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Fishing The Coast, Oregon and Washington
http://www.qksrv.net/click-1442910-1529646

January
2005





Jennie's
(on hold)
Fishing Life


January
1st, 2005!


Happy New
Year!
Today I feel nearly human! Yesterday I had a very, very rough day.
Almost thought about checking back into the hospital! Just felt
like a truck ran me over.
I think this is because of my trek down to the river. I think I'll
not do that again, anytime soon.
I am learning to go slow. It's frustrating, but it doesn't do me
any good to rush things. It's like one foot forward, three back,
if I rush.
Today, I'm going to be good to me. A nice bath with bubbles. (I
have only been allowed showers up until two days ago!!! Whooo hoooo!)
Maybe a movie.
Hey, will someone do me a favor, and come catch a fish in my back
yard? I need some entertainment!



Well, I was going to put
a big old pic of a dissected aorta here, thinking that would best
represent my January of 2005,
but I thought better of it!
Instead, this is me recovering.... Sitting on the couch, as usual.
zzzzzz

Smile Comfort Living room Couch Lamp


<left>

January 3rd

I have to have fresh air, so I bundle up and wheel myself
out to the porch. It's icy everywhere and there is not one time of day that
the sun hits the meadow. So we are bound in ice, all day long. It's beautiful
all covered in ice, yet at the same time increases that 'isolated' feeling.
You'd think we'd have tons of wintering birds, today. We fed heavily, yesterday,
knowing that it would be icy and cold. Yet, today, few birds are taking
advantage of the offering.
I tried so hard yesterday to walk outside. Just a little bit, just even
out to the garage to sit on a cooler, to get close to the out of
doors. I couldn't make it. Of course, this threw me into a fit of frustration
and depression.
I had a bad day, yesterday.
It was funny to hear someone recall that after I came out of my drug induced
three day coma, I asked the nurse, "Did I have an extreme makeover?"
I guess in many ways, I did!
Today, I am a bit more optimistic, and I feel a little better. Still, I
was in Andrew's bedroom, giving Phoebe the sugar glider a worm, when the
phone rang. I could not make it to the phone. Argh!
I have one doctor who thinks I should try harder, and one doctor who thinks
I shouldn't try so hard. Now, that is confusing. There has got to be a middle
ground! I am not the type to not try, so it's not like I want to rely on
a wheelchair, my legs just simply give out. I try each day to take more
steps, to go a little further. I breathe deeper, I push. Someday, I will
be back out on the river. Until then, I will watch it closely, from my windows.
It's still there, and it's not going anyplace. (Except for down! Man, is
it getting low, again!)
I'd do anything to capture a glimpse of a cartwheeling steelhead. If I keep
staring, I will!
Yesterday, a bull elk bugled out on the river. It's an odd time of year
to hear that. I wonder if it was hurt. Kilchis heard it and took off like
a flash. Oh, great! Kilchis fighting a bull elk. That's got to be a site
to see!
Anyhow, it's off to the races--
Yours truly,
The turtle.
(I'm going to go look in the mirror. I'd like to see what Jennie looks like
with an extreme makeover.)

