Yucky news...

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Oh, Niki (((hug)))

Oh, Niki (((hug)))

Tuning in late as always (my motto, but TAKS last week really damn near did me in), but ugh! what a *itch!!! I am so, so sorry that you are having to deal with all of this. It does sound like you have made some progress, though, in getting some answers.............but the aggravation of it all.................plus, time spent, and gray hairs gathered...............geez!

SEnding lots of hugs and laying on the prayers. Much love. J.
 
No news today... I got really busy at work today (tomorrow will be worse) and completely forgot to call about my INRatio training. I'm HOPING to call tomorrow, but have so much on my plate for the day (Poetry Cafe, Poetry Quilts, ABC books, Poetry contest, etc.-- can you tell we're wrapping up Poetry Month?) that I'm not sure if I'll get a chance or not. It still really agrivates me that the trainer/nurse didn't call.

As for DeVille, I noticed on my caller ID that someone from his office called my house around 10 AM, but no one left a message and no one tried calling my cell. I didn't get home until after 5 PM so I figured there was no point in trying to call. Again, I am going to TRY to call tomorrow and see if there has been any progress. God, I hope so! This waiting is killing me!

That's all for now. Hopefully I'll have more of an update tomorrow. Keep your fingers crossed.
 
Niki, I'm sorry everyone is being jerks. I hope you can get lots of people doing what they are supposed to be doing tomorrow, just sigh, Lyn
 
Here's the latest in the drama:

Finally some answers! But I had to go about it the hard way. Apparently my heart is fed up with the waiting too, so it decided to act up on me and THAT is what finally got me some answers... Allow me to back up a bit.

We'll begin with trying to set up INRatio training:

I tried to call around 8:30 this morning, and didn't get ahold of anyone. I didn't leave a message, since I knew it was impossible for me to get a call back with any answers. Around 2:00 I had a few minutes, so I decided to try calling again, expecting the same results. However, this time I actually got through! She transfered me to whoever I was supposed to be talking to and when I explained that I was supposed to have gotten a training call last Wed. but never did, she looked it up and in the computer it said the training was "cancelled" because the patient had not received the monitor yet. I said that was rediculous because not only did I get the monitor, but no one called me to find out one way or the other. At this point, she decided to get the nurse on the line to help figure it out. Come to find out, the nurse DID call someone that night, and that person did NOT have her monitor yet. However, and I don't know how this happened, it was someone by the name of "J" HerrEn. I still don't get it, since the computer had MY number under this "J" person, and her's in my name. The address for me was correct, as was all the other info. But somehow HER name was in my time slot for training... I don't get it. At any rate, we got it worked out and now I'm reset for 5:30 tomorrow. Hopefully I'll be here...

Now for the DeVille saga:

This morning at 8:30 I called DeVille's office and left a message for Dustin. I left my work number and extension, explaining that if I didn't answer he should call the main number and leave a message with the front office OR he could leave a message on my cell phone (I left that number too). I tried again as soon as school let out (around 3-ish) and once again had to leave a message. I told him that school was now out and he should call me on my cell phone (again, I left that number). As soon as school was out I carried my cell with me everwhere I went, in case he called. Around 3:45 I left work to head to the post office. While waiting in the post office line my heart started doing 'funky' things. I tried to take my pulse, but it was very irratic. About 5 seconds of fast beats, then 5 seconds of skipped beats, and back and forth. Needless to say, I felt like crap. So when I finally got out of the post office, I tried calling DeVille's office again (it was bout 4:40). Again, I got Dustinn's voice mail and I left a message. I explained that not only was I interested in knowing what was going on, but now my heart was racing and I wasn't feeling good and I wanted to let DeVille know. I then went to the grocery store to get food for dinner and lunches (not to mention picking up prescriptions) and continued to feel like crap. When I got into my car I just sat for a few minutes until I felt okay enough to drive. When I got home I saw that there was a message (it was now 5:45). I listen to the message and it's Dustin telling me that he's sent the stuff to Mayo and DeVille will call them 'when he gets the chance.' Okay, not only is that an annoying way of putting it, but WHY didn't he call my cell like I asked??? I checked the caller ID and he did call before I left the message about not feeling well, so I thought MAYBE I would get another call from him. But no, of course not.

I continued to feel bad and after venting on the phone to my mom I decided to page Pearse (I knew she would call me back). After talking to her and explaining what was going on she told me to call DeVille's answering service and have him paged. So that's what I did. After half an hour the answering service called to see if he'd called me back. When I said no, they said they'd page him again. Thirty minutes later they called again. Still no call from DeVille. The next time I heard from them she had DeVille on the line so they would KNOW he'd talked to me.

