(warming, very long post ahead, you might need a map to get through it.)
It seems that's what we are headed for, a big old road trip adventure.
Let's back up a bit though...
I have spent the last two weeks going to second and third opinions from highly respected GIs/surgeons in our area. I was very lucky to have someone call in some big favors on my behalf to get me in to see the GIs at two of the top hospitals in So Cal and all within a week, when normally I would have waited at least a month. I can't thank the three people who made this possible enough. It just goes to show how very blessed I am to have so many wonderful and kind people in my life. Thank you, you know who you are and know that the simple phrase "Thank You" doesn't even begin to cover my gratitude.
The cliff notes conclusion from all three appointments are:
- I definitely have something going on still -- I have pain, tenderness and according to the CT fluid/fistula still in the right lower quadrant -- thus this is NOT anxiety and it needs to be addressed
- My case is extremely specialized at this point and I'm quite sick, I've exhausted my possibilities here in So Cal (which is saying a lot as we have a lot of resources at our finger tips) and I need to be seen by the very best, I can't risk going anywhere else
- This could be Crohn's, it could be post surgical infection/fistula issues or it could be both. My test results are contradicting each other, nothing presents clearly and getting to the bottom of this is going to take the most specialized eye
- Pack your bags, you need to get yourself to -- are you ready for it -- the Cleveland Clinic!
Whoa, right?! But weirdly so refreshing, the CC is the big program across the country I've been eluding to for some time here. I've done my research and I know they are the preeminent facility for digestive issues and all things pouch-related in the country and even the world, and I've just had my "gut" feeling that this is where I need to go.
So when both GIs were completely honest with me and said my case was over their practices capabilities and that they were sure I was too specialized for anyone else, I knew I had been right again about my situation. They both agreed that my request to, "just get well," was more than reasonable and they were impressed with my ability to be articulate, organized, smiling and non-accusatory in light of all I've been through (I know this sounds like I'm tooting my own horn, I contemplated deleting this line, but it's a part of the overall reassurance that the adventure we are about to embark on is the right one.)
I left both appointments feeling rejuvenated, reassured and ready to take on the next set of logistical challenges -- getting to Cleveland.
So how you ask do we go about doing this, well that's a good question.
Both GIs said to just call and make an appointment, say that I've seen them and been told this is where I need to go. But first I knew I had to do some insurance research and of course because nothing can be easy, I found out this morning that although the doctors are in-network, the actual CC facility is not -- meaning we would have to pay 40% of all the actual hospital bills. Yowza!
But I'm not panicking (yet anyway). I was on hold forever with the actual appt desk and then got disconnected, I'll call back in a bit, and I'm going to ask them what other patients in this situation have done. People come from all over the world to the CC so I know I won't be the first to ask this question. I also have an email in to the awesome woman who helped with my insurance woes last year and who helped secure these latest GI appts for her advice. And if I need to I'll get in touch with the woman at our insurance company who was my hero last year when I was trying to get my k-pouch approved. It will most likely take a fight, but I'm hoping that since really nobody in-network can help me, that they will set up some sort of special contract with CC on my behalf.
If that doesn't work out, well we'll be going anyway and just have to deal with the medical bills. It will be stressful, but we have to do what we have to do to get me well. So please pray/think good thoughts that it will all eventually work out. It would be nice to not have to embark on this fight, but well, what would a Chronicles of Crap journey be without mountains to move? And who knows maybe it won't be too hard (I won't hold my breath, but I can still hope right?)
Next up is actually scheduling and logistically getting there. How will it all work, it's not like Cleveland is a quick jaunt from here? Will I go for an appointment and then have to go back if I need surgery (which seems likely at this point)? How will it all work with our personal schedules, between the hubs and my moms work lives? This is actually the part that stresses me out the most, only because I hate knowing that I will uproot their lives again. I know that's ridiculous and irrational but hey that's me. I know they will do whatever it takes, but still being the chronically sick one is hard because of the burden it puts on the people you love the most. And that's just the plain truth.
But with all that being said I have a peace about all of this, because I just know this is the right thing to do, that the people at the CC are going to figure out what I need and help get me on a path to feeling well.
I really don't care what it is, I will figure out how to deal with whatever the outcome. I just want some answers and to feel better than I have in a VERY long time.
So people, at some point in the hopefully near future, we'll be taking a road trip. A fun little medical adventure. It's kind of exciting, it's kind of weird to think that I need to travel across the country -- that I'm that weird or "special" or sick or whatever -- but I know it will make for a great story and hopefully a great outcome.
Pack your virtual bags, and I'll pack my hospital bags and we'll be on our way. I'll keep you posted of course, where would I be without all my loyal readers and supporters?! I don't even want to know.
Here I come Cleveland, are you ready for me?