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.
Sunday, March 9, 2008
Friday, March 7, 2008
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.)
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.)
Thursday, February 28, 2008
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)
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)
Wednesday, February 27, 2008
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?
I'll keep you informed.
It just keeps getting more interesting, doesn't it?
Tuesday, February 26, 2008
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!
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!
Thursday, February 21, 2008
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.
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.
Sunday, February 17, 2008
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.
Thursday, February 14, 2008
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!
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!
Sunday, February 10, 2008
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.
Saturday, February 9, 2008
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.
Friday, February 8, 2008
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.
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.
Monday, February 4, 2008
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.)
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.)
Thursday, January 31, 2008
Tidbits
There are lots of "little" things going on - ups and downs - if interested, read on.
David's initial permission to go back to English Oaks had not included occupational therapy. He was able to get that added on (although not as many visits as we had hoped), so today he had physical therapy at English Oaks and an hour of re-assessment by an occupational therapist. During the assessment it was found that he has lost ground - particularly in the area of strength - since having left English Oaks, but there was a manipulative activity she had him do that he was able to do a minute faster than he had done when she last evaluated him at English Oaks. So, he has both lost and gained.
His physical therapist was concerned enough about his knee pain to have him call his primary care doctor, and David was able to get in and get it x-rayed TODAY. We hope to hear early next week what is going on with his knee.
David found out that there is a free community stroke recovery program at the local YMCA, so he's going to check that out. It sounds like they work out together in the pool, lead by a PT, and it also sounds like it would make for good networking for David - giving him opportunity to share with and learn from other stroke survivors.
David's initial permission to go back to English Oaks had not included occupational therapy. He was able to get that added on (although not as many visits as we had hoped), so today he had physical therapy at English Oaks and an hour of re-assessment by an occupational therapist. During the assessment it was found that he has lost ground - particularly in the area of strength - since having left English Oaks, but there was a manipulative activity she had him do that he was able to do a minute faster than he had done when she last evaluated him at English Oaks. So, he has both lost and gained.
His physical therapist was concerned enough about his knee pain to have him call his primary care doctor, and David was able to get in and get it x-rayed TODAY. We hope to hear early next week what is going on with his knee.
David found out that there is a free community stroke recovery program at the local YMCA, so he's going to check that out. It sounds like they work out together in the pool, lead by a PT, and it also sounds like it would make for good networking for David - giving him opportunity to share with and learn from other stroke survivors.
Tuesday, January 29, 2008
My Understanding
Upon reflection on the appointment yesterday and talking with a friend of mine who is a doctor, let me try again to express my understanding of David's situation - which seems to me to be at least a bit clearer tonight.
There is no question that David has an ASD (atrial septal defect), a hole between his atria (the two upper chambers of the heart). This is something that has been there undetected all his life, but it finally got to a point that the right side of his heart became enlarged as a result, which caused blood to flow in the wrong direction, which allowed a clot that otherwise would have been filtered out by his lungs to travel to his brain, thus causing a stroke. There is no question that this hole must be closed. From what I understand, if you only have an ASD this is entirely straightforward, but, in David's case, there is "communication" in the lower chambers of the heart as well. I found out tonight, "communication" simply means a hole (i.e. when you open a window, there is "communication" between inside and outside). I remember the doctor saying in November that there was communication between his left atrium and right ventricle - I even remember him drawing a diagram of the 4 chambers of the heart and drawing an arrow from the left atrium to the right ventricle (but this sounds absurd to my doctor friend, so maybe I am remembering incorrectly). It may be that there is a hole between the two ventricles (lower chambers of the heart) that has not been detected. It is clear that there is more going on than just the one hole, the ASD. This is something that has been known since his initial tests in November, but which was not communicated clearly to us. My friend tonight expressed that once the ASD is closed more tests can be run, and it will be more clear where the other problem is, because the one problem will be taken care of - thus clearing the view in terms of blood flow and where the other issue might be.
Regardless of what else is going on, David does need the ASD closed. That is the next step, and as soon as the doctors have set up an appointment for that, we will go to Sacramento to have that done. It is our understanding that while he is there undergoing that procedure, testing will be going on at the same time to look for the other issue as well.
Well, there you have it - the situation as best I understand it right now.
