Friday, December 5, 2008

DH's Thoughts

The mission was to get the line cleared.  And we succeeded.
I must admit, however, I would not be eager to do this particular drill again.

We got it done, thanks to the power of prayer, some planning  and a very resourceful surgeon.  The surgeon, Dr.Sidney Guo, is a young Chinese man, who is also an accomplished violinist.

I liked him instantly; he reminded me of Michael.

Departing from the usual practice,  we did the carotid artery operation without general anesthesia.  This was done primarily so I could signal the surgeon immediately if anything broke loose.

In effect I was serving as another monitoring instrument.  The operation went on for about two hours,  During this entire time I was either conversing with or exchanging signals with the surgeon and his surgical nursing staff  to keep them apprised of the fact that nothing had gone amiss.

The purpose of the operation to clear the carotid artery was to prevent any future TIA's.   A TIA would require discerning the threat and responding within minutes.  The down side of the surgical remedy was the fact that the operation could knock some plaque loose and thereby  precipitate a stroke, disability or death.

I assured the surgeon that although I did not fear death, I was in no rush. In any event we decided to "go for it".  Thanks to our resolve and steadiness, the surgeon's skill and the grace of God, we succeeded with this major operation under local anesthesia.  Rounding out the plan, was  a nap after the operation in the Recovery Room. And after my nap I was ready to go by 5 PM on Wednesday. 
Prayers are always welcome; even now when we are "out of the line of fire" and well along in the recuperation phase.

Dr. Guo came by Thursday morning to cut off the bandages and remove the drain.  The surgical site was drained of about 30 or 40  cc's of  blood during the night.

I walked in to the hospital  at 8AM on Wednesday.  The operation "teed up" at 9:30 AM Wed. and  I walked out at Noon on Thursday.

All that remains now is a half dozen butterflies and some tape over the wound.


Thursday noon I made my escape from the hospital after a 30 hour marathon effort including a very successful operation.
   Was helped by lots of  prayers, which were very effective
   I will be working from home on "light duty"  probably through Monday.
   If you ever need to know how it feels to be awake and alert and conversing with the surgeon during a major operation I can now tell you from first hand experience.
   My left carotid  artery was operated on yesterday morning.  During the two hour operation I was totally awake and "working with" the surgeon. Through his questions to me and my responses and pre-arranged signals back to him and the surgical nurses, he could track "live and in real time" the effects on my brain and thinking ability of his excising, reconnecting and reinforcing a damaged spot in my left carotid artery.
   An interesting experience. 
   A close call.
   And a clear success.
   Deo gratias


Here is a walk through of some recent medical adventures, during which some valuable lessons were learned.

At the overview level the story is as simple as  A, B, C
A.   A Transient Ischemic Attack (TIA) in 2006.
A TIA is a temporary and mild stroke that passes within  a short time: ranges from a few minutes up to a few hours.The TIA does no lasting damage to the brain.  A stroke however does inflict lasting damage up to and including  death.   A TIA is a warning sign that something is amiss.  A TIA may be followed by a stroke, particularly if the TIA prompts no changes.

In 2006 in response to the urging of a friend, I reluctantly went to the Emergency Room about 2.5 hours after a TIA started.  Generally we have about 3 hours to respond to a TIA or stroke.  I wasted 2.5 hours in denial and delay.
In 2006 I made four classic mistakes:
1. not recognizing the TIA,
2. denying it was happening,
3. dismissing it as unimportant and
4. delaying the response of going to the ER to get help.

I did two things right:
1. I was, and still am, lucky
2. I listened to a friend who insisted I should go to the ER and should do so now. She probably saved my life either in 2006 or 2008 or both.

The take away was:
1. I now knew what a TIA was;
2. I had a good set of 2006 base line tests (MRI, Echocardiogram, Carotid Doppler and so on) from the tests the ER people did.
3. I also now knew where to find an ER that could handle strokes.  It was Fair Oaks Hospital; convenient, new and well equipped, with well trained staff who were ready.
B. I  Learned about TIA, strokes, etc. 2006- 2008
Doctors, books, newsletters, hospital literature, Internet and so on
C. A second Transient Ischemic Attack (TIA) on Nov 2, 2008.
Because of the learning that occurred after the 2006 TIA I knew how to detect it, how to preliminarily diagnose it and how to take preventive and remedial action.. Again the TIA came and went with no adverse effects.