January 6th

Well, well, well.... It's back to the hospital, I go.
I'm feeling like a fairly normal person, today. That's a good thing! However,
they are doing tests on me nearly daily, and Houston, we have found a problem!
Since surgery, I have had severe numbness in my toes. When I walk, or try
to, the pain and numbness goes all the way up my leg, and into my lower
back.
Bill took a a pair of tweezers with a pointy sharp end and poked me with
it along the numb area. "Can you feel this? This? This?" There
were several areas, where he'd stop and say, "Can't you feel that at
all?" "No! What are you doing? Slicing me open?" LOL.
I get the distinct impression from some of the doctor's that I should be
walking with more ease than I am. I can only walk 20 feet or so, before
my legs hurt really badly. This is called, I have learned, "claudication"
and is usually caused by clogged arteries. My feet are bruised and beat
up, and I have no idea how that happened.
In my case, they think it is a mechanical problem, caused by not enough
blood flow. Maybe from during surgery, and maybe from after, from the way
I was put back together. Sometimes I wonder if they have extra parts when
they are done. You know, like the jokes... "What's this? Extra parts?
Just throw them aside...."
Regardless, yesterday during a 'peripheral arterial' test, where they take
the blood pressure all the way down my legs and into my ankles and listen
to my pulse, I flunked, big time. Most normal people record at least an
.08 for blood pressure down there. Mine records .02 in one leg, and less
in the other. Uh oh! Not enough blood pressure, there!
In one way, I am excited. In another, I am a bit worried. What kind of surgery?
How long in the hospital? I can't wait to talk to my surgeon. It makes me
nervous, not knowing. They usually do a sort of by pass, but in my case,
he mentioned going up through my groin and poking a hole in a flap in my
heart? Weird. I want to know more. Will it fix me? Will I then be able to
walk? Can I ditch my wheelchair afterwards? I do hope so!
The other day, Shane Stewart came over to fish and to take Kilchis for a
run. Kilchis would not go with him! He stayed, clinging by my side, until
I went, also. I kept telling him, "Kilchis! Go to the river with Shane!"
He just whined. He would not budge and of course, I could not budge, either!
Yesterday, I was feeling awfully sorry for Kilchis, my beloved, yet extremely
active pup. All day, he looked longingly into my eyes, as he lay by my side,
resting with me. He wanted to race on the river. He wanted to chase the
dippers and dig in the sand, and he wanted Mom to come.
You have no idea how much Mom would love to do just that.
The best I could do was to bundle up in the cold, and to wheel my chair
out to the back deck. Kilchis raced around the house, excited by my being
outside. He chased the birds, close up to the house, and barked. My eyes
filled with the vision of my chicken house over there, and my garden, over
there! And, the freesia I had planted the Fall before. Tiny green daffodils
shoots that had come out, early, under the cherry tree. My beautiful new
park bench, under the lace leaf maple.
Oh! How I wanted to walk over and look at the beautiful new, brown eggs!
I longed to walk out to the river! Or, only around my yard and garden to
pick some fresh parsley and sage for dinner!
As I sat there in the cold wind, and realized that I was powerless to do
any of these things, it hit me hard. I was creating my very own river of
tears, sitting right on the porch! Huge sobs hit me and shook my body. I
want to walk!!!! I want to walk so badly that you'd think I could just do
it! By will and want, alone, I should be able to walk on water! I rose,
and realized that no, no miracle had taken place. My legs still don't work.
I have a lot to learn. I have so much to be thankful for, and yet I am still
concentrating on what I cannot do.
Yes, I do believe I deserve an occasional pity party, but no, I do not want
to get caught up in these sorrow events, and let them take over.
This new operation offers hope to me, and I'm going to go with that hope
for now.
Surgery of any kind is no fun, but I have a feeling that after the one I
have been through, this one will be a breeze! And, what if? What if I wake
up and the feeling in my toes return, and the pain of trying to use my muscles
disappear? I'll tell you what. I'll return that wheelchair to it's proper
owner, and I'll call my dog, and we are going to march out to the river,
and by golly, we are going to stay there, all day long!
For now, for today, I'm going to try to drive my car down there, and at
least sit to watch the river.
I'm not quite certain why going there at all causes such a rush of emotion,
but I have to be ready for that. For now, going outside and even seeing
these things, causes a rush of tears.
Perhaps it's the beauty of it all, whether I am walking, or not. Perhaps
it's like seeing an old friend, and the tears fall in the shapes of hearts
as I realize how much I love the river.
Perhaps it's just the realization of the changes I have been through.
Last night, I asked Bill, "What happened to me?" It's such a change
that sometimes I need him to tell me what happened in a short and understandable
version. Bill needs to tell me why I am like this, and I hope that he can
wrap up the whole story in a package that I can easily understand.
But, just for today, I am going to concentrate on thanking God for everything
I can do, and for all that is good. I may not understand why God chose Andrew
and I to have marfan syndrome, nor why he saw fit to save me from dying
that night.
There are many things that God knows, that I do not. What I am certain of,
is that He knows all of these things, and I can rest in that knowledge.
I know that God knows best, and he has a plan for you, for me, and for everyone.
I feel comforted by the fact that this is all His plan, and I am certainly
watched over, every minute of every day.
I think that I am getting better at Faith through all of this!
Thank you, God, for all of these things!
I am confident that I will walk again, in His time.
You just watch!
Head Art Font Pattern Symmetry

