I for some reason have a feeling about the dr in San Diego that specializes in the Kpouch. I feel like even if I have to have two more surgeries, he's going to be the man. I can't explain it, it's just my gut (pun intended) feeling. So I decided to email him, there is a link to his direct email on his website so I went for it, cliff-note explaining my story, thinking someone would eventually respond. Well low and behold, maybe three hours later, the dr himself responded. He said that I sounded like a good candidate for a k-pouch, but that he'd have to see me in person and review my records to discuss anything further. He explained that I had to get a referral through my primary dr to my IPA -- my usual process. I just felt so good that he actually responded, so that empowered me to make a few other calls...
I first called my IPA (healthcare company that is associated with my HMO). Let me take a minute to state the obvious, but our healthcare system is so freaking nutty. It makes no sense to me why since I have the HMO, the one my hubby's company pays, why they contract out to the IPA network and then pay them. This is why there is no cohesiveness, why nobody can ever get a straight answer and why everything takes so long and gets so convaluded.
Anyway, I asked the IPA if anyone within the network claimed to be able to do the very specialized K-pouch -- I wanted to know if we'd potentially get a response to our out-of-network request that was something to the effect of "well so and so does that in network." And can you guess the only two surgeons that claim to do that procedure in my network... Did you guess right, yep it's my original jerk surgeon and the a** hole that gave me my supposed second opinion. I seriously laughed when the lady told me this, she was less than thrilled with that, but I couldn't help it. She told me that whoever was submitting the referral could submit a detailed letter explaining why I needed to go to this dr out-of-network and why I would NOT be seeing either of the in-network surgeons ever again.
Alright, so now I'm jazzed. I felt the adrenaline running through me, I got all sweaty and jumpy. Oohh it felt good, I was pumped!!! Oh yeah, here I come Tiny but Mighty.
Because I wasn't thinking I didn't ask the lady at the IPA how to go about filing a grievance against the surgeons. So I called back, and she told me that grievances had to be filed with the actual HMO. URGH, makes no sense since it was the IPA that denied my referral to have my original surgery out-of-network. See what I mean, ridiculous. So then I called the HMO and the guy I talked to was great, he agreed that the system was so flawed and frustrating. In the meantime he took down my initial grievance and then submitted California Department of Managed Health Care. I got a letter from the HMO saying it had been filed. I really don't know what happens next but we'll see. I feel good at least knowing it's been done, and it's on file for when they get the referral to go out of network. Again, a little more empowerment.
Then the fear set in a bit, what if I can't figure out who the best dr to submit the referral is. I wanted to make sure I maximized the effectiveness -- should it be my primary care dr or my GI (both in-network.) So I made an appt with both, figuring maybe they could just join forces.
I have been suffering from anxiety attacks for quite some time now and this week proved to be a doozy in terms of my crazy scale. I mean, I can me down right wacko sometimes, but I do my best to be aware of it and deal. I can only do what I can do. Thankfully the ones that know me best know how to handle me during these "special" times. (I have some fabulous stories to tell about my random anxiety, I'll have to do a separate post on that.)
Anyway, I went to see my PCP yesterday. And let me say this again, I have the BEST PCP. He is what all drs should be -- kind, compassionate, funny, easy to talk to, but so knowledgable and take charge. He has been with me through this whole thing and he always remembers me and my story. He reassures me that its amazing what I've endured and he doesn't think he could have done it himself. You can tell he genuinely cares and I feel so comfortable being totally honest with him. **If anyone lives in south LA county or North OC, and is looking for a great dr, I'd be happy to send you his info. I have no shame in plugging him.**
He didn't let me down yesterday. He was appalled at what has unfolded and you could see he was a little angry and ready to fight. He said he would submit the referral with a very detailed letter as to why i would never see the other surgeons in-network again, that I had exhausted my therapeutic relationship with them, and that I was now in need of specialized care that could NOT be handled in-network. He said he would have it all done by today and submitted early next week. He also told me that the head dr in his practice was the president of the drs side of the IPA and that hopefully would give some pull too. I felt so good about how much he cared and I left knowing that this was actually going to happen. Each affirmation that what I've been dealing with is insane and that I'm not crazy is so reassuring.
While I was at my appt I spoke to my dr about my nueropathy issues and in a sick twist of irony or really just some cruel joke, I have to take a pre-natal vitamin for the folic acid and need to add B-12 supplements as well. Yeah, get to take a pre-natal vit and still get no baby. As my friend pointed out, why can't they just make one called a Super Woman vitamin. Oh well, what can you do. Hopefully it will help. I also had some blood work done to check my gall bladder and liver function as requested by Sphincter Man last week. All in all a really good appointment. I will be seeing my GI next Thursday and asking her for a letter as well.
The ducks are all getting in a row and I'm hoping to have my consultation approved and scheduled before we leave for our cruise on May 22. If I really let myself hope, maybe I'll even have had the appt by then too. It's my ultimate goal to have all research and appointments done, decisions made and maybe some next steps scheduled before we leave. I feel like that way those big weights will not be hanging on us and we can hopefully just enjoy each minute of our trip -- just the two of us, doing what couples should be doing.
As far as how I'm feeling physically, no better and the last two days have been especially yucky. But I'm still hanging in there. Taking it one day at a time, sometimes I don't know if I'm numb in denial or just well adjusted. Could change at any given moment.