But this time I decided to follow through and correct the underlying situation.
Preliminary diagnosis of TIA or stroke is simple.  Here are three tests that are easy to do when we sense a TIA might be underway:

1. Smile looking in a mirror.  If your smile is asymmetric (drooping down on one side) take an aspirin at once and go immediately to an  Emergency Room equipped to handle strokes

2. Raise both arms. If you can not you failed the test and should go immediately to the ER

3. Say a simple sentence like "No ifs ands or buts"  If any part of the sentence is garbled or unclear you should go immediately to the ER

Failing any one of these tests is a signal to get to the Emergency Room.  Within two minutes of sensing the onset of the TIA at about 6:40 AM on that Saturday morning I had done these three tests. Within three minutes I had taken two aspirin and awakened Mary. Within 5 minutes I was on my way to the Fair Oaks ER. Within 15 to  20 minutes from the onset of the TIA I was in the Fair Oaks ER.
The aspirin I took within two minutes knocked down the TIA within the first hour.  That stabilized the situation and we then made contact with the  ER staff.  The ER doctors, nurses and tech staff  repeated all the tests that we had done  in 2006.  Now we had the 2006 baseline and a second 2008 reading.

Again we were lucky and there was no lasting damage.  However, this additional info persuaded me to take corrective action and started me on a round of preparation including seeing my family physician, getting his referrals to specialists, interviewing surgeons, doing tests and finally scheduling the surgery for Dec 3, 2008. The surgery to clear a carotid artery blockage  was successful.  The improvement was immediate and dramatic.  To prepare for and consolidate these gains we are now well underway  on a new regimen of medication,diet and exercise.

Some of this info may be helpful to you and others.  Feel free to share it.
The penalty for either not recognizing a TIA; or not knowing what to do; or not doing it can be severe, up to and including disability and death.
I was lucky in 2006;

...I was ready and lucky in 2008

Was also praying more in 2008; that always helps.

Having been lucky twice, the new game plan is to move proactively to prevent any recurrence.


Thursday, December 4, 2008

What a day!

Yesterday was so long, tiring, hunger-inducing, maddening, yet a blessing!

We got up early to be at the hospital by 7:30 am.  We were a "tad" late, of course, so I dropped DH off at the front door to fend for himself with the paperwork.  I found a parking place right where I always parked when he had his initial incident.  WooHoo. 

This parking lot is very terrible.  They're tearing it up to put in another medical building and a parking garage.  The garage will help eventually but now it makes parking a nightmare.  Some of the staff has to park at my church and be shuttled over.

So, we got to the waiting room, tastefully decorated with monitors showing a tropical fish tank and a gas fireplace.  Very soothing.  Not!

But it wasn't too long before he was called back.  The nurse, Doris, was very nice and we actually had a few laughs and it was kind of pleasant - for me, anyway.

There was a moment of fear when the vampire was putting in the IV.  She wanted to do the right side because his surgery was going to be on the left.  He wanted the right side.  They had quite a discussion about that and I was afraid that DH might change his mind and we'd just go home.  He won, though, with the caution that they might have to change it when he got into surgery.

The pastor from my church came in and we had a nice discussion that ranged from diabetes and the inability to give himself the shots to the Roman Catholic Church to the combat engineers.

The anesthesiologists came in had DH practice with the squeaky toy he'd need to use during surgery to show that they hadn't cut any vital nerves or anything really important.  I don't know where they found it but it was a dog toy that looked like a head with brains spilling out over the top.  EEEWWWWWWWWWW

The surgeon came in just at 9 and reminded us of all the possible things that could go wrong.  All my worst fears.  My minister prayed, I gave DH (not the minister!) a kiss and he was gone.

M and I went back to the waiting room.  He sat with me a while and asked me if I'd eaten and I said no but it was ok.  I didn't usually eat until 2-3 or so.  After a while he left and i went to the bathroom.  While I was in there, my friend showed up and was asking the desk folks where I was and they didn't know (of course).  So, she turned around and there I was.  Amazing.

We went to the cafeteria - good thing! but they only had donuts, bagels, coffee, a little fruit since it was so early.  It was getting close to 11 and the surgeon said it would take about 2 hours so, after glancing quickly at the craft fair in the lobby, we went back to the waiting room.  As promised, the surgeon came out about 11:20 and said that everything went well.  DH did have to have a drain but that was ok.  That the plaque was hemorrhagic. They got all the gunk cleared out and everything was looking fine.  Great!

I called everyone I'd said I'd call to give the good news of a successful surgery.  Yea!

So, my friend and I chatted for awhile, waiting to go see DH.  And chatted.  And waited.  And chatted...

I went to the desk to see why I wasn't going back.  They said he probably didn't have a room yet.

We chatted and waited some more.  2PM Doris came out to talk to another patient.  She said she'd see what was up with DH.  Never saw her again.

More chatting, waiting.  Asked another staff person who said maybe DH was too dizzy (?), he was still in Recovery One. Whatever.

Friend had to leave.  It was about 3. 

About 3:30 I called and left a message that I might not make bell rehearsal that night.  I was tired, hungry, hadn't even seen DH yet, was sure the dog was really messing up the house.

