As previously related, Bettie has been having right side abdominal pain, pretty much from mid-July when they discovered an issue with her gall bladder. In the last couple of weeks it has gotten much worse...to the point where she is only up to move to the bath or down stairs from our bedroom to the wheelchair, where she can be taken to the couch in the family room. Her appetite has deteriorated and she has lost at least four pounds...down now to 98!
Needless to say, this has been a great concern to the family and to her professional treatment staff. Both doctors Schumer (our primary-care guy) and Heide (her "stroke doctor"...actually a neurologist) have provided input. One of their suggestions was a new ultra-sound exam of the gall bladder, which was performed last Friday morning.
Today, Dr. Schumer got the results of that scan and called us with the news: "I'm referring Bettie to Dr. Pettie on Friday...she needs to have her gall bladder removed." I was out when the call came so I didn't speak with Dr. Schumer, but the bottom line is she will have the surgery within the next couple of weeks.
Now it will seem kind of odd to you, for us to be celebrating the need for surgery. This is not the kind of thing one usually looks forward to...kind of in the category of rejoicing over an upcoming root canal...like, who does that? However, if you were here with us, watching her decline these last couple of weeks, you would understand. When Rick told me the news from Dr. Schumer, my heart leaped in relief...almost joy. At last, they have found something. Yes!
Though it is often hard to read Bettie's responses, I think I detected some relief on her part too, when I told her about it.
Being a person of faith, I do not consider the gall bladder a vestigial (look it up) remain from a previous branch of the human tree. Nevertheless, its designed role can be omitted with little effect on one's lifestyle. It this case, I readily accept (for her, as I have durable power of attorney) a life free of both gall bladder and related pain, as opposed to continuing with both.
Modern surgical practice allows this type of surgery to be minimally invasive, which is fortunate, given how weak and frail she is right now. (On that note, I think we have arrested the weight loss and she is eating somewhat better the last couple of days.)
But there is a good thing that will come from this extra trial of pain, coming, as it has, on top of stroke. When Bettie is free of pain, the stroke will seem to me like a relatively minor nuisance in our life together. I predict that she'll walk with little impairment, get better and better at talking, and regain some useful functionality with her right hand. She might even feel like...well who knows. But she'll be back and that is news, at last some news.
Showing posts with label stroke. Show all posts
Showing posts with label stroke. Show all posts
Monday, October 19, 2009
Friday, October 9, 2009
Is the Worst Behind Us?
Gee, I hope so.
As you have noted, there have not been many posts to this blog recently. That's because I like to report progress toward recovery...and there has been precious little of it lately. But maybe we are turning a corner just now. By that I mean today...this afternoon!
To recap recent history, since Bettie came home from the hospital on the 30th of July, she has been frequently complaining of pain in the right side of her abdomen. At first we naturally (and probably correctly) attributed it to the drain tube that had been inserted into her gall bladder and which remained with her for another few weeks. When that was removed (see Maybe We'll Glow in the Dark) we thought that would be the end of the pain. It wasn't.
Next we discovered a badly deteriorated right hip joint. We arranged to have an injection of Depo Medrol in the hip to relieve the pain temporarily. It didn't.
Finally, just a week ago today we concluded that she had a bowel blockage. We had just selected a new primary care doctor (Dr. David Schumer) and he had an x-ray made that confirmed her bowel was full, but not necessarily blocked. Four days of Miralax solved that problem...but the pain persisted.
So today I took her back to Dr. Schumer to see if we could determine what we might be missing. Dr. Schumer is just the kind of guy I hoped we would find. (We found him simply by calling a physician referral service in Auburn.) He describes himself as a "former hippie" so you can imagine he is somewhat laid back. He has a wonderful way of making you feel like everything will be OK. He comes in the examining room, sits down, puts his feet up and chats with us as if we are the only important case he has and the rest of his day is ours. We like him.
His take on Bettie's current condition is basically post stroke depression. He says he sees it all the time. He reassures me that it will pass and gives me some tips and adjusts some medication and adds a new one to help with it. "I'll see you early next week...we'll get through this" he assures me. We leave and I feel better...Bettie, not so much.
Reassured that we're doing the right things, it is a little easier to help Bettie through this. For one thing, my son Rick (who I recently hired to be semi-full-time caregiver, partly because he is a former certified nursing assistant) has helped me soften my overall dealings with Bettie. I was getting a little bossy with her, he pointed out, whereas she needs tender right now...lots of TLC. I think it is working. Maybe it's just me, but it seems like she's feeling some better this afternoon. I got her to make some funny faces at me...that's always a good sign.
Meanwhile, the issues that put me in the ER last week seem to be past and I'm following a new regime on doctors orders...weight coming down, neck pain decreasing, and other good stuff. All in all, I'm hopeful that we've left the worst behind us and are ready to make some progress.
As you have noted, there have not been many posts to this blog recently. That's because I like to report progress toward recovery...and there has been precious little of it lately. But maybe we are turning a corner just now. By that I mean today...this afternoon!
To recap recent history, since Bettie came home from the hospital on the 30th of July, she has been frequently complaining of pain in the right side of her abdomen. At first we naturally (and probably correctly) attributed it to the drain tube that had been inserted into her gall bladder and which remained with her for another few weeks. When that was removed (see Maybe We'll Glow in the Dark) we thought that would be the end of the pain. It wasn't.
Next we discovered a badly deteriorated right hip joint. We arranged to have an injection of Depo Medrol in the hip to relieve the pain temporarily. It didn't.
Finally, just a week ago today we concluded that she had a bowel blockage. We had just selected a new primary care doctor (Dr. David Schumer) and he had an x-ray made that confirmed her bowel was full, but not necessarily blocked. Four days of Miralax solved that problem...but the pain persisted.