There is no question that David has an ASD (atrial septal defect), a hole between his atria (the two upper chambers of the heart). This is something that has been there undetected all his life, but it finally got to a point that the right side of his heart became enlarged as a result, which caused blood to flow in the wrong direction, which allowed a clot that otherwise would have been filtered out by his lungs to travel to his brain, thus causing a stroke. There is no question that this hole must be closed. From what I understand, if you only have an ASD this is entirely straightforward, but, in David's case, there is "communication" in the lower chambers of the heart as well. I found out tonight, "communication" simply means a hole (i.e. when you open a window, there is "communication" between inside and outside). I remember the doctor saying in November that there was communication between his left atrium and right ventricle - I even remember him drawing a diagram of the 4 chambers of the heart and drawing an arrow from the left atrium to the right ventricle (but this sounds absurd to my doctor friend, so maybe I am remembering incorrectly). It may be that there is a hole between the two ventricles (lower chambers of the heart) that has not been detected. It is clear that there is more going on than just the one hole, the ASD. This is something that has been known since his initial tests in November, but which was not communicated clearly to us. My friend tonight expressed that once the ASD is closed more tests can be run, and it will be more clear where the other problem is, because the one problem will be taken care of - thus clearing the view in terms of blood flow and where the other issue might be.
Regardless of what else is going on, David does need the ASD closed. That is the next step, and as soon as the doctors have set up an appointment for that, we will go to Sacramento to have that done. It is our understanding that while he is there undergoing that procedure, testing will be going on at the same time to look for the other issue as well.
Well, there you have it - the situation as best I understand it right now.
Monday, January 28, 2008
Follow-up Call
Not long after we got home David's doctor called. The surgeon in Sacramento had finally gotten ahold of him. David WILL be having a closure procedure done by the doctor in Sacramento. His cardiologist that we saw today will be assisting (or observing). I assume this means they will do the TE on the table to check for another hole and will patch one or both at that time depending on the outcome.
This will definitely take place on a Tuesday - although what Tuesday it will be we do not know yet. We are definitely on a "need to know" basis around here! Anyway, it was a relief to get that call.
This will definitely take place on a Tuesday - although what Tuesday it will be we do not know yet. We are definitely on a "need to know" basis around here! Anyway, it was a relief to get that call.
Appointment Outcome
Well, I'm not sure what to report. These appointments are very strange experiences at which things seem to happen, but when David and I leave we walk out and say, "Now what was that? Did anything happen?"
This time the doctor was very open to answering questions, but we're not entirely comfortable with the answers. We feel like we are still where we were before we went in.
The point of the appointment was to go over the recent MRI results, which we didn't really do. He pretty much gave us a recap of where we stand and reminded us that nothing can be done for David's heart until 3 or 4 months after the stroke anyway. I then jumped in and said, "At this point it has been 3 months." David asked if we should expect surgery within the next 2 months or so, and the doctor replied, "yes."
Apparently he is having a hard time getting the doctor in Sacramento to respond to him. This was the case last time we went in as well - that he had sent information and made a call but had had no response. This time, as last time, he called the Sacramento doctor while we were in the room and got his voice mail again.
So, basically we have no new information from the extensive MRI David had two weeks ago. In reading the report ourselves we saw that the MRI (3-D with dye and the works) showed no dilation of any chambers of the heart - no enlargement - yet the tests David had here: catheterization and trans-esophageal echocardiogram DID show significant enlargement. David and I brought this up and asked about it, and the doctor just brushed it aside and said that there IS absolutely enlargement. As I said in the last post, he reminded me again that I had SEEN it. He didn't seem concerned that it did not show up on the MRI.
Maybe that's a normal, typical thing, but I don't know. I didn't push the questions and dig further and ask why one test would show one thing and one another and why he was so confident there was enlargement when this extensive MRI showed none.
He repeated to us, as he has in the past, that David's case is complicated.
Every doctor I know personally (friend or relative) that I have made this statement to has said, "Well, I'm not sure what's so complicated about it. He has an ASD (hole between the atria), and that explains the stroke. This is not unusual." We did ask the doctor today why he says David's case is complicated.
Here's the deal. It has to do with oxygen saturation in the lower part of the heart and "communication" that is happening down there that shouldn't be (I don't know what that means). He had 3 cardiologists look at David's tests back in November, and one of them postulated that David may have a hole between the bottom chambers as well. This we had not been told before. Apparently that is why David had more testing (the recent MRI). Apparently the MRI was inconclusive on that. Apparently it would be bad to patch just the hole on the top if there is one top and bottom, so we need to find out if there is a hole in the bottom too. (Notice I'm using the word "apparently" a lot, because I'm making my best guess here.)
I fail to understand how the 7 or so tests he has had (trans-esophageal echocardiogram, MRI/MRA, catheterization, etc.) have not shown this if it is there. His doctor today said if he did not hear back from the doctor in Sacramento that he would just rerun the tests.
Oh goodie - those are some pretty invasive things to go through. What will rerunning them show? I suppose if they are now specifically looking for a hole in the bottom that may cause them to approach it a bit differently - I don't know.