I will write again, when I know more about when my surgery will be.
Have a great day, and know that I will be deep in prayer that we have snow,
soon. I am so sorry for those that don't like snow, or have to deal with
it in adverse ways. For me, I'm just going to sit here and enjoy it, so
pray for it, I will! Blame it on me, if you must, but it just makes me a
happy girl, whether I can go sledding or not! (Hey, do you think I could?
Just once?)
Font Art Electric blue Pattern Symmetry


January 8th

I told the good doc, "I'd rather be alive and in a wheelchair,
than dead!"
"Good! I'm glad to hear that!" He seemed relieved.
But, really, am I? Considering?
I get very little blood flow to my legs. They turn numb and cold, and I
have a devil of a time keeping them warm or comfortable. I can't sleep for
longer than an hour because whatever side I'm laying on goes numb and painful.
I rotate from ice packs to heating pads. I can't wait until the next time
to take a pain pill, still. I tried to wean myself off of them, but I gave
up on that idea. OUCH!
I find myself asking others for a lot of things, when I'm too tired. "Would
you please get me some water? My purse? The phone?"
I find myself half way up the stairs, taking a break. (Man, there is a lot
of dog fur on my stairs! It's getting cleaner, each step I rest on!)
Then, there is the medical side. I get bruises and cuts on my feet, because
I can't feel them. Without blood pressure, plus, being on coumadin, they
don't heal well. There is a danger of gangrene and amputation.
Yesterday, after talking with the good doctor, I thought I had a huge decision
to make. Turns out, I don't. It's just too big of a decision for me to make.
Time to "Let go, and let God". I want to come
to a place in my life where I can say, "Whether here on this lovely
earth, or with God in paradise, I win!" I'm not quite at that peaceful
place, yet, but I have confidence that it is coming. I am praying for that
peace, that gift.
There is a "procedure" that is being considered, where they first
do an angiogram. During angiography, physicians inject streams of contrast
agents or dyes into the area of interest using catheters to create detailed
images of the blood vessels in real time. During the angiographic procedure,
physicians can guide a catheter into the area of interest to remove stenoses
(blockages) of blood vessels. Patients with blockages of the major leg vessels,
(like me!) for instance, can have nearly total recovery after angioplasty
is performed to remove the constriction. This might create the needed blood
flow that would allow me to walk again, and take away the numb feelings,
and risk of gangrene.
The only problem is the risk. My aorta is still dissected, all the way down.
Whenever they mess with those arteries, I could have trouble again, and
end up in a complicated emergency heart surgery, just like last time, or...
worse.
They would be messing around the area of my abdominal aorta, and we all
know that that is the area of all of our life blood. If that goes, "hello
paradise!"
So, what do you think? Shall we do a poll on ifish? We could all vote!
Font Art Electric blue Pattern Symmetry

LOL. I think not. I think it's time to "Let go, and let God."
I just simply can't go there.
If it were just me, I'd do it in a "heartbeat." I want to fish
again, to garden, to run Kilchis, and to stop being such a darn burden to
my family.
However, it is just that, my family, my children, that I need to think about.
I want to be there for them, whether in a wheelchair, or not.
I have wonderful doctors, at least as far as I can tell. Someone asked me,
"Do you trust them?" How do I know to trust, or not trust a cardiologist?
What education do I have to go on?!? So, the answer, I suppose, is yes.
They listen to me. They respond. They call, and they seem concerned.
I remember Dr. Song's name by thinking of a "Song in my heart"
Which seems very appropriate to me! He is going to talk to his colleagues
and call me on Monday. He called yesterday afternoon while I was at a school
meeting. (My first outing, besides doc appointments! YAY!) I sure missed
his call. I wonder what he had to say?
I'm on pins and needles waiting to hear, as you might expect.
I'll keep you updated. I know this is depressing, and I could just talk
about pretty flowers and fishes that others are catching. I'll try to do
that sometimes, too. It's just that so many seem to want to know. So, there
it is. That's what Jennie's doing.
I keep petting Kilchis, and telling him "Mom will be back on the river,
soon, I promise." I think he understands.
Jennie's fishing life... Oh, how I wish this column were really about fishing!
That makes me laugh. Just what am I fishing for these days? I'm trying to
decide on the number one piece of fishing tackle that you just can't go
fishing without: Life.

