What was that??

[Gnusgal]

Niki, do you know your Dr. at Mayo? If so, I would give them a quick call or at the very least shoot them an e-mail to let them know what is going on. I have called on my cardio there (who has always in turn checked in with my surgeon) several times with questions about my care here at home. They are always very helpful and always respond to me within an hour or so. I wish you the best in finding a solution to all that you are having to deal with at the moment.

Kim

No, I haven't called up there myself. I keep thinking that my local doc is talking to them... I guess I probably should. Except I DO NOT want to go to MN for another surgery. And I have a feeling that if I call they will say to come up there. I'm going to see if I can find out anything this morning from my local EP. If I get a dead end there I'll call my local card and get her opinion.

Thanks.

 

[Gnusgal]

Have I been out of the loop, or what? I have been battling a raging sinus infection and have been totally offline for quite a while. This will teach me to stay away. I have just read through this whole thread and feel like I have just been on your roller coaster ride with you. Cheering and then stomach in mouth..........gosh! You are now at the top of our prayers. I will be tuned in. Please keep us posted and let me know if I can do anything, anything at all! Good luck on the surrogacy stuff as well. Just a thought, but maybe a trip to the Mayo might not be such a bad idea. Much love and major hugs. Janet

Eh. I just figured you didn't care anymore.

I'm avoiding a trip to the Mayo if at all possible. This last surgery SHOULD have been the end of it. And the lead that was replaced is doing great. It's a completely bizarre occurrence that the whole thing moved like it did. Could have happened anywhere. I don't blame my EP. He's the best here in town, and he's done a billion of them. I know he'll send me to the Mayo if he thinks it is the best solution. I trust him in that regard. It's his communication skills that stink.

 

[debster913]

Hey, Niki!!!

I just read through your entire thread as well. Oh, girl ((((HUGS)))), you are so in my thoughts and prayers.

Geez, I know what you mean about doctors/scheduling/mess. It took me three weeks and countless hours on hold just to get my surgery date. I was about to do the danged valve surgery myself!!! Grrrrr...

I'm wishing you the best!!!

Love,
Debi (debster913)

 

[Gnusgal]

Since I know how frustrating it has been for ME to not get an update, I figured I'd send one out to all of you.

I went to Dr. DeVille's office this morning so the NP could check my incision and so I could show him my uvula (you know, the thing that hangs down in the back of your throat? Mine's swollen and yucky looking.). After he looked over everything, Nathan and I pretty much poured our guts out about how frustrated we have been with not knowing anything and no one seeming to bother keeping us in the loop. He said he completely understood and then paged Dr. Deville so that he could give us any information he could. This is what he came back with (Nathan, correct me if I'm wrong or left something out):

On Wed. Dr. DeVille decided he wanted a little more data before taking me back into surgery on Thursday. He contacted the Mayo Clinic to see if they had some pictures that could show more precisely where my blood vessels are. They apparently did not have that information. So now he is working with Dr. Pearse, who has put him in contact with an EP at Children's here in Dallas, Dr. Scott. So now Dr. D and Dr. S are talking and trying to figure out what the best plan of action for me is... No one knows when this will be decided.

I went ahead and decided to go in to work for the second half of the day. I figured it would help keep my mind off of things and I had a bunch of stuff I needed to get done anyway. Not long after I arrived I got paged over the loud speaker to come to the office. Having no clue why they would call me down, I wandered in. Turns out Dr. Pearse was on the phone for me! I had not called her, but she felt like it was important to let me know what was going on so far (novel concept!).

She gave me almost the same exact information I'd gotten earlier in the day, but she did add a little more. She said that Dr. Scott is trying to figure out if the benefit of the bi-ventricular pacing outweighs the risks of putting me through yet another surgery. When Dr. Pearse pointed out that my heart function has improved since getting the ICD he said "but is that because of the device, or because of the meds?" Well, I can honestly say I believe it's the ICD. I had been on the meds for quite some time with no improvement. But shortly after getting the ICD there was significant improvement. To me, there is no question. But this is apparently where the doctors are now.