Surgeon came out from another surgery wand asked why I was still there.  I told him and he said that 4 hours in recovery was standard for this surgery.  I said that no one had told me that.  I could have eaten, gone home to walk the dog, not been worrying about what was happening in the back.  That PO'd me just a bit.

There were only 3 of us left in the waiting room and it was getting dark.  Finally, about 5, they told me he was in a room.  I gathered my stuff up and found him on the 5th floor.

He looked good except for the bandage on his neck and the drain. We talked for a while and he wanted a book so I said I'd go home and get it and take the dog out etc.

Amazingly, the dog hadn't done anything in the house at all.  She's only 6 months old and I was amazed at her self-control.  I took her out, gave her a little dinner while I tracked down the book. I had a handful of honey almonds (most nut-ritious!) and a bit of stale coffee.

Back to the kitchen for her, back to the hospital for me.  This time it was very hard finding a parking place - and my gas was getting very low.

DH was in his room chomping down dinner. We went for a little walk around the perimeter of the floor and that was kind of tiring.  Talked for a bit.  He's going to slow down and work less.  We're going to travel more.  I've heard all this before so I nodded and said uh huh when appropriate.  We'll see.

About 8 or he was fading so I left.  I could have turned left out of the hospital and gone to the end of rehearsal but i didn't.  I went right and to the grocery store where I got 2 small bags of chips and a sub - and some real stuff.

I took the puppy out again, gave her dinner, called my best friend.  We talked for about an hour, me sipping some wine.  I had my 2 bags of chips, my sub, finished my wine and zonked out, exhausted.

He's coming home today.  The drains, IVs and all are out now, I think.  I have to go back in about half an hour to get him or to wait for the discharge papers.

Then, I'll bring him home, get settled, and head off to my temporary job. After about 7 tonight I can sleep.  Yea!

Then, tomorrow I pick up my Mom to take her to the dentist and the next round begins...

Tuesday, December 2, 2008

Nothing to fear...

...but fear itself.

My husband is having surgery in less than 12 hours.  He seems unconcerned.  I'm terrified.  I can't talk to him about it because he'd say it was ok, he's going to live forever.  Yadda Yadda.

But I can't help myself.  All these scary scenarios keep running through my mind and it disturbs me.  I haven't been afraid of my own surgeries.  Why does his scare me?  Was he maybe afraid when I had mine but we didn't talk about it?

12 hours from now I hope to be posting that all is well, he's better than ever, going to get out of the hospital sooner than planned.

I'm saying my prayers and have people praying for him and for me.  Maybe it's always harder on the person who isn't the patient, the one who waits for the good news while trying to stay calm.

So now I try to sleep, so I can be calm tomorrow, ready for whatever news the surgeon brings.

Saturday, November 8, 2008


Everything seems to be settling down for the moment.  Everyone seems to be healthy, naps are occurring, just a nice normal day for a change!

Maybe I'll even take a nap myself.

On the webwork side of things, I'm still updating the Helpful Doctors lists at  I think that there are only 2 countries left to go before everything is switched over.

I'm pleased to see that people are signing up for that site and that there are always quite a few people reading.  I really think that site will be easier for newbies to navigate than the original site.  The doctors will be definitely better on there since people can add their own without me having to format everything.

I haven't done anything on any other sites for the longest time.  I really should do some stuff on the SK site and help my dog update her blog.

So much to do, so little time!

Wednesday, November 5, 2008

Yet Another Blog

Why in the world am I starting another blog?  I can hardly keep up with the ones I have.

So...we'll see about this one.  It's supposed to be about web design, how I got involved with it, tips and tricks, whatever.  Something different from Cushing's all the time!

It will also be nice not to talk about kidney cancer, post news items, other stuff.

Maybe this one can be just about me - and the ever present butterflies that seem to show up in everything I do.

I like to think of myself as a butterfly.  I didn't finally emerge from my cocoon until much later than most but I did it with the help and encouragement of a very special friend.  My friend also got me started in web design, which branched way past the original intent of a small page for my music studio.

If I knew then what I know now, I probably wouldn't have taken those first few steps into the land of HTML codes.

About Me

I am a Cushing's and kidney cancer (renal cell carcinoma) patient, founder, owner and webmaster of Cushing's Help and Support, web designer, piano teacher and mom.

I am a Cushing's patient who has dealt with Cushing's symptoms and the aftereffects of pituitary surgery since 1983.

Because I had very little support for my symptoms, diagnosis and surgery, I decided to try to make things a little better for other patients and started a support site called Cushing's Help and Support in 2000. The site has grown to astronomical numbers. This disease isn't as rare as doctors have told us!

In 2006, I was also diagnosed with kidney cancer (renal cell carcinoma). My left kidney and adrenal gland were removed. Having an adrenal gland removed complicates my post-Cushing's symptoms.

I am not planning to have any more rare and unusual diseases.

My entire bio to date can be found here: