Interesting Experiences

Friday I had an interesting time at therapy.  I began doing my regular workout, but since the crowd was so sparse that afternoon, Steven (one of the therapists) came over to me, asked how things were going, and suggested we try a new step.  When my toes didn't respond as he had hoped they would, he hooked me up to some electrodes and stimulated the foot at the ankle to get it to lift, and along the left side  of my leg to get the toes to splay.  Then he put the device in my pocket and handed me a button to push.  He had me walking up and down the floor pushing the button each time my left foot pushed off from the floor.  Wow!  What a difference that made.  After walking like that for about 10 minutes, he disconnected me and we found that my foot quickly went back to its old ways.  Now, though,  I have a pretty good idea of what that foot should be doing and why I am tending to turn the foot out to avoid the pain of my little toe rolling under when I walk.  One of my exercises now is to stand, practice lifting the front of my foot off the ground and splay my toes.

On Saturday I took one of my most successful runs in quite a while.  I went to the local school and ran around their grassy field again, this time completing over 3 1/2 miles in 29:30.  As I ran, I really focused on keeping my foot straight and trying to splay my toes as I pushed off with my left foot.  Whenever I realized that my mind was relaxing and my leg was getting sloppy, I would focus again on what that foot should be doing and I was actually able to run further, a little bit faster, and with less fatigue.  My 3 mile time was 25:10 which is around 8 minutes and 25 seconds.  I am so thankful for the grass to run on.

Then today, Sunday, I had the most interesting experience of all.  At 3 in the afternoon I decided to take a little nap before going out  to the park with Anthony for some Aerobie golf.  I woke up 30 minutes later and almost fell down when I stood up on that left leg of mine.  It was like I was starting the day all over again with an untrained leg after just 30 minutes of rest.  I have found that mornings are the hardest times to get around as I relearn how to focus on getting that leg working properly for the new day, but I never expected to have to start over after a 3o minute nap.  The fatigue in my muscles from Saturday's run may have had something to do with it too, but it was a very unexpected discovery.  The brain is a very interesting thing.

I discovered my bin of rice in the cupboard this afternoon and am going to try to see if I can fish out the items I have buried in there from last spring.  In the spring I could not find things with my left hand (and my eyes closed) let alone tell if my hand was staying in the bin.  I made one try before sitting down at the computer and was able to not only find something (though it took a few minutes), but also was able to guess what the object was.  I'll let you know if I have any more success.

Thanks for your interest in my story and your continued prayers.

Celebrating 1 Year!

Wow! A year ago today was the day of my stroke. It seems like a pretty appropriate time to do a little writing about how far we have come, and just to look back a little bit on the events of the past year. But, first of all, I have to say thanks for coming along with us on the journey. We have felt so loved and supported through this past year by so many special people. I can honestly say that we couldn't have done it without you. As our prayer pager buzzed this morning after breakfast, I was reminded once again of all of those prayer warriors out there lifting up both me and my family. You are such a blessing to us. Your faithfulness is a testimony to your walk with Christ. Thank you!

It's hard to know just how to "celebrate" the anniversary of a stroke, but I think we kind of got the hang of it today as we did a lot of "remembering" instead. Every once in a while the conversation turned to November 2, 2007 including Heidi's comment on her blog post comparing her experience driving behind the ambulance, to our experience driving off to church together this morning as a family. God is so good! As the boys and I were reflecting on that morning a year ago, Anthony asked, "Do you think it would have made much of a difference if I hadn't hear you and called 911?" Wow, what a question. It is incredible the way that morning played out. What if I had had my stroke an hour earlier while I was sleeping and no one found me until hours later? What if I had been driving the van full of kids to school? Instead, at around 6:15 AM, as I was reaching for my shirt, I crumpled to the ground just a few rooms away from where my boys were eating breakfast in the kitchen, close enough that when I called Anthony he was able to hear me and come to my assistance. Emergency services arrived very quickly, we made the 1/2 mile trip to the hospital emergency room, and after a number of tests, I was given the clot buster medication that seemed to be the turning point in heading me in the direction of recovery.

Yesterday I joined the kids at the field behind our local elementary school and ran 2 miles. That is still the goal I am striving the hardest toward. I want to run normally again. Heidi watched me run a bit on Saturday and said it looked "way more normal" than the last time she had seen me run. Those kinds of word of encouragement are the ones I need to hear the most, because I can hardly see the improvement over long periods of time and sometimes even wonder if I am regressing. I think I am starting to figure it out though. I feel extreme fatigue in my leg after running or exercising, or even a day of teaching and being on my feet all day. They have told me at therapy that only about half of the muscles in my leg are doing all of the work, so of course I would feel extreme fatigue for a day or 2 afterward. Heidi reminds me of this when I have another one of those day of having to think so hard about each step as we walk around the block. Then I am reminded that I am not regressing, but am tired from my previous day's exercise.