So today I took her back to Dr. Schumer to see if we could determine what we might be missing. Dr. Schumer is just the kind of guy I hoped we would find. (We found him simply by calling a physician referral service in Auburn.) He describes himself as a "former hippie" so you can imagine he is somewhat laid back. He has a wonderful way of making you feel like everything will be OK. He comes in the examining room, sits down, puts his feet up and chats with us as if we are the only important case he has and the rest of his day is ours. We like him.
His take on Bettie's current condition is basically post stroke depression. He says he sees it all the time. He reassures me that it will pass and gives me some tips and adjusts some medication and adds a new one to help with it. "I'll see you early next week...we'll get through this" he assures me. We leave and I feel better...Bettie, not so much.
Reassured that we're doing the right things, it is a little easier to help Bettie through this. For one thing, my son Rick (who I recently hired to be semi-full-time caregiver, partly because he is a former certified nursing assistant) has helped me soften my overall dealings with Bettie. I was getting a little bossy with her, he pointed out, whereas she needs tender right now...lots of TLC. I think it is working. Maybe it's just me, but it seems like she's feeling some better this afternoon. I got her to make some funny faces at me...that's always a good sign.
Meanwhile, the issues that put me in the ER last week seem to be past and I'm following a new regime on doctors orders...weight coming down, neck pain decreasing, and other good stuff. All in all, I'm hopeful that we've left the worst behind us and are ready to make some progress.
Wednesday, September 30, 2009
Oh No, Back in the Hospital
These strokes are capricious things...they sneak up on you, often without warning. On the other hand, sometimes there is ample warning...and that's what happened this time.
For the last several weeks, there have been warning signs that another stroke is possibly looming in the future:
For the last several weeks, there have been warning signs that another stroke is possibly looming in the future:
- A couple of episodes of double vision.
- About five episodes of numbness of the left arm from shoulder to finger tips, lasting a minute or two.
- A persistent headache just behind the right eye, sometimes lasting for more than a day at a time.
- On Sunday a large island of numbness in the right side of the face.
During a visit with Bettie's nutrition counselor on Tuesday, these symptoms were all discussed and he said it was time to see just what was going on...NOW. So off to the emergency room once again, this time at Valley Medical Center. We choose VMC for a couple of reasons:
- They are a little better equipped for this kind of stuff than Auburn.
- They have all my medical records.
That's right, MY records. You didn't think this was about Bettie did you? She's coming along OK, this time it is my issue.
Being male and basically invincible, I've been noticing the issues mentioned above and, because none of them (except the headache) last for more than a minute or so, pretty much ignoring them. But when the facial numbness occurred on Sunday, I realized that this could be pretty serious. Since I was scheduled for a visit with Bettie's nutrition coach on Tuesday for my own issues, I mentioned everything to him.
So here I am, blogging from a hospital bed at VMC while they poke, prod, scan, and otherwise make like doctors. I had to stay the night Tuesday and may have to Wednesday as well, simply because of the number of tests they want to do.
Meanwhile, Bettie is being cared for by our son Rick.
It is nice that I have access to the web from bed here, but it is very difficult logistically. The monitor is across the room and the controls to type and edit are unfamiliar. I'll post this now, and then edit it tomorrow when I get home, assuming nothing serious is found that precludes it. (Talk about serious...a few minutes ago the nurse came in and said I had flat-lined...she quickly discovered that one of my heart monitor cords had unplugged. Whew, that was close.)
__________ Update __________
I did, in fact stay both Tuesday and Wednesday nights and had a good going over. I had my head in a scanner three different times...you'd think they could find something in there with all of that, wouldn't you. Also had blood work and a echo analysis of my heart for half an hour. I'll revisit some of the specialists soon to get the fine details. But for the most part, everything checked OK. I need to be taking asprin every day as a cheap, effective blood thinner, and of course, no more having secret issues that I keep to myself. It turns out that I am not invincible...imagine that.
Sunday, August 9, 2009
A Diet to Die For
You may remember from the post on Thursday that we spent some time that day at Dr. Heide's Clinic getting briefed on nutrition.
I must confess that when I heard Raven, the pleasant young woman who greeted us, identify herself as a dietitian, I put up my guard. My only experience with "dietitians" has been in a hospital setting ... not exactly a place known for truly healthful eating, at least not in my (and Bettie's) opinion. (The term Jello-dispenser comes to mind.)
It was probably fun for Raven to watch as I morphed from hostile to accepting as she explained her credentials and approach. It turns out she is a graduate of Bastyr University, one of the premier "alternative" medical training schools in the country. (And they are located right here in the Seattle area; Juanita to be precise).
There are a couple of issues for which we needed dietary help:
I must confess that when I heard Raven, the pleasant young woman who greeted us, identify herself as a dietitian, I put up my guard. My only experience with "dietitians" has been in a hospital setting ... not exactly a place known for truly healthful eating, at least not in my (and Bettie's) opinion. (The term Jello-dispenser comes to mind.)
It was probably fun for Raven to watch as I morphed from hostile to accepting as she explained her credentials and approach. It turns out she is a graduate of Bastyr University, one of the premier "alternative" medical training schools in the country. (And they are located right here in the Seattle area; Juanita to be precise).
There are a couple of issues for which we needed dietary help:
- Maintaining a consistent level of foods with sufficient Vitamin K content.
This is so that her diet does not end up counteracting the desirable effect of the blood thinner that Bettie must take. - Stopping further weight loss, and beginning to build back some muscle. (At the time of her stroke, Bettie weighed 122 pounds. She is now down to 102.)
