I'm pretty much still in the dark about what is to come. I do know that the atrial lead is in fact fractured and I will be having surgery to replace it. However, I do not know the when or where. My EP is at the hospital today, performing procedures. So when I got to his office I was checked by the ICD representative and it was confirmed that I had a fractured atrial lead. The files were hand delivered to the hospital (a good 5-10 minutes away from the office), where they are sitting and waiting for my EP to come out of the procedure he's performing so he can look at them and figure out a) how quickly this needs to be done (based on how I feel, I'm pretty sure it needs to be sooner than later), and b) if he can perform the procedure himself, or if I need to go back to the Mayo Clinic. We were waiting for TWO HOURS because, according to the rep, my EP didn't want me leaving the office until he had figured out what we were doing. That apparently didn't matter as lunch time approached. At 11:30 we were told that we could leave and they would call us. I'm hoping we won't be waiting much longer, but who knows.
What was that??
- Thread starter Gnusgal
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Mary
I hope they get back to you real quick, and whatever needs to happen to get this fixed, happens.
P
Phyllis
I hope you have heard by now and will be reporting soon that they can fix it and have done so!
Well, I'm still in limbo. I got a call from my electrophysiologist's office and they said he is waiting to hear back from the Mayo Clinic (that's where I initially had the ICD put in) before making a decision.
I did call my RE today to give them a heads up and find out if they thought this would delay things. The nurse called me back and said "What are you trying to do to me?" My response was "What am I doing to myself?!" She laughed, then asked me what exactly was going on. I explained and said I still don't know if I'll be having the surgery here or in MN, but that either way it's a simple surgery that will be done in the cath lab under sedation rather than general anesthesia. She said she mentioned it to the RE, who said he'd need more info when we have it, but that it SHOULDN'T be a problem. She said that as long as I can get in for my teaching appointment on Wednesday, I should be able to start lupron and it won't mess with my heart at all. She even said she could send med info over to my EP if he needs it, but to definitely talk to him as well. I'm supposed to call her as soon as I know more so we can make a better decision about this. I did ask if it was possible to delay things just a week, or if we'd have to scrap this cycle and wait until next month. She said if it was just a week we can adjust and it won't be a problem. Much more than that and she's not sure.
The waiting is what's killing me. I do not want to go back to MN if I can help it, but if that's what we have to do I want to get it over with. The longer we wait the crazier I'll become! :spin:
I did call my RE today to give them a heads up and find out if they thought this would delay things. The nurse called me back and said "What are you trying to do to me?" My response was "What am I doing to myself?!" She laughed, then asked me what exactly was going on. I explained and said I still don't know if I'll be having the surgery here or in MN, but that either way it's a simple surgery that will be done in the cath lab under sedation rather than general anesthesia. She said she mentioned it to the RE, who said he'd need more info when we have it, but that it SHOULDN'T be a problem. She said that as long as I can get in for my teaching appointment on Wednesday, I should be able to start lupron and it won't mess with my heart at all. She even said she could send med info over to my EP if he needs it, but to definitely talk to him as well. I'm supposed to call her as soon as I know more so we can make a better decision about this. I did ask if it was possible to delay things just a week, or if we'd have to scrap this cycle and wait until next month. She said if it was just a week we can adjust and it won't be a problem. Much more than that and she's not sure.
The waiting is what's killing me. I do not want to go back to MN if I can help it, but if that's what we have to do I want to get it over with. The longer we wait the crazier I'll become! :spin:
Debster
Well-known member
Hi Niki-I am so sorry you have to go through this. My mom has a bivent too-she just had her pacer check and they told her all about that beep when something is going on with the device-hers is set for 7am. I hope they hurry and make their decision so you can get on with things
btw-my mom has one of the recalled leads, do you know if yours is too? Please keep us posted! Deb
btw-my mom has one of the recalled leads, do you know if yours is too? Please keep us posted! DebHi Niki-I am so sorry you have to go through this. My mom has a bivent too-she just had her pacer check and they told her all about that beep when something is going on with the device-hers is set for 7am. I hope they hurry and make their decision so you can get on with things
Yeah, they told me about it way back when I got it, but I'd pretty much forgotten what it was supposed to sound like until yesterday.
