Good Stuff!

We haven't had much to post lately about David's medical situation and ongoing recovery, but we got some items of good news today. He has been approved to go back to English Oaks for more physical therapy, and he has an appointment (June 5) to go to UCSF and have a 60 minute appointment with a neurovascular doctor there.

It's our hope that with these two items in the future he will be able to continue to make gains physically and may also get some more answers about his situation.

We are also thankful that his heart repair took place as early in the spring as it did, as David had been signed up to go to Washington DC with Jacob's 8th-grade class and had been concerned he might not get to go depending on the time of that procedure. He is going, and they will be leaving Saturday and coming back the next Saturday. If you are praying for us, would you please pray for David to have strength and energy necessary to take this on? It's a pretty grueling trip - on the move all the time - and he still gets tired when we walk one mile together. He's also had a cold for the last 5 weeks. I'm just a bit worried about the toll it might take on him.

So anyway, just a lot of good news - a bonding time coming up for Jacob and his dad that we weren't sure would get to come about, more physical therapy which David needs, and an appointment at UCSF.

Another First

This week marks David's first full week back at work since his stroke. To put it in perspective his last full 5-day week at work was the week before Halloween. So, this marks a new adjustment for him and us.

Insurance approval on his physical therapy ended last week. We are working on getting approval for him to go to English Oaks once a month - for feedback on progress and for suggestions from the physical therapists.

David is doing very well, and when we look back on the days when he could not even move in bed on his own we realize how far he has come, but there is a lot yet that has not come back that would be nice to have back, God willing. To give one example illustrating this, yesterday he and I went for a walk, and he apologized to me partway through, saying, "I'm sorry I'm not very communicative. I'm having to focus so much on getting this leg to do what it needs to do that I can't focus on having a conversation."

We are SO grateful for the healing he has experienced, but it is also the case that it sure would be wonderful if he could walk without having to concentrate on it so hard. We hope that can yet come.

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.)

New Time Frame

3/4/08
appointment with orthopedist - necessary before more physical therapy since it is now known that the meniscus is torn - discussion of possible knee surgery

3/11/08
heart repair (moved up from 3/25/08)

Now That Was Fast!

Yep. It has been confirmed. I received a phone call this afternoon from my primary care physician's office (less than 24 hours after my MRI!) saying that yesterday's MRI did show a tear in my meniscus. Bummer. I guess I pretty much knew that to be the case already from the type of pain I was experiencing, but it's still a bit of a bummer to have it confirmed. So, now I'll wait for a call to set up an appointment with yet another doctor. I know that a meniscus tear can be repaired pretty easily with outpatient surgery. We'll have to see how that procedure might fit into the whole sequence of events that are ahead of me. I have a feeling that my cardiologist will have something to say about when he feels it is wise and safe to have this type of procedure done.

I'll keep you informed.

It just keeps getting more interesting, doesn't it?

A Piece of Cake

I'll get to the cake in a moment, but first I'll give you a quick update on my appointment yesterday with my cardiologist.

He was quite surprised to see me in his office yesterday, thinking that my heart surgery was scheduled for the next day (a Tuesday), then quickly recovering and realizing that the surgery is scheduled for March, not February. Heidi and I used this visit to ask as many questions as we could think of about the procedure, preparation for the procedure, recovery from the procedure, and any other questions we had about this heart condition of mine. We went away feeling like we had gotten most of our questions answered and now will await the date of surgery itself.

I had an interesting discovery the other day as I was working on one of my new exercises for therapy. It involves a lunge (or a large step with one foot forward), and then a rotation of the upper body in the direction of the forward foot to the point that I extend both arms behind me to that side and turn my head to look straight back down my extended arm. Basically my torso and upper body are twisted in the opposite direction from my hips and lower body. It's really quite a cool and challenging exercise and one that totally shows the deficiency of the left side of my body. When I plant my right foot forward and turn the upper body to look back to the right, things are pretty good. When I plant my left foot forward and try to position my arms and upper body to look back to the left, . . well let's just say it doesn't work. There must be many, many muscles in the leg that work to balance the body, and they just are not fully functioning at this time on that left side. This helps me understand so much better why my walking takes so much concentration, and why my muscles get so fatigued so quickly. A helpful insight.