Both these issues are important, and both of them have a feedback method that will tell us how we are doing. For the Vitamin K issue, we go in for a weekly blood check to be sure the consistency is where they want it. The weight loss monitoring is more simple: get her on the scale.
So, what does Raven recommend to arrest the weight loss and begin going the other way? A high calorie diet, of course. Lots of olive oil, nuts and nut butters, cheese, fish, (particularly high-fat salmon). For now, eat the high-starch potatoes before the green vegetables. And how about desert? Oh sure, ice cream, cake, anything dense with lots of calories.
Of course I will be hovering over her at meals, making sure that her plate is clean...secretly hoping that she can't quite finish that last bite (or scoop) of Haagen Dazs Coffee Mocha. Ah, the life of a caregiver. Yes, it's a tough job, but somebody's got to do it.
Thursday, August 6, 2009
The Clot is :-) The Gall Bladder is :-(
Big news today: the clot is gone, I saw the evidence today!
We had our second appointment at Dr. Heide's clinic. First we spent nearly an hour with the dietitian, learning how to feed her to get her weight back up and keep her blood consistency stable. After that, we spent the better part of the next hour having her head examined, quite literally.
In a typical clinic exam room, she lay on the table with a crown-like gadget on her head, to which were attached two ultrasound probes, a left and a right. The technician aimed one probe at the vein where the original clot lodged in her left brain hemisphere, and the other at the corresponding vein in the right hemisphere (for comparison).
When he turned it on, we could watch, on a computer monitor, electronic depictions of the sound waves, picking up the blood flow through each vein. A sound amplifier and speaker completed the information flow.
The device ran for just over half an hour, displaying nearly identical pictures of flow through both veins, side by side. The flow sounded the same on each side, and the digital readout of volume was just very slightly better in the right (non-clot) side than the left. I asked the tech if he could tell how long the clot had been gone, but he could only guess that it was probably breaking up fairly soon after it first lodged there. No way to know. Many clots never break up.
Clear flow of blood, means that whatever cells in the clot area survived, should be able to return to good function. It also means good flow to facilitate retraining of adjacent cells. I may not be describing it in good doctor-talk, but any way you say it, it is good news.
On the not-so-good side of things is this: For the last couple of days, by afternoon Bettie has been way more comfortable lying down that any other position. So you're thinking: "Well duh, who isn't?" But this is different.
Her gall bladder area seems to be giving her trouble each time she gets up, at least later in the day. I've talked to the nurse at Dr. Spens' (the doctor who is handling Bettie's gall bladder issue) office both yesterday and today. We decided to move Bettie's follow-up visit up by a week. She'll see Dr. Spens on Monday. Until then, she may be down more than she's up.
Comparing the two issues: No Clot vs (maybe) No Gall Bladder ... well, its a no brainer, isn't it?
We had our second appointment at Dr. Heide's clinic. First we spent nearly an hour with the dietitian, learning how to feed her to get her weight back up and keep her blood consistency stable. After that, we spent the better part of the next hour having her head examined, quite literally.
In a typical clinic exam room, she lay on the table with a crown-like gadget on her head, to which were attached two ultrasound probes, a left and a right. The technician aimed one probe at the vein where the original clot lodged in her left brain hemisphere, and the other at the corresponding vein in the right hemisphere (for comparison).
When he turned it on, we could watch, on a computer monitor, electronic depictions of the sound waves, picking up the blood flow through each vein. A sound amplifier and speaker completed the information flow.
The device ran for just over half an hour, displaying nearly identical pictures of flow through both veins, side by side. The flow sounded the same on each side, and the digital readout of volume was just very slightly better in the right (non-clot) side than the left. I asked the tech if he could tell how long the clot had been gone, but he could only guess that it was probably breaking up fairly soon after it first lodged there. No way to know. Many clots never break up.
Clear flow of blood, means that whatever cells in the clot area survived, should be able to return to good function. It also means good flow to facilitate retraining of adjacent cells. I may not be describing it in good doctor-talk, but any way you say it, it is good news.
-----------------------
On the not-so-good side of things is this: For the last couple of days, by afternoon Bettie has been way more comfortable lying down that any other position. So you're thinking: "Well duh, who isn't?" But this is different.
Her gall bladder area seems to be giving her trouble each time she gets up, at least later in the day. I've talked to the nurse at Dr. Spens' (the doctor who is handling Bettie's gall bladder issue) office both yesterday and today. We decided to move Bettie's follow-up visit up by a week. She'll see Dr. Spens on Monday. Until then, she may be down more than she's up.
Comparing the two issues: No Clot vs (maybe) No Gall Bladder ... well, its a no brainer, isn't it?
Tuesday, August 4, 2009
"Is there anything I can do to help?"
When this first happened, I couldn't count the number of people who expressed a desire to be of help, as this post is titled. At the time, I had no idea if I needed help and if so, what kind. I needed my wife back, that's what I needed..."Help with that if you can", I thought. Now that I've lived a little over a month with stroke in my life, I have a clearer perspective than at the first.
Our home situation is unique in that we have live-in family. Our son Tim, his wife Veronica, and their two children: Jordan, 17 and Jonny, 14 have been with us since we bought our present home, five years ago. That's a different story, but it has worked out for us quite well...and now it is a godsend.
I often would tell people: "We're like the Waltons (a 70's TV series) and I'm the grandpa." Funny thing: in the TV show, Ellen Corby, the actress who played the Grandma, had a stroke, just like Bettie's: speech impeded somewhat and right side partially paralyzed. She was off the show for a time, then came back, stroke and all. Her role on the show only lasted another couple of years, but she lived 20 more years after the stroke. Will Geer, the actor who played Grandpa, died within a year after her return to the show. (Hope we're not like the Waltons in that regard.)