SO, what we know is that this doctor is having no luck getting in touch with the doctor he wants David to go to in Sacramento (and has been having basically no luck with this for nearly 3 months), that the reason he keeps calling David's situation "complicated" is because of what he is seeing in terms of oxygen levels and "communication" in the lower chambers of the heart which might indicate a hole there as well, that regardless of the recent extensive test he remains certain that there is enlargement in David's heart (right side), that HE does not think that there is an additional hole in the heart but since that is a possibility we must check, and that his preference is to close the hole up top and continue to monitor David for ongoing enlargment and "communication" after his surgery and that if there remains a problem they can always "open him up" later to take care of any additional problems.
The doctor's vision for right now is to get David up to Sacramento for the closure procedure (via catheterization) and to have them do another trans-esophageal echocardiogram while he's on the table to double-check for a hole in the bottom chambers, and if there is one to take care of it at the same time - rather than running the same tests here in town again that have been done already here and continuing to try to communicate between these two doctors . . .
That's probably a jumble of information - if so, that's about how we felt upon leaving the office. I'm not sure how I feel about all that and am waiting for it to settle in. I keep hoping we're going to get somewhere when we have one of these visits, and then nothing much seems to happen at all.
I did feel better about this appointment than about our first one. Although he was clearly in a hurry again, he didn't seem defensive or evasive. I think this doctor kind of operates with an assumption that you already know what he knows, so he leaves gaps; unfortunately we don't know what questions to ask to fill in the gaps for ourselves. He seems genuinely concerned about David's case. I'm getting the impression that he is getting grief from insurance for what he is requesting for David. I'm glad we finally got the question answered about what is so "complicated" about David's case. That at least was something new we gained.
I'm still trying to process all this, so I'm going to stop there for now.
This time the doctor was very open to answering questions, but we're not entirely comfortable with the answers. We feel like we are still where we were before we went in.
The point of the appointment was to go over the recent MRI results, which we didn't really do. He pretty much gave us a recap of where we stand and reminded us that nothing can be done for David's heart until 3 or 4 months after the stroke anyway. I then jumped in and said, "At this point it has been 3 months." David asked if we should expect surgery within the next 2 months or so, and the doctor replied, "yes."
Apparently he is having a hard time getting the doctor in Sacramento to respond to him. This was the case last time we went in as well - that he had sent information and made a call but had had no response. This time, as last time, he called the Sacramento doctor while we were in the room and got his voice mail again.
So, basically we have no new information from the extensive MRI David had two weeks ago. In reading the report ourselves we saw that the MRI (3-D with dye and the works) showed no dilation of any chambers of the heart - no enlargement - yet the tests David had here: catheterization and trans-esophageal echocardiogram DID show significant enlargement. David and I brought this up and asked about it, and the doctor just brushed it aside and said that there IS absolutely enlargement. As I said in the last post, he reminded me again that I had SEEN it. He didn't seem concerned that it did not show up on the MRI.
Maybe that's a normal, typical thing, but I don't know. I didn't push the questions and dig further and ask why one test would show one thing and one another and why he was so confident there was enlargement when this extensive MRI showed none.
He repeated to us, as he has in the past, that David's case is complicated.
Every doctor I know personally (friend or relative) that I have made this statement to has said, "Well, I'm not sure what's so complicated about it. He has an ASD (hole between the atria), and that explains the stroke. This is not unusual." We did ask the doctor today why he says David's case is complicated.
Here's the deal. It has to do with oxygen saturation in the lower part of the heart and "communication" that is happening down there that shouldn't be (I don't know what that means). He had 3 cardiologists look at David's tests back in November, and one of them postulated that David may have a hole between the bottom chambers as well. This we had not been told before. Apparently that is why David had more testing (the recent MRI). Apparently the MRI was inconclusive on that. Apparently it would be bad to patch just the hole on the top if there is one top and bottom, so we need to find out if there is a hole in the bottom too. (Notice I'm using the word "apparently" a lot, because I'm making my best guess here.)
I fail to understand how the 7 or so tests he has had (trans-esophageal echocardiogram, MRI/MRA, catheterization, etc.) have not shown this if it is there. His doctor today said if he did not hear back from the doctor in Sacramento that he would just rerun the tests.
Oh goodie - those are some pretty invasive things to go through. What will rerunning them show? I suppose if they are now specifically looking for a hole in the bottom that may cause them to approach it a bit differently - I don't know.
SO, what we know is that this doctor is having no luck getting in touch with the doctor he wants David to go to in Sacramento (and has been having basically no luck with this for nearly 3 months), that the reason he keeps calling David's situation "complicated" is because of what he is seeing in terms of oxygen levels and "communication" in the lower chambers of the heart which might indicate a hole there as well, that regardless of the recent extensive test he remains certain that there is enlargement in David's heart (right side), that HE does not think that there is an additional hole in the heart but since that is a possibility we must check, and that his preference is to close the hole up top and continue to monitor David for ongoing enlargment and "communication" after his surgery and that if there remains a problem they can always "open him up" later to take care of any additional problems.