So I finally got to talk to DeVille himself and he suggested that I send a defibrillator reading through my 'Carelink' device so that he could look at it (isn't it cool that they can do that over the phone now?!). He also said that he talked to the Mayo and yes, it looks like the lead has pulled back some and will need to be fixed. But he also said that after talking to them about how complicated it was to get the lead in the first time he's decided he is NOT comfortable doing the surgery himself... I said 'So I guess they want me to go back up there?' and he replied 'Let's wait and see what we get from the Carelink.'

So I'm still somewhat in limbo, but at least I'm a step closer to knowing. DeVille should be calling tonight (he said if I don't hear from him by 9 to have him paged again), and he mentioned seeing me in the office tomorrow. I imagine I should know something more, though who knows... I've been wrong so many times that I wouldn't be surprised if I know LESS tomorrow than I do today!
 
Oh, Niki ... so very sorry this "yucky news" is continuing for you.

Though, it does sound like it is steering towards the right direction in terms of getting help and answers....


Thoughts/prayers continue coming your way....



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
PICS:lego.HO.model.MCinfo.RT.CHD = http://www.chevyasylum.com/cort
"Waiting to be mended like a potter would mend a broken vase" ... Larry Gatlin & The Gatlin Brothers ... 'Broken Lady'
 
Heard from DeVille right at 9. Said he didn't see anything on the defib reading, but he wants to see me tomorrow. He suspects it was most likely something atrial that was just under what the defib would catch. When he sees me tomorrow I'm hoping to find out more about the when/where of surgery.

Thanks for your continued support and prayers!
 
Phyllis said:
Niki could it possibly be related to this thread that I posted this morning???
http://valvereplacement.com/forums/showthread.php?t=20729
I don't think so. I've only had my ICD for 6 weeks, so it's not that the wire is failing, it's that the wire moved and isn't in the right place anymore (this was finally confirmed by Mayo yesterday when they compared it to my x-ray from immediately after surgery). Because it's not in the right place, it's taking way more energy for it to actually "capture." That is why I need to have it fixed.

Interesting article, though. I didn't have ICD wires, but I have had a pacer for 23 years. Those wires are still going strong. Every time a new EP hears how long I've had my leads they are shocked. Especially since they are epicardial (on the outside of my heart). Apparently Dr. Cooley knew what he was doing (He was the one that put in my original pacer and the wires).
 
More update:

Saw DeVille today. Apparently it's not URGENT that I get the lead fixed, but if I stay at the voltage I need for it to be working I will only have around 1.25-1.75 years on this battery. He's planning on calling the EP up at the Mayo, but we also asked about TCH (Texas Chilren's Hospital), since Houston is more convenient, and he said he'd try talking with them as well. He said if I haven't heard from him by next Tuesday to call him. So I'm not expecting to do surgery any time really soon (though much sooner than I would like, of course)

At this point we're considering just waiting until next year to do anything, perhaps replacing the generator at that time as well if it's run down. When we were first talking about it he said he thought we'd have about 2.5 years, but after talking to the ICD company it was changed to the shorter time frame. I don't know what would be best overall, but at least he has assured us it's not urgent.
 
Niki,

Glad to know it is not urgent ... but, I can understand how frustrating all of this is....

Thoughts/prayers continuing for you, of course.



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
PICS:lego.HO.model.MCinfo.RT.CHD = http://www.chevyasylum.com/cort
"My arms are wide open & will always be" ... Emerson Drive ... 'Fall Into Me'
 
Actually, after thinking about it some more, I'm starting to think it might be better to get it over with in June (once school is out). That way I don't have to worry about the battery dying in the middle of the school year. Seems to me like it would sneak up on us a little more suddenly than it has in the past if it's draining so quickly. We're still going to wait until we hear back from the Mayo to make any decisions, but right now I'm thinking I could do it the second or third week of June and it won't mess up my summer plans TOO much. It gives me 4-5 weeks before my sister wants to have me watch my new nephew while she's at a conference.

Anyway, at least I am pretty certain I won't be doing it until school lets out. Hopefully my sister delivers close to her due date (May 31st) so I can spend some snuggle time with my nephew before I head out for surgery. Nathan and I talked about maybe staying in Chicago for a few days if we have to go back to MN. Up for a get together? ;)
 
Gnusgal said:
Nathan and I talked about maybe staying in Chicago for a few days if we have to go back to MN. Up for a get together? ;)

*chuckles*

Well, after the plans have fell through with Al and my buddy from the First Gen MC club this week ... while both of them are in Chicagoland, I'm not so sure I should say "yes" ... he he.

BUT ... let me know what date(s) exactly you may be in Chicago ... and we'll see what we can work out ... ok? Doesn't hurt to talk and try to plan something ;).



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
PICS:lego.HO.model.MCinfo.RT.CHD = http://www.chevyasylum.com/cort
"Not sure if I shoulda put it in writing" ... Chely Wright ... 'Single White Female'
 

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