March 15, 2010

Dr. House Diagnosis is an Odd Coincidence

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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No, I have not gone over the edge, relying on Dr. House for diagnostic input.  First of all, the character, Dr. House, is extremely annoying, especially to those of us who have encountered arrogant doctors.  Gratefully, other than one Hospitalist, we have been spared that problem in recent years.

Mary Ann loves watching the series, “House.”  We have seen the episodes so many times it is hard to stay in the room when they are on.  There was one yesterday that was far too close to home.  It was one that I don’t remember seeing before.  A character named Amber has been in a bus accident and ultimately dies at the end of the program.  She has died of Amantadine poisoning.

Amantadine is the drug we discontinued a couple of weeks ago and restarted about a week ago.  One reason I was reluctant to restart the Amantidine was a series of warnings to doctors about it in the info sheet that comes with it.  Amantidine is retained in the plasma (I believe) especially if kidney function is compromised.  Mary Ann’s kidney function is significantly reduced due to all the years of high blood pressure.  One warning to the doctor’s was that in elderly patients it is metabolized differently and needs to be reduced so as not to build up.  Mary Ann qualifies since her Body Mass Index has declined so much.

In the program, Amber died of Amantidine poisoning because her kidneys had been damaged in the accident.  Her body could not flush it out.  She was taking it for the flu.  The brand name of Amantidine is Symmetrel, a drug often prescribed to people with the flu to reduce its impact.

No, I am not concerned.  She has been taking it for years.  Yes, when I fax the Neurologist to get in Mary Ann’s chart that she has resumed the Amantidine, I will ask about the warnings given to doctors about it.  No, I will not start the fax with the words, “Dr. House says….”  I will in that fax explain that Mary Ann’s hands swelled and began to display contracturing.  I will explain that she ceased to be able to help with transfers, pretty much losing the abililty to stand.  I will mention that the daytime sleeping doubled in the number of days in a row that she slept.  All that began 36-48 hours after stopping the Amantidine.  Now that she has been on Amantidine for a week, the problems have diminished or returned to the level that preceded stopping the med.

The bad news is that so far the Amantidine does not seem to be doing again the very thing Mary Ann was taking it to do.  Those wavy movements that are apparent when Michael J. Fox is on television are called dyskinesias or dyskinetic movements.  They are caused by years of taking the basic med (brand name, Sinamet) that gives Parkinson’s patients the ability to move (and if a person has them, it reduces the tremors – fast shaking movements usually of a hand).

The Amantidine reduces the intensity of the dyskinesias.  They can be terrible.  There have been times in years past, when Mary Ann almost could not stay in a chair, arms and legs and body were twisting and turning so much.  More than once she has almost flown off the gurney in an ambulance or the Emergency Room.  She takes much less Sinamet now, and with the Amantidine those movements have been subdued.

Guess what?  Resuming the Amantadine has not brought back control of the dyskinesias.  Gratefully, she is not flying out of bed, but on occasion in the last week or so, I have had to click the seat belt on her transfer chair or wheel chair to keep her from slipping out.  It is an interesting challenge to try to help her put her jeans on when her legs are crossed and twisted, moving constantly.  Her muscles are very strong from years of those movements.  I have observed that trying to help her get dressed when the dyskinetic movements are going at full intensity is like trying to wrestle a Python.  No I have never wrestled a Python.

Dyskinesias are completely involuntary.  She cannot stop them.  Stess makes them worse, but just trying to relax will not make them go away.  I am not concerned about this development.  It is nothing new to us.  We just got spoiled when they were under better control.  Now that I realize what other problems the Amantidine seems to be helping control, I will not stop it just because it isn’t helping with the dyskinesias.

Two mornings ago Mary Ann fainted a number of times.  I tried to take her blood pressure, but when she is dyskinetic, it is just about impossible to take her BP.  The movements make noise in the stethoscope that confuses listening for the heart beat.  She fainted multiple times yesterday also.  I heard nothing through the stethoscope, no heartbeat at all, but since she was alive and well, there was, of course no panic.  She was fainting so much I had to lay her down in bed.  She napped for about three and a half hours.  When I did get her blood pressure after napping, it was 165 over 100.  It had been that high the day before when finally I could get it.

