View the Virtual Procedure

Today was the originally scheduled date for my heart procedure.  I guess that makes it a fitting day to see the procedure virtually.  After the ASD closure device was implanted in my heart 2 weeks ago, I was given a card to place in my wallet stating that my device is "non-ferromagnetic/MRI safe up to 3.0 Tesla."  On the card was a web address for AGA Medical Corporation, the makers of the Amplatzer Occluder (click to view).  At their site I found 3 videos.  Check out the first 2!  The first one talks about the device itself, and the second one demonstrates how the device is placed in the heart.  They both gave me a much better understanding of what has been placed inside of me.  (The 3rd video is for a different device.)   

Thanks for all of your prayers!  Never once have I been able to feel that there is anything different about my heart.  It is just such a blessing to know that the most likely cause of my stroke has been taken care of.

God is so good! 

Tidbits

David just left for his first PT session since his heart repair. I'll be eager to hear how that goes. Last night he was bemoaning the fact that he had not been doing his exercises and that he likes to go in for these sessions in good shape. I reminded him of why he hadn't been doing his exercises - two incisions that needed to heal - doctor's orders to take it easy! He let me know he still would like to go in feeling more fit and on top of things.

In my last post I neglected to say that although he is back to work it does continue to be part time.

I also think I jinxed myself by saying I hadn't missed any deadlines - turns out I missed a BIGGY and have had to spend the last 2 days writing like a mad woman to turn out a 15+ page prospectus that was to have been turned in 4 months ago (right about the time of David's stroke . . . hmm . . . wonder how I missed that one?). Thankfully the grad office is being extremely gracious and patient with me. Without this prospectus I should not even be enrolled in the classes I'm taking this semester, nor can I apply to have my research approved.

David continues to experience ever-changing weirdness on his left side. It feels to him like things are worse, but it's hard to tell why that might be - if they actually are worse, if he is experiencing results of being less active in recent days, or if more sensation of some sort is returning which is causing it to feel different (but isn't necessarily truly worse). It's so hard to tell.

How It's Going

We are surrounded by so much love!! I am posting tonight simply because I've had so many people call or email and say, "We haven't seen an update. We don't know how David is doing." So rather than continuing to go with the "no news is good news" philosophy, let me report that David is doing GREAT! He had his first day back at work today (yes! already!). He's feeling no ill effects from last week. He had lost a tiny bit of ground in terms of his stroke recovery because he had to be down for a few days. That caused him to be more "wobbly" when he walked for a while. It really does take a concerted effort for him to maintain the ground he's made in his stroke recovery, and when he can't work at it, he does regress. At this point he looks to me to have made it up, however, and, again, the best way I can describe how he is doing is GREAT! (Yes, this is the same picture as on the last post, but I like it so much I didn't want to have it move down the page!)

I guess I took a posting break because that heart repair was, in some sense, the pinacle of this whole journey (as far as we know!). We are by no means at the end of the journey, however. As mentioned below David will have follow-up testing on his heart for at least the next 6 months - goes in for the first time in a week and a half. His physical therapy is ongoing too. He's gained a lot, but there remains so much that he's lost that he is both hoping to and working hard to regain. You wouldn't know it to look at him. In fact many people say, "If I hadn't know you'd had a stroke I'd never be able to tell." That's a very wonderful thing, but there are things not so evident to the eye that remain lost or changed. David's spirits are good, though. He continues to work hard at PT and to have a hopeful spirit but is also displaying an accepting spirit in case everything does not come back.

OK, that's the update on David, if you want to read a bit about me, I'm going to share some of that too in the words that follow.

I think part of why I took a posting break is that, although I know we are not at the end of the journey, something in me needs to rest from it for a while. In some sense the procedure David underwent Tuesday is "routine" (if any excursion into someone's heart and placement of an object into a heart can be considered routine!), yet with the way his cardiologist has spoken with us for months - expressing over and over the uniqueness and complexity of David's case - and repeating to us multiple times every time we went to his office that "You nearly died, Chief! If you have another stroke you'll die. You know your situation is complicated, Chief!" (direct quote) and having told us over and over that David had an ASD but that he knew there was more going on than the tests were showing - another hole perhaps or something else - it was a little hard for me to go into this with a truly calm heart. The surgeon coming in and calling David a "conundrum" didn't help matters! So, as much as my conscious mind was sure all would be well, I think my subconscious had a pretty strong fear that - I can't even say it - that it might not go well.