January 11th

When you deal with a cardiologist, or any good, very important
and successful doctor, I guarantee you will not get all of your questions
answered.
Since my surgery, I have felt somewhat "fixed and released." I
have a list of questions I have written down, in hopes that someday I might
ask some of them. However, most of them are getting checked off all by themselves,
as I heal. I'm sure glad that none of them were important!
I waited all weekend to hear from "Dr. Song in my Heart" and finally,
he called, Monday afternoon. I could tell the minute he said "hello"
that I must be brief. I put down my list of questions for another day.
I tend to listen and hear key words they say, that play over, and over in
my head.
The last conversation, I could not get, "Well, Jennie, of course if
the surgery doesn't go as planned, you would be rushed to emergency surgery."
I also heard other negatives that he said. Things that had to do with death,
complications, etc. I spent the good part of a week doing nothing but being
negative and worrying.
Yesterday, if I got one thing out of what we talked about, it was a quote
from the doctor that plays over and over in my head. "Jennie, I think
that if this works, we can get you to feeling darn near normal!" Oh!
Have I played that one over and over!
Let's say that again, shall we?
"Jennie, I think that if this works, we can get you to feeling darn
near normal!"
One more time, k?
"Jennie, I think that if this works, we can get you to feeling darn
near normal!"
Tee hee! I have dreams at night of me walking again, just like it was normal.
You will never see a happier girl just walking on the river, if this comes
true! Or, just walking through Freddies, or walking to get the mail. I'll
grin from ear to ear, as I place one foot in front of the other. Whee!
Tuesday, I'm to see a radiologist about performing this procedure that would
give me more blood flow. The secretary warned me. "Jennie, they very
well may keep you here after the visit and admit you to the hospital."
Argh... but oh well! One step closer to walking? :)
Just like I said, I could not make this decision alone. God would have to.
Well, Thank God, He did just that! The doctor yesterday stated that they
could not just let things be this way. I don't have that choice any more.
The chances of gangrene in my legs and feet are just too high.
I am to see my local doctor until then, to make certain my feet are still
alright and will last till next Tuesday without treatment.
So, they will try this procedure. If it doesn't go well, or if I start to
bleed, I will have to have an emergency bypass.
But, that won't happen, right? Cuz... we are just going to repeat this,
one more time. It's like one of those click your heels, and it will all
come true, things. Besides, God is good. He wants me to walk again, right?
So, repeat after me... You know, lotsa times:

"Jennie, I think that if this works, we can get you to feeling
darn near normal!"


January 14th

Some days I want to write, but I don't have the energy. Other
days I have the energy, but I have a bad attitude and I really don't want
to share.
Font Art Electric blue Pattern Symmetry