Following two mornings of so much fainting, I had decided to resume the Midodrine to raise her BP.  After getting the 165/100 later in both days, it seemed again to make no sense to be raising it higher.

Maybe if we need for me to get a part time job, I could help out at a Pharmacy.  That degree should be coming in the mail right after the MD, with specialties in Neurology and Cardiology, arrives.

On another note, instead of my usual visit to the lake this morning while Volunteer Elaine was with Mary Ann, I headed to church for the Baptism of Oliver, Grandchild to Don and Edie, good friends who have brought us food so often — Edie leads our Spiritual Formation Group.  Since the timing of the Sunday morning Volunteers allows them to attend the 8am Service, they arrive well after the 9:30am service has begin.  As a result I came in quietly in the middle of the service.

For the first time, the prayers included the public announcement that Mary Ann is now being served by Hospice.  At that moment, the fact that I was in church alone struck me.  I didn’t like it!  Afterward, I ended up at Don and Edie’s for a celebration with food.  I would normally have gone to such an event with Mary Ann.  I didn’t like being alone!

I have heard from those who have lost a spouse just how difficult it is to go places alone, places that the two had always gone to together.  Today, that awareness took on a new dimension.  On the positive side of that new level of awareness, I celebrate even more being together with Mary Ann all day long every day.  My gratitude for having retired when I did rather than waiting another year is even deeper.  Whether she is asleep or awake, lucid or not, I am glad she is here.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

November 20, 2009

Update and Gifts of Daily Bread

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Noma called this morning and asked if she and Herb could bring over a couple of bottles of Herb’s home made wine.  For a number of years, Herb has provided home made wine for the Thanksgiving Communion services at the congregation from which I retired.  He makes very good tasting wine.  Herb and Noma also brought a little meatloaf that Noma had made, and some home made peanut brittle.

The week started with Jan bringing with her a very tasty Mexican chicken pie on Sunday when she came to spend time with Mary Ann.  Then early in the week Mary brought by a large container of soup made using the Olive Garden recipe for their Pasta E Fagioli.  Jeanne came over for a part of the day today and brought a Quiche from Copper Oven, along with a piece of pie from there for each of us.  Mary Ann’s pie was one of her absolute favorites, Lemon Meringue.  Tomorrow, Mary is going to bring us some pork loin and dressing.

So much of the time Mary Ann is forced to eat my culinary creations, which I just decided to dub, Pastor Pete’s Pottage.  Mercifully, the pottage is interspersed with Glory Day’s pizza slices, Bobo’s burgers, Perkin’s pancakes and a variety of take out foods.  This week Mary Ann is eating like a Queen.  I, of course, am not wanting for good food either, since she needs help in consuming it all.

When food is brought to us, as it has been this week, very often it is brought with the instructions that it can be put in the freezer (or some portion of it) to be enjoyed at some time in the near future.

One of the best things about the food this week is that it is coming at a time when I have been concerned about getting more calories in so that she can stop losing weight.  Convincing her to let me feed her is not always an easy task, but she has let me do so here at home more often.  When I help her, she eats much more.  She has been eating very well with all the good food that has been appearing at our home. We weighed her this afternoon and found that she had gained back about a pound, after having dropped five pounds.

At lunch today, Mary Ann age a full quarter of the Quiche, followed by that very large piece of Lemon Meringue pie.  With my help feeding her, she ate every crumb of both.  She had eaten a good breakfast, the usual yogurt, juice and a large bowl of Shredded Wheat Mini-bites.

She was very tired today.  Yesterday, she got up fairly early and then went back to bed for a relatively short nap.  She ate well and was up the rest of the day.  Today, after the good breakfast, she really shut down and needed a nap.  Shortly after Herb and Noma came by followed by Jeanne’s arrival, Mary Ann got up and was up the rest of the day.

There was one episode that moved me to go ahead and increase the Midodrine that raises her blood pressure.  Between the Quiche and the piece of pie, as she was sitting in the chair at the table, she just went out, had a fainting spell.  I managed to take her blood pressure after she came out of it.  Her BP was 100/60.  That is pretty low for just sitting in a chair.  It sometimes drops lower than that, much lower, when she stands up.  (One time during a tilt table test at the hospital, it dropped to 50/30, when she was moved from lying down to 70% of the way to standing upright.)  When she is lying down it is often as high as 180 or more, over 105 or more.