Now for the cake. The MRI of my knee was taken care of this evening. It was done here at Memorial Hospital which can be seen from my front doorstep. The test took 20 minutes (I didn't even wait for a minute in the waiting room), and my head didn't even go into the machine. I didn't have to follow any instructions bout holding my breath either, so I took a little nap. I was back home 30 minutes after I left the house. It was a piece of cake!

We should get results in a couple of days.

Thanks again for your prayers!

Good News

My cardiologist warned me that it would take a while to get approval for my heart catheterization procedure since we were requesting that it be done by a heart surgeon in Sacramento who is outside of our medical group. Well, it has been just over two weeks now and I have been busy pestering Utilization Management about the status of our request and have been blessed by many friends who have been in prayer about this issue, and guess what? I received two phone calls today. The first call was from my cardiologist's office saying that we had gotten insurance approval for the procedure. The second was a call from the surgeon's office in Sacramento wanting to schedule the procedure. Wow!

The procedure to close the hole in my heart is now scheduled for the morning of Tuesday (yes, TUESDAY), March 25 at Sutter Memorial Hospital in Sacramento. The nurse scheduling the procedure read through the preparation instructions that she would be mailing to me and answered a few of my questions. It sounds like I will be attended by three doctors during the procedure. This will include the surgeon, my cardiologist and another heart specialist. I also found out that it will require an overnight stay in the hospital and probably about a week's worth of recovery before I am back on my feet and at work. That doesn't sound too bad, and I sure am eager to get that hole taken care of.

Heidi posted some of my frustrations about 10 days ago with my lack of progress and even regression as I continued plugging away at my therapy. That was a pretty down day and I think it was an important turning point in my recovery battle. I think that it was that day that really helped me come to terms with the realization of what some of my long term limitations may be. It appears that I may never get full function of my left hand and all of the sensation that I used to enjoy there. It also appears that my left leg and foot may continue to function at a limited capacity. As I have gained more and more mobility in my leg, I continue to have a tight pull and pain in that leg as I straighten it fully. This is most noticeable in the night as I turn onto my back and straighten the leg. It wakes me up each time it goes through that motion. The other very obvious ramification is noticed when I attempt to run. I can do something that looks quite a bit like jogging or runnung, but every time that left leg reaches forward in its runnung stride, it kicks back before it is fully extended and pounds the ground. It looks pretty funny and makes a lot of noise on the pavement. It also is pretty hard on the joints. So, when I do attempt to run, I go to a park and run on the grass where I have a pretty good cushion. I was hoping to see the motion improve over time, but am not seeing that happen so far.

So, I am going to keep working at my rehab goals and praying for continued improvement (I am still planning on that marathon on December 7), but at he same time am going to do my best to accept the fact that some things may never return to "normal".

Once again I want to say "thank you" to all of you who have been thinking of me, praying for me, and encouraging me with your kind words and notes. What a blessing to be surrounded by so many wonderful people! You are such a blessing to me and my family.

Hand-Off

As I deal with my health issues (mentioned in the last post) and also with finding a balance of meds that will take care of them without triggering other issues (such as ulcerative colitis), I'm going to pass the baton to David in terms of keeping up this page.
I'm hoping to continue posting light fare on my main blog page. When things turn around for me and/or when David has his surgery and can't post, I'll take up the baton here again.

PCP Visit (Edited)

I went with David this morning for his follow-up with his primary care doctor. I'm finally getting used to not expecting big revelations when we go in, which is a good thing. So much of this is just simply touching base - keeping in touch.

We had both thought that the x-ray he had a while back was to determine whether or not he had a meniscus tear, but we learned today that an x-ray doesn't necessarily show that. (We do keep learning things!) Since David is still experiencing knee pain and "clicking," the doctor has ordered an MRI, which should take place next week. With that they will be looking specifically for a meniscus tear.

Permission (from insurance) for surgery to take place is still pending.

This was the first time I'd been able to go to a primary care doctor visit with him since his stroke. I like being there; there are things I learn that are not necessarily things that are "big" enough for David to think to tell me after he's gone on his own. For instance, it was pretty amazing to see the doctor check David's reflexes in his left leg. I thought they'd be diminished. I was wrong! His leg just kicked WAY out there. We talked about that with the doctor and found out it is normal for reflexes to be exaggerated on the side that is impacted by a stroke.