The doctor's vision for right now is to get David up to Sacramento for the closure procedure (via catheterization) and to have them do another trans-esophageal echocardiogram while he's on the table to double-check for a hole in the bottom chambers, and if there is one to take care of it at the same time - rather than running the same tests here in town again that have been done already here and continuing to try to communicate between these two doctors . . .
That's probably a jumble of information - if so, that's about how we felt upon leaving the office. I'm not sure how I feel about all that and am waiting for it to settle in. I keep hoping we're going to get somewhere when we have one of these visits, and then nothing much seems to happen at all.
I did feel better about this appointment than about our first one. Although he was clearly in a hurry again, he didn't seem defensive or evasive. I think this doctor kind of operates with an assumption that you already know what he knows, so he leaves gaps; unfortunately we don't know what questions to ask to fill in the gaps for ourselves. He seems genuinely concerned about David's case. I'm getting the impression that he is getting grief from insurance for what he is requesting for David. I'm glad we finally got the question answered about what is so "complicated" about David's case. That at least was something new we gained.
I'm still trying to process all this, so I'm going to stop there for now.
Sunday, January 27, 2008
David Update
We see David's cardiologist (in town) tomorrow to get the interpretation of the test results from last week. David received the CD of the MRI and a medical report in the mail this past week, which, of course, we can't fully interpret. One thing the report said, though, is that none of the chambers of David's heart are enlarged. While that's great, if true, it contradicts the tests he had earlier. When he had his heart catheterization the doctor called me in and let me see the real-time images, and he pointed to the chambers on the right side and said, "Look, you can see how the right side is larger than the left, and that is not the way it is supposed to be, because the left side is the one that pumps blood to the whole body." The doctor was very clear on this. I looked, and, sure enough, I too could see very clearly that the right side was larger than the left.
I'm confused as to what this all means. Can the heart enlarge that much and then decrease in size again over the course of a couple of months (without the hole having been repaired?). Did one of his tests get switched with those of another patient? Are MRI's and catheterizations so different that one could show something that much different than another - one being more accurate, the other less?
I'm eager to find out what all this means tomorrow. I hope the doctor is more amenable to questions at this appointment than he has been in the past. This seems to me like a pretty big discrepancy, but, not having a medical degree, I don't know - and I don't know how much of a difference it makes. I just want to be sure they know exactly what they're dealing with before they operate so that what needs to be done is what actually is done.
I didn't post earlier about having gotten the results, because, as I said, I am not trained to read a medical report, but the words, "There is no enlargement in any chamber of the heart" seem pretty clear. I'm praying that a lot of clarity will come forth tomorrow.
I'm confused as to what this all means. Can the heart enlarge that much and then decrease in size again over the course of a couple of months (without the hole having been repaired?). Did one of his tests get switched with those of another patient? Are MRI's and catheterizations so different that one could show something that much different than another - one being more accurate, the other less?
I'm eager to find out what all this means tomorrow. I hope the doctor is more amenable to questions at this appointment than he has been in the past. This seems to me like a pretty big discrepancy, but, not having a medical degree, I don't know - and I don't know how much of a difference it makes. I just want to be sure they know exactly what they're dealing with before they operate so that what needs to be done is what actually is done.
I didn't post earlier about having gotten the results, because, as I said, I am not trained to read a medical report, but the words, "There is no enlargement in any chamber of the heart" seem pretty clear. I'm praying that a lot of clarity will come forth tomorrow.
Friday, January 18, 2008
Answer to Prayer
On January 10 I put up a post requesting prayers for David's physical therapy situation - prayers for him to be able to get the therapy most appropriate to his needs that is going to help him to maximize his recovery.
David has spent much time on the phone advocating for himself with the insurance company, his doctor's office, his current physical therapy place, his old physical therapy place, utilization management and lots of nurses! I know at the same time many prayers were being said for him.
He just now walked in the door and said, "Guess what?! I've been approved for 8 weeks of physical therapy back at English Oaks!"
PRAISE GOD!
Thank you for your prayers!
Not only has David not been progressing, but he's run into some trouble with severe knee pain, pain that feels like a torn miniscus (which he's had before, so he knows to describe it that way). In fact, the pain was such that he was getting concerned he had torn his miniscus and would now need surgery (again) on that TOO!
After speaking with my PT brother, we think the issue might be that he is doing his exercises slightly wrong, foot or leg slightly in the wrong position, and injuring his knee with all the repetitions he does daily. By being back at English Oaks he'll be working again with a therapist who knows him well and will work with him one-on-one and keep an eye on him throughout the session and who saw him through the early weeks of his recovery.