I have changed out the pills in her daily pill containers so that the dose of Midodrine will return to the pre-hospital stay level.  I have also printed from the Internet an article by the National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health.  The article describes a study of a drug named pyridostigmine (brand name, Mestinon), which seems to help the problem of Orthostatic Hypotension (low blood pressure when standing) without raising the patient’s blood pressure when lying down.  The drug’s intended use is to treat myasthenia gravis.  This is an off-label use of the drug.  The study concluded that a low dose of Midodrine combined with therapeutic dose of Mestinon was able to control the Orhostatic Hypotension in most of the subjects.

I will fax or mail or take the article to our Cardiologist to see what he thinks of the idea of trying this new approach.  Our Neurologist, a nationally known authority on the treatment of Parkinson’s, had suggested the option of using Mestinon when the problem of fainting got so much worse last summer.  The goal, of course, is to gain a manageable quality of life without raising her BP to a long term harmful level.

At the moment, Mary Ann seems to be sleeping soundly.  We will hope for a good night.  The weather is supposed to be great tomorrow.  Maybe we can get out of the house for a while.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

November 14, 2009

Fainting Returns!

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Twice today Mary Ann fainted.  She has not done so in many weeks.  The fainting is due to a sudden drop in blood pressure, referred to as Orthostatic Hypotension.  It is another of the systems run by her compromised Parasympathetic Autonomic Nervous System.  That system runs the smooth muscles, such as those that create the peristaltic movement that keeps everything moving through the alimentary canal (esophagus, stomach, intestines, colon).  It also runs the smooth muscles that cause our arteries to constrict when we stand up, raising our blood pressure to compensate for the pull of gravity.

That was a lot of technical language that simply means that people with Mary Ann’s version of Parkinson’s and Dementia are often constipated and often faint after getting up from a sitting or lying position.  In both cases today, Mary Ann fainted when on the toilet stool, after trying to get up.  Having watched this at close range for so many years, it was clear to me that both syncopal episodes (medical term for fainting is syncope) happened when a dose of her generic Sinamet kicked in.  When it kicks in her body starts involuntary wavy motions called Dyskinesias.  Sinamet (Carbidopa-Levadopa) is the main medication that treats Parkinson’s.  It is the same medication that has been used for decades.  Most of the newer meds just help the Sinamet do its job better.

During the hospital stay, I suggested lowering her dosage in half of the medicine (Midodrine) that raises her blood pressure to keep her from fainting.  Last summer we doubled the dosage when the fainting got out of hand and was reducing dramatically our quality of life. That medication and the higher BP slowly damages the heart, reducing its flexibility.  Her heart is enlarging, stiffening, her kidneys are being damaged.  If we eliminate the Midodrine, it might add a little time, but the time would be of little quality.  The goal of my suggestion of lowering the dosage is to find a middle ground that gives us the best we can get of both longevity and quality.

I am not yet ready to raise the dosage of Midodrine.  If the fainting comes only when the Sinamet kicks in, I think we can manage the problem.  If the fainting increases to the level it was last summer (multiple protracted fainting spells, sometimes even just when sitting in her chair) we will need to increase the Midodrine back to the full dosage.  We will do what is necessary when it becomes necessary.  Gratefully, the Cardiologist and Neurologist understand the problem and have given Mary Ann and I the freedom to adjust the two meds (Sinamet and Midodrine) within a prescribed range as we determine appropriate.  I am grateful for the latitude in dosing, and I also feel the weight of that responsibility.

The day continues: Mary Ann slept until about 2pm.  I got her some lunch.  She did reasonably well at feeding herself.  She still is not eating enough.  I convinced her to let me help her with some cake after lunch.  She kept putting the fork to her cheek instead of to her mouth.  She was resisting my help, but eventually I was able to get most of it in her mouth  She managed a snack of ice cream later.

We got to the grocery store!  I was hoping we could get it done.  Since she is in the wheel chair, mobility is not an issue when going to the grocery.  I push her with one hand and pull the grocery cart behind with the other.  It is a little tough on my wrists, especially when she drops her feet to the floor and I am pushing against rubber soles on a tile floor.  Years ago, she used one of the motorized carts.  We gave that up.  There were too many displays put at risk by a driver with spatial issues.