David asked if his over-sensitivity was related to that. Yes it is.

We talked about it on the way home. It's such a weird combination. He's both lacking sensitivity and has greatly increased sensitivity. For instance, the other night he was trying to reach over and give me a back rub in bed, and he couldn't tell if he was touching me or not. He also continues to have trouble holding onto things. (The other day he was in the kitchen, and I heard something shatter --- again --- didn't even dare to look and haven't asked yet what it was.) However, if he has the vent or heater on in the vehicle and it blows on his left arm, it nearly drives him crazy, and he is overly sensitive to heat and cold on that side.

He made some comment to me while we were talking about this that it seems the stroke has caused his nerves to rebel and to work against him rather than for him.

He continues to have numbness and tingling on that left side.

As I shared in an earlier post, his spirits are better than they were last week. I'm guessing another part of why he was "down" then is that as time goes on his window for getting function back on his left side is narrowing, so as time goes by he is eager to see more and more progress before that window closes. I think that's part of what got to him - maybe a bit of panic.

Part of my editing of this post has to do cutting a long portion that has to do with my current spirits. Suffice it to say I'm struggling mightily with autoimmune issues (causing a lot of pain) and with my sleep disorder (currently averaging 1 to 2 hours of sleep per night). This does not make for a very cheerful person - nor one who can be much of a support to the rest of her family. A night or two of sleep would do me (and thus all of us) a world of good! Currently the pain and sleep deprivation are making my insides feel like the guy in the image at right looks, and that needs to change!

Additional editing - we got a couple of calls later in the day - after I had first blogged this post. David's MRI for his knee is set for February 26, and, from what I understand, David's heart repair has been approved and a contract has been sent to the surgeon for him to agree to, so it is in the surgeon's hands now. (????) I have no idea if my understanding is accurate or not, but it sounds like the wheels are moving.

Oh, and after talking to a doctor friend tonight I understand the exaggerated reflex thing - although I'm not sure I can explain it accurately or well. Reflexes are controlled by the spinal cord. The brain acts to inhibit them. So, when David's knee gets hit with the little mallet a reaction is triggered by his spinal cord without normal inhibition from the brain. As I said, we are learning a lot!

Comment

Upon hearing where David is "at" right now, a friend wrote:

Sure hope David's walking will reverse itself to improvement once again - wondering if it is from time of diminished therapy that is the culprit or something else -

Maybe that is it; we really don't know - makes sense, though. He seems a bit improved last night and today.

Further Reflection

Following up on the last post, my sense is that if David were at a place - even a place of physical disability - where he knew he was going to stay permanently, he would be able to accept it well and move on with those limitations. To have worked so hard and made such progress and then to be regressing and not know why - or where the regression will stop - is what is particularly confusing and frustrating.

vá para trás

Well, I'm sure I haven't spelled it right, but I'm running out of titles other than "David Update" or "Please Pray." When we play cards with my parents, especially the Portuguese bidding game Pedro, if somebody goes back their bid my dad says something that sounds like "vi patrrazh." It means "going back." I checked an English to Portuguese Dictionary online, and "vá para trás" is the closest I can come. (Maybe one of my Portuguese family or friends can help me out here.)

David seems to be going backwards, losing ground, "vi patrrazh."

He's backed off on some of his exercises, thinking he was overdoing it, which was causing his intense knee pain. He's finally back at English Oaks getting really good, appropriate therapy - only once a week, though. In his last visit he had two therapists working with him at once - and another one jumped in who could see something wrong - something about the position of his pelvis as he walks. ALL THREE of them were then working with David at the same time, but David cannot feel or sense what it is they are talking about - even when they use a full length mirror and pictures of his posture to try to show him, he can't tell what it is that's different between what he's doing and what he should be doing.

Not only is it not getting better, but he seems to injure something now every time he walks or exercises at all - something that hadn't been happening in the first couple of weeks and months. We don't understand why it is happening now. He cannot walk as well as he did a few weeks ago. Tonight he went for a walk around a small block in the neighborhood (at most a quarter mile) and came back feeling he had sprained something between his foot and his shin - just from having walked - didn't twist it or anything. His limp is becoming more and more pronounced. He said to me the other day, "I think I'm going to need to go back to the cane." He said it feels like there is a muscle in the back of his left leg that should be there but just isn't there and that he often now feels like his leg is going to give way, and he is going to fall down.