WE ARE SO THANKFUL!
David has spent much time on the phone advocating for himself with the insurance company, his doctor's office, his current physical therapy place, his old physical therapy place, utilization management and lots of nurses! I know at the same time many prayers were being said for him.
He just now walked in the door and said, "Guess what?! I've been approved for 8 weeks of physical therapy back at English Oaks!"
PRAISE GOD!
Thank you for your prayers!
Not only has David not been progressing, but he's run into some trouble with severe knee pain, pain that feels like a torn miniscus (which he's had before, so he knows to describe it that way). In fact, the pain was such that he was getting concerned he had torn his miniscus and would now need surgery (again) on that TOO!
After speaking with my PT brother, we think the issue might be that he is doing his exercises slightly wrong, foot or leg slightly in the wrong position, and injuring his knee with all the repetitions he does daily. By being back at English Oaks he'll be working again with a therapist who knows him well and will work with him one-on-one and keep an eye on him throughout the session and who saw him through the early weeks of his recovery.
WE ARE SO THANKFUL!
Tuesday, January 15, 2008
My-oh-my, what an MRI!
Heidi thought it might be good for me to share the story of today's MRI with you myself. So, here I go.
Today was the long awaited "next step" in dealing with my heart issue. My cardiologist told me that he wanted me to have an MRI of my heart before I am to consult with the heart surgeon that he is recommending to do the surgery. This MRI was scheduled for 10AM at Sutter Hospital in Sacramento, so after dropping Anthony off at school, I headed out through the fog to Sacramento arriving right on schedule just before 9AM to check in at the hospital.
By 10:30 I had been introduced to the team that would be doing the MRI and was on my back ready to go into the tube. I have had MRIs before, but this was something else! This time I needed an IV because a portion of the test would involve inserting a dye into the bloodstream. There was also a 2x2 square piece of equipment that sat on my chest for getting pictures of the heart. Another difference from previous MRIs was that I had to hold my breath for most of the pictures, so I was told throughout the test when to hold my breath and when I could breath regularly again.
Into the tube I went. I was pretty comfortable with the whole situation and even took some little naps between pictures. After a while, I was pulled out of the tube for a couple of minutes for a short break (This doesn't mean that I got to get up off of my back), then, back I went into the machine. Another short break after a while and back in I went again. Then I started to get uncomfortable. After sticking it out a while longer, I started trying to get the attention of the technicians, but had no success. After many prayers, I was finally given the word that we were done, I came out of the tube, was unplugged and able to stretch my arms and legs and was sent on my way.
I really had no good sense of how long I had been in the machine, but it felt like I must have been in there for about an hour-and-a-half. Was I ever shocked when I got to my locker to retrieve my things, put on my watch and noticed that it was exactly 2PM. I had been in there for three-and-a-half hours! Wow! If I had known that going into the test, I doubt if I would have made it through.
So, a HUGE thank you to all of you who were praying for me during my test. I had no idea how necessary those prayers would be, but I was certainly sustained by a supernatural power. To think that I was able to remain comfortable and calm during the first 3 hours of that test, and then was able to manage to hang on for the last uncomfortable half hour.
God is SO good!
Let's hope that these fancy pictures will be a big help in getting us the information that we need for the next step of this marathon.
Today was the long awaited "next step" in dealing with my heart issue. My cardiologist told me that he wanted me to have an MRI of my heart before I am to consult with the heart surgeon that he is recommending to do the surgery. This MRI was scheduled for 10AM at Sutter Hospital in Sacramento, so after dropping Anthony off at school, I headed out through the fog to Sacramento arriving right on schedule just before 9AM to check in at the hospital.
By 10:30 I had been introduced to the team that would be doing the MRI and was on my back ready to go into the tube. I have had MRIs before, but this was something else! This time I needed an IV because a portion of the test would involve inserting a dye into the bloodstream. There was also a 2x2 square piece of equipment that sat on my chest for getting pictures of the heart. Another difference from previous MRIs was that I had to hold my breath for most of the pictures, so I was told throughout the test when to hold my breath and when I could breath regularly again.
Into the tube I went. I was pretty comfortable with the whole situation and even took some little naps between pictures. After a while, I was pulled out of the tube for a couple of minutes for a short break (This doesn't mean that I got to get up off of my back), then, back I went into the machine. Another short break after a while and back in I went again. Then I started to get uncomfortable. After sticking it out a while longer, I started trying to get the attention of the technicians, but had no success. After many prayers, I was finally given the word that we were done, I came out of the tube, was unplugged and able to stretch my arms and legs and was sent on my way.