I have come to realize that running the California International Marathon is NOT going to happen this December (that was the goal I set for myself), but I will make it my goal for next year. My foot continues to thump the ground pretty loudly when I run on pavement and I'm a bit wobbly, but when I run on grass it feels much more comfortable, and puts much less strain on my knee. I have also found that if I keep up with some running every few days, I experience less fatigue than when I make it a once-a-week activity.

Sleeping is another issue. My left side is still quite hypersensitive, so it is not an option to sleep on that side. Also, I used to turn over in my sleep without even thinking about it. That is not a natural thing anymore and takes some work. Especially when there are covers on top of me to get tangled in. Then there is the job of finding another comfortable position for this crazy body of mine so that I can drift back to sleep again. This was something I never would have imagined would be a problem after a stroke.

Then there is my arm and hand. It is interesting having an injury that shows no scars on the outside. My body looks completely normal (as normal as possible for me) from the outside, but every once in a while my arm surprises me. I find it somewhere, in a position where I don't expect it to be and think, "Is that my arm?" It is a really weird sensation, and is becoming less frequent than it used to be. The thing that doesn't seem to be improving is the lack of feeling in my left hand. To do things with my left hand like play the piano, keyboarding, playing video games, tying my shoes, buttoning a shirt, turning a doorknob, etc. I have to look at my left hand because I cannot "sense" what it is doing. I can feel some things with it (hot, cold, and sharp pokes), but the fine sensations are all missing, and so I need my vision to help my fingers know hat they are doing. One thing I have made improvement on is working the turn signal as I drive. That was such a natural thing for me before my stroke and became such a difficult thing after my stroke. I fumbled with that thing so much for such a long time (especially when driving in the dark), and now it has become pretty natural again. That gives me hope that there is still more improvement to come. When I can tap my left foot to the beat of a song again, I will have made another milestone.

Well, these are little things that still bother me, and I just tell people that I am greedy, "I want it all". And as long as they continue to give me hope at therapy, I will continue to work on these things and hope for improvement.

I have to admit that there are many times now that I don't even notice my shortcomings for extended periods of time.  I can get lost in my work, or a game, or reading a book and completely forget that anything is lacking.  But then I get up out of my chair and put weight on that left side and am reminded that I have quite a way to go yet.  In fact, that is how I begin every day.  The alarm wakes me from my sleep, I scramble out of bed to turn it off, and the first sensation I have is stumbling across the room on a leg that is not yet warmed up for a new day.  Just a little daily reminder of the good work that God continues to do in my life.

One last item to share on this day gives a little more perspective on how far I have come over the past year. As church came to a close this morning and one of the last songs was announced, there was that awkward feeling when everybody knows that it is a time to stand up, but no one is sure if anybody else is really going to get up. So, I stood up and everybody else got up. That' s not such a big deal unless you realize that one year ago today, I couldn't figure out how to get my brain to move my fingers and toes at all, let alone lift my whole body (and a whole church) to a standing position. God is so good!

Thank you again for your many word of encouragement and your faithful prayers on behalf of me and my family. You are such a blessing to me (us).

Here we go on year number 2! Does anyone want to join me in that marathon?

Fall 2008

Well, we're closing in on the one-year mark since David's stroke.

It's hard to know what to report. Life is very different for us all, especially for David, than it was one year ago. It's hard to tell what percentage of that is due to his stroke and ongoing symptoms and therapy work - and what percentage is that there have been other changes in all our lives.

ANTHONY is a junior in high school, the year they keep telling him is the hardest and busiest, which he is finding to be true. He's got multiple AP and pre-AP classes as well as his normal fall season activities.

JACOB is a freshman in high school, which is a big step up. He moved from a middle school of about 180 out in the country to a high school in town with 2600 students.

CALEB is in his first year of middle school. He is experiencing moving from teacher to teacher for the first time - taking algebra and all those more demanding junior high classes.

HEIDI is finishing a Master's Thesis and carrying out her research this semester - the culmination of 3 years of work.

Fall is busy anyway with cross country and soccer, so all of us have the usual busyness, but all of us also have additional adjustments and responsibilities.

Looking back over that list, I realize the fact that all that is even possible for us - given the reason for this blog - is a miracle!

BACK TO DAVID: In my last post - which was a while back now - I said I was going to give another update soon. I have found that hard to do. Things seem to shift a lot for David both physically and emotionally. I have some guesses as to why but am not entirely sure. Sometimes he feels that he is regressing physically. Sometimes he feels he is remaining in the same spot. Sometimes he feels he is making progress.