I mention the home situation only to make the point that what I say here about the need for help and support is being met for me by live-in family.
But if you know of another couple where a spouse has suffered stroke, the unaffected mate needs help immediately. They want to spend every possible minute at the hospital for those first few weeks. This means home meals, lunches for work, house and yard maintenance, car servicing...all the things that take time away from being with the loved one are opportunities to be of service. If you are inclined to be of help, don't ask "Is there anything I can do?". Just pick something and say "I'm going to ...." and then do it.
Once the stroke patient is home, I don't think one person could possibly provide safe and responsible care. If there is no family or other support network, then a live-in facility is probably the only reasonable option.
If you find yourself in that situation (and you should not think "It can't happen to me") your choices for providing that level of care are: be rich or have long term care insurance. Think about it...this is not something you want to try at home...alone.
Our home situation is unique in that we have live-in family. Our son Tim, his wife Veronica, and their two children: Jordan, 17 and Jonny, 14 have been with us since we bought our present home, five years ago. That's a different story, but it has worked out for us quite well...and now it is a godsend.
I often would tell people: "We're like the Waltons (a 70's TV series) and I'm the grandpa." Funny thing: in the TV show, Ellen Corby, the actress who played the Grandma, had a stroke, just like Bettie's: speech impeded somewhat and right side partially paralyzed. She was off the show for a time, then came back, stroke and all. Her role on the show only lasted another couple of years, but she lived 20 more years after the stroke. Will Geer, the actor who played Grandpa, died within a year after her return to the show. (Hope we're not like the Waltons in that regard.)
I mention the home situation only to make the point that what I say here about the need for help and support is being met for me by live-in family.
But if you know of another couple where a spouse has suffered stroke, the unaffected mate needs help immediately. They want to spend every possible minute at the hospital for those first few weeks. This means home meals, lunches for work, house and yard maintenance, car servicing...all the things that take time away from being with the loved one are opportunities to be of service. If you are inclined to be of help, don't ask "Is there anything I can do?". Just pick something and say "I'm going to ...." and then do it.
Once the stroke patient is home, I don't think one person could possibly provide safe and responsible care. If there is no family or other support network, then a live-in facility is probably the only reasonable option.
If you find yourself in that situation (and you should not think "It can't happen to me") your choices for providing that level of care are: be rich or have long term care insurance. Think about it...this is not something you want to try at home...alone.
Saturday, August 1, 2009
A Date with "New" Bettie
Several times in the week before coming home I asked Bettie if she would like to go to church next week. Each time she quite adamantly said: "No", with an expression that said: "How could you ask such a thing." I'm not sure just what the issue is, but she clearly is not ready. I went alone again.
Speaking of church, a couple of weeks ago, Art Palecek, the Associate Pastor, announced to the congregation that Bettie's clot had dissolved. I was unsuccessful in getting his attention to correct him...the doctor didn't say that. In fact the doctor said the clot is likely a permanent fixture. Blood is flowing around it, but it is still there. However, if you read the post: A Follow Up With Dr. Heide you know that there is a good chance that Pastor Art was right after all. We'll find out more this week (on Wednesday and Thursday) when more definitive scans are performed. Where do you suppose Pastor Art is getting his information. Hmmm.
When I arrived home, I found Bettie with Veronica and Jordan on the front deck having lunch at the big table under the awning. Later, we took a nap and then, about 4:00 o'clock, I coaxed a "Yes" out of her to have a dinner date with me.
I had received a $50 dinning card for The Cheesecake Factory for Fathers Day, so off we went to cash-in. Though she was a little apprehensive about it at first, she did just fine.
Soon, a couple took the table next to ours. The gentleman was Captain Mike McCoy, with Tukwila Fire Dept. I asked him if he was a 911 responder. He confirmed that he was. I thanked him for his service, and told him that it was people like him that took care of Bettie that fateful morning (June 23rd), and that I have a great respect for people that do what he does. He seemed pleased and, I hope, honored...that's what I intended: "Honor to whom honor is due".
All in all, it was a lovely evening...my first date with the New Bettie.
Speaking of church, a couple of weeks ago, Art Palecek, the Associate Pastor, announced to the congregation that Bettie's clot had dissolved. I was unsuccessful in getting his attention to correct him...the doctor didn't say that. In fact the doctor said the clot is likely a permanent fixture. Blood is flowing around it, but it is still there. However, if you read the post: A Follow Up With Dr. Heide you know that there is a good chance that Pastor Art was right after all. We'll find out more this week (on Wednesday and Thursday) when more definitive scans are performed. Where do you suppose Pastor Art is getting his information. Hmmm.
When I arrived home, I found Bettie with Veronica and Jordan on the front deck having lunch at the big table under the awning. Later, we took a nap and then, about 4:00 o'clock, I coaxed a "Yes" out of her to have a dinner date with me.
I had received a $50 dinning card for The Cheesecake Factory for Fathers Day, so off we went to cash-in. Though she was a little apprehensive about it at first, she did just fine.
Soon, a couple took the table next to ours. The gentleman was Captain Mike McCoy, with Tukwila Fire Dept. I asked him if he was a 911 responder. He confirmed that he was. I thanked him for his service, and told him that it was people like him that took care of Bettie that fateful morning (June 23rd), and that I have a great respect for people that do what he does. He seemed pleased and, I hope, honored...that's what I intended: "Honor to whom honor is due".
All in all, it was a lovely evening...my first date with the New Bettie.