I think that fear has weighed on me over the months more than I had allowed myself to realize. In fact, I think as much as I've written so many thousands of words here since November 2 and expressed concern in words, I haven't been able to FEEL it as much as I've been able to SAY it. Up until last Friday, in all the time since David's stroke, I had not cried - got a little teary-eyed from time to time but not a serious cry. Suddenly last Friday, without warning, I finally broke down and sobbed. It came totally out of the blue - 3 days AFTER his successful procedure and four and a half months (and tens of thousands of words) after David's stroke it finally happened. I think that is a good thing, and I think it means my insides finally feel that it is safe to "let down." It had been bothering me that I hadn't cried. I'd wondered what was wrong with me, but maybe that part of me had to stay strong just in case.

I've had a very split focus for a long time, and now that I'm able to look with more clarity and fullness of vision at my studies I'm realizing that I haven't been nearly as attentive as I should have been (with good reasons, of course!) - that I've nearly missed some important deadlines. I'm feeling very incompetent as I try to pull things together in this area. My head feels a bit like it is coming out of a fog, and that's a good thing too! It's a little stressful, though, as things are staring me in the face with full force now, and I'm having to rise to the occasion when really I'd like to take a break and just kind of go with this sense of release I am feeling inside.

All of these realizations and responses inside of me have really taken me by surprise. I had no idea I'd respond this way.

A dear friend said, "Tell me the news is good! Everything I read makes it sound ambiguous." Well, unfortunately, it HAS been ambiguous, and I must say I'm with her, and it's what my heart is believing; it's good news. They found a hole, which we have every reason to believe is the sole cause of the stroke; they've fixed the hole. Now we press forward!

As I was driving around town today I was thinking of all the things over the past few months that we have to be thankful for in terms of this situation. Next time I get a burst of energy and unbury my head from my studies I'm going to post a list of as many of these thanksgivings as I can.

David's Heart Repair

The above image is the closure device in David's heart.

MAIN STORY:

The heart repair went well, and David is recovering well. We were very impressed with all those who were working with us yesterday - from nursing student who asked permission to observe to aids to nurses to technicians to surgeons.

We found there were also a lot of surprises in store for us though. We had been told for months that David has an ASD (and possibly another hole) and that we were going to Sacramento to have the one hole they knew about closed, while at the same time looking for others. Yet one of the first things the surgeon said when he came in to talk with us before the repair was, "David, you are a conundrum! Even though I've never met you your ears must have been burning, because I've been talking about you since November. I don't think you have an ASD (um - this was the first time we'd heard that, and we were there for the purpose of having his ASD closed!!!). I thought I saw a VSD in one of the tests, but the rest of the tests did not bear that out." He went on to give us a long list of things it could be and said he wanted to spend about two hours testing David - via catheterization - to see what was actually going on, since it was not yet clear to him, and all the tests he'd been reading he'd been reading from a distance. That was all a bit confusing to us, but it was immediately clear that this surgeon was extremely good at what he did, and we felt very confident in his care.

(He'd also had a couple of chest x-rays, an EKG, and an echo when he first arrived. I was there when the technician was doing the echo, and she could not find a hole - but when we talked with the surgeon, he said, "We have a phrase: 'echo-schmecho.'")

They went in, did a lot of looking around, put catheters up both legs, did find a large hole - a centimeter in diameter - which was a bit of a surprise to the surgeon. He later told us they were happy to find they had a closure device large enough on hand of the specific type he wanted to use for what he found (which was something other than what he'd expected to find). Although David was out of it for the first couple of hours of the procedure (while they were testing) he regained his alertness during the time that they were putting the device in. He was not in pain, and they allowed him to remain alert and watch what was going on. He found it very interesting to watch the process of inserting the catheter through the hole, making a twist which made the one side of the device pop open kind of like an umbrella, giving a few tugs on the catheter to make sure it was secure, twisting again to make the portion on the other side pop open, and then twist again to release the catheter from the closure device.

We are still not clear on whether it was an ASD or a PFO that they found. When the doctors came to report to me they said he had a PFO. When I said, "Oh, so it wasn't an ASD?" One of them said, "Well, ASD/PFO." I thought it had to be one or the other . . . so I'm not sure whether his comment to me meant that they were so similar that it didn't matter what we called it or if he meant it was some sort of hybrid between the two. Whatever it is, it is successfully closed now. They are still not sure that that is the only problem with his heart, nor are they sure that that is DEFINITELY what caused his stroke. Regardless of that, this was there and needed to be closed. They'll continue to monitor him over the next weeks and months by doing a series of echocardiograms, and we'll go from there.