Let's see, I had put some reminders to myself in the last post. At that time we had just gone to back-to-school night at the boys' high school. There are large stairwells, and, although David can go up and down stairs quite well he found it very disconcerting to do so with lots of people around. His perception is off to where it makes it impossible for him to go up or down stairs while other people are on them - unless he is right on the side holding a railing. The other reminders all had to do with sleep, which I'll address a bit further down.

It is amazing how his spirits lift when the therapists are able to notice and point out even a little bit of progress - for instance that his foot is able to turn in half an inch further than before. Some days he will notice something he had not noticed before. Yesterday after I washed my hair he touched it with his left hand and said, "I can feel that your hair is wet. Actually, I think it's that I can feel the coolness of it rather than the wetness."

His sides remain so different in sensation that it is hard for him to sleep. He can't roll over easily. He cannot sleep on his left side because it hurts. It also just feels strange to be in bed as his left arm just feels like a wadded up towel next to him. It's also hard for him to sleep on his back because his sleep apnea is worse now that he cannot do the intense aerobic exercise he used to do. There are lots of little/not-so-little things like that. Those things are certainly relatively small when compared with where we would be had he not regained his ability to walk, but it does leave him always sleep deprived.

He is overly tired all the time, and it's hard to tell if that is due to his sleep deprivation, the busyness of our family right now, or due to the fact that he has to yet think about every step he takes. It's hard to sort it all out. But the constant tiredness makes it hard for him to feel joyful and to feel he is "living" rather than "getting by." It also makes his work hard for him, which had never been the case before either - at least not in the same way.

In all the time I've known him, I've known David to be always totally even keel on the upbeat side of things - definitely a "glass-is-half-FULL kind of guy" - no matter what is going on good or bad - even in the first few months after his stroke. One of the first things he said in ER once we realized what was going on and his left side was paralyzed is, "Well, I can talk, and I can use my right side. I have everything I need."

That comment was classic David.

His emotions had never fluctuated a whole lot in the past. Now I find them to fluctuate quite a bit. I had never really seen him "down" before - not even while hospitalized after his stroke or in the first few months of recovery.

I continue to feel we are at a strange spot - a transition spot. We have no way of knowing if there will be more progress or not. I think there is probably a struggle going on within David between acceptance and continuing to work hard to move forward (even though he doesn't see much if any progress) - and trying to make these choices in the midst of so much family busyness, which doesn't leave a lot of time for reflection. In time I think this will settle in to a more comfortable spot one way or the other, but it remains an "awkward phase" right now (for lack of a better term).

I've been told that it is often the case after a major illness (or accident) that a person goes through a time of depression. Maybe David is being impacted by a form of depression. It's just very hard to tell cause and effect right now, so we just keep putting one foot in front of the other and wait to see what the future holds.

All of what I've written above is just an overview of where we are right now - good and bad - big scale and small scale - daily life. Either David or I will probably update this on the anniversary of his stroke. (Nov. 2 - a date we'll always remember!)

Needing to Post

I need to get a new post up here. Things do continue to change with David, and I find he is commenting more about what is going on with him (inside him) than he ever had before, so I'm learning a lot that I can pass on to those of you who are still checking in and praying for him/us.

I've said this before, I believe, but it is more and more true all the time. We are in a very strange spot. There is no way to know if he will continue to see improvement, but he has to keep working hard at therapy just in case, because if he does not then he certainly won't improve. But there is something about that that makes is hard to move on with life.

I can't quite put this well.

He and I have both commented recently in ways that touch on this. In some sense (although not in all senses) we would be at a better spot if he knew this was as far as he was going to get. That would be sad, but at least if that were the case, he would KNOW where he stood, could move to the acceptance phase and re-vision his life (and also save a lot of time not going to therapy!). As it is he continues spending a lot of time and money in therapy - not knowing if it will make a difference, but not daring to stop and lose out on that chance - and because of this unknown, he also cannot quite settle into a place of full acceptance, because he is continuing to strive for something more. I'm afraid I'm not putting this well at all.

There must be a way to accept where one is at while yet striving to improve one's conditions, but we have not found that balance yet.

What follows are reminders to myself of what to comment about in the near future: sleep, stairs (at Enochs), sensation (wad), exercise/apnea.

No Plateau in Sight

This is hard. We do need a lot of wisdom to figure out how to make this work. It is a steep learning curve.

Steep Learning Curve Ahead

How blessed we are to have summer open - and especially with the timing of things this year.