I really had no good sense of how long I had been in the machine, but it felt like I must have been in there for about an hour-and-a-half. Was I ever shocked when I got to my locker to retrieve my things, put on my watch and noticed that it was exactly 2PM. I had been in there for three-and-a-half hours! Wow! If I had known that going into the test, I doubt if I would have made it through.
So, a HUGE thank you to all of you who were praying for me during my test. I had no idea how necessary those prayers would be, but I was certainly sustained by a supernatural power. To think that I was able to remain comfortable and calm during the first 3 hours of that test, and then was able to manage to hang on for the last uncomfortable half hour.
God is SO good!
Let's hope that these fancy pictures will be a big help in getting us the information that we need for the next step of this marathon.
Test Update
I just got to see David for a second as I entered the house after work and he left to bring Jacob to piano lessons - ah life! All he had a chance to tell me is that he was on his back in the MRI machine for 3.5 hours. Neither of us had any idea it would be that long of a process!! We are learning all sorts of things. (It's a full evening, but if he has time I'll try to nudge him to put up a post tonight.) Now we wait for the test to be read and for a call to come for an appointment with the surgeon.
Thursday, January 10, 2008
Prayer
We have seen such answers to prayer! Things we had been told were impossible happened through answer to prayer. We are asking for prayer again.
David has done some research and found out that the physical therapy he is receiving right now is totally inappropriate for his situation, that it is maintanence only - but he has much progress he needs yet to make - not just to maintain where he is.
He's been in contact with his former PTs, and they have told him that what's going on is totally inappropriate and that he needs to be in a different situation if he is going to progress and regain full function.
Wheels are now turning. David is on the phone lodging a formal complaint with insurance as I write this. His former PTs are going to meet with the insurance rep at English Oaks to see if they can get him back in on at least a once a week basis, because that's what his need is.
We praise God for answers to prayer we have seen already, and we would ask you once again to join in prayer for us that this may be worked out so that David may receive proper care.
THANK YOU!!
David has done some research and found out that the physical therapy he is receiving right now is totally inappropriate for his situation, that it is maintanence only - but he has much progress he needs yet to make - not just to maintain where he is.
He's been in contact with his former PTs, and they have told him that what's going on is totally inappropriate and that he needs to be in a different situation if he is going to progress and regain full function.
Wheels are now turning. David is on the phone lodging a formal complaint with insurance as I write this. His former PTs are going to meet with the insurance rep at English Oaks to see if they can get him back in on at least a once a week basis, because that's what his need is.
We praise God for answers to prayer we have seen already, and we would ask you once again to join in prayer for us that this may be worked out so that David may receive proper care.
THANK YOU!!
Tuesday, January 8, 2008
Perfect!
It has seemed kind of strange to have written two such long posts in the last 2 days relating to David's health situation again. Really not that much has happened or changed with HIS HEALTH in the last week or two, but suddenly with the beginning of the new semester I'm posting a lot and at length once more.
I mentioned this to my friend Ellen tonight, and in one sentence she made it all make sense! She put it so perfectly that I had to post this:
I mentioned this to my friend Ellen tonight, and in one sentence she made it all make sense! She put it so perfectly that I had to post this:
"Now that life is getting back to normal it's obvious that it's not normal."
Thanks Ellen!! That's it!
Details, details
I'm just posting more nitty-gritty details about life as we move on into the new semester. So, as the title says: details, details . . .
Let me say right up front that I'm already doing better than I was yesterday in terms of this adjustment period. From my perspective things remain pretty overwhelming but are no longer giving me knots in my stomach. I'd say from yesterday to today was a giant step forward, and we just have to keep taking the steps forward - large or small as they may be. I appreciate any prayers that were offered on our behalf, because I'm sure that's what sustained me through the day.
Part of our adjustment is David's new therapy situation as well as entering the new semester. His first session had been so very positive, but they have progressively become more disappointing. We're learning how it works, and the position he's in now is that his first visit there was conducted by a physical therapist who evaluated him thoroughly, worked with him closely and wrote up a plan. What is happening in his sessions since then is that he has an assistant who tells him what exercises to do based on the original plan and then pretty much leaves him on his own - glancing over from time to time as she works with 3 or 4 other people and telling him what exercise to do next once he finishes with one of them.
He was used to working 3 hours at a time at English Oaks with one-on-one guidance and new challenges given to him throughout every session - as they saw him make even a small advance they adjusted and pushed him further immediately, sometimes making things up on the spot specifically tailored to his needs. Today at about the half hour point the assistant told him he was done. He was shocked. He hadn't been given anything new and had not done anything there that he could not have done on his own at home.
David, being who he is, I'm sure he did the following very graciously. He basically told the assistant that he was shocked to be done in half an hour, that he needed to be pushed, that he could have done at home what he had done there, and that the copay is really quite steep and that if he wasn't going to learn and make gains he'd rather use the money to take his wife out to a nice, fancy dinner instead (hmm . . . sounds good to me!). Given his gentle and compliant nature, I was a bit surprised he had said all that! It needed to be said, though, and I'm glad he was so forthright.