We brought home Sesame Chicken from the Chinese counter in the store, so supper went pretty well.  She went to bed at about 7pm and has been sleeping pretty soundly since.  The first couple of hours after she goes to bed are usually pretty good. I will continue this post tomorrow with a report on how the night went (way more information than any who read this blog actually want or need).

Next day (Friday):  The night wasn’t too bad, but it was another early morning with multiple trips to the commode in the wee hours of the morning and finally up before 7pm.

She ate a good breakfast with my help on the bowl of cereal.  After a while in her chair she wanted to get dressed.  Immediately after getting dressed, she got back in bed for a nap.  That was about two and a half hours ago.  She did get up once for a trip to the bathroom.

The issue of fainting continues to be a concern.  She said that she has been dizzy the last couple of days.  That is usually from the low BP.  I tried to take her blood pressure while she was lying in bed this morning, but it didn’t register on the electronic monitor.  That usually means it is too high for it to measure.  BP is usually highest when lying down, since the heart is not pumping against gravity.

While she hasn’t actually fainted today, she came close to it once when I was trying to get her to the bathroom.  She also has seemed to be dizzy at least a couple more times.  I suspect that the switch to the higher dose of Midodrine will be needed.  I am giving it another day to be sure.

The day continues:  After getting up from her nap, I discovered something mightily irritating.  We had to start using new disposable underwear today.  Kroger’s generic has worked very well for us.  They have just discontinued the combination male/female one for new gender specific ones.  The same size and weight as we used before, but in the new female version managed to leak.  It happened twice.  All her jeans had to be washed.

I can only conclude that someone in the Kroger braintrust decided that it would be better for sales if they marketed gender specific disposables.  That would be fine if they had bothered to make them in a way that actually accomplished their purpose.  To those of us who use them, it is no small inconvenience.  The small amount it took to leak the two times it happened today suggest that a long nap or a long time between trips to the commode during the night would provide enough leakage to demand changing the bedding and washing the linens, as well as whatever she was wearing.

I took them back to the store, got my money back and bought the Depend’s brand in hopes that they will work better.  Even though they also are gender specific, the appear to be constructed in a way more like the generic male/female ones we were using.  The Depend’s brand, of course are $12 and change versus the $9 and change price for the generics.  We buy three or four packages every time we go to the store.  There goes the grocery budget.  We will soon determine if the Depend’s are adequate to the task.

The good news is that I found part of a package of the old generic ones in the bathroom closet.  Hopefully that will get us through until tomorrow.  I change the disposables often to protect against urinary tract infections.

Mary Ann was up for a while this afternoon, after her long nap.  She ate a good lunch, lots of left over Sesame Chicken and a huge piece of cake with ice cream.  We were able to run a number of errands with her in the car while I did the errands.  She is now down for her third nap.  It didn’t begin until almost 5pm.  It is now almost 7:30pm.  She has had no supper.  I don’t think there is a chance there will be much sleeping tonight.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

October 16, 2009

Quality of Life Is a Prime Consideration

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Her head is hanging over the side of the transfer chair resting on the table next to it.  I suggested that she go to bed, but she insisted on staying there for another half hour.  That half hour will be up in a few minutes.  I wlll take a break and get her into bed in a moment.

After a restless beginning last night, sleep finally came and stuck around.  There were only a few commode trips after she finally settled.  She chose to sleep in until about 9:45am.  That rest seemed to help her alertness and responsiveness.  She has often put her head down on the table today.  I think the restless nights and early mornings have finally caught up with her.

I am heading off to get her to bed now.

She is in bed and already appears to be asleep.  It is too early to tell, but I certainly hope she sleeps well.  She needs the rest.

When the phone rang this morning it was the call I was expecting from the Cardiologist’s Nurse.  She had in hand the reports from the echocardiogram, the carotid sonogram and her blood work.

