We're still in shock over here.
Last week my cardiologist's Medical Assistant called to say my cardiologist was trying to get in contact with my neurologist to decide the best course of treatment for me. Yesterday the MA called me back to say that after consulting with the neurologist, he felt that closing the hole "wouldn't be unreasonable". I was pretty shocked since I had prepared myself for more of the same disappointment. I had to actually ask her what that meant a couple of times to understand she was saying he agreed to do the surgery. Wait, huh? YAY! We are still completely confused about what caused the turn around exactly, but we decided not to push it and ask for more explanation. (I might ask more AFTER the surgery). I then made a thousand phone calls to insurance and trying to figure out family coming to babysit. Now that we had the procedure codes we could find out if insurance would cover it for sure. They specifically asked me if I was having it because of migraines. I said no. They said that I could then be covered. HALLELUJAH! It will still be thousands, but not the $40k it would have been out of pocket. I am so glad we waited, even though it was so hard. We could have jumped the gun and said to heck with Dr. M, we'll have Dr. G do it and just pay for it ourselves. But I really felt we should just play Dr. M and IHC's "game" and see where it gets us. I do think it's a complete injustice to all those people with a PFO and who suffer from Migraines. This procedure could help them and HAS helped a lot of people!
The MA had given me the option of having it done April 5th by Dr. M's colleague, but she then called me back and said Dr. M wanted to do it himself because he is familiar with my case, but wouldn't be able to do it until April 10th. I'm pretty confused about this, seeing as he didn't seem too eager to even talk to me, let alone perform the surgery himself. I agreed to wait until April 10th, again-trying to just be easy going and not tick anyone off until I get the surgery. I haven't had a stroke thus far, so waiting 5 more days should be ok, right? (If I happen to have a stroke before April 10th, you can all point at this and laugh, I give my permission)
We are super excited over here and can't wait to put this behind us. I would actually like to take a walk or ride my new bike and you know, live life (although does this mean I have to do laundry again? lol). I'm excited to exercise finally, all those steroid treatments and being down for so long has wreaked havoc. Hopefully after the surgery we will then finally be able to rule out or rule in MS and get rid of the tingling in my face and the weakness in my arm and leg. They said it could take up to a year for the tissue to grow around the device, so I won't be back to myself for a long time, but I'm excited to get started!
Friday, March 29, 2013
Monday, February 25, 2013
Update +
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.
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.
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!
Thursday, January 24, 2013
Ok it has been awhile. I admit it. I've missed keeping up with this blog, but with the twins and the kids and living life, it was the first thing to go. I figured that it was time for an update. I'm on facebook, but I don't really feel comfortable sharing personal info with such a huge spectrum of people! I imagine it as walking into a room of 300 people that I know, some well, others not so well, and sharing personal information. Um, no thank you? So here's my update with my life. I'll be brief because there are too many details to list.
On the last day of September I had an ectopic pregnancy. It was early enough that they decided to give me medication to help my body reabsorb it. It made me super sick! There was a lot of pain associated with the ectopic so they decided to remove the tube and tie the other one. There was a lot of back of forth with that decision. But it was what the Dr was recommending. Before my surgery, I began having panic attacks, although I didn't recognize that's what they were since I'd never had them before. I felt they were completely beyond my control, I could not get a breath and my chest tightened so bad it hurt. I ended up in the ER multiple times because they thought I may be having a stroke or a heart attack. While I was there I told them about some tingling in my face. The left side of my body also kept going weak. They weren't sure what it was, but felt confident that once I had the surgery it would go away. 2 weeks after surgery the tingling and weakness came back full force and didn't leave where before it was intermittent and brief. I called my Dr's office and they told me to go to the ER (of course!) The Dr this time ordered an MRI. I was supposed to be in there 30 minutes and I was in there and hour and a half! I was a little traumatized. We were joking and laughing (let's be honest, I was on drugs) until the Dr came in with a somber face and told me they found demyelination on my brain (lesions). He recommended I see a neurologist and told me he was worried I had MS. I was freaked out of my mind. I told him that I've had meningitis twice before and hopefully that was where the demyelination came from. He said it was possible, but not likely.