Towards the end of the last school year, David was doing less physical therapy than he is this summer. Things have shifted a great deal, particularly after our visit to the stroke specialist at UCSF. At her advice he has taken on a different type of therapy and is finding it very effective.

Currently David is doing 10 hours per week of physical therapy, and he has the time to devote to that now. As I said, we are blessed to have summer open.

David begins teaching on August 11, so he will need to figure out how to balance full time work with 10 hours of therapy. That's going to be challenging enough, but it's not just his personal schedule that is becoming busier. With the start of the new school year everything gets busier for all of us. Sports and piano lessons and youth group and all their other activities begin again for the boys - which means a lot of chauffering on the part of their parents! I also am going back to work and am finishing my thesis this semester, so it will be a busier one than usual for me, which means I can't take as much pressure off of David as I would like to in order to open up time for him to keep at the therapy (and given what my study is, it is not something that can be shifted to another semester or I would do so).

Things are going well. Life is headed in a good direction. We are busy, but the things we are busy with are good things. We just need wisdom at this point in terms of finding the balance that is going to allow David to continue to progress. David is making progress, but it has slowed to a snail's pace, and if he lets up on his therapy, his progress is going to halt or regress, especially since he spends a lot of time sitting at a desk during his work day. It is important that a way is made for him to keep it up the PT.

I think the next few weeks are going to be a steep learning curve for our whole family as we all try to make the balance work. If you are praying for us, that is our request right now - that God will guide us as we move into a very different and much busier routine - and also that we will all have patience with each other as we figure this out together! Thank you!!

Update From My Perspective (David, that is)

Thanks again to my wonderful wife for doing such a great job of using her blog to get the information out to everyone about my progress since my November 2nd stroke. If you haven't read her latest update in this section posted yesterday, make sure that you do that before you read these additional comments of mine.

I have begun meeting 2 times a week with a physical therapist who specializes in athletic rehabilitation. This was suggested by my very capable therapists at English Oaks when they felt that they had reached the extent of their expertice in my case. I specifically want to get my stride back for running, so this seems to be the next step in my recovery. I was very impressed with my initial evaluation and session. We are going to start with some intense work on balance and work on building up some specific muscles that are not yet doing their part. One of the main muscles that seems to be lacking is the hip flexor (I think that's what he called it). This seems to be causing my left foot to turn out when I walk and causes the muscles on the inside of my leg to do most of the work rather than sharing equally with the muscles on the outside of my leg. MY familly is seeing me standing on one foot at a time these days quite a bit, trying to retrain my brain to learn to better balance my body, and getting the receptors in my feet to better talk with my brain to know how to do that. This is combined with some exercises that specifically work those muscles that I need to use at the same time if I am truly going to have my balance back again. I've been told that we will not begin working on improving the stride until I improve in both of these areas.

I had a major success today in that I completed my first 3 mile run on pavement since my stroke. Once I got used to the slap of my left foot on the ground as I ran, I was able to get into a pretty good rythm and completed the 3 miles in just under 24 minutes. Being able to get in good aerobic exercise like that is really what I am after. To my surprise, it didn't hurt and doesn't hurt now (2 hours afterward). I had been doing my limited runnung on grass figuring it would put less stress on my knee, ankle and foot, but my new PT highly recommends that I NOT run on grass because it provides such an uneven surface and he fears that that in itself may lead to injury. So, I am pleased with today's accomplishment.

I continue to look forward to a day when I no longer have to think about every step I take as I run or walk and it just becomes a natural occurance once again. In the meantime, I just praise God for the wonderful work he continues to do in me and pray that progress will continue. Know that I am working hard at my therapy daily and am full of hope from my recent evaluation and training. God continues to teach me patience.

8 Months Later

Well, it's a bit more than 8 months later - and it's David's birthday today - his first since his stroke.  What a great day to celebrate!!!

I sometimes wonder if there are people other than friends and family reading this - perhaps others who have been impacted by stroke and are looking for what to expect or what to compare to - so, I'd like to post detailed specifics of what's up at this point.

There is a bit of new news to report, but for a while now we've been at a place where the daily leaps and bounds of progress is no longer happening.  When we try to envision exactly where we are we find it a strange task as we balance between hopes of what might yet will be regained and thankfulness at how much has already been regained.  We don't seem to really be able to settle into "normal" yet, because David is at a place where progress is still possible and where he is spending a lot of time working hard for it, so this yet remains quite in the forefront of our lives rather than receding into the background - even though he has come so far and can do so much and to anyone looking at him seems fine.