Friday, July 31, 2009
A Follow-up with Dr. Heide
If you have read this blog from the beginning, you will recognize Dr. Heide as a key player in this whole drama. I first met him via video hookup while Bettie was in the ER, the day it happened. Over the course of the last five and a half weeks, we have come to know, trust, and be thankful for this man.
Today was the Bettie's first follow-up visit after discharge. It took place at his facility, in Renton, near Valley General Hospital. It began with a new scan of Bettie's head, so that a comparison could be made with Day One. Then Bettie was weighed (104.2 lbs... down about 20 pounds from five weeks ago) and finally we saw our friend, Dr. Heide.
He showed us the scan on his computer screen, blown up to reveal startling detail (if you know what you are looking for). He pointed out that the original scan clearly (at least to him) showed the clot, right where speech and communication are processed.
Today's scan, did not show a clot there at all! Now before we get too excited, he wants to do a different kind of scan next week that will show different detail to confirm that the clot is, in fact, gone. If it is, that will considerably improve her prognosis.
Part of the doctor's routine involves asking Bettie her name. I don't think she has ever been able to answer that question for me ... but then I'm not a doctor. But for him, she says "Bettie Aitkins", like "Well duh". Seems like this happens too often to be a coincidence. Oh well.
An interesting part of the conversation with the doctor was about music. You may remember that my son Steve, suggested that we put headphones on Bettie and play her old but familiar music (See the post titled: The Sound of Music). She responded dramatically, singing along before she could speak or put other sentences together. Evidently, that idea of Steve's had not been explored by the medical community before. Dr. Heide says we are exploring new ground here and he is very interested in discovering the potential for communication with stroke patients via music.
He wants me to continue singing to, and with, Bettie. I told him I know a lot of songs, since I sing in a men's chorus (Northwest Sound). Unfortunately, I sing bass, so if Bettie starts croaking in a deep voice, blame me.
Before we left Dr. Heide's office and went out to set up the follow-on visits with his nutrition expert and others on his staff, he told me this: "After Bettie's stroke, I had a number of other patients with the same type of stroke. I have directed them to the Bettie's Challenge blog for help with dealing with the situation, and it has been very helpful. Very helpful."
I have to tell you, that gives me a big lump in the throat. We have known all through this that the Biblical promise (Rom. 8:28) that "... all things work together for good ... " is true. Dr. Heide's comment demonstrated one way that it is happening (and there are undoubtedly others as well). Very humbling.
If you are one of those refereed here by Dr. Heide because you too are traveling this road, know that you are not alone. Feel free to contact me directly if there is any way I could be of help, I'd be honored. Contact info is on the Profile page.
A final, but very important, point from the doctor. I asked him how he was coming on procuring a very expensive but promising piece of new technology that could be helpful in regenerating brain tissue. He said that, with the federal government proposing to take over the health care industry, it is currently impossible for any doctor to make a sensible business case for major equipment expenditures. Our elected officials in the executive and legislative branches of government are already having a negative effect on the medical profession, and they are only talking about what they want to do.
This blog is not about politics, but about the care of a stroke patient, my wife. My recommendation concerning the issue is this: ask your doctor what he/she thinks about the issue, then write or phone your representative and tell them your personal concerns, based on what you have learned. Would it be asking too much of your representative to insist that they read and understand the bill, at a minimum, before voting on it?
Today was the Bettie's first follow-up visit after discharge. It took place at his facility, in Renton, near Valley General Hospital. It began with a new scan of Bettie's head, so that a comparison could be made with Day One. Then Bettie was weighed (104.2 lbs... down about 20 pounds from five weeks ago) and finally we saw our friend, Dr. Heide.
He showed us the scan on his computer screen, blown up to reveal startling detail (if you know what you are looking for). He pointed out that the original scan clearly (at least to him) showed the clot, right where speech and communication are processed.
Today's scan, did not show a clot there at all! Now before we get too excited, he wants to do a different kind of scan next week that will show different detail to confirm that the clot is, in fact, gone. If it is, that will considerably improve her prognosis.
Part of the doctor's routine involves asking Bettie her name. I don't think she has ever been able to answer that question for me ... but then I'm not a doctor. But for him, she says "Bettie Aitkins", like "Well duh". Seems like this happens too often to be a coincidence. Oh well.
An interesting part of the conversation with the doctor was about music. You may remember that my son Steve, suggested that we put headphones on Bettie and play her old but familiar music (See the post titled: The Sound of Music). She responded dramatically, singing along before she could speak or put other sentences together. Evidently, that idea of Steve's had not been explored by the medical community before. Dr. Heide says we are exploring new ground here and he is very interested in discovering the potential for communication with stroke patients via music.
He wants me to continue singing to, and with, Bettie. I told him I know a lot of songs, since I sing in a men's chorus (Northwest Sound). Unfortunately, I sing bass, so if Bettie starts croaking in a deep voice, blame me.
Before we left Dr. Heide's office and went out to set up the follow-on visits with his nutrition expert and others on his staff, he told me this: "After Bettie's stroke, I had a number of other patients with the same type of stroke. I have directed them to the Bettie's Challenge blog for help with dealing with the situation, and it has been very helpful. Very helpful."
I have to tell you, that gives me a big lump in the throat. We have known all through this that the Biblical promise (Rom. 8:28) that "... all things work together for good ... " is true. Dr. Heide's comment demonstrated one way that it is happening (and there are undoubtedly others as well). Very humbling.
If you are one of those refereed here by Dr. Heide because you too are traveling this road, know that you are not alone. Feel free to contact me directly if there is any way I could be of help, I'd be honored. Contact info is on the Profile page.