I had a really good day, yesterday. I chose to use my energy on things other
than writing, and I thoroughly enjoyed it.
I went outside, and dragged a plastic chair behind me, for when I got tired.
I did things I didn't think I'd want to do, like sat in the shed, just staring
at things. There was the tractor, the fishing nets, the smelt nets (!) the
snow sleds... things that I was once so familiar with, but now rarely get
to see, let alone use. A life, hung up on the shelves, waiting to be returned
to. I will return to them. I will. I have to!
From there, I dragged my chair to the chicken cage, which I hadn't been
close to, in what seems like ages. I picked small curly grasses that the
chickens love, and poked them through the wire to let them pluck them hungrily
from my hands. I talked to the chickens. I purred to Big Bird, to Goldy,
to the beautiful little banty chickens, and I scolded the bratty banty rooster,
Ralph. Man, is he a nasty tempered little bird! I have Kilchis trained.
I just say, "Kilchis, bad chicken!" and Kilchis knows which chicken
to go after. He doesn't hurt him, he just jumps at him and scares him off,
so that he doesn't come after me. Ralph has put holes in my legs that I'm
afraid of, now, being on the medication, coumadin. Those cuts bled badly
enough without being on a blood thinner. I'd hate to read the headlines,
"Girl bleeds to death after attack of banty rooster."
"Bad Chicken, Kilchis!" Kilchis wags his tail in glee at my permission
to hassle him.
I fully expected to feel badly, today, after exerting so much energy, yesterday.
After I was done with the chickens, I said to Bill. "I could make it
to the river, probably. Shall we?" Bill shook his head. "Not today,
Jen... You've done enough." He was probably right, so....
Instead, I went inside, and asked him to bring me the vacuum. I rode around
in my wheelchair, and cleaned the floor. It was more work than I had in
mind, but I finished the job, and felt as if I had contributed to the household.
If there is one thing that really frustrates me, it's not feeling like I'm
helping around here.
So, by dinner time, I was fully exhausted. I couldn't make it up the stairs,
alone. I had to stop at each step and rest. I don't tell people I'm resting.
I tell people that I'm cleaning dog fur off of the stairs. It's normal to
do that, right? So, I cleaned the entire stair case on the way up.
I slept fairly well, although I had this dreaded feeling that I would get
up and be exhausted, still.
Guess what? I'm not! I say that with caution, as I know from experience
that this can change at any moment. Maybe I truly am on the upswing. Despite
the fact that I'm mostly stuck in a wheelchair, and my feet are numb, maybe
it's time that I get to feel nearly human, again?
But, today I will be good to me. I will rest.
I know that if I do too much, I can seriously rebound into post surgery
exhaustion. It's that old two steps forward, one step back. So, one step
at a time, I'm going to consistently move forward.
I'd sure like to try to make it to the river, though.
I'd sure like to see the deep green of the current, and listen to the full
song of winter. While I'm there, I'd sure like to throw out a lure, and
feel the constant throb of the current against a wobbler. Man, would I ever
like that!
Head Art Font Pattern Symmetry
Just for fun, now,
I have to get out my lures and pretend... dream... smile!
I keep thinking that maybe soon I could ride in a drift boat. Not to fish,
just to go along on a short drift to watch. I think that's coming, soon.
Just knowing that, and having it to look forward to keeps a smile on my
face.
All I know is that I'm tired of TV. I'm tired of fishing shows. I want the
real thing, and I'm going to have it, soon!