Some good news is that some of the fine motor skills that had not been in place are returning.  He told me the other day he was able to clip his fingernails in one minute rather than the five minutes it had been taking.  (That might sound mundane, but to us it is really exciting and evidence that measurable progress continues to happen!)  Some more good news is that David has gotten in to see a sports therapist, and it has been such a good experience.  He went for his second time this morning.  He feels good about the thorough evaluation and the direction this therapist wants to take.  

David's goal is to be able to run distance again and to be able to work towards that without orthopedic injury.  (Earlier in the year he was injuring his knee by the attempts at running he was making - to the point where knee surgery was being considered - we really want to avoid that!)  The goal is to work on correcting his stride, so that he will not injure himself.  He was told he has 80% muscle strength (mass? - not sure) on his left side and that his balance is still not where it should be, so the therapist is working with him on balance and strengthening.  Once those are at a better spot, work on stride will begin.  David is very excited and feels he is in good hands.

Insurance is not going to cover the therapy this time, but it is amazingly less expensive than we could have imagined, and it is going to be very doable financially - and very much worth it!!

We recently returned from a trip to MI.  This was the first major traveling David had done since his stroke, and it made clear to him some things that are not working that he had not realized are not working.  For instance, getting luggage off an airport carousel was very difficult and pointed out how much his balance is still lacking.  It was also difficult to haul luggage up and down stairs (they actually have stairs in Michigan!).  

He noticed some things too when joining in athletic activities with extended family - particularly dodgeball (which is played out there in a totally different fashion than how I learned it in California!).  When he tried to throw hard to get someone out it really hurt his knee very badly.  I guess he hadn't tried to "torque" like that since his stroke.  It was probably a combination of balance issues and his right side being disproportionately stronger than his left.  I don't think anyone else noticed.  He just stayed out there and started shooting baskets instead to try to free his teammates rather than trying to get people out.

The balance thing was also noticeable a few days ago when he had a minor mishap with his bike.  He's had a very swollen ankle ever since that's not improving as fast as I would think it should - or would like it to.  I think perhaps the circulation isn't as good on that side or something.  It may be that healing takes long on that side now.

He still lacks feeling on his left side.  At one point during our vacation he put his left arm around my waist and looked at me with a smile on his face and said, "Well, I can't feel ya, but I KNOW I've got ya!"  :-)

So that's where things are right now.  David is feeling very positive - recognizes some limitations that he hadn't noticed before but also recognizes the progress he's made.  He's extremely positive and excited about this new direction in physical therapy and is pleased with his therapist.

I'm just so happy that it's summer and he has lots of time to work at all this.  Hopefully he will be able to establish a good sustainable pattern before going back to teaching in August.

We are truly celebrating David's life on this very special day!!

Currently

David had his last physical therapy appointment this morning (has been down to once a month for a while). He had a good session and also brain-stormed with his therapist about continuing therapy (as suggested by Dr. Ko and mentioned in the previous post). There is a place in town that would be appropriate for David's needs at this point, but they don't take HMO insurance (which is what we have), SO we're back to "fighting" (or trying to figure out how to fight) to get David in where he needs to be.

Yesterday David had a routine echocardiogram yesterday - done to check if his heart device is still properly in place. It is.

We continue moving ahead.

UCSF Stroke Center Visit Results

I think I'd better break this up into about 4 parts as this is going to get VERY lengthy. That way you can more easily pick and choose what you want to read!

OVERVIEW

Our visit to the neurovascular specialist at UCSF Stroke Center today was better than we could have imagined! The doctor was clear and informative and patient. She addressed all of our questions and clarified for us some things that had confused us since all of this began. She also clarified for us the different ranges of windows for recovery we'd heard. She let us know that she has seen patients continue to improve beyond a year. That was really a joy for us to hear, as we had heard windows as small as 3 months or 6 months, and since David has plateaued he'd been concerned he would be able to progress no further - so that was probably the most wonderful thing we heard while there. She recommended further tests for him and further therapy, all of which sound very hopeful and helpful. We learned a lot of the specifics of what has happened to David, why he is experiencing now what he is experiencing now, what he should do now and in the future, and what he can expect in the future. A doctor friend of mine warned me a week ago that we probably wouldn't get much out of this appointment and said he hoped we'd have a nice dinner in San Francisco, but we learned SO MUCH. Dr. Ko was GREAT! We had a one-hour appointment, and she talked with us for an hour and 20 minutes with complete patience and calmness for all we needed. She addressed confusions of the past, realities of the present and direction for the future! We sure can't ask for more than that!!