A final, but very important, point from the doctor. I asked him how he was coming on procuring a very expensive but promising piece of new technology that could be helpful in regenerating brain tissue. He said that, with the federal government proposing to take over the health care industry, it is currently impossible for any doctor to make a sensible business case for major equipment expenditures. Our elected officials in the executive and legislative branches of government are already having a negative effect on the medical profession, and they are only talking about what they want to do.
This blog is not about politics, but about the care of a stroke patient, my wife. My recommendation concerning the issue is this: ask your doctor what he/she thinks about the issue, then write or phone your representative and tell them your personal concerns, based on what you have learned. Would it be asking too much of your representative to insist that they read and understand the bill, at a minimum, before voting on it?
Saturday, July 18, 2009
Emotions Returning, Internal Issue Improving
The emotion displayed yesterday over the shoes may, in fact, be a sign of progress. It may also indicate a common stroke by-product: depression. Likely, it is both.
It showed up again after breakfast this morning, during a speech therapy session. Liz had her print her name. (I was amazed that she could do it, and with quite good left-handed penmanship.) But after she had spelled out "B E T T I E", she sat and looked at it for a few moments, then put her head down and began to softly sob. To me it looked like she was grieving over a friend she used to know, but now was gone.
If that theory is correct, it means she is more aware, and that awareness includes greater awareness of her current plight. Progress like this is a good news/bad news sort of thing. But we take what we get.
When I returned, just after lunch, she was in good spirits and having a nice visit with a dear old friend, Barbara Funk, a classmate from elementary through high school. Barbara is a retired RN, and did a lot of her career right here in Auburn General, as the hospital was called then. I value her positive appraisal of Bettie's progress, which was borne out by Dr. Sultana, who came in during the visit.
More good news from the doctor: the gall bladder drain is doing it's job, the infection and inflammation are down and the bladder will not need to be removed, unless there are complications later on. The drain stays in for six weeks.
At dinner time, I found a new roommate had moved in with Bettie, so she got acquainted around the two community tables in the kitchen. During dinner I was chatting with the wife of the only male patient on the ward. I learned that his stroke occurred in April and he was almost completely paralyzed: no movement and no speech. Now he is quite talkative and his speech seems pretty normal to me. The wife said that Bettie is way ahead of where he was at this stage. Very encouraging.
After dinner, I took Bettie down to the lobby atrium to enjoy the sun. We talked, I quizzed her on things like her name, my name, etc. She eventually came up with "Bettie Aitkins" for her and "Just plain Bill" for me.
So, this is Just Plain Bill, signing off ... with a smile.
It showed up again after breakfast this morning, during a speech therapy session. Liz had her print her name. (I was amazed that she could do it, and with quite good left-handed penmanship.) But after she had spelled out "B E T T I E", she sat and looked at it for a few moments, then put her head down and began to softly sob. To me it looked like she was grieving over a friend she used to know, but now was gone.
If that theory is correct, it means she is more aware, and that awareness includes greater awareness of her current plight. Progress like this is a good news/bad news sort of thing. But we take what we get.
When I returned, just after lunch, she was in good spirits and having a nice visit with a dear old friend, Barbara Funk, a classmate from elementary through high school. Barbara is a retired RN, and did a lot of her career right here in Auburn General, as the hospital was called then. I value her positive appraisal of Bettie's progress, which was borne out by Dr. Sultana, who came in during the visit.
More good news from the doctor: the gall bladder drain is doing it's job, the infection and inflammation are down and the bladder will not need to be removed, unless there are complications later on. The drain stays in for six weeks.
At dinner time, I found a new roommate had moved in with Bettie, so she got acquainted around the two community tables in the kitchen. During dinner I was chatting with the wife of the only male patient on the ward. I learned that his stroke occurred in April and he was almost completely paralyzed: no movement and no speech. Now he is quite talkative and his speech seems pretty normal to me. The wife said that Bettie is way ahead of where he was at this stage. Very encouraging.
After dinner, I took Bettie down to the lobby atrium to enjoy the sun. We talked, I quizzed her on things like her name, my name, etc. She eventually came up with "Bettie Aitkins" for her and "Just plain Bill" for me.
So, this is Just Plain Bill, signing off ... with a smile.
Is This a Good Sign?
Yesterday, for the first time that I have been aware of in this adventure, Bettie got upset with me. Maybe it is a good sign, I don't know. (I had brought in the shoes the physical therapist had requested, a pair of Costco's best sneakers. They do have laces, as opposed to the more preferable Velcro, but they fit well and support her better than the slip-ons she was wearing for walking.)
In her room after lunch, I put the shoes on her, as she was going to have more PT later. There was nothing I could say or do, (other than not putting them on at all) that made it alright with her to wear those shoes. I explained all the benefits and how I was just trying to help...all that good stuff. She just sat there, in her Costco specials, and glared at the floor. When she finally looked up, her face said "Why did you do that to me?" What could I say?
Most of the time, dealing with stroke is just, well...hard. Occasionally, it is heartbreaking.
In her room after lunch, I put the shoes on her, as she was going to have more PT later. There was nothing I could say or do, (other than not putting them on at all) that made it alright with her to wear those shoes. I explained all the benefits and how I was just trying to help...all that good stuff. She just sat there, in her Costco specials, and glared at the floor. When she finally looked up, her face said "Why did you do that to me?" What could I say?
Most of the time, dealing with stroke is just, well...hard. Occasionally, it is heartbreaking.
Tuesday, June 23, 2009
The Day it Happened
As best we can determine, Bettie's challenge began on Tuesday, June 23, a few minutes after 9 a.m.
