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.)