DETAILS

There are so many details - all of which are important to us, of course, and to anyone who may be reading this and is going through something similar. It's hard to know which to include. I just scrolled down my blog a bit so that I could see what I'd already written, not wanting to be repetitive, and I see where I said that David kept getting the generic answer when asking his therapists and doctors what he could yet expect to get back: "You've had a major stroke; you may get it back, you may not." That was not the case with Dr. Ko. She detailed for us the systems that have been impacted and how they usually come back and in what order. She was very pleased and surprised to see how much strength he had regained on his left side in 7 months. 

She is also pleased that he has so much sensory perception on his left side. It is this, though, that is what caused David to think he was regressing a while back. (Those in the medical field reading this will probably find all sorts of errors as I try to write out what I heard, but I'll do my best.) While it is really good that he has sensation, some of it is leading him astray; it is also the case that his wiring is yet quite crossed. From what I understand the brain is interpreting signals as pain, say, from nerves that are sending messages about something else. She told him that some of the pain issues might be permanent - one example being that it is painful to him to have any covers - even just a sheet - over his left foot. Other sensory issues have to do with being able to use his left side without looking at it (can't use turn signals in the car without looking at what his hand is doing - certainly can't button anything without looking, and it is hard even then!). She was very encouraging about this aspect of the sensory issues (sensory ataxia)  and said he would probably, with a lot of work, be able to get his brain to rewire in this regard. She encouraged him to do as much as he could with his left hand and to watch what it was doing and really focus.

David is very disciplined and motivated, a hard worker. He can and will do this. What was so important to us today was to find out there was yet strong possibility of this coming back. He had been beginning to feel that all this work was a waste of time at this point and that he was as far as he was going to get, so the hopefulness and information we got today is spurring him on to continue working and to work harder! He now knows it can pay off. In terms of other issues relating to sensation, it is too early to tell if he is in transition, and it is on it's way back to a more normal state or if it is at the place where it is going to stay. For instance, David expresses what he senses as his left side being turned inside out, that he feels inside his body what his skin used to feel on the outside and that the outside doesn't sense what it used to. He is both overly and underly sensitive.

She was very attentive to his desire to run long distance again and gave very good advice about that. She would like to see him have more therapy. We are over what insurance will cover in terms of stroke, but she suggested we approach it as a sports-therapy issue. He needs a therapist to work with him specifically on his stride while walking and running. If this does not take place, and if he tries to train to run, he will have orthopedic injuries. She explained in detail how he can tell when he has overdone it with exercise. Regardless of whether or not he runs races again, she let him know that he must exercise every day or he will lose what he has gained.

She also talked about causes of stroke and reminded us that although the PFO (hole in heart) is likely the cause, that is not certain. She recommends he have a blood test for hypercoagulation and that he wear a heart (event) monitor for 30 days. Her statement was that she'd be more comfortable with more testing. She'd like to see this done regardless of whether he goes back to running (in which case he should definitely have it to be cleared to exercise that vigorously). If nothing shows up in these tests, we can be even more sure it was the PFO (although we can never be 100% sure that that was the cause), and if something does show up - arrythmia or hypercoagulation, then we can do something about that and further lower his risk of future stroke.

David mentioned some of his emotional "down feeling" lately, and she said that this was the time most stroke patients are prone to depression (and when many give up and therefore make no more progress). This is because there is a steep recovery rate at first but that then a plateau is reached and the improvement is so subtle that the patient, who is living with this day to day and minute to minute, can't see that there is any improvement at all. David needs those around him, doctors, physical therapists, and family, to let him know when they see any progress as a reassurance to him that he is making progress.

ON BEING DAVID RIGHT NOW

In the post after the return from Washington DC I included a 6 month retrospective I included a lot about of what David feels like right now. I've also included some of it above - such as the foot pain and the "inside-out" feeling. Before I add to that, I want to state that there are a lot of things I did not know about what David is feeling until today. He is not a complainer and often doesn't even just mention things that he's struggling with. Both of us certainly know that there are people struggling with things far more difficult than our situation and that David's situation too could be a lot worse - he could have died - he could be permanently paralyzed - so we are tremendously thankful daily for what we have, which is a LOT. I know too from personal experience with a 4-year-long bout of severe depression, which I feared to make public at the time, that there are people suffering from health struggles that they dare not share and thus can't publish like we are doing here.  Often when I write I say a prayer for people who are out there suffering silently and not in a position to experience the support that we have in this situation. So, we are thankful both for David's progress and for the ability to share this with others and to feel so supported. We certainly do not share this as complaint but rather as a record of David's/our experiences for our loved ones to read, and we hope it might also be of encouragement to others who might be experiencing something similar - letting them know they are not alone.