We went to the neurologist, and did some tests and a spinal tap (I've had two before, but this one was by far the worst). When I went back for the results, they told me it was very unusual because I had conflicting test results. Some tests said I was positive for MS and one was negative. They recommended that they treat me as if I had MS and began educating me on the treatment options. They told me the key to having any quality of life with MS was to treat as soon as possible. I was scared thinking I would live the rest of my life under these treatments, because they sounded awful. They gave me a month to think about it and I immediately called around to get a second opinion. I got into a specialist in Salt Lake and met with him a few weeks later. They told me it was perplexing and could understand the confusion but that there were more tests to be done. They ordered a second MRI on my spine, a steroid transfusion to fix my left side, and an echo cardiogram.
The day after Christmas I started. I first had the infusion, which I do think helped the weakness although added a good 15 lbs. The echo cardiogram was the biggest step, they informed me I have a hole in my heart (PFO). They shot bubbles into my arm and then brain. They told me on a scale of 0-5 I was a 5+ for the amount of unoxygenated blood that was reaching my brain. This news is both good and bad. Good news, it may explain some of my MS symptoms, so hopefully I don't have MS. Bad news, I may still have MS AND a hole in my heart. My two older sisters had holes in their hearts, but had completely different symptoms (migraines, vertigo, etc). They both had surgery, so I knew what was coming my way. PFO's can run in families. My PFO symptoms: it makes me lethargic, I get confused, super forgetful, and I get vertigo. We're also hoping to blame the weakness, the face tingling and the demyelination on it too. I'm taking aspirin to prevent a stroke and I'm trying to not let my heart race, so keeping those panic attacks in check. No exercising, trying not to lift the twins, etc. They told me to cut out stress (lol!) It has definitely made me rethink my entire life, every time I exerted myself, exercised, did a stomach crunch, I was at risk for a stroke. The fact that I have had 4 children, all vaginally, is baffling. I haven't had much tingling in my face for the last little while. However the other day I was scrubbing some pans and there was a burst in my face. Freaked the heck out of me. My in-laws Lee and Maria are graciously providing someone to now clean the house. LIFESAVER! I will most likely be having surgery to close the hole in February. My appt is on Feb 5th with the cardiologist and then I'll know for sure when it will be.
I had the MRI and the good news was, there were no MS lesions on my spine, however the radiologist noticed I have nodules on my thyroid. Again, good and bad news. We're hopeful we can blame all these symptoms on the PFO and the thyroid. I've had an ultrasound on my thyroid and a biopsy (not fun at all-like.at.all) the good news is that its not cancer, bad news, they don't know what it is. I will be starting thyroid medication after my heart surgery. I've now lost count at all the blood pokes and needles. YUCK! I do have to give myself Vitamin B12 shots once a week. I'm also really low on vitamin D3, so I'm supplementing.
In the middle of this, my sister was diagnosed with Breast Cancer. She had surgery and started Chemo last week. So I went to get a baseline mammogram and they found a mass. I had an ultra sound and they said it was a cyst. They are pretty confident it's benign but I have a follow up appointment to figure out the next step. I will be getting genetic testing next month to see if I have the cancer gene. My sister does have the BRCA II gene.
So that is where we are. There is so much more to this story, but that is the gist of it. We are so glad to finally have some answers and feel like we are making progress. It's been very hard, but we are looking forward to more answers and surgeries so I can get back to raising my little ones. They have had an absent doped up mother for months now and it's not fair to them. I have had so many angels helping me, taking my kids where they need to go, cleaning m house, making meals, you name it. We're truly blessed.
I'm blogging about this because I think people are beginning to wonder why I've been such a hermit lately. I've also forgotten about a million things. So I promise I'm not crazy :) (that we've discovered yet!) So I'll be updating on here so I don't have to keep trying to update people with emails and texts.
My other purpose on posting all this is to bring awareness to some of these problems. If a Dr tells you they aren't 100% sure on a diagnosis, please get a second opinion. And please tell your Dr all the little annoying things that are happening with you. I almost didn't mention the tingling in the face.
