This was the coolest test I've ever had to do. It's like an ultrasound for those of you who have had those, but it's your own heart. I had a fab tech who explained absolutely everything that we were seeing on the screen, as well as telling me why each thing was important to check and what the ranges of normal were. Those of you that know me are aware of how much I love details and explanations, so I was thoroughly enjoying the test. I know it seems strange, but it just made it more like a hands on class experience more than a test. The results will be sent to my genetic doctor tomorrow, so hopefully Friday I will know what they are and if she wants to proceed with the biopsy.
Sadly this was the highlight of my week. My stress/anxiety level has been very high. This past Saturday I was walking along in the market and my left leg gave out. Other than almost falling on my face, it freaked me out because it is my right leg that is having surgery, my left leg is meant to be supporting me for the next month or so! Thankfully it hasn't happened again since Saturday (when it lasted for a couple of hours) but my left hip is actually hurting more than the right one now. I don't know how I'm going to make it through this, hopefully I will get some superhuman power in the next four days before surgery.
Shana tova! May you and your loved ones have a healthy and happy New Year.
12 September, 2007
11 September, 2007
Insurance
Last week got away from me and then I was on the island for the weekend so haven't had a chance to update the blog.
I spoke with the insurance company again on Friday and this time ended up
with someone who was actually helpful. I know it's hard to believe that a helpful person exists at an insurance company, but now we know at least one does!
I asked him to check about the ECHO. He didn't ask me for a code at all, just put me on hold and came back and said "yes you're covered at 100% so long as it's a network provider (which it is)". Gee that was easy, so I decided to try my luck. I decided I might as well ask about everything else regarding the biopsy since he seemed to be more educated than the daft cow I spoke to the day before. I listed off the six codes, he put me on hold again, and came back and said that it is all covered so long as it's a "medical necessity". I asked him if he could explain what exactly that was according to Oxford's definition and he was (shockingly) happy to. He said so long as your doctor feels it's necessary versus something like you want to have a blood test just for the heck of it. (why anyone would is beyond me, but you get the point).
I explained to him that the woman I spoke to the day before told me that I needed pre-authorisation for the lab codes I gave. He said that they do NOT require pre-authorisation, and so long as the doctor and facility are in network, it is covered. I checked with him about the lab in Seattle that my doctor said we would send my tissue to, as it is the one in the country that does this type of testing. To my huge relief he said that if it's the only lab that does that type and it's what the doctor needs, the facility would be viewed as "in network" and covered at that rate.
I am still weary that when all is done the insurance company will say it isn't covered, but I will just have to cross that bridge if/when I come to it. For now I'm going with the "it's all covered" idea!
I spoke with the insurance company again on Friday and this time ended up
with someone who was actually helpful. I know it's hard to believe that a helpful person exists at an insurance company, but now we know at least one does!
I asked him to check about the ECHO. He didn't ask me for a code at all, just put me on hold and came back and said "yes you're covered at 100% so long as it's a network provider (which it is)". Gee that was easy, so I decided to try my luck. I decided I might as well ask about everything else regarding the biopsy since he seemed to be more educated than the daft cow I spoke to the day before. I listed off the six codes, he put me on hold again, and came back and said that it is all covered so long as it's a "medical necessity". I asked him if he could explain what exactly that was according to Oxford's definition and he was (shockingly) happy to. He said so long as your doctor feels it's necessary versus something like you want to have a blood test just for the heck of it. (why anyone would is beyond me, but you get the point).
I explained to him that the woman I spoke to the day before told me that I needed pre-authorisation for the lab codes I gave. He said that they do NOT require pre-authorisation, and so long as the doctor and facility are in network, it is covered. I checked with him about the lab in Seattle that my doctor said we would send my tissue to, as it is the one in the country that does this type of testing. To my huge relief he said that if it's the only lab that does that type and it's what the doctor needs, the facility would be viewed as "in network" and covered at that rate.
I am still weary that when all is done the insurance company will say it isn't covered, but I will just have to cross that bridge if/when I come to it. For now I'm going with the "it's all covered" idea!
06 September, 2007
The good news is...
that the doctor didn't tell me there is nothing wrong with me and she has no idea what it is.
The bad news is that it is some sort of collagen disorder, to be named (possibly) at a later day, and there is nothing much one can do to fix this type of thing. I kind of knew that was coming though with all of my compulsive research.
Dr. Davis is a very lovely and (seems) knowledgeable genetic doctor who has seen many people in my situation. She was understanding and patient and asked many questions. I had brought with me as many records as I could regarding various surgeries, lab tests, scans and the sort. I also wrote up a list of two pages everything that is wrong with me and what hurts. Amazing how long that list was. The best question was "are you always in pain". Right then I knew I liked her because she "gets it". I told her the honest truth, that I can't remember a day that I haven't been in pain. Sadly when most people hear you say this, they don't believe you and start asking "so what hurts at this moment". I just tell them the list would be shorter regarding what doesn't hurt, and yet, they still have their doubts. I'm not trying to play for sympathy here, I just really liked the fact that this doctor seems to understand what kind of "life" I have been living.