Along with what is in a former post and things mentioned earlier here, David also:

- cannot get things out of his pocket with his left hand
- cannot easily lock the doors at night (hard to turn the lock)
- finds himself crossing his arms a lot b/c he wants to hold his left arm with his right
- stubs toes on his left foot when walking barefoot on carpet (and trips at times)
- feels like his left shoe is an "unleveled wooden shoe"
- experiences pain when walking barefoot on textured surfaces
- has a hard time balancing, and his left arm swings out of sync with his right
- feels skin sliding over his muscles when resting his left arm on the table
- often needs to first do with his right hand what he wants to do with his left so he can copy it

This Sunday he sang in front of church for the first time (at First Ripon CRC), and he found out that when he is nervous his left leg shakes uncontrollably. I may have shared these next things already, but he sort of starts over again every morning - staggers as he walks until he's been doing it for a while - and when he sneezes his left leg goes out of control (which is especially a bummer for him, because he has allergies, so he sneezes frequently!). Today as he was driving home from UCSF, he told me it hurt to put his left hand on the steering wheel and that in setting it there he could feel all the wrinkles in the skin of his hand and fingers.

FURTHER COMMENTS FROM HEIDI

What keeps coming to mind is how happy and thrilled I am about this appointment! It was so encouraging to both of us - especially so to David. It was also just very interesting. One of the most interesting things I saw as she was testing him is when she had him put both arms straight out in front of him, palms up and then close his eyes. As soon as he closed his eyes his left arm began raising up, and his left hand began turning inward, but his right arm and hand stayed right where they had been. He continues to not have perception of where his left arm and leg are situated, which is why he needs to look at everything he's doing with that left side. It was very interesting to watch and seemed kind of like magic - levitation or something.

We're not all that old (I don't think :-), but as we have journeyed through life we have experienced some significant health issues and seen friends and family members do so as well. I am so aware all the time now of the intricate system the human body is, and how if one tiny thing goes wrong so much can be altered so significantly. Even driving back and forth to San Francisco today in the midst of all that traffic, I was so aware that one little mistake by one driver could alter or end many other lives. Every breath we take, every moment we live, every thing that we can do - seeing, hearing, tying our shoes, buttoning our shirts, speaking, having sensation, lacking chronic pain, walking, knowing where our arm is when we close our eyes, being able to snuggle up under the covers without it causing pain - every seemingly miniscule thing is a gift every moment and is something that can be lost at any time. We should not take anything for granted, and all of us - even in the midst of injury and illness - have so much to be thankful for - so much more than we do know or can know!

I think I'll take some time tomorrow to go out in the back yard and enjoy my vision by looking at the green leaves and grass and at the blue of the sky - and enjoy my ability to breathe freely in the fresh air - and enjoy my ability to feel, and to do so without pain, by running my toes through the grass.  Maybe I can get my hubby to join me so as to enjoy the ability to hear and to talk and to think and therefore to converse and to enjoy the fact that we still have each other!

Upcoming Appointment

On Thursday, June 5, David and I will be heading to the Stroke Center at UCSF to talk with a neurovascular specialist. It is a 60 minute appointment, and we are not sure exactly what to expect. What we hope is that we will get information about what is yet possible in terms of David's recovery - hoping to hear further improvement is possible. We'd also like to make sure David hasn't missed out on anything he should have been doing (or perhaps can yet do) to maximize his recovery.

We know that people are different in how their bodies respond to health situations and that in medicine not much is absolutely definite, but we do keep hoping that what David was told initially may prove to be true - that he can recover 98% to 99% of his full function. Most of what is yet missing (or problematic) is not visible to others, but he feels and experiences the continuing impact daily in many non-visible ways.

One thing that has been confusing to us throughout this process is the varying "windows" David has been given as to when his chances for continued improvement end; they have varied from as little as 3 months to as much as 2 years (with others - very few - telling us there is a chance he can continue to improve indefinitely). Perhaps it is best not to be given a definitive window, and maybe there is no such thing, but that too is one of the questions we are going to ask. I imagine if there are answers to be had, this is where we will be able to get them, so we are very excited about the week.

On the Lighter Side

In recent months, nearly every time David sees someone for the first time in a while that person says, "David, you look SO GOOD!"

I'm beginning to get concerned that people are hitting on my husband!!!

He's MINE, I tell you HE'S MINE!!

Return from DC & 6 month reflection

David and Jacob arrived home at about 2am Sunday from the 8th grade trip to Washington DC. We are so pleased David was able to do this, that he is recovered enough from his stroke to take it on and that his heart repair was done early enough this spring that he was recovered from that as well - that timing having been so up in the air for so long.

I still wondered if he could really do this; afterall, he is sometimes exhausted after walking only one mile at home, because whenever he walks he needs to be very focused on making his left leg do the right thing. He did mention that being at Arlington National Cemetery was a particularly hard day with all the hills - uphill: not so bad - downhill: quite a problem.