So I still know nothing, but at least I know who is talking about me behind my back and what the hold up is. I don't know when I will know anything, but I'm hoping we'll be more informed than we have been up to this point. I seriously doubt I'll find out anything over the weekend. It would be nice, but I won't hold my breath. I'll let you know if I turn out to be wrong.

 

[Nancy]

This is really beyond frustration for you, I am sure. It almost feels, to me anyway, like this doctor is scared of doing any more surgery on you and is hoping you will just say, "Oh, forget it, I'm going back to MN to have this done."

 

[Guest]

I'm sorry you are going through all of this, can't even imagine how you feel. Sending positive vibes to you, along with a big hug!

 

[Gnusgal]

This is really beyond frustration for you, I am sure. It almost feels, to me anyway, like this doctor is scared of doing any more surgery on you and is hoping you will just say, "Oh, forget it, I'm going back to MN to have this done."

Actually, that's not the feeling I get at all. I actually appreciate that he's not just jumping in blindly and is taking his time to make sure he does exactly what is right. That's the kind of honesty I appreciate in a doctor. One that won't pretend he's God and knows his own limitations. I trust that this doctor will not do anything that he believes will put me at risk. To me, this is a good thing.

The only reason I'm frustrated with him is because he didn't tell me any of that. I prefer to be in the loop, even if the loop isn't quite complete yet. I'm not a sit back and wait kind of patient... (I guess you could say I'm not a patient patient. )

 

[Karlynn]

Still keeping you in you in my thoughts and prayers.

I've no doubt that your recent loss report on the throw-down is stress related.

 

[Gnusgal]

Still keeping you in you in my thoughts and prayers.

I've no doubt that your recent loss report on the throw-down is stress related.

Actually, I usually eat too much when I'm stressed!

This time I think it has to do with some trauma I received from the intubation from anesthesia. My uvula has what appears to be a blood blister on it. That has made it very difficult to eat and I frequently feel nauseous because it keeps triggering my gag reflex. I showed it to the NP today and he said it does look bad, but for now we just have to wait and see if it goes down on its own. He doesn't want to try steroids just yet, since I'm so fresh out of surgery. It's not as painful as it was, but it's still very bothersome. So I haven't eaten nearly as much the last several days as I normally would. Probably not a bad thing.

 

[Karlynn]

I was wondering if the problem with your "little hangie-down thing" was due to the tube. That does sound very uncomfortable. Blood blister - yuck!

I've found that if I'm somewhat stressed - I eat. If I'm horribly stressed - I don't eat.

 

[Guest]

...and I just eat .

Niki...I cannot imagine the roller coaster ride you seem to have been on this last week or so. My goodness mercy me. Thoughts/prayers continue coming your way.....

 

[gijanet]

WEll........

WEll........

I'm glad, at least, that you now know what is going on and the reasons for the delay, even though, I'm sure, the lack of a gameplan in place is driving you nuts. It sounds like you have a good team in place and I can certainly understand not wanting to take off across the country. That is the number one problem with traveling so far for surgery/ies. YOu know we can relate to that one..........sigh! Well, you are still topping our prayers, and we are not going anywhere. I do like your new nickname, though.......the impatient patient. HOw's that for an oxymoron? Now, I know it's impossible, but try to relax this weekend. YOu have a busy week now multiplied ahead. Much love. J.

 

[Gnusgal]

Finally! An update!

It's not much, but at least it's something...

Yesterday I called Dr. Pearse to find out if she knew anything (she did not) and to tell her to pass on the message that I really want this surgery because I don't want to go back to getting worse every year. I truly believe that that third lead has been a huge help to my heart function over the past year. I also told her I want the device moved back to where it belongs, as it's currently residing in my left breast (yes, I know. too much information. sorry.) and it's very uncomfortable. She teased me about that, of course, but did tell me she'd see what she could do. I told her I hated dumping it in her lap, but she's the only one who will actually call me back.

