Post 73 - Finally!

After weeks of waiting, I finally have taken possession of a sleep machine; specifically called a BiPA autoSV Advanced System One by Philips or, as it’s more commonly known, a new version of a BiPAP machine which blows a steady stream of air into the sleeping victim, er, I mean patient. The delay, I have since learned was due to the senior doctor taking an abrupt leave of absence, the closing of one of two offices, the re-organization of the remaining three doctors into a new group, and the failure of my doctor to completely fill out my correct machine orders. And the Holidays. Other than that, no problem!

 

Wait – there is one slight problem. Do they really expect you to sleep soundly with both a chinstrap to keep your mouth closed and a bunch of straps to hold the mask in place? Looks like I’ll need another visit from the talkative technician to show me how to make this thing work as intended.

Post 72 - The Results Are In.

My sleep study follow-up was yesterday and even though I have been told by my sleep partner that I probably have sleep apnea, I didn't expect the doctor to say "severe OSA" which stands for Obstructive Sleep Apnea. He proceeded to add Central Apnea, Sleep related Hypoxia and Restless Legs Syndrome to the diagnosis.

I won't bore you with the numbers but let me assure you that I am not thrilled. But maybe it is best to know so that we can now deal with a c-pap type machine at night..

Central Apnea is the main concern because breathing is disrupted regularly during sleep because of the way the brain functions. It is not that you cannot breathe (which is true in obstructive sleep apnea); rather, you do not try to breathe at all. The brain does not tell your muscles to breathe. This type of sleep apnea is usually associated with neurological diseases, such as Parkinson's disease, Alzheimer's disease, and  ALS ( Lou Gehrig's disease) and as we can see, MSA.

In very simplistic terms, Hypoxia is not enough oxygen getting to the brain causing confusion. Having only 84 % is cause for concern!

Our next step is an overnighter on November 28th.  This time the technician will be trying out several types of machines and calibrating them to my exact need all while I am suppose to sleep.

Wish me luck.  There definitely will be more to come.

Post 71 - The End Of A Busy Week

As mentioned in Blog entry #68, this week was chock-full of doctor visits, catheter changes, and assorted tests.  Everything was going along predictably until Wednesday night when the Sleep Study was held.

First, a little bit of history; the Sleep Study was ordered by my latest physician, a pulmonologist, whose technician performed what turned-out to be a normal Lung Function test a few days earlier. 

Next, the only test remaining which might determine the course of treatment for those nights when I act out or make strange noises is the innocent-sounding Sleep Study.

I appeared exactly as directed at 8:30 PM at the testing site, which happened to be at the rear of the doctor’s exam complex. The room looked reasonably comfortable.  Fran, my wife, caretaker and chauffer, accompanied me as well, in case my suprapubic catheter, or me, in general, needed attention. She got to sleep in a recliner while I, the subject, slept, or tried to sleep in a Murphy Bed-like set up.

We were met by a helpful technician who immediately hooked me up to twenty-four EKG-like sensors from the bottom of my legs to the top of my head and then tells me to “go to sleep.” It reminded me of a trip to the dentist where your mouth gets stuffed with about ten tubes and the dentist wants to carry on a conversation.  How does he expect me to fall asleep all wired up like this?

Both of us must have eventually fallen asleep because the technician sticks his head in the door to announce its six o’clock and time to get up.  He then proceeds to remove the twenty-four sensors, leaving behind some adhesive as a souvenir of my visit.

          It was too early for our regular breakfast spot, so we found someplace open instead.  Turns out they make pancakes the size of Frisbees.  What a strange experience!  Now I‘ll have to wait until Nov 20^th for the results.

 

Post 70 - Isn't This A Pain In The #%&*

First, let me apologize to the many nice people who have left messages or comments in the past few weeks.  Please do not think I have ignored you. Very much to the contrary, I open and read all comments.  Just when I had it figured out, Google went and changed a few things on their blog page (for my convenience).  I think I finally have these new changes figured out but I can always be reached at ssteidel@comcast.net

Now for the matter at hand; aside from the usual aches and pains of growing older (I’m speaking about arthritis which flares up every morning but can usually be massaged or medicated away by noon), I feel fortunate in never having to bore my readers with comments about MSA related pain. Fortunate because until about three weeks ago there was no pain associated with my symptoms.  Plenty of other things were wrong, like loss of balance or speech – but no pain.  I used to be able to say that – but no longer.