(A little personal background here may help: I am employed at iShip, Inc. a subsidiary of UPS, the shipping company. I work in their offices every Tuesday, Wednesday, and Thursday; I work from home on Fridays, using the company intranet. Being something of an insomniac, I awaken one or more times throughout the night. When it's a work night, I just get up and go into the office. So I'm often there in the wee hours of the morning, but seldom past noon. It's kind of crazy, but it works for me, and the wonderful people I work with are very accommodating. My usual habit on work days has been to give Bettie a brief check-in call between 8 and 9 a.m.)
I first called Bettie at about 8:40 that morning. I got no answer, but that occasionally happens if she is in the bathroom or something. I called again just a few minutes after nine. She answered, in a normal sounding voice, with "You're late". Not saying "Hello" was a little unusual, but maybe everything was normal to that point.
After those first two words, our world changed.
What I heard sounded like she was crying at first. (That has happened before ... she called me at work years ago to give me the news that my grandmother had died. When I answered that call she couldn't speak for a minute or so, so I thought it was something like that.) I gave her a few moments to compose herself, but it didn't happen. It sounded like she was muttering or something.
We knew she was at risk for stroke, due to a heart condition called atrial fibrillation that she had been dealing with for about six months, but realizing that I was actually hearing one happen took a minute or so to sink in. I finally said something like: "Honey, I'm going to call 911 ... Do you want me to call 911?"
I made out "911" in her garbled response, but that was all. My head was spinning, this was the real thing!
I hung up and punched in 911. Since I was at iShip's Factoria office, I got the Bellevue police response center but they quickly connected me to Auburn and I gave them the required details. Paramedics were there in minutes and found Bettie in bed and mostly unresponsive.
I locked up my computer, told a co-worker: "I'm leaving; I think my wife may have had a stroke", and took off for home. I'm not careful to always have my cell phone with me and have it on, but that day I did.
Ten minutes into the trip, my son Tim called me and put one of the emergency team guys on the phone. (Tim, his wife Veronica, and their two children live with us. Being self employed, he might leave for work anytime between 7 a.m. and 10. This day, he happened to still be home.) The emergency team guy told me they were taking her to Auburn Regional Medical Center, so that was where I headed.
On arrival I provided the registration desk some quick information, then I found Bettie in ER room #1. I suppose the initial reaction one has in a situation like that is akin to what you might feel when the sheet is pulled back in the morgue and you realize that, yes it's her.
The doctor was busy determining the extent of her condition, asking her all kinds of questions, poking, prodding, touching, all with speed and precision. He did his best to fill me in on what he was finding as he proceeded.
Though her eyes were about half open, there did not appear to be much going on in there. It was then that he first used the word "Stroke". Though not a surprise, given her history of atrial fibrillation, hearing that word came down heavy, like hearing a jury foreman saying, "Your honor, we find the defendant guilty of all charges."
They soon whisked her off for a CAT scan of her head to actually see what was going on.
Upon return, the doctor detailed it for me: "She has a very large clot on the left side of her brain, in the area where speech is centered. It is very serious and there are some very high risk issues you are going to have to decide right now." They wheeled in a cart with a flat-screen TV monitor and a camera on it. I was quickly introduced via video to Dr Aaron Heide, a stroke specialist who handles cases like Bettie's for a number of area hospitals. He explained that we had two high risk scenarios here: doing nothing, and doing something.
The something he proposed was to transport her to Highline Medical Center, in Burien, where another specialist, Dr. Wiess, could attempt to break up and/or remove the clot via a catheter inserted into her groin and directed all the way up to her brain using some very new, very high-tech imaging. While it offered the prospect of giving her a greater chance for some recovery than doing nothing, it also could create bleeding and ultimately be terminal. The doing nothing at all choice also had the risk of death, but with less chance for recovery.
By this time my son Tim had arrived at the Auburn emergency room, so at least I wasn't faced with this decision alone. Together we concluded that we would rather try the procedure than not ... so off we went to Highline.
Just before the procedure, which they said could take from one half hour to four hours, I met Dr Wiess. He's an intense, fast-talking professional who gives the impression that, even though he's talking about high-risk stuff, everything will be OK. I asked him if I could see Bettie before he began. He said no, that hospital procedure forbade that. He then, without a word, took me by the hand and led me to her side in the procedure room. He muttered something like "this didn't happen" and left me there with her for a moment.
I can't describe that moment without seriously soiling my keyboard with tears and drool, but it was intense.
In the waiting area I was joined by Tim and his wife Veronica, my daughter Kim and her husband Mike, Art Palecek, our associate pastor, and his wife, Maureen. Later, our previous associate pastor Steve Ambros joined us for an hour or so. We prayed and talked and ate lunch and waited and waited. "Wait" is not the right word for this kind of wait. "Wait" is something you do in check-out lines and at traffic lights. When the life of your beloved hangs in the balance it is something else. I'll think about that another time.
After about three hours, Dr. Weiss came in. He said he had good news and bad news. First the bad: because of the unusual amount of twists and turns in Bettie's veins, he was not able to get the catheter close enough to grab the clot nor inject it with a dissolving agent. It was close he said, very close. However the good news was that there appears to be some blood flowing around the clot so the damage is not as severe as it could easily have been. That bodes well for future recovery.
Bettie spent the rest of that day and night in intensive care. The gaggle of family and friends eventually thinned until I was left alone with her. Next to our wedding night, perhaps the most memorable of our nights together.
I talked to her, not knowing if she could understand. At one point she said "I'm too hot." I took that as a good sign, putting three words together. Another time she began saying the word "take". She must have said it twenty times or more. Finally she got out "care". She wanted me to "take care" of her. God, I love this woman.