I checked last night about the recalled leads. I don't think I have one of them, but I am suspicious, since I have no clue how it could have fractured. I certainly plan to ask about it when (or if) I finally get to talk to someone who isn't a middle man. I didn't get to see or talk to a doctor at all today and that is rather frustrating.
Andrew'sMom
Well-known member
Niki,
I am so sorry you are going through this. I am saying prayers that the docs will find a way to fix this fast so it does not interrupt you surrogacy cycle. Best of luck.
I am so sorry you are going through this. I am saying prayers that the docs will find a way to fix this fast so it does not interrupt you surrogacy cycle. Best of luck.
AgilityDog
Well-known member
Oh, Niki, I'm so sorry about this. I was tied up yesterday and barely got online at all, so I just found out.
I hope you won't have to travel: Dr. B. at our mutual EP practice took out one of my pacemaker leads and inserted the new defib. lead at Xmas, no problem. He said he could even drill it out if it was stuck. It sounds like this replacement should be a fairly simple surgery. Of course, you'll probably have to go off the coumadin and bridge.
Thank goodness for that Carelink, huh? Sounds like you talked to Dr. K. (she's the only female EP in the practice, to my knowledge).
Hopefully this surgery will just be a week out of your life for bridging and surgery, followed by a few weeks of bruises (ain't it always) and won't put a hitch in the "tricycle-motor" schedule.
I hope you won't have to travel: Dr. B. at our mutual EP practice took out one of my pacemaker leads and inserted the new defib. lead at Xmas, no problem. He said he could even drill it out if it was stuck. It sounds like this replacement should be a fairly simple surgery. Of course, you'll probably have to go off the coumadin and bridge.
Thank goodness for that Carelink, huh? Sounds like you talked to Dr. K. (she's the only female EP in the practice, to my knowledge).
Hopefully this surgery will just be a week out of your life for bridging and surgery, followed by a few weeks of bruises (ain't it always) and won't put a hitch in the "tricycle-motor" schedule.
I still know nothing about the when or where of surgery. I finally talked to someone at my EP's office (only because I called and asked to be called back even if it was to tell me they knew nothing). As of 3 o'clock I was told that Dr. DeVille has not even talked to Mayo yet, and as far as Ronnie knew, had not even sent anything TO the Mayo. Then he asked if I had the number for the surgeon up there that I used... Uh... no. Dr. DeVille talked to him, not me.
I asked Ronnie when he might expect for me to know something. He said "Well, I hope you'll know something this afternoon." This was at 3 PM, when DeVille hadn't even sent anything to the Mayo??? Was he serious? It is no surprise to me that it is now 6:30 and I do not know anything more. So for now I'm going to proceed with everything I had planned and when they finally get around to figuring out if this is important enough to attend to, I'll see if I can fit them in. :-( At least, that's what I feel like saying. In truth, I'm sure I'll be calling several times a day until they finally get off their rears and get this fixed. Grrr....
I asked Ronnie when he might expect for me to know something. He said "Well, I hope you'll know something this afternoon." This was at 3 PM, when DeVille hadn't even sent anything to the Mayo??? Was he serious? It is no surprise to me that it is now 6:30 and I do not know anything more. So for now I'm going to proceed with everything I had planned and when they finally get around to figuring out if this is important enough to attend to, I'll see if I can fit them in. :-( At least, that's what I feel like saying. In truth, I'm sure I'll be calling several times a day until they finally get off their rears and get this fixed. Grrr....
Yes, I talked to Dr. K. I haven't actually met her at all. Just talked to her Sunday on the phone twice.
The only problem with me is that I have "strange" anatomy. So the Mayo Clinic seems to think they are the only ones who can figure out where anything goes in my heart. At least, that was their attitude when the second ventricular lead moved a couple of months after the initial implant. I'm HOPING that with this being the atrial lead they'll be more willing to let Dr. DeVille do it. But I'm not holding my breath. I can never have things go THAT easily.