The call was another encounter with realities that are not visible.  Probably the most serious concern is the increase in the severity of her Pulmonary Hypertension.  That is the disease that took the lives of those who had taken the diet medication called Phen-Fen (sometimes designated in reverse, Fen-Phen).  Pulmonary Hypertension has been a part of the array of Mary Ann’s diseases for the last two to three years.  It is a funcion of the high blood pressure, which is, of course, raised by the Midodrine.  Any treatment would involve medications to reduce her blood pressure, bringing on the return and probably increasing the frequency of the fainting spells.

As last summer’s posts reveal, the fainting spells lower dramatically our ability to function.  Gratefully, both Mary Ann’s Cardiologist and her Neurologist understand the dilemma well and respect our decisions on how to proceed.

As I mentioned a number of posts back when reflecting on the report we had received on her blood work, her kidney function also has declined in the last six months.  She is now only one point away from Stage 4 (of 5 stages) of Chronic Kidney Disease.  A couple of years ago, her Nephrologist agreed that any treatment would lower her blood pressure, creating the same problem as the treatment for the Pulmonary Hypertension.

The Cardiologist’s Nurse said that the lesion in her left Carotid is still not past the 50% mark, which is the point at which the need for surgery comes into play.  She mentioned that there is a build up on her right side also.  I don’t remember whether that has been mentioned before.

The Nurse confirmed that there is leakage in more than one heart valve, including the Mitrovalve.  That regurgitation seems to have worsened some, but the language of the tests was not clear on that issue.  At our last appointment with the Cardiologist six months ago, the leakage was not bad enough for the surgery option to be up for consideration. There are also enlarged chambers in the heart, especially the left Atrium.  That problem has worsened.

All of the above has been factored into our consciousness at some point already in the past.  Hearing the results of the tests bring it all to the surface.  My questions always probe the rate of change.  This set of test results seem to indicate a more pronounced decline that in the past.

I plan to fax the Neurologist to probe further any treatment options for the fainting that might not raise the blood pressure.  At one point he mentioned an off label use of a drug called Mestinon.  The Cardiologist was unfamiliar with it and unwilling to prescribe it at that point.  I may try to get them to talk with one another about that or other options.  Getting doctors to talk with one another is not always an easy thing to accomplish.  They are both good doctors — maybe it can happen.

On the matter of the quality of life and the health of this Caregiver, the power of the Alien possession is now getting scary.  This is the Alien from planet Pedometer Prime who, as in the movie the Body Snatchers, is trying to change me into some sort of walking, exercising pawn.  This will frighten you.  Mary Ann and I made an afternoon run to the store for something.  Afterward, I offered to get some ice cream.  We went to Sheridan’s Frozen Custard for a what they call a concrete.  The one of choice is made with chocolate frozen custard with pecans mixed in.

Here is the terrifying development.  As we approached Sheridan’s, the Alien simply took possession and overpowered my will to eat ice cream.  Those of you who know me well (or have been following this blog) understand just how horrible this was.  I got Mary Ann a concrete as described.  Then the Alien took over the car and drove it to Cedarcrest where I walked the path while Mary Ann ate her treat.  It is a miracle we made it safely.  I certainly had no control over that car or, at the very least, we would have veered left at 17th and headed for Maggie Moo’s.

If that is not horrifying enough, the Alien had already forced me out to walk in the neighborhood early (for me) this morning while Mary Ann slept.  Keep alert, you never know when one of those Aliens will try to take you over too!!

By the way, Mary Ann actually said she liked what I made for supper tonight.  There were a couple of pork chops in the fridge recently thawed and needing to be cooked.  We had some red potatoes, onions and fresh broccoli in the there also.  I cut up the potatoes and veggies and put them on a foil covered cooking sheet (I hate cleaning pans).  We had some Hendrickson’s dressing and marinade that we have used in the past and liked.  I tossed the veggies in it.  Then to make the food preparation easier, I put the pork chops in a baking dish and covered them with the same marinade.  Both dishes went in the oven (375) for almost an hour.  I really liked the meal, but then I like everything.  Mary Ann only ate the meat, but volunteered at one point that it was good.  There is such a feeling of victory when something has passed muster with those finicky taste buds!

Just in case the Alien attacks again in the morning, I had better settle in for the night and get some rest.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

July 23, 2009

Living on the Edge

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There has been almost no fainting today, but at what price? 

