call on Wednesday from our insurance company. They told us that the policy we have requires that transplants must be carried out at a hospital with an accreditation called a Blue Distinction. Unfortunately, Stanford does not have that for lung transplants. They are, however, recognized for heart transplants.

Time froze as I heard this news, my stomach immediately felt nauseous and I started to cry. I am still in a lot of shock, and to be honest, quite numb by the news. It doesn't seem possible to get this far, only to be told that Stanford might not be the place where I will be getting new lungs.

The infuriating part for me is that the insurance company let me go through four days of evaluation testing at a hospital that does not have a Blue Distinction.

We don't have many answers right now, just a lot of questions. We are in the investigation phase because we haven't exactly been told "no". Stanford has told me to sit tight to see if they can do something. They have never had this happen to a patient where they were given the okay by the insurance company to have the evaluation, but then told no to getting the transplant. Tom is doing the best he can to get answers as well from our insurance.

The other issue is that the Blue Distinction accreditation for lung transplant is only held by two hospitals in California, both in Southern California. At this point, I can't think about where I would go, or if we would move out of state to find a different center.

Right now, we wait. We wait to hear what this means for us, and if this can be a quick fix or not. Time is of the essence, I don't have months and months to wait for appeals processes.

I wanted to let everyone know what I was going through, and know that this is a huge mountain, but it is definitely not the end yet. I am fortunate that I started this process before I was really too sick. I have some time to wait and maybe get things figured out. As Tom keeps saying, I will get my transplant, I just have to wait and see where that will be. He keeps reminding me that I am always saying things happen for a reason and maybe there is a bigger plan for me that I am not aware of just yet.

We will sit tight and let things play out in the next few weeks to see where my fate lies. In the mean time, my parents and Tom tell me I need to focus on my health and keep my strength up. That is all I can do, and hope for the best.

I knew I would be challenged by this process. I knew there would be tears, frustration, and a whole lot of swearing along the way. I just never imagined how big of a challenge I would encounter to get me that big, deep breath I have been waiting for my whole life. This crap better be worth the lung capacity that you all have to function as normal human beings. I want that so bad, but man, this sucks so much to have to jump through hoops and be tested so greatly just for something as simple as a deep breath.

Right now I need good thoughts, prayers and positive ju ju to come our way.

Life is messy and quirky. I'm being tested to my fullest right now, but I am so thankful I have so much support.