Whew! I didn't think I would end up knowing anything today, but I just got off the phone with Dr. DeVille and I feel much better. I don't know a lot, but at least I know what he's thinking and looking at before making his decision rather than feeling like he's ignoring me.
So here's the deal:
He doesn't have ALL of my data right now. Yesterday he had the new data at the hospital, but not my history data. Then he accidentally left it over there and couldn't get it today because he was at clinic all day. So today he had my old data, but not the new data. Tomorrow he hopes to have ALL the data and himself in one place so he can get a better picture.
But he did tell me there were two ways this could unfold.
1. We could insert another lead into the same spot as the old one, without removing the old one. The problem with this is that it might cause problems in that artery, such as clots or blockage. Not good.
2. We can extract the old lead and insert a new one. The problem with this is that all my scar tissue could make it difficult to extract the lead and a laser might be needed to "cut" it out, which could cause damage to the other leads and lead to needing them replaced.
So either option could have issues. However, since my lead has only been in there for a year and a half he's a bit more optimistic that extracting the lead will not require the laser. He wants to get a better picture of what he would be dealing with, so he's going to have me get an x-ray (not sure when) and might do a cardiac cath (also not sure when). He says he will not do the procedure himself unless he is 95% sure that he would be successful. At this time he thinks he can do it, though he does plan to talk to Mayo, just to get their interpretation. He told me that if I wanted it done at Mayo he wouldn't be offended. I told him, no, I'd rather have it here. He told me he would make sure to call me tomorrow with the game plan.
Now, after saying all of that I told him I was going to throw one more kink in the works. I informed him that I am supposed to start medications tomorrow for an IVF cycle with a surrogate. He asked me when the egg retrieval would be and I told him it is tentatively set for October 9th. He said that in the worst case scenario we wait until after that to do the surgery, but to go ahead and go through with the egg retrieval as planned. I don't particularly relish waiting that long, but at least I'll get to go through with the surrogacy cycle as planned. He does intend to call my RE to make sure that everything will be okay, but does not anticipate any problems. That is a huge load off of my mind.
So I'm pretty much still clueless, but at least I'm a little less frantic.
So here's the deal:
He doesn't have ALL of my data right now. Yesterday he had the new data at the hospital, but not my history data. Then he accidentally left it over there and couldn't get it today because he was at clinic all day. So today he had my old data, but not the new data. Tomorrow he hopes to have ALL the data and himself in one place so he can get a better picture.
But he did tell me there were two ways this could unfold.
1. We could insert another lead into the same spot as the old one, without removing the old one. The problem with this is that it might cause problems in that artery, such as clots or blockage. Not good.
2. We can extract the old lead and insert a new one. The problem with this is that all my scar tissue could make it difficult to extract the lead and a laser might be needed to "cut" it out, which could cause damage to the other leads and lead to needing them replaced.
So either option could have issues. However, since my lead has only been in there for a year and a half he's a bit more optimistic that extracting the lead will not require the laser. He wants to get a better picture of what he would be dealing with, so he's going to have me get an x-ray (not sure when) and might do a cardiac cath (also not sure when). He says he will not do the procedure himself unless he is 95% sure that he would be successful. At this time he thinks he can do it, though he does plan to talk to Mayo, just to get their interpretation. He told me that if I wanted it done at Mayo he wouldn't be offended. I told him, no, I'd rather have it here. He told me he would make sure to call me tomorrow with the game plan.
Now, after saying all of that I told him I was going to throw one more kink in the works. I informed him that I am supposed to start medications tomorrow for an IVF cycle with a surrogate. He asked me when the egg retrieval would be and I told him it is tentatively set for October 9th. He said that in the worst case scenario we wait until after that to do the surgery, but to go ahead and go through with the egg retrieval as planned. I don't particularly relish waiting that long, but at least I'll get to go through with the surrogacy cycle as planned. He does intend to call my RE to make sure that everything will be okay, but does not anticipate any problems. That is a huge load off of my mind.
So I'm pretty much still clueless, but at least I'm a little less frantic.
Andrew'sMom
Well-known member
Glad to see that you have a green light to go through with your surrogacy/IVF cycle! I hope your heart will behave until you get that lead replaced. Best wishes for a successful cycle/harvest/IVF!