It appears that the increase in Midodrine, a medication that raises the baseline blood pressure, has moved Mary Ann back over the threshold to the ability to stand up and walk without fainting due to a sudden drop in her blood pressure. 

Earlier today, our Cardiologist had Mary Ann come in to have a Holter Monitor hooked up to a number of leads that had been put on her.   If I understand correctly, the monitor is a miniature EKG recorder (Electrocardiogram).  The pattern of Mary Ann’s heart activity is recorded for that twenty-four hours.  We have a log on which we are to record the time of and describe any symptoms, in her case any fainting episodes (Syncope).  The Cardiologist will be looking for any irregularities in her heart beat during the symptoms.  Mary Ann has had this test two other times in the last three years.  If I remember correctly what the Doctor said, there were no irregularities those two times. 

One of the results of the timing of the increase in the dosage of the medicine is that it is working well enough to all but remove the episodes that are to be monitored. 

Here is why the title of this post is “Living on the Edge.”  I asked the Tech today if he would check Mary Ann’s blood pressure since the increased dosage of the Midodrine might be raising it too high.   In fact, I asked if he would first take it while she was lying down.  He did so.  It measured 240/110.  He had a look on his face that was mild shock.  I asked him if he would take it with her sitting up.  He did so.  It measured 248/118.  I was a little surprised since I thought it would lower some.  Then I asked him to take it after she had been standing for a few moments.  He did so.  It measured 140/70. 

The Tech was pretty surprised by the rapid change.  He said that in his twenty year career as an EMT and Clinic Tech, he had never seen anything like it before.  We feel so special!! 

Apparently, Mary Ann’s blood pressure needs to be kept far too high to keep it from going far too low.  When I measured two days ago it was 165/85 when she was sitting down, but when she stood up for a few moments, she fainted and was out cold for many minutes. 

The high blood pressure has weakened her heart and diminished her kidney function significantly.  Gratefully we have much more kidney capacity than we need, so she is not yet in serious danger because of the diminished kidney functioning.  As the Nephrologist said, she is likely to die with that problem, not from it. 

I guess for some, living on the edge makes life exciting.  I am here to say that Mary Ann and I would gladly accept a less exciting life!

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

July 19, 2009

Blood Pressure Controls seem Broken

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She sat on the bed,  fainted, and just slipped off on to the floor.  She had fainted moments before on the toilet stool.  I got her on to the bed, grateful for the physical strength that remains in this small in stature, 66 year old, pot-bellied frame. 

I finally just laid her down on the bed to nap.  It was her second nap of the day.   The third one came early in the evening.  We did manage to get out for pancakes during the mid-afternoon. 

As is obvious to those who read these posts, this story is getting to be an old one.  It is beginning to suggest that the Autonomic Nervous System is just unable to sustain her blood pressure consistently.  The muscles around her arteries just won’t respond as they should, at least as quickly as they should. 

We have increase the medicine that raises the blood pressure, but have to be cautious about that, since years of high blood pressure have already weakened her heart and kidneys.  The Cardiologist will get another call on Monday. 

The Cardiologist will want to know what her blood pressure has been running.  It is no small task to get a read on her blood pressure.  The battery operated blood pressure monitors are pretty much useless when trying to measure Mary Ann’s blood pressure.  More often than not, there is just an error message.  Either her BP is too high and cannot be measured, or the dyskinetic movements create noises in her body that confuse it. 

I have purchased a stethoscope and pressure band to take her blood pressure myself.  I can get the meter pressure high enough, but the variety of sounds have frustrated my ability to get a good reading.  At times I have been able to do it — not today.  Gratefully we have a parish nurse at our congregation.  She cares very much for Mary Ann and will come and help whenever we need her and it is possible for her to come.

I called Parish Nurse Margaret, who came over to take her blood pressure.  As always, she brought flowers from their flower garden and vegetables from their vegetable garden. 

She arived shortly after Mary Ann had taken her mid-day dose of the blood pressure raising medicine.  Sitting in her chair, her BP was 140/70.  Then we walked into the bedroom to test the effect of standing up and walking.  She sat on the bed and Margaret took it again.  Mary Ann was on the verge of a fainting spell.  Her BP was 108/78.  The lower number was higher than I expected, but she said that when the two numbers are too close to together it can cause the fainting.   