We are so pleased - so pleased to be at this point - to have had that go so well! It is certainly an answer to much prayer. I can't help but have a tiny bit of nervousness inside me that this might not be the whole story, but it is just a tiny bit of nervousness. We feel he is in VERY good hands - not only those of the doctors but also, of course, the hands of the Great Physician our Heavenly Father - Who created David's body before his birth (Psalm 139) and knows him inside and out better than any test can show. We trust that He is sovereign and that He has ordained all of David's days for him from before David's birth.


ADDITIONAL DETAILS:
These last couple of days have really been quite an experience for us. It seems like we've been gone for a week rather than just two days!!

David is such a sweetie! Unbeknownst to me he looked up one of my favorite restaurants on the internet the night before we left so he could find one on the way up to Sacramento so that we could have a nice meal together before the big day. How sweet of him to be thinking of doing something special for me as he was anticipating going in for this heart repair. When we were at the hospital, once they finally let me in to see him again after his prep, he told me he was praying for me, for my peace. After they gave him his initial meds, which included a valium to relax him beforehand, he asked me if they had given me one too since I must be nervous! :-)

(On that last bit, I'm not sure if he was serious or joking or what, because I think the valium was already working on him!)

Here he was facing unknown findings and outcomes but thinking of me throughout.

I realized all over again that I should have internalized what I had learned from his earlier hospitalization, "I'll believe it when I see it." So much of what happened yesterday did not happen in the way we had expected it - which is certainly fine as all turned out well.

We were scheduled to meet with his surgeon at 7am, and the repair was scheduled for 9am. We'd been told he had an ASD that was going to be closed. We'd been told he'd be staying overnight. Those were the expectations we went in with.

We arrived at 6:50am. There was no talk of an appointment. They just kicked me out while they started prepping him, which I thought would take about 10 minutes but took about an hour. We had not yet met his surgeon and really wanted to at least see him and talk breifly before the surgery! We'd known for months he would be the one working on David, but we'd never seen him nor spoken with him. When they finally called me back in we asked about this, and they said, "Oh, would you like to see the doctor before surgery?" When we said, "yes," they said, "We'll page him to let him know you'd like to meet with him." Hmm . . . we thought that had been the plan all along! That's why we were there at 7 - for the appointment.

When we arrived the nurses spoke as if David would be going home that day. This surprised us, and we told them he's been told he'd be there overnight, which surprised them!

We finally got to see the surgeon. He was fantastic - clearly very knowledgable and also very personable - good bedside manner - nice guy. As noted above, we were extremely surprised by what he had to say and ended up kind of wondering what was up. Why had we been told one thing consistently for months only to travel to Sacramento for a very clear and specific reason but then be told by the surgeon that he wasn't at all sure what was going on and was certainly not convinced it was what we'd been told it was. That was a little unsettling. He'd been in contact with David's cardiologist for months; why hadn't we been given even a hint of this uncertainty? He listed about 5 different things that could actually be wrong with David's heart other than what we'd been told - some of which were hard to determine.

David's situation had already been called "unique" and "complicated" by his cardiologist; now here the surgeon was calling him a "conundrum" - not exactly things you want to hear from your heart specialists!

I'd checked online the night before to see how long to expect the procedure to be (assuming it was a closure) and got information that it would be 2 to 4 hours. We asked the nurses that morning and were told it would take only about an hour. Then, in talking with the surgeon, he said he wanted to spend 2 hours testing (checking O2 levels in the right chambers then checking some things in the left chambers then a third thing) and then, if he found a hole to close that he would be doing that. It ended up taking about 3 1/2 hours. He then had to lie flat on his back for 6 hours, which caused him FAR more discomfort than any aspect of the procedure.

Perhaps I have now internalized the "I'll believe it when it happens" philosophy I had mentioned last fall!

I was surprised at all the blood thinners they gave David during all this (since he'd been told to switch from Coumadin to Lovenox and then get off Lovenox the day before). He was given aspirin, Lovenox, Heparin, and Plavix. Somehow they made a mistake and ended up double dosing him on the Plavix, so he ended up with some bleeding problems. They almost ended up keeping him overnight afterall because of that, as it took some time to get it under control. As it turned out, they did release him at about 8pm, and it was so wonderful to be able to be in our own home last night.

David felt so good at being home that he was up too much that evening - wanting to read to the boys and kiss them goodnight and so on - regular bedtime routine - as well as just wanting to be up after having been on his back all day, but we both learned a lesson as he began bleeding again quite significantly last night. We got that under control, and he is REALLY taking it easy today - staying in the recliner or in bed other than just a few minutes up when necessary.