PS Sorry this post is so somber! I'm working on my attitude :) I will post happier next time I promise.
On the last day of September I had an ectopic pregnancy. It was early enough that they decided to give me medication to help my body reabsorb it. It made me super sick! There was a lot of pain associated with the ectopic so they decided to remove the tube and tie the other one. There was a lot of back of forth with that decision. But it was what the Dr was recommending. Before my surgery, I began having panic attacks, although I didn't recognize that's what they were since I'd never had them before. I felt they were completely beyond my control, I could not get a breath and my chest tightened so bad it hurt. I ended up in the ER multiple times because they thought I may be having a stroke or a heart attack. While I was there I told them about some tingling in my face. The left side of my body also kept going weak. They weren't sure what it was, but felt confident that once I had the surgery it would go away. 2 weeks after surgery the tingling and weakness came back full force and didn't leave where before it was intermittent and brief. I called my Dr's office and they told me to go to the ER (of course!) The Dr this time ordered an MRI. I was supposed to be in there 30 minutes and I was in there and hour and a half! I was a little traumatized. We were joking and laughing (let's be honest, I was on drugs) until the Dr came in with a somber face and told me they found demyelination on my brain (lesions). He recommended I see a neurologist and told me he was worried I had MS. I was freaked out of my mind. I told him that I've had meningitis twice before and hopefully that was where the demyelination came from. He said it was possible, but not likely.
We went to the neurologist, and did some tests and a spinal tap (I've had two before, but this one was by far the worst). When I went back for the results, they told me it was very unusual because I had conflicting test results. Some tests said I was positive for MS and one was negative. They recommended that they treat me as if I had MS and began educating me on the treatment options. They told me the key to having any quality of life with MS was to treat as soon as possible. I was scared thinking I would live the rest of my life under these treatments, because they sounded awful. They gave me a month to think about it and I immediately called around to get a second opinion. I got into a specialist in Salt Lake and met with him a few weeks later. They told me it was perplexing and could understand the confusion but that there were more tests to be done. They ordered a second MRI on my spine, a steroid transfusion to fix my left side, and an echo cardiogram.
The day after Christmas I started. I first had the infusion, which I do think helped the weakness although added a good 15 lbs. The echo cardiogram was the biggest step, they informed me I have a hole in my heart (PFO). They shot bubbles into my arm and then brain. They told me on a scale of 0-5 I was a 5+ for the amount of unoxygenated blood that was reaching my brain. This news is both good and bad. Good news, it may explain some of my MS symptoms, so hopefully I don't have MS. Bad news, I may still have MS AND a hole in my heart. My two older sisters had holes in their hearts, but had completely different symptoms (migraines, vertigo, etc). They both had surgery, so I knew what was coming my way. PFO's can run in families. My PFO symptoms: it makes me lethargic, I get confused, super forgetful, and I get vertigo. We're also hoping to blame the weakness, the face tingling and the demyelination on it too. I'm taking aspirin to prevent a stroke and I'm trying to not let my heart race, so keeping those panic attacks in check. No exercising, trying not to lift the twins, etc. They told me to cut out stress (lol!) It has definitely made me rethink my entire life, every time I exerted myself, exercised, did a stomach crunch, I was at risk for a stroke. The fact that I have had 4 children, all vaginally, is baffling. I haven't had much tingling in my face for the last little while. However the other day I was scrubbing some pans and there was a burst in my face. Freaked the heck out of me. My in-laws Lee and Maria are graciously providing someone to now clean the house. LIFESAVER! I will most likely be having surgery to close the hole in February. My appt is on Feb 5th with the cardiologist and then I'll know for sure when it will be.
I had the MRI and the good news was, there were no MS lesions on my spine, however the radiologist noticed I have nodules on my thyroid. Again, good and bad news. We're hopeful we can blame all these symptoms on the PFO and the thyroid. I've had an ultrasound on my thyroid and a biopsy (not fun at all-like.at.all) the good news is that its not cancer, bad news, they don't know what it is. I will be starting thyroid medication after my heart surgery. I've now lost count at all the blood pokes and needles. YUCK! I do have to give myself Vitamin B12 shots once a week. I'm also really low on vitamin D3, so I'm supplementing.