(A little personal background here may help: I am employed at iShip, Inc. a subsidiary of UPS, the shipping company. I work in their offices every Tuesday, Wednesday, and Thursday; I work from home on Fridays, using the company intranet. Being something of an insomniac, I awaken one or more times throughout the night. When it's a work night, I just get up and go into the office. So I'm often there in the wee hours of the morning, but seldom past noon. It's kind of crazy, but it works for me, and the wonderful people I work with are very accommodating. My usual habit on work days has been to give Bettie a brief check-in call between 8 and 9 a.m.)
I first called Bettie at about 8:40 that morning. I got no answer, but that occasionally happens if she is in the bathroom or something. I called again just a few minutes after nine. She answered, in a normal sounding voice, with "You're late". Not saying "Hello" was a little unusual, but maybe everything was normal to that point.
After those first two words, our world changed.
What I heard sounded like she was crying at first. (That has happened before ... she called me at work years ago to give me the news that my grandmother had died. When I answered that call she couldn't speak for a minute or so, so I thought it was something like that.) I gave her a few moments to compose herself, but it didn't happen. It sounded like she was muttering or something.
We knew she was at risk for stroke, due to a heart condition called atrial fibrillation that she had been dealing with for about six months, but realizing that I was actually hearing one happen took a minute or so to sink in. I finally said something like: "Honey, I'm going to call 911 ... Do you want me to call 911?"
I made out "911" in her garbled response, but that was all. My head was spinning, this was the real thing!
I hung up and punched in 911. Since I was at iShip's Factoria office, I got the Bellevue police response center but they quickly connected me to Auburn and I gave them the required details. Paramedics were there in minutes and found Bettie in bed and mostly unresponsive.
I locked up my computer, told a co-worker: "I'm leaving; I think my wife may have had a stroke", and took off for home. I'm not careful to always have my cell phone with me and have it on, but that day I did.
Ten minutes into the trip, my son Tim called me and put one of the emergency team guys on the phone. (Tim, his wife Veronica, and their two children live with us. Being self employed, he might leave for work anytime between 7 a.m. and 10. This day, he happened to still be home.) The emergency team guy told me they were taking her to Auburn Regional Medical Center, so that was where I headed.
On arrival I provided the registration desk some quick information, then I found Bettie in ER room #1. I suppose the initial reaction one has in a situation like that is akin to what you might feel when the sheet is pulled back in the morgue and you realize that, yes it's her.
The doctor was busy determining the extent of her condition, asking her all kinds of questions, poking, prodding, touching, all with speed and precision. He did his best to fill me in on what he was finding as he proceeded.
Though her eyes were about half open, there did not appear to be much going on in there. It was then that he first used the word "Stroke". Though not a surprise, given her history of atrial fibrillation, hearing that word came down heavy, like hearing a jury foreman saying, "Your honor, we find the defendant guilty of all charges."
They soon whisked her off for a CAT scan of her head to actually see what was going on.
Upon return, the doctor detailed it for me: "She has a very large clot on the left side of her brain, in the area where speech is centered. It is very serious and there are some very high risk issues you are going to have to decide right now." They wheeled in a cart with a flat-screen TV monitor and a camera on it. I was quickly introduced via video to Dr Aaron Heide, a stroke specialist who handles cases like Bettie's for a number of area hospitals. He explained that we had two high risk scenarios here: doing nothing, and doing something.
The something he proposed was to transport her to Highline Medical Center, in Burien, where another specialist, Dr. Wiess, could attempt to break up and/or remove the clot via a catheter inserted into her groin and directed all the way up to her brain using some very new, very high-tech imaging. While it offered the prospect of giving her a greater chance for some recovery than doing nothing, it also could create bleeding and ultimately be terminal. The doing nothing at all choice also had the risk of death, but with less chance for recovery.
By this time my son Tim had arrived at the Auburn emergency room, so at least I wasn't faced with this decision alone. Together we concluded that we would rather try the procedure than not ... so off we went to Highline.
Just before the procedure, which they said could take from one half hour to four hours, I met Dr Wiess. He's an intense, fast-talking professional who gives the impression that, even though he's talking about high-risk stuff, everything will be OK. I asked him if I could see Bettie before he began. He said no, that hospital procedure forbade that. He then, without a word, took me by the hand and led me to her side in the procedure room. He muttered something like "this didn't happen" and left me there with her for a moment.
I can't describe that moment without seriously soiling my keyboard with tears and drool, but it was intense.
In the waiting area I was joined by Tim and his wife Veronica, my daughter Kim and her husband Mike, Art Palecek, our associate pastor, and his wife, Maureen. Later, our previous associate pastor Steve Ambros joined us for an hour or so. We prayed and talked and ate lunch and waited and waited. "Wait" is not the right word for this kind of wait. "Wait" is something you do in check-out lines and at traffic lights. When the life of your beloved hangs in the balance it is something else. I'll think about that another time.
After about three hours, Dr. Weiss came in. He said he had good news and bad news. First the bad: because of the unusual amount of twists and turns in Bettie's veins, he was not able to get the catheter close enough to grab the clot nor inject it with a dissolving agent. It was close he said, very close. However the good news was that there appears to be some blood flowing around the clot so the damage is not as severe as it could easily have been. That bodes well for future recovery.
Bettie spent the rest of that day and night in intensive care. The gaggle of family and friends eventually thinned until I was left alone with her. Next to our wedding night, perhaps the most memorable of our nights together.
I talked to her, not knowing if she could understand. At one point she said "I'm too hot." I took that as a good sign, putting three words together. Another time she began saying the word "take". She must have said it twenty times or more. Finally she got out "care". She wanted me to "take care" of her. God, I love this woman.
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