Although the boys never expressed any worry, it was evident that they were experiencing concern about all this. David shared with me that Jacob has been more "huggy" than usual with him for the last week, and it was really cool to see their eyes light up when Dad came home last night. Their hugs last night were so tender and wonderful. I think part of why David was up more than he should have been last night was not only his own sense of feeling good but also wanting to reassure the boys that all was well and normal in our home.

We are so very pleased to be at this point.

David still has his sights set on running the Sacramento marathon in December. Interestingly, the student nurse we met yesterday is a distance running and is a "pacer" for that marathon. They both agreed they'd be looking for each other in December. If that can happen, what an incredibly happy ending to the story that will be!

Quick

I'm too tired to write more now, but I just wanted to post that all went well today. There are lots of details, and I'll get those up as soon as I can. Thanks for prayers being said on our behalf!

The Heart of the Matter

Well, this week we get to the heart of the matter - both figuratively and literally! :-)

Tomorrow (Monday) David and I will head to Sacramento. We meet with his surgeon at 7am Tuesday morning, and his heart repair is scheduled for 9am.

It feels strange to be writing these words as this has been such a long time in coming; I can hardly believe the time is finally here. We've known since mid-November it needed to happen, but David needed 3 or 4 months to recover enough from his stroke before this could be done.

If all goes well David will only have an overnight hospital stay and will have a week of recovery at home.

Tests have shown that there is more going on in David's heart than just the ASD but have not been able to pinpoint what the other issue(s) is(are) - which is why his cardiologist keeps calling his situation "unique" and "complicated" and why he is sending him out of town for surgery. As the doctors are working with him Tuesday they will not only be using the catheter but also a TEE (transesophageal echocardiogram) to get a REALLY good look at what's going on in there, so they're goin' in from top and bottom - and hopefully will get to the bottom of things!!

We continue to be overwhelmed with gratitude for the love and encouragement people have shown us, and we are so thankful for the prayers that are being said for us.

Answer

After numerous calls David did get in touch with someone in his cardiologists office who said that yes, given his condition he MUST "bridge" between going off coumadin and having surgery (yet it had been the cardiologist and cardiac surgeon who had told him he did not need to - in fact, we had questioned his cardiologist more than once at the last visit, and he insisted repeatedly that David just stop the coumadin and go on nothing else). At least now we have a single answer as to what he is to do and that is that he will stop coumadin today and will learn how to self-administer shots of lovenox this afternoon. I feel relieved that we now have clear direction from all facets of his care team, and it is not our choice but what is agreed upon medically as the right thing to do.

Discrepancies before Surgery

Hi - Heidi here - David is getting conflicting doctor's orders as to how to handle his meds before surgery - which is coming up in just 4 days. He's been making a lot of phone calls to his cardiologist's office, to his surgeon's office, to his primary care doctor's office and to the coumadin clinic as to when to get off coumadin and whether or not to replace it with a shorter-acting anticoagulant (like Lovenox or Heparin) in these next few days.

As non-medical personel we don't know exactly the significance of making one choice over the other (although we do know he's on coumadin to keep him from having another stroke but also that his blood levels need to change before surgery). Right now David is in the position of having to decide for himself which doctor's advice to follow.

We'd been told for months now that 5 days before surgery he would need to stop the Coumadin and replace it with self-administered shots of Lovenox. This is what the coumadin clinic and his primary care doctor maintain he needs to do, but his cardiologist and cardiac surgeon have told him just to stop the coumadin 3 or 4 days before surgery and not replace it with anything. Of course, the specialists should know best, but not only does it conflict with what his primary care doctor is ordering and the coumadin clinic is stating, but it is also conflicing with what we'd been told for months.

Maybe there is not a significant difference. We are not trained in this area and thus don't know how big a deal this is. It would be helpful to us, however, to have David's doctors on the same page so that we have a clear direction FROM THEM rather than being left in a spot to have to make a decision about something that seems to us to be significant.

(And you know how those calls can go to doctors: you call, you get the nurse, the nurse talks to the doctor, at some point later you get a call back from the nurse, if you are not in they leave a message asking you to call back but leaving no information (HIPPA, you know), so you have to return the call, usually end up leaving a message again, etc., and he's got multiple calls like this that he's making, and he's making them from work. This is Friday. Surgery's Tuesday. He really needs to know what to do TODAY one way or the other.)