I was with her for about an hour and a half. She spoke to me first and then examined me. Genetic doctors do a lot of measurements she said, and they sure do! She also said that it's ironic that one can look healthy and be such a mess inside. Another thing most people don't get. "Oh, you're not feeling well? But you look just fine, nothing can be wrong with you". You'd be amazed how much of that I get.
So onto the next steps. There is no exact test for condition X as I will call it now, for lack of the "official" title at present. However, if I do have one type of condition, a heart issue could possibly be related, so to play it safe she wants me to have and ECHO done. Ok, fair enough. I am not really that nervous about that since I'm getting cut-up the next, I'm more concerned about the latter.
The doctor also said she would like to get a biopsy of some tissue so they can study my collagen. We're hoping this can be done during surgery since I will be "opened" then. That leads me to the bigger issue.
BLOODY INSURANCE COMPANIES! Why can't you just ring up, ask a question, and get a proper answer? Can it truly be that difficult or do they make it a requirement to be a)obnoxious b)daft c)not helpful when they hire people? I rang up to check that the ECHO would be covered. The response was "what is the code". I don't know, is there more than one code for an ECHO (obviously a daft question from the sound of her reply). "I can't help you without a code". Ok, fair enough, I will try to get that and ring back, but I have a bunch of OTHER codes I needed to check with her about the biopsy. She places me on hold and then finally comes back. "All codes are billable, but subject to medical necessity". I swear, a simple yes or no would be brilliant!
Ok, so what is medical necessity and how do I prove that? "You'll have to ask your doctor, she would know". These people are just so helpful. She also told me that if they are going to take the biopsy during the surgery, I need a new approval for the surgery. I said, I have that already, can't this doctor, the doctor NOT doing the surgery, just send in a separate request? Finally she concedes that yes, this can be done as well. It's like smashing ones' head in a brick wall.
As it stands, I rang and sent an email to Dr. Davis's office with this information and they are looking into it.
The moral of this story is, well, there is none, just a statement - INSURANCE COMPANIES ARE CRAP!!! But then again, you knew that already, didn't you?
The bad news is that it is some sort of collagen disorder, to be named (possibly) at a later day, and there is nothing much one can do to fix this type of thing. I kind of knew that was coming though with all of my compulsive research.
Dr. Davis is a very lovely and (seems) knowledgeable genetic doctor who has seen many people in my situation. She was understanding and patient and asked many questions. I had brought with me as many records as I could regarding various surgeries, lab tests, scans and the sort. I also wrote up a list of two pages everything that is wrong with me and what hurts. Amazing how long that list was. The best question was "are you always in pain". Right then I knew I liked her because she "gets it". I told her the honest truth, that I can't remember a day that I haven't been in pain. Sadly when most people hear you say this, they don't believe you and start asking "so what hurts at this moment". I just tell them the list would be shorter regarding what doesn't hurt, and yet, they still have their doubts. I'm not trying to play for sympathy here, I just really liked the fact that this doctor seems to understand what kind of "life" I have been living.
I was with her for about an hour and a half. She spoke to me first and then examined me. Genetic doctors do a lot of measurements she said, and they sure do! She also said that it's ironic that one can look healthy and be such a mess inside. Another thing most people don't get. "Oh, you're not feeling well? But you look just fine, nothing can be wrong with you". You'd be amazed how much of that I get.
So onto the next steps. There is no exact test for condition X as I will call it now, for lack of the "official" title at present. However, if I do have one type of condition, a heart issue could possibly be related, so to play it safe she wants me to have and ECHO done. Ok, fair enough. I am not really that nervous about that since I'm getting cut-up the next, I'm more concerned about the latter.
The doctor also said she would like to get a biopsy of some tissue so they can study my collagen. We're hoping this can be done during surgery since I will be "opened" then. That leads me to the bigger issue.
BLOODY INSURANCE COMPANIES! Why can't you just ring up, ask a question, and get a proper answer? Can it truly be that difficult or do they make it a requirement to be a)obnoxious b)daft c)not helpful when they hire people? I rang up to check that the ECHO would be covered. The response was "what is the code". I don't know, is there more than one code for an ECHO (obviously a daft question from the sound of her reply). "I can't help you without a code". Ok, fair enough, I will try to get that and ring back, but I have a bunch of OTHER codes I needed to check with her about the biopsy. She places me on hold and then finally comes back. "All codes are billable, but subject to medical necessity". I swear, a simple yes or no would be brilliant!
Ok, so what is medical necessity and how do I prove that? "You'll have to ask your doctor, she would know". These people are just so helpful. She also told me that if they are going to take the biopsy during the surgery, I need a new approval for the surgery. I said, I have that already, can't this doctor, the doctor NOT doing the surgery, just send in a separate request? Finally she concedes that yes, this can be done as well. It's like smashing ones' head in a brick wall.
As it stands, I rang and sent an email to Dr. Davis's office with this information and they are looking into it.
The moral of this story is, well, there is none, just a statement - INSURANCE COMPANIES ARE CRAP!!! But then again, you knew that already, didn't you?