In the middle of this, my sister was diagnosed with Breast Cancer. She had surgery and started Chemo last week. So I went to get a baseline mammogram and they found a mass. I had an ultra sound and they said it was a cyst. They are pretty confident it's benign but I have a follow up appointment to figure out the next step. I will be getting genetic testing next month to see if I have the cancer gene. My sister does have the BRCA II gene.
So that is where we are. There is so much more to this story, but that is the gist of it. We are so glad to finally have some answers and feel like we are making progress. It's been very hard, but we are looking forward to more answers and surgeries so I can get back to raising my little ones. They have had an absent doped up mother for months now and it's not fair to them. I have had so many angels helping me, taking my kids where they need to go, cleaning m house, making meals, you name it. We're truly blessed.
I'm blogging about this because I think people are beginning to wonder why I've been such a hermit lately. I've also forgotten about a million things. So I promise I'm not crazy :) (that we've discovered yet!) So I'll be updating on here so I don't have to keep trying to update people with emails and texts.
My other purpose on posting all this is to bring awareness to some of these problems. If a Dr tells you they aren't 100% sure on a diagnosis, please get a second opinion. And please tell your Dr all the little annoying things that are happening with you. I almost didn't mention the tingling in the face.
PS Sorry this post is so somber! I'm working on my attitude :) I will post happier next time I promise.
Friday, November 4, 2011
Strawberry Days 2011
Our town has Strawberry Days in June right around Madalyn's birthday. We had so much fun last year, we decided to go again. This time around we also walked in the children's parade with our ward. It was so fun! It was a little chaotic at first, but my brilliant friend Shanda decided to give each kid a blue balloon to hold and so we knew where each kid was at all times. It was easy to keep them together!
Waiting for the Parade to start
Here we go! The Blue Balloon Brigade
The kids LOVED the roller coaster. Maddi is a crazy girl!
The babies were able to go on a few of the little little rides but they mostly stayed in the stroller and played around.
Ferris Wheel! No kid threw up on us this year!
Oh this ride. This is the first one we did and Andrew sat on my lap and promptly started screaming and wanted to get off. There was only one way down, down the slide. So holding him screaming and kicking, we slid down in front of TONS of people. Ah, good times. He kept he was so scared and I felt bad but there wasn't a whole lot I could do but just go down the slide. At the end of the day I was asking them what their favorite ride was. And you guessed it, this slide was Andrew's favorite. He is a CRAZY kid! Yes we do have the whole debacle on video but I don't know how to upload those yet.
We absolutely love the town we live in and love all the things they offer. we can't wait for Strawberry Days next year!!!Sunday, October 16, 2011
Maddi's Birthday!
Maddi turned seven this year which COMPLETELY weirds me out! We told her she could pick somewhere to eat and then do an activity and invite one friend. She picked: Panda Express, bowling, and Kadence.
We let the babies walk around at first and it just got CRAZY. They wanted to play with the bowling balls that were popping up from the return and kept smashing their fingers. And each time someone went up to bowl they would run up behind them. We went out to the car, grabbed the stroller and strapped them in. They did not like that one bit. So we bought them some pretzels and that appeased them for a bit.
Maddi helped me design the cake she wanted
On Father's day she opened some presents from my family. She got Charlotte's Web and the Wizard of Oz.
She LOVES that hula hoop! And we got some pretty great video of my dad but I think he'd kill me if I posted it!
A cute outfit from her auntsMaddi's Spring Dance Recital
Maddi's Spring Dance Recital this year was with the Dance Company. She REALLY liked it and worked really hard. I thought she was one of the best ones! Here she is on stage in the middle back. Her hair went SUPER curly, LOVED IT!
Andrew brought her flowers :)
She got a trophy! I never got a trophy....
Maddi and Kadence
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