The trip is really designed to have quite a gruelling pace, so I'm both very surprised and very grateful he did as well as he did. He came home with a very bad cold, and I think that's a result of him getting pretty run down, but it was definitely worth it to be able to realize this goal and to be able to have that special bonding time with Jacob - and also for himself personally to accomplish what he had signed on for at the beginning of the semester before all of the rest came about - a good feeling!

I'd like to add just further information about what life is like for David right now, six months after his stroke.

Things have very much plateaued for him. He remains mostly upbeat, as is his nature, but there are frustrating days when it sinks in that this may get no better. For the most part people can't tell there's anything wrong by looking at him - unless they watch him walk a reasonable distance; then there is a noticeable limp, and it is obvious that his arms aren't in sync with each other as he walks.

What people aren't able to see is that he is still missing almost all feeling on the left side of his body and that he relies quite a bit on looking at his arm or leg to get it to do the right thing. He also mentioned after returning from the field trip that it is particularly difficult to have people walking near him on his left side because he feels as if he is going to bump into them or step on their feet because that side just seems rather out of control. After coming home on Sunday he tried to do a couple of small repairs around the house, one of which required him to use a pliers to try to pry something open, and he just can't hold onto things with that left hand - kept dropping it. He also trimmed his fingernails that day - no problem doing his left hand with his right, but doing his right hand was another story. He almost gave in and had me do it, but after much perserverance he was able to do it on his own. It took quite a bit of time, though. I watched for a while but had to walk away because it was painful to watch!

Also, last year he had mentioned to both our neighbors that he was willing that summer to work with them on repairing the fences between our homes, which are more than 25 years old and basically patched up and being propped up in place right now. That sort of work had always been tremendously delightful to him. He's roofed our house on his own and in the past had always eager to be doing any kind of physical work outside. I'd always had a hard time keeping him out of trees with a chainsaw! I can't remember the number of trees he's taken out of our backyard - at least 4 or 5. I was getting to the point where I felt I'd have to tie myself to the remaining trees to protect them! His physical limitations have taken away his desire to engage in this kind of activity. In regard to the fences he has said more than once since his stroke that he wishes the neighbors had taken him up on his offer last summer as he just can't imagine being able physically to do that now - nor having the emotional drive to do that now either.

Yesterday was a down day for him, but I think it is in large part because he moved right back into work after such a taxing week and is feeling quite sick - perhaps also because he has so recently taken on things he had not tried since having his stroke and is finding they don't come about as he'd like them to. He even wondered out loud at dinner last night if he would ever have the spark inside him to be as creative and energetic as is characteristic of the faculty he works with, a spark which he always had before. Right now he feels he is just getting through the day rather than working with the enthusiasm he is used to, and that doesn't feel good to him. His place of work is filled with very vibrant people, and he wants to be a full participant in that vibrancy.

He has said though too that he thinks the reason he has been so tired since going back full time is that he'd been out or only partially in for so long that jumping back into the swing of things when everyone else was already in the middle of it may be what is making it so tiring. Being full time is quite different from being part time. I'm eager for him to have a break during summer and then to be able to begin again in the fall with a new school year, beginning again when everyone else does, being able to begin from the ground up. I'm quite sure his spark will come back! He's still David - still the man of positive spirits and strong work ethic; it's just that everything is a bit more daunting or draining yet at this point.

When he asks his therapists if he will get something back (physically) he keeps getting the generic answer: "David, you know you've had a major stroke. You may get it back; you may not." As you can imagine, that's not a terribly satisfying answer. David's appointment at the UCSF Stroke Center will be June 5. We are both hoping at that time that the specialists there will be able to give him a more specific answer, but we are also aware that maybe a more specific answer doesn't exist. Maybe it does just come down to waiting. This past Friday was the 6 month point. We've been given all kinds of windows for when he will get back all that he is going to get back, and those statements to us have varied from 3 months to 2 years. We are sure hoping it's the 2-year window that's right!

He'd initially been told he could expect to regain 98% to 99% of his function and that he probably wouldn't even be aware of the 1% or 2% that was missing. Well, he's not yet anywhere near that point, but we sure hope that's still a possibility.

All that being said, the good news is he was able to take a trip across country and keep up with and chaperone a group of junior highers on quite a demanding field trip. That's quite a milestone and quite an accomplishment I think! (Shoot! I might be even more tired if I'd been the one who'd gone, and I haven't had a stroke! It makes me tired just thinking about it!) I know there were many people praying for him as he took this on. Thank you!

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.)