05 September, 2007
Yet another doctors visit
Tomorrow is my appointment with the genetic doctor. I don't know if I'm more afraid of getting a diagnosis or having another doctor tell me that they can't suss out what is wrong with me. I'm thinking it's the latter of the two. Then again, if I get a diagnosis that does not mean that they will have a "fix" for what is wrong with me. It's all very much twisting my brain into a pretzel.
I admit at this point in my life I am completely and utterly sick of doctors. After my experiences with some of them you begin to wonder if they actually know what they are doing. Yes, I've been lucky with a few, my hand surgeon for example was brilliant. However it did take me three years and seven doctors to find him. In the course of that adventure, one *supposed* top hand surgeon saw me a year or so into the hunt and said that there was nothing wrong with me and the next time my hand hurt to call him to complain and not my mother. You have to love that bedside manner! I was young at the time and completely devastated by that. The git had me thinking that it was all in my head and to be honest, after all the wacky things I've had wrong, you do start to wonder if it is all "in your head".
So that leaves tomorrow, and the fear of another doctor saying "we don't know what's wrong with you" and then the self doubt of thinking that perhaps it really is "just in my head". Yes I know not all of it is, but if you had the list in front of you that I've just written up for the doctor of all of my pains and symptoms and issues, it's hard to believe it's just one person with all of these complaints.
On an aside, I've been flipping out about the crutches situation. When I tried the forearm crutches at PT last week, they did not feel that great. Since then I have been debating whether to get the millennium crutches that I have read about on the different boards. I finally decided to just go ahead and order them because I've heard such good things and at this point, I have to make a decision one way or another. Hopefully it's the right one for my hands as well as my hips.
I admit at this point in my life I am completely and utterly sick of doctors. After my experiences with some of them you begin to wonder if they actually know what they are doing. Yes, I've been lucky with a few, my hand surgeon for example was brilliant. However it did take me three years and seven doctors to find him. In the course of that adventure, one *supposed* top hand surgeon saw me a year or so into the hunt and said that there was nothing wrong with me and the next time my hand hurt to call him to complain and not my mother. You have to love that bedside manner! I was young at the time and completely devastated by that. The git had me thinking that it was all in my head and to be honest, after all the wacky things I've had wrong, you do start to wonder if it is all "in your head".
So that leaves tomorrow, and the fear of another doctor saying "we don't know what's wrong with you" and then the self doubt of thinking that perhaps it really is "just in my head". Yes I know not all of it is, but if you had the list in front of you that I've just written up for the doctor of all of my pains and symptoms and issues, it's hard to believe it's just one person with all of these complaints.
On an aside, I've been flipping out about the crutches situation. When I tried the forearm crutches at PT last week, they did not feel that great. Since then I have been debating whether to get the millennium crutches that I have read about on the different boards. I finally decided to just go ahead and order them because I've heard such good things and at this point, I have to make a decision one way or another. Hopefully it's the right one for my hands as well as my hips.
30 August, 2007
Low day
Today was my last PT appointment until after my surgery. I have to be honest, I am PT'd out! I've been going since December and am just having surgery now and I will be in PT for a good number of months afterwards, so it was hard to get motivated to go. Everyone is perfectly lovely and helpful there, but my mental side has had enough. This is not a good state to be in, and I know I have to snap out of it. I guess I have 18 days to do so.
So I went in a bad frame of mind, and with many nervous and stressed out thoughts. I have been reading many different things about the results of the surgery and it has all made me a bit apprehensive. Yes, I know I have to have the surgery, but at the same time my brain is trying to come up with ideas about how to avoid it. My hip did hold up fairly well this week, and I hadn't been limping much until after PT today so does that mean I should skip the surgery? Granted I still can't walk a lot without it acting up and I really would like to be able to exercise properly again and go for nice long hikes so that means I should do the surgery. This is the circle my mind keeps going around and around in and it's driving me completely mad!
I expressed my concerns to my pt's K and S, and S said, "well the surgery is not 100%". That didn't really help to be honest though when I was leaving he said to feel free to ring him before if I had any more questions or concerns. I did make sure my post op PT appointment is scheduled for when they will both be in the office. K kept saying over and over just like a mantra "you will be better". I guess I will have to keep his optimism up somehow and try to stop thinking of what can go wrong. I suppose it's time for faith.
So I went in a bad frame of mind, and with many nervous and stressed out thoughts. I have been reading many different things about the results of the surgery and it has all made me a bit apprehensive. Yes, I know I have to have the surgery, but at the same time my brain is trying to come up with ideas about how to avoid it. My hip did hold up fairly well this week, and I hadn't been limping much until after PT today so does that mean I should skip the surgery? Granted I still can't walk a lot without it acting up and I really would like to be able to exercise properly again and go for nice long hikes so that means I should do the surgery. This is the circle my mind keeps going around and around in and it's driving me completely mad!
I expressed my concerns to my pt's K and S, and S said, "well the surgery is not 100%". That didn't really help to be honest though when I was leaving he said to feel free to ring him before if I had any more questions or concerns. I did make sure my post op PT appointment is scheduled for when they will both be in the office. K kept saying over and over just like a mantra "you will be better". I guess I will have to keep his optimism up somehow and try to stop thinking of what can go wrong. I suppose it's time for faith.
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