A few weeks ago, I developed an annoying pain on the inside of my knees, mostly the

right one but occasionally the left one as well.  The pain is at it’s worse when I am

transferring from one chair to another.  On those occasions my hips decide to join in and

hurt as well.  I am also experiencing these pains and sensations when in bed.

I only hope it doesn’t progress any further.

Post 69 – It’s Gonna Be a Busy Couple of Weeks

Most weeks go by with nothing going on. Time to sit around and read or to catch up on messages from good friends who genuinely care about my condition.  These coming weeks, however, promise to be anything but routine and quiet.

First, on Tuesday, comes a regular quarterly visit with my GP. The biggest change since my last visit involves pain in my hips & knees when any pressure is applied (like changing chairs or getting into or out of bed).  I’ll also tell him that these “pain and stiffness” episodes seem to coincide with my taking the anti-infection drug Cipro every time my supra-pubic catheter is changed by the visiting nurse.   I will also mention an overabundance of saliva when not called for or expected.

 And I’ll tell him about my upcoming visit to a pulmonologist specializing in sleep disorders to learn the results of my recent pulmonary function test to determine why I act out during sleep and to assess my laryngeal stridor.  After this battery of tests I should have more information.

** This blog post was typed by my daughter Debra who is visiting.

Post 68 - My Turn

I guess it's my turn to write. 

Steve is ok.  It's just that it takes him so long to type that he gives up.  He has emailed several friends this past week. Short notes that took him the better part of the day.

We have had several new developments.
We finally were able to get a hospital bed.  Medicare is strict especially when you have an honest doctor.  The bed is not for the convenience of the caregiver but for the need of the patient. 

The other development is what qualifies him to get the bed. 
In the later stages of MSA a problem develops with breathing while sleeping. It is called Nocturnal Laryngeal Stridor.

What is happening is that his larynx cannot close and open correctly
(partial paralysis) and the air gets trapped going in with a wheezing sound and then bursts out with a graspy sound. Seems that it is a common occurrence with MSA.  Soooo, nighttime is not fun.  The second I hear him start making an odd noise I wake him up.  This happens about 5 times a night. Oddly, there are some nights that it doesn't happen at all.

We are waiting for a scheduling of a sleep study to be done at the hospital.  The doctor prefers this than a sleep clinic because of Steve's medical issues.

His supra pubic catheter is working out very well.  A nurse comes to change it every 3 weeks rather than 4 because for some reason his bladder makes tons of grit that clogs the tube.

Bowel issues: Let's not go there.  I give him prunes and juice, miralax, docolax,  liters of water, fruits and veggies, and still he has a hard time.  His brain may send the message but his body is not receiving it.

It's kinda like when I talk and he doesn't listen.  Chuckle!

Post 67 – What Next?

By now you’re probably sick of hearing about the trials and tribulations I’ve experienced while adjusting to my supra-pubic catheter which was surgically implanted on May 10^th  Just one more cautionary tale – one about something I didn’t see coming!

 Each week I have a visiting nurse stop by to check my vital signs and inspect the operation site.  Her job, on a monthly basis, is to remove the old catheter and replace it with a new one (a simple task that takes about 10 minutes).   The first time she made the change was about 60 days after the operation.  Actually, the very first time the catheter was changed was by the urologist’s nurse in the doctor’s office around 30 days after the procedure.   So, after 2 different nurses had no problem changing the catheter, I assumed every change would take place without a problem.  Little did I know!

Now it’s early on a Monday morning and the visiting nurse isn’t due until Friday to change the catheter.  I‘ve awakened early each of the prior 3 nights with a feeling of fullness (almost pain) in my bladder area.  On each of those 3 nights I could only get relief when I moved to a recliner and changed my position.

My wife, Fran, called the visiting nurse service later that morning and explained

my predicament.  Shortly afterward, the nurse called and confirmed she would

come over as soon as possible.  When the nurse arrived she changed the catheter and I immediately got relief.  It turned out that the old catheter was full of a grit- like substance that clogged the diameter of the tube therefore not allowing the urine to flow.

Hopefully, each month will not bring a new adventure of this type. 

I will keep you informed.