So today I got a phone call from Dr. Pearse. I missed it at first (darn kindergarten!), called her back and she was on the phone, and was finally able to talk to her when she called back (thank goodness for Alison, my traveling librarian!). She asked if I'd heard from Dr. DeVille's office. I told her I had not. She said she'd talked to him and to Dr. Scott and they had finally talked to each other as well. And the current plan is to have the surgery done at the Baylor Heart Hospital and get special permission for Dr. Scott to come and assist. Dr. Pearse did not know anything about timing, since Dr. D had said he wanted to talk to me about it, but he was in a procedure today. I'm going to attempt to call his office in the morning. We'll see what happens.

Anyway, sorry to have kept you all in suspense. Up until today I didn't know anything! I promise to let you know anything I find out. So if you don't hear from me, it's not because I'm leaving you out.

 

[Nancy]

It sounds like progress. Now, all you need is a date to get it done.

 

[Gnusgal]

I actually talked to Dr. D himself! :-o He said he hadn't called me sooner because he wanted to be able to give me concrete answers... So this is what he said:

First of all, he confirmed that Dr. S from Children's will be involved. But he said that a third doctor (Dr. P) will be involved as well. He is a cardiologist at the Heart Hospital who has lots of experience with vascular issues. They will be trying first to insert a sheath around the existing lead so they can either reposition it or put a new lead in its place. If they can't get a sheath past the occlusion (blockage) in my artery then Dr. P will go up from my groin to balloon open the occlusion long enough to get a sheath through it. They know it won't stay open, but should at least be able to keep it open long enough to finish the procedure. If THAT doesn't work for some reason they may have to go in through another artery on the right side, which sounded really complicated since the ICD is on the left. He says he's hoping he won't have to do that because he is sure I'll probably need the right side some time in the future (didn't like hearing that, but I guess it makes sense).

He did say we could just leave me as is and not do surgery, since there is no research saying how much the third lead helps with heart function in a case like mine. However, I know that I've been feeling better in the last year and I have personally seen what a difference it has made. He asked me what I wanted to do and I told him I want the surgery to be done because I don't want to go back to getting worse every year.

So now he's got to coordinate 3 doctors' schedules to try and arrange my surgery. He's thinking it will be 2-3 weeks from now. I told him I have the egg retrieval this week and transfer next week, so that will be fine. He suggested that I try calling at the beginning of next week to see if they've gotten it scheduled.

I feel better at least knowing that he's doing everything he can to make sure we're prepared for any situation. I knew he was working on it, I just wish he could have kept me updated along the way. Oh well. At least I know something now! I'll let you know when the surgery is as soon as I find out!

 

[zipper2]

Niki, wishing you all the best and glad you were able
to speak right to your doc,himself as makes things
alot more perspective that way.
Thanks for update and keep us informed on other dates.
In my good thoughts and prayers as you have all this
to deal with and the excitement commng up....all the best

zipper2 (DEB)

 

[Andrew'sMom]

Niki,
I'm so worry you are going through all of this! I am glad to read that the docs have a plan in place to take car eof it, nd that it has not interrupted your surrogscy schedule. Best wishes always, sending hugs & prayers out to you.

 

[Gnusgal]

I have a new update... Took long enough, didn't it?

So I was SUPPOSED to have the surgery last Wednesday. But the approval process (or whatever it's called) for the doc from Children's didn't go through in time, so they had to cancel two days beforehand. I already had my favorite sub lined up and everything! So now we're set up for Nov. 10th. One week away. I asked if everything had been approved and the scheduling person acted like she had no idea what I was talking about. When I explained she said "Oh, well surely it has. It's been a week!" She said she'd be calling to make sure everything was set on Wednesday and I'd be "the first to know" if anything changed. I don't buy it. I haven't gotten ONE phone call from her. All the information I've gotten has come from ME calling her and asking questions.

Please pray that this is going to really happen. I'm starting to notice that I'm a lot more tired than I should be. The only explanation I have is the wire that's turned off. And if I'm going to be taking care of newborn twins in 8 months I can't continue feeling like this!

Thanks in advance for the prayers!

 

[Jackie]

Many good thoughts and prayers being sent your way.

 

[Eva]

You are and shall be in my prayers that all goes well and you will be healthy and strong by the time you'll have to take care of your new 'double joys'

By the way, I love your avatar.

Good luck