P
Phyllis
Glad you have some answers and will keep you in my prayers for success in both procedures.
OMG, I feel AWFUL! My whole body feels heavy and drained of every ounce of energy. I can only assume this is due to the setting on the ICD, since it started yesterday before I took my first shot for the surrogacy. I didn't hear from my EP yesterday, even though he said he was going to call, so I called first thing this morning and told the nurse how I was feeling and that I will have my cell phone on me all day. Hopefully the doctor will find the time ( ) to call me today and get things moving.
I'm lucky that today I have a traveling librarian at my school (she comes every Thursday) so I can have her deal with the students and I can work in my office. But it sure is hard to work when you feel like just laying down and sleeping through it all. I hope I make it through the day!
I can only assume this is due to the setting on the ICD, since it started yesterday before I took my first shot for the surrogacy. I didn't hear from my EP yesterday, even though he said he was going to call, so I called first thing this morning and told the nurse how I was feeling and that I will have my cell phone on me all day. Hopefully the doctor will find the time ( ) to call me today and get things moving.I'm lucky that today I have a traveling librarian at my school (she comes every Thursday) so I can have her deal with the students and I can work in my office. But it sure is hard to work when you feel like just laying down and sleeping through it all.
I hope I make it through the day!
AgilityDog
Well-known member
Well, if your setting is too slow, or you are not getting paced properly because of the broken lead you will, in fact, be exhausted.
That means, of course, a visit to the EP to have the setting changed, and/or moving up that surgery. I know you don't want to do that if you can avoid it.
Keep squeeking at the EP my friend, and keep us informed.
That means, of course, a visit to the EP to have the setting changed, and/or
moving up that surgery. I know you don't want to do that if you can avoid it.Keep squeeking at the EP my friend, and keep us informed.
Well, if your setting is too slow, or you are not getting paced properly because of the broken lead you will, in fact, be exhausted.
That means, of course, a visit to the EP to have the setting changed, and/or
Keep squeeking at the EP my friend, and keep us informed.
Actually, I'd love it if I could have the surgery next week (I'd even do tomorrow!). Monday would be perfect, to tell the truth. I'd even be willing to go as late as Wednesday. It's after that that things will get complicated with the egg retrieval because I have so many monitoring appointments with the other doctor.
At this point I don't think there is anything they can do about the settings. They told me on Monday that I had two choices. Either "rate responsive" (a setting where my HR is increased based on the "activity" that the ICD detects based on a sensor that can't tell the difference between walking and sitting in a car driving down a bumpy road) or a steady 70 BPM, no matter what the activity level. I've experienced both before and hate them both. I asked for a "Plan C" but was told there wasn't one.
I've never been quite THIS miserable with the rate responsive mode, but something tells me that the problem lies with that broken lead. I cannot wait to get it fixed!!!Whew! Finally I talked to someone who is ready to take action! No, not my EP. My cardiologist! Can I just say, once again, how much I adore her!
I've been sitting here feeling miserable and wondering if my EP would ever call. After talking to DH he convinced me to just page my cardiologist (she gave me her pager number a long time ago). So I did and got a call back a few minutes later (she told me she was just about to call me when she got my page!). She is going to call my EP and also some docs at Children's here in Dallas. We're hoping that, if my EP feels it's too complicated for him, we can use a surgeon there to do it, since he'll be more familiar with congenital heart anatomy. Now I'm waiting to hear back from her as to what she finds out.
I've been sitting here feeling miserable and wondering if my EP would ever call. After talking to DH he convinced me to just page my cardiologist (she gave me her pager number a long time ago). So I did and got a call back a few minutes later (she told me she was just about to call me when she got my page!). She is going to call my EP and also some docs at Children's here in Dallas. We're hoping that, if my EP feels it's too complicated for him, we can use a surgeon there to do it, since he'll be more familiar with congenital heart anatomy. Now I'm waiting to hear back from her as to what she finds out.
P
Phyllis
Keeping my fingers crossed for you Niki!
Sheesh, this is no easy task.....best wishes continuing Niki.