David has had such good spirits throughout this whole experience. Even in the ER on the day of his stroke when he was totally paralyzed on his left side and unsure what the future held - whether he would be permanently paralyzed - and (at the very beginning) whether or not he would live - his comment was, "Well, I've got my voice and my right arm. That's all I need." Positivity is always his first response, and typically his permanent response.

He's been very diligent about following all advice given to him by medical personnel and also very diligent about doing his therapy homework. He's been working very hard. He saw progress coming quickly in the beginning, and now that he continues to work so hard to progress but finds himself losing ground he had gained, he is finally getting to the point of being quite discouraged. I can't say that I blame him. I'm certainly concerned too. So our prayer right now is for his spirits as well as for this to turn around in the right direction physically.

He keeps dropping things too. In fact, tonight as I was asking him what hurt he kind of jokingly said his feet hurt because he keeps dropping things on them - one of those things recently being a knife! (I hadn't known that until just now!)

One piece of good news is that David did hear from the surgeon's office in Sacramento again. They have succeeded in getting the testing approved (the trans-esophageal echocardiogram) that the doctor wants to do during the catheterization, but they have not yet gotten the catheterization procedure approved. They are working on it.

Hurry Up and Wait!

Well, I think I need to learn to curb my feelings of excited anticipation, because I think it's what leads to some of the frustration I end up posting after appointments! I just always eagerly expect progress and answers each time we get to interact with medical personnel in some way.

I got very excited this morning to find two messages for David on the answering machine - one from his local doctor's office and one from the office of the surgeon in Sacramento. YEA!

I called him at work to give him the numbers to call back. When he got home I found out that the local doctor's office let him know that his knee x-rays showed nothing - which is good, because it means that he doesn't have a torn meniscus - but is also frustrating, because he's in a lot of pain, and it's affecting his walking, and we don't know what is causing it. The PTs tell him it doesn't have to do with his ligaments or tendons - which is also good news, but what is it?

Now his left elbow is beginning to hurt too (and if he knew I was writing all these details right now he'd probably be embarrassed and feel like a whiner - but it's ME sharing it, not HIM, so he's not whining! In fact, I think he is often too stoic.). He's wondering if these joint pains are normal after a stroke and recovery from paralysis, but my thought is that if this is normal he would have been told that. So we yet await answers.

As to the surgeon's office, they called to get insurance info, and it turns out that the hospital the surgeon is affiliated with does not contract with our insurance company, so the surgeon's office has to work to get this approved (for him to even do the procedure) AND to find another hospital in which to have the operation take place.

I think this is progress, but I keep expecting full steps forward, and it seems we are taking quarter-steps only.

We have seen God answer "yes" to so many of our prayers, we recognize that and are so grateful. If you are someone who is praying for us, would you please pray that the insurance details will be worked out so that it can happen sooner rather than later that David can have the heart repair that he needs. Thank you so much!

(PS We just went to see the movie "The Diving Bell and the Butterfly," which is the true story of a man who at age - get this - 42 - has a stroke. He is left totally paralyzed except for his left eyelid. He has his eyelid, his imagination, and his memory, and that's it. Boy do we have it good!! This man, Jean-Dominique Bauby, editor of the French Elle magazine before his stroke, is able to dictate his inner life one letter at a time by blinking. It was a very impacting movie for us to see. I'm reminded again to be so thankful David's clot lodged where it did in his brain instead of someplace else. Warning: if you decide to see the movie, be aware it does contain some nudity and sensual scenes.)

Tidbits

There are lots of "little" things going on - ups and downs - if interested, read on.

David's initial permission to go back to English Oaks had not included occupational therapy. He was able to get that added on (although not as many visits as we had hoped), so today he had physical therapy at English Oaks and an hour of re-assessment by an occupational therapist. During the assessment it was found that he has lost ground - particularly in the area of strength - since having left English Oaks, but there was a manipulative activity she had him do that he was able to do a minute faster than he had done when she last evaluated him at English Oaks. So, he has both lost and gained.

His physical therapist was concerned enough about his knee pain to have him call his primary care doctor, and David was able to get in and get it x-rayed TODAY. We hope to hear early next week what is going on with his knee.