He knows she's just following orders, and she let him know that she'd make a note of it and have the physical therapist call him back and discuss his situation, so we'll see what comes of that contact.
The money really isn't the issue. The issue is whether or not he's getting what he needs, but to put it in perspective, his copay for his half hour session today that I've described above was more than what I pay to belong to a gym for an entire month. If he's getting good guidance and supervision that's going to move him forward, fine, but if all he's doing is half an hour of exercise . . . not so good.
Let me say right up front that I'm already doing better than I was yesterday in terms of this adjustment period. From my perspective things remain pretty overwhelming but are no longer giving me knots in my stomach. I'd say from yesterday to today was a giant step forward, and we just have to keep taking the steps forward - large or small as they may be. I appreciate any prayers that were offered on our behalf, because I'm sure that's what sustained me through the day.
Part of our adjustment is David's new therapy situation as well as entering the new semester. His first session had been so very positive, but they have progressively become more disappointing. We're learning how it works, and the position he's in now is that his first visit there was conducted by a physical therapist who evaluated him thoroughly, worked with him closely and wrote up a plan. What is happening in his sessions since then is that he has an assistant who tells him what exercises to do based on the original plan and then pretty much leaves him on his own - glancing over from time to time as she works with 3 or 4 other people and telling him what exercise to do next once he finishes with one of them.
He was used to working 3 hours at a time at English Oaks with one-on-one guidance and new challenges given to him throughout every session - as they saw him make even a small advance they adjusted and pushed him further immediately, sometimes making things up on the spot specifically tailored to his needs. Today at about the half hour point the assistant told him he was done. He was shocked. He hadn't been given anything new and had not done anything there that he could not have done on his own at home.
David, being who he is, I'm sure he did the following very graciously. He basically told the assistant that he was shocked to be done in half an hour, that he needed to be pushed, that he could have done at home what he had done there, and that the copay is really quite steep and that if he wasn't going to learn and make gains he'd rather use the money to take his wife out to a nice, fancy dinner instead (hmm . . . sounds good to me!). Given his gentle and compliant nature, I was a bit surprised he had said all that! It needed to be said, though, and I'm glad he was so forthright.
He knows she's just following orders, and she let him know that she'd make a note of it and have the physical therapist call him back and discuss his situation, so we'll see what comes of that contact.
The money really isn't the issue. The issue is whether or not he's getting what he needs, but to put it in perspective, his copay for his half hour session today that I've described above was more than what I pay to belong to a gym for an entire month. If he's getting good guidance and supervision that's going to move him forward, fine, but if all he's doing is half an hour of exercise . . . not so good.
Monday, January 7, 2008
Our Family Adjusting Again
As of today we have begun a new semester - as teachers and students. It is the first beginning of a semester we've had since David's stroke. His stroke happened toward the end of last semester and sent us into crisis mode in which we were focused on the basics of survival and putting one foot in front of the other. That was very difficult. This is difficult in a different way.
We don't know how to do this. We've never done it before. It was evident tonight in both of us that we are both extremely stressed under the surface. I'm sure we'll figure out how to adjust, but it's going to take a while.
I am usually prepared for the upcoming semester a month before the previous semester is over. This time around I prepared nothing. There are also lots of additional details I've never had to deal with before that have to do with my grad work and how it overlaps with my teaching as I move into the process of writing my thesis. It seems I have 47 different forms to fill out immediately and get to a dozen different places, and there are things on the forms I don't know how to fill in - call to get help - and the help doesn't know how to fill it in either.
Normally none of the above would be a problem for me, because I would have been ahead of the game, but so much just fell out of my brain last semester that, although I knew this day would come, I literally forgot until today many of the normal things I had to do to be ready - and many of the extras that were looming. So I'm in major panic mode, and my stomach is in knots. I'm not even yet planned to teach tomorrow, and it's about 8:00 in the evening right now.
The stress is evident in David too, and he doesn't typically feel or show stress too readily. Over the Christmas break he had been doing exercises for 4 hours a day. That in itself is half of a full time job. Although he hasn't said this, I sense that he too is going to have quite a task to find his way as to what the balance is going to be between continued work on his therapy exercises, medical appointments, his job, and home life. He has a very strong work ethic, so I'm sure he's going to want to be at work as much as he possibly can. It's also the case that the more he can gain in terms of returned functioning on his left side early on the better, so he needs to be diligent about those exercises. Balancing just those two things is going to be tough, I think, but there also needs to be enough time to have at least some "margin" to life and to be able to engage with each other as a family, a thing we are particularly aware of after nearly losing one of us.