Then Mary Ann laid on the bed while her BP was taken.  That is when it is usually highest, since gravity is not pulling the blood to her feet.  I wanted to measure her BP at what would be likely to be its highest point.  Knowing that measurement would help provide the Cardiologist with the information needed to make a good decision on whether or not it would be safe to increase the medicine that raises her BP to keep her from fainting.  Lying down her BP was 142/100. 

After that Mary Ann moved into her transfer chair, and we moved to the living room.  Margaret took her BP two more times as we talked for a while.  Those readings were 140/80 and 150/8o.  By the way throughout the measurements there were no missed heart beats and her heart rate remained steady at 60 beats per minute. 

With all this information the question remains, is her Autonomic Nervous System’s ability to control her blood pressure simply broken, beyond correction, or can meds provide a return to the quality of life we had a few weeks ago.  A question that follows along beside that one is, will my physical strength be adequate to hold her up with one arm while she is fainting as I pull up clothes with the other hand after using the commode.  When will we pass the limits of my ability to handle her physically?

At the moment, I am still one tough cookie.  I can do it now.  That is all I know.  It is all I need to know.   I’ll deal with tomorrow when it arrives.    I have neither the time nor the energy to waste worrying about what it might bring. 

 If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

July 11, 2009

Still Wondering, Temporary or Permanent?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , |
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This morning was the worst morning yet in regard to fainting.  I don’t recall that she fainted during the trips to the commode during the night and in the morning.  When she got up, we made it through pills and her usual yogurt, juice, and today she chose a granola bar from the other regular options. 

Then the fainting began in earnest.  She fainted every time she stood up even to transfer from the dining room chair to the transfer chair.  What was most concerning to me was that after moving her in the transfer chair to her usual spot by the little table to watch television, she fainted.  She was sitting in the chair, had not gotten up and down, but was just sitting and went out cold. 

Orthostatic Hypotension is the blood vessels not constricting when a person stands up, allowing gravity to keep most of the blood in the lower part of the body, slowly reducing the blood flow to the brain.  She was just sitting down.  She had not gotten up. 

Of course, after she came out of that syncope, she insisted on standing up, and fainted every time.  I asked her if she wanted to lay down for a nap, but she was determined not to do that today. 

She decided that she wanted to get dressed.  I rolled her into the bedroom.  When she stood up, she fainted again. When she has fainted, sometimes when she comes around, her eyes shut tightly, her lips purse and she sort of twists her head to the side.  That usually means that she has shut down and can only lie down and nap.  This time I asked her again if she wanted to lie down, expecting either a yes or no answer.  She said no.  I asked if she wanted to get dressed.  She said yes.  She was determined.  I managed to get her transferred to the bed to begin the process of taking off her top to get dressed. 

She fainted again just sitting on the bed.  This time I just arranged her on the bed, covered her with the sheet and she stayed out and slept for a time.  She did not sleep quite as long as on other days, maybe an hour or hour and a half. 

When she woke up, she was better.  While she still fainted, she could stand up longer and did so more in accord with the pattern of previous days.  The rest of the day has continued the pattern of the last couple of weeks.  She was able to function.  As has been so recently, I could not really leave the room to speak of, since she continued to be in pop-up mode.  She could walk eight or ten feet, but then needed to sit down. 

The Cardiologist’s office called this morning to respond to my request about increasing the Midodrine, the medicine that raises her blood pressure to minimize the syncopes due to the Orthostatic Hypotension.  The suggestion was to increase each of the three doses in the day by 50%.  Instead of one pill, one pill, and then a half pill four hours apart, it could be increased to one and a half pills, one and a half pills and one pill four hours apart. 

Normally I would titrate the increase over a few days.  After this morning, I decided to make the full change right away.  The noon and suppertime doses have been increased.  Tomorrow morning that dose will be increased.  My hope is that this will move us back over the threshold to a more manageable pattern.  We live very close to the margins of functionality. 

We should know pretty soon if the change will take us back to the version of normal we were experiencing a couple of weeks ago.  We may have to adapt to a new normal.  We prefer the old normal to this new one that seems to be trying to emerge. 

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.