David found out that there is a free community stroke recovery program at the local YMCA, so he's going to check that out. It sounds like they work out together in the pool, lead by a PT, and it also sounds like it would make for good networking for David - giving him opportunity to share with and learn from other stroke survivors.

My Understanding

Upon reflection on the appointment yesterday and talking with a friend of mine who is a doctor, let me try again to express my understanding of David's situation - which seems to me to be at least a bit clearer tonight.

There is no question that David has an ASD (atrial septal defect), a hole between his atria (the two upper chambers of the heart). This is something that has been there undetected all his life, but it finally got to a point that the right side of his heart became enlarged as a result, which caused blood to flow in the wrong direction, which allowed a clot that otherwise would have been filtered out by his lungs to travel to his brain, thus causing a stroke. There is no question that this hole must be closed. From what I understand, if you only have an ASD this is entirely straightforward, but, in David's case, there is "communication" in the lower chambers of the heart as well. I found out tonight, "communication" simply means a hole (i.e. when you open a window, there is "communication" between inside and outside). I remember the doctor saying in November that there was communication between his left atrium and right ventricle - I even remember him drawing a diagram of the 4 chambers of the heart and drawing an arrow from the left atrium to the right ventricle (but this sounds absurd to my doctor friend, so maybe I am remembering incorrectly). It may be that there is a hole between the two ventricles (lower chambers of the heart) that has not been detected. It is clear that there is more going on than just the one hole, the ASD. This is something that has been known since his initial tests in November, but which was not communicated clearly to us. My friend tonight expressed that once the ASD is closed more tests can be run, and it will be more clear where the other problem is, because the one problem will be taken care of - thus clearing the view in terms of blood flow and where the other issue might be.

Regardless of what else is going on, David does need the ASD closed. That is the next step, and as soon as the doctors have set up an appointment for that, we will go to Sacramento to have that done. It is our understanding that while he is there undergoing that procedure, testing will be going on at the same time to look for the other issue as well.

Well, there you have it - the situation as best I understand it right now.

Follow-up Call

Not long after we got home David's doctor called. The surgeon in Sacramento had finally gotten ahold of him. David WILL be having a closure procedure done by the doctor in Sacramento. His cardiologist that we saw today will be assisting (or observing). I assume this means they will do the TE on the table to check for another hole and will patch one or both at that time depending on the outcome.

This will definitely take place on a Tuesday - although what Tuesday it will be we do not know yet. We are definitely on a "need to know" basis around here! Anyway, it was a relief to get that call.

Appointment Outcome

Well, I'm not sure what to report. These appointments are very strange experiences at which things seem to happen, but when David and I leave we walk out and say, "Now what was that? Did anything happen?"

This time the doctor was very open to answering questions, but we're not entirely comfortable with the answers. We feel like we are still where we were before we went in.

The point of the appointment was to go over the recent MRI results, which we didn't really do. He pretty much gave us a recap of where we stand and reminded us that nothing can be done for David's heart until 3 or 4 months after the stroke anyway. I then jumped in and said, "At this point it has been 3 months." David asked if we should expect surgery within the next 2 months or so, and the doctor replied, "yes."

Apparently he is having a hard time getting the doctor in Sacramento to respond to him. This was the case last time we went in as well - that he had sent information and made a call but had had no response. This time, as last time, he called the Sacramento doctor while we were in the room and got his voice mail again.

So, basically we have no new information from the extensive MRI David had two weeks ago. In reading the report ourselves we saw that the MRI (3-D with dye and the works) showed no dilation of any chambers of the heart - no enlargement - yet the tests David had here: catheterization and trans-esophageal echocardiogram DID show significant enlargement. David and I brought this up and asked about it, and the doctor just brushed it aside and said that there IS absolutely enlargement. As I said in the last post, he reminded me again that I had SEEN it. He didn't seem concerned that it did not show up on the MRI.

Maybe that's a normal, typical thing, but I don't know. I didn't push the questions and dig further and ask why one test would show one thing and one another and why he was so confident there was enlargement when this extensive MRI showed none.

He repeated to us, as he has in the past, that David's case is complicated.

Every doctor I know personally (friend or relative) that I have made this statement to has said, "Well, I'm not sure what's so complicated about it. He has an ASD (hole between the atria), and that explains the stroke. This is not unusual." We did ask the doctor today why he says David's case is complicated.

