From Jesse:
My apologies in advance if this update comes off more like a rant than an update, but it's hard to not want to rant about this situation. We just got back from our second opinion, with a doctor (Dr. G) from St. Marks Hospital. The doctor was quite understanding and after listening to our situation and telling us more about the PFO closure procedure he believed that since our neurologist said Lisa was experiencing transient ischemic attacks (mini strokes) that she'd be a good candidate for the procedure. He said he'd even do the procedure on his day off so we could get it done ASAP. Unfortunately in order for our insurance to cover it it'd have to be done in an IHC hospital, but he'd also have to bring her case before the IHC review board, which our last doctor (Dr. M) said was virtually impossible to get them to approve the procedure. On that front, we've called the office of our first cardiologist multiple times the last few weeks to get an update but have been ignored, and treated very rudely. I can tell where that staff gets their attitude from, when we went to see Dr. M we didn't listen to us and didn't give us much hope that he'd try very hard to get the board to approve the surgery. Dr. M's office FINALLY decided to call us back today and they said that they weren't sure if it was ever put before the board but that it was highly unlikely it would be approved. Needless to say we were extremely disappointed. I guess I'm naive but I honestly thought that if your doctor (neurologist) thought that you should have a procedure, then you would get it. We're not talking elective surgery or cosmetic surgery here, it is a surgery that would prevent further strokes. This is a way for IHC to trim their budgets, and they're doing it to people who could honestly benefit from this procedure. I know the Dr. M kept stating that there's only a 50% success rate, but who CARES? How many procedures are done by IHC with less of a success rate? Honestly, it's not like 50% of the people that have this procedure die or something, 50% see improvement and the others who don't no longer have a hole in their heart and have less of a chance of having a stroke. I've never been so frustrated in my life.
Monday, February 25, 2013
Thursday, February 7, 2013
Update
I know people have been wondering, so here is the update!
I saw the Cardiologist on and it didn't go very well. The procedure has become controversial because there is only a 50/50 chance that it will help end the symptoms. It's also ridiculously expensive so IHC is cracking down. The Dr explained this all began recently and if I had come to him 3 months ago, he could have done the procedure. However, now my case has to be presented to a board for IHC, and they will decide if I can have the surgery or not. He told me the only way at this point to get approved is if I've already had a stroke. I told him what my life has been like since the PFO has started manifesting itself. He was sympathetic, but told me his hands were tied. I asked him what kind of quality of life I could have, but he didn't answer. (suuuuper comforting) He did say we could do a TEE to get a better picture of my heart, but it wouldn't change whether or not I could have the surgery. It was just the last test to do, to see how big the hole it. We did that procedure on Tues. He didn't show up, so after 3 hours of waiting, they called another cardiologist to come.
I called St. Marks Heart Center to get a second opinion and will be going in later this month. I also called my Neurologist to let them know. They called me back today. They informed me that the lesions on my brain were mini strokes, so that alone should qualify me. Thankfully, the Neurologist will be my calling my Cardiologist for a chat. So at this point. I have no idea what's going on or what will happen :)
It's been pretty upsetting and I've been trying to absorb all this information and trying to map out what to do, coordinating insurance and Drs etc. I think at this point I'm more ticked than anything else. I can't even believe all the political garbage that is going on. It's all about money and has nothing to do with me, and yet is preventing me from moving on with my life. It is what it is and I have nothing to do but wait.
This may sound weird, but for me the most comforting thing is just knowing that people KNOW. This is why I blogged about it to begin with, it was so comforting just to inform everyone that I care about of what was going on. Especially since if someone I cared about was going through something, I would like to know. I really hope this wasn't interpreted as a cry for help. It certainly wasn't. As for me and the family. We're good as far as getting things done and living day to day. I have so many people who are so kind and ask what they can do, and really the answer is there isn't anything that needs to be done. Everything is taken care of. We learned a lot when we were pregnant with the twins, we learned to ask for help before things get out of hand. So it means a lot, all the offers we've been getting, we have been overwhelmed and grateful. And so if we need help, we'll probably take you up on it (so careful what you offer! lol). But if something changes, BELIEVE ME, we'll be making some phone calls!
Thank you so much for the kind words and comments (I love comments! Regardless of the subject!) We feel so blessed to know such wonderful people. I will update if anything changes!
I saw the Cardiologist on and it didn't go very well. The procedure has become controversial because there is only a 50/50 chance that it will help end the symptoms. It's also ridiculously expensive so IHC is cracking down. The Dr explained this all began recently and if I had come to him 3 months ago, he could have done the procedure. However, now my case has to be presented to a board for IHC, and they will decide if I can have the surgery or not. He told me the only way at this point to get approved is if I've already had a stroke. I told him what my life has been like since the PFO has started manifesting itself. He was sympathetic, but told me his hands were tied. I asked him what kind of quality of life I could have, but he didn't answer. (suuuuper comforting) He did say we could do a TEE to get a better picture of my heart, but it wouldn't change whether or not I could have the surgery. It was just the last test to do, to see how big the hole it. We did that procedure on Tues. He didn't show up, so after 3 hours of waiting, they called another cardiologist to come.
I called St. Marks Heart Center to get a second opinion and will be going in later this month. I also called my Neurologist to let them know. They called me back today. They informed me that the lesions on my brain were mini strokes, so that alone should qualify me. Thankfully, the Neurologist will be my calling my Cardiologist for a chat. So at this point. I have no idea what's going on or what will happen :)
It's been pretty upsetting and I've been trying to absorb all this information and trying to map out what to do, coordinating insurance and Drs etc. I think at this point I'm more ticked than anything else. I can't even believe all the political garbage that is going on. It's all about money and has nothing to do with me, and yet is preventing me from moving on with my life. It is what it is and I have nothing to do but wait.
This may sound weird, but for me the most comforting thing is just knowing that people KNOW. This is why I blogged about it to begin with, it was so comforting just to inform everyone that I care about of what was going on. Especially since if someone I cared about was going through something, I would like to know. I really hope this wasn't interpreted as a cry for help. It certainly wasn't. As for me and the family. We're good as far as getting things done and living day to day. I have so many people who are so kind and ask what they can do, and really the answer is there isn't anything that needs to be done. Everything is taken care of. We learned a lot when we were pregnant with the twins, we learned to ask for help before things get out of hand. So it means a lot, all the offers we've been getting, we have been overwhelmed and grateful. And so if we need help, we'll probably take you up on it (so careful what you offer! lol). But if something changes, BELIEVE ME, we'll be making some phone calls!
Thank you so much for the kind words and comments (I love comments! Regardless of the subject!) We feel so blessed to know such wonderful people. I will update if anything changes!
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