Today when he got home from work both he and I went to the gym. It's important for both of us to get into that routine. He can do some of his therapy there, and his presence there will encourage me to go and be more healthy. By the time we got home getting dinner on the table ended up being a rather stressful event. (As I write these words I am overhearing him in another room saying in a frustrated voice, "That's about the 20th thing I've dropped today!" I don't know if he'd agree with me or not, but I think he's fatigued and trying to do too many things in the normal way. I think we could both learn from what one of my friends said to me last semester, "You're trying to live as if life is normal, but it isn't normal, so stop it." Both he and I have a hard time easing off and holding back, but we need to, and we'll have to figure out how that is going to happen in such a way that we can still feel at peace about ourselves on the inside given who we are.)
Tomorrow he has a PT appointment, his third at the new place. He was not as pleased with the second visit as he had been with the first, so we'll see what tomorrow holds and what decisions David might make about that.
It's hard to put into words exactly what I'm trying to say, because a lot of the above probably sounds like normal work and life stress, but there's something different about having our first "beginning of a semester" since David's stroke and figuring out what our pattern and routine are going to be. We're no longer in the crisis state we were in at the end of last semester, but we don't quite know yet what we can handle where we are now. I know this is just one of those bumps and that as we journey on we'll get past it and we'll find our balance point with all this. It's just pretty overwhelming right now. If you are someone who is praying for us, would you please pray for wisdom as we seek to make these decisions about time and priorities and balance, and would you pray for God's peace to be with us as we go through the process of getting to that point?
Thank you!
We don't know how to do this. We've never done it before. It was evident tonight in both of us that we are both extremely stressed under the surface. I'm sure we'll figure out how to adjust, but it's going to take a while.
I am usually prepared for the upcoming semester a month before the previous semester is over. This time around I prepared nothing. There are also lots of additional details I've never had to deal with before that have to do with my grad work and how it overlaps with my teaching as I move into the process of writing my thesis. It seems I have 47 different forms to fill out immediately and get to a dozen different places, and there are things on the forms I don't know how to fill in - call to get help - and the help doesn't know how to fill it in either.
Normally none of the above would be a problem for me, because I would have been ahead of the game, but so much just fell out of my brain last semester that, although I knew this day would come, I literally forgot until today many of the normal things I had to do to be ready - and many of the extras that were looming. So I'm in major panic mode, and my stomach is in knots. I'm not even yet planned to teach tomorrow, and it's about 8:00 in the evening right now.
The stress is evident in David too, and he doesn't typically feel or show stress too readily. Over the Christmas break he had been doing exercises for 4 hours a day. That in itself is half of a full time job. Although he hasn't said this, I sense that he too is going to have quite a task to find his way as to what the balance is going to be between continued work on his therapy exercises, medical appointments, his job, and home life. He has a very strong work ethic, so I'm sure he's going to want to be at work as much as he possibly can. It's also the case that the more he can gain in terms of returned functioning on his left side early on the better, so he needs to be diligent about those exercises. Balancing just those two things is going to be tough, I think, but there also needs to be enough time to have at least some "margin" to life and to be able to engage with each other as a family, a thing we are particularly aware of after nearly losing one of us.
Today when he got home from work both he and I went to the gym. It's important for both of us to get into that routine. He can do some of his therapy there, and his presence there will encourage me to go and be more healthy. By the time we got home getting dinner on the table ended up being a rather stressful event. (As I write these words I am overhearing him in another room saying in a frustrated voice, "That's about the 20th thing I've dropped today!" I don't know if he'd agree with me or not, but I think he's fatigued and trying to do too many things in the normal way. I think we could both learn from what one of my friends said to me last semester, "You're trying to live as if life is normal, but it isn't normal, so stop it." Both he and I have a hard time easing off and holding back, but we need to, and we'll have to figure out how that is going to happen in such a way that we can still feel at peace about ourselves on the inside given who we are.)
Tomorrow he has a PT appointment, his third at the new place. He was not as pleased with the second visit as he had been with the first, so we'll see what tomorrow holds and what decisions David might make about that.
It's hard to put into words exactly what I'm trying to say, because a lot of the above probably sounds like normal work and life stress, but there's something different about having our first "beginning of a semester" since David's stroke and figuring out what our pattern and routine are going to be. We're no longer in the crisis state we were in at the end of last semester, but we don't quite know yet what we can handle where we are now. I know this is just one of those bumps and that as we journey on we'll get past it and we'll find our balance point with all this. It's just pretty overwhelming right now. If you are someone who is praying for us, would you please pray for wisdom as we seek to make these decisions about time and priorities and balance, and would you pray for God's peace to be with us as we go through the process of getting to that point?
Thank you!
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