Here's the deal. It has to do with oxygen saturation in the lower part of the heart and "communication" that is happening down there that shouldn't be (I don't know what that means). He had 3 cardiologists look at David's tests back in November, and one of them postulated that David may have a hole between the bottom chambers as well. This we had not been told before. Apparently that is why David had more testing (the recent MRI). Apparently the MRI was inconclusive on that. Apparently it would be bad to patch just the hole on the top if there is one top and bottom, so we need to find out if there is a hole in the bottom too. (Notice I'm using the word "apparently" a lot, because I'm making my best guess here.)

I fail to understand how the 7 or so tests he has had (trans-esophageal echocardiogram, MRI/MRA, catheterization, etc.) have not shown this if it is there. His doctor today said if he did not hear back from the doctor in Sacramento that he would just rerun the tests.

Oh goodie - those are some pretty invasive things to go through. What will rerunning them show? I suppose if they are now specifically looking for a hole in the bottom that may cause them to approach it a bit differently - I don't know.

SO, what we know is that this doctor is having no luck getting in touch with the doctor he wants David to go to in Sacramento (and has been having basically no luck with this for nearly 3 months), that the reason he keeps calling David's situation "complicated" is because of what he is seeing in terms of oxygen levels and "communication" in the lower chambers of the heart which might indicate a hole there as well, that regardless of the recent extensive test he remains certain that there is enlargement in David's heart (right side), that HE does not think that there is an additional hole in the heart but since that is a possibility we must check, and that his preference is to close the hole up top and continue to monitor David for ongoing enlargment and "communication" after his surgery and that if there remains a problem they can always "open him up" later to take care of any additional problems.

The doctor's vision for right now is to get David up to Sacramento for the closure procedure (via catheterization) and to have them do another trans-esophageal echocardiogram while he's on the table to double-check for a hole in the bottom chambers, and if there is one to take care of it at the same time - rather than running the same tests here in town again that have been done already here and continuing to try to communicate between these two doctors . . .

That's probably a jumble of information - if so, that's about how we felt upon leaving the office. I'm not sure how I feel about all that and am waiting for it to settle in. I keep hoping we're going to get somewhere when we have one of these visits, and then nothing much seems to happen at all.

I did feel better about this appointment than about our first one. Although he was clearly in a hurry again, he didn't seem defensive or evasive. I think this doctor kind of operates with an assumption that you already know what he knows, so he leaves gaps; unfortunately we don't know what questions to ask to fill in the gaps for ourselves. He seems genuinely concerned about David's case. I'm getting the impression that he is getting grief from insurance for what he is requesting for David. I'm glad we finally got the question answered about what is so "complicated" about David's case. That at least was something new we gained.

I'm still trying to process all this, so I'm going to stop there for now.

David Update

We see David's cardiologist (in town) tomorrow to get the interpretation of the test results from last week. David received the CD of the MRI and a medical report in the mail this past week, which, of course, we can't fully interpret. One thing the report said, though, is that none of the chambers of David's heart are enlarged. While that's great, if true, it contradicts the tests he had earlier. When he had his heart catheterization the doctor called me in and let me see the real-time images, and he pointed to the chambers on the right side and said, "Look, you can see how the right side is larger than the left, and that is not the way it is supposed to be, because the left side is the one that pumps blood to the whole body." The doctor was very clear on this. I looked, and, sure enough, I too could see very clearly that the right side was larger than the left.

I'm confused as to what this all means. Can the heart enlarge that much and then decrease in size again over the course of a couple of months (without the hole having been repaired?). Did one of his tests get switched with those of another patient? Are MRI's and catheterizations so different that one could show something that much different than another - one being more accurate, the other less?

I'm eager to find out what all this means tomorrow. I hope the doctor is more amenable to questions at this appointment than he has been in the past. This seems to me like a pretty big discrepancy, but, not having a medical degree, I don't know - and I don't know how much of a difference it makes. I just want to be sure they know exactly what they're dealing with before they operate so that what needs to be done is what actually is done.

I didn't post earlier about having gotten the results, because, as I said, I am not trained to read a medical report, but the words, "There is no enlargement in any chamber of the heart" seem pretty clear. I'm praying that a lot of clarity will come forth tomorrow.