January 16th

When a grain of sand gets caught in your eye, it's immediate
cause for inflammation and perhaps even an infection. However, that same
grain of sand caught inside the shell of an oyster has the potential to
become a beautiful pearl.
Somehow, somewhere, what I am going through will mold me into something
better. There is a reason for this experience.. this challenge. I just don't
know it yet. Perhaps I'll never see that reason, clearly.
I have to remember that as I sit down after trying to walk, and the pain
hits like burning lightning in my legs. I have to remember to be thankful.
For whatever reason this is happening, I have to have faith that it is all
good.
Day before yesterday, I patted the silky top of Kilchis' head as he lay
in my lap, and promised him, "Tomorrow we will go to the river, Kilch.
Tomorrow, you can show me 'dig dig!' and Mom will praise you and tell you
that you are the best dog on this planet."
As he lay there, I felt his tail shiver to wiggle every time I said the
word "river" or "fish" or "dig-dig". He loves
those words, and has learned them well.
Yesterday, true to my promise, Bill loaded me up in my truck, packed along
my plastic chair, and off we went, to the river, dogs in tow.
It is getting so I'm not as cold as I once was. Little signs of improvement,
here and there. It was cold, but I was dressed in my old fishing clothes,
and that felt good and normal and right.
I climbed out of the truck. The twenty feet of fist sized rocks and sand
looked impossible for me to traverse, but I had promised Kilchis, and the
truck simply wouldn't make it any further in this terrain.
I began the slow journey to the soft sand.
I had to rest, twice, but I finally made it! I sat the chair down, and as
I landed in it, the legs dug into the wet sand in unpredictable balance.
But, I was there! Crooked and precarious, but exactly in the best spot for
a good dig dig!
"Kilchis! Show Mom dig dig!"
The joy in that dog's furious momentum was enough to bring tears to my eyes
and deep laughter from way down in my gut! Sand flew everywhere! Oh, what
a well trained digging dog! Kilchis 'dug dug' all around me, taking the
legs of the chair even further off balance. "Bill, I'm going down to
the left!" The chair nearly tipped before Bill rescued me, and reset
the chair in a safer zone.
There is an odd new fear in me that is unsettling. I am in a position where
I need to absolutely trust those that are around me. I am sort of helpless,
should I need to do something in a hurry, such as in the face of danger.
I am learning to trust, like never before. Perhaps that is part of my lesson
in all of this. Maybe this is part of the "pearl" that is forming.
Kilchis had dug a perfect moat around my plastic chair castle.
After that, Bill threw sticks for Kilchis and Dee Dee and all was well....
until... I realized that the downhill I had traversed to get where I was,
was equally uphill to get back to the car! Yikes!
Somehow, I made it. Someone in a car on the road saw us and honked as I
climbed into the car. "Yes. I deserved that honk! I made it back to
the car!"
I kept my word, and I was very, very pleased with myself. Kilchis got to
"dig dig" and I owned the pleasure of chipping away at some of
the guilt I felt about Kilchis' non stop plea to me, to go to the river.
Maybe we'll do that again, soon. Maybe, just maybe, I'll have something
done medically this week that will allow me to walk again. I'm a little
too afraid to put real hope in that, but you know... there is a chance!
Oh, wouldn't Kilchis be happy about that? Dig dig! Every day, once again!

January 17th

Tomorrow we will learn alot. I leave in the morning for the
doctor's appointment to see about walking again.
I have reports Fed Exed off to Baylor University and Stanford, for the marfan
experts to give opinions on, and then we will jointly decide which is safest,
and best for me.
I'm just a bit nervous. I feel like waiting this week has been longer than
a year. One more day, and I'm sure it would be! So, tomorrow it is. I'll let
you know as soon as I do. Should something unexpected occur, please read
the board
, and Pete will give an update.

January 21st

Mostly informational this morning... So many folks have asked,
and although it seems weird, I'm just going to try and explain what I have
learned about what the latest is medically, here in this column.
Hoookay. It's difficult to explain, as it took me a long time to understand
it myself.
On December 9th, my aorta dissected. It only dissected a little ways by the
time I got to Tillamook. During emergency transport from Tillamook to OHSU,
it dissected all the way down to my abdominal aorta.
At OHSU, the surgeons replaced the aortic root, ascending aorta, the arch
and the top portion of the descending aorta. which were the most immediately
life threatening parts of my dissection. They gave me a St. Judes valve, as
my valve was beyond repair. It beats really loud and drives me batty! But
hey, I'm alive!
He said at the time that they did as much as they could do, as much as he's
ever done on a Marfan syndrome patient.
They could not fix it all, and to this day, I am walking around with a dissection,
partially un repaired.
I am doing fine up there where they fixed it. However, where it is unrepaired,
it is causing problems. I am not getting good blood flow to my legs. Here
is why.

Rectangle Font Parallel Slope Diagram


An aorta is like a hose, which is the main blood flow from the
heart, to the smaller arteries. It is made up of three layers, like laminated
wood. When you dissect, these layers break apart. Ever seen laminated wood
come apart? Well, it's like that.
So, the blood flow after a dissection, usually flows mainly through what is
called the "true lumen" or, what used to be the main channel. The
separated layers become the "false lumens".
With mine, my blood flow is flowing ninety percent through the false lumen,
with just a tiny amount of blood making it through the true lumen, and down
into my legs. The rest of the blood is seeping through the separated layers.
Think of a double barrel shotgun, with the main barrel closed off. The blood
caught in the false lumen is getting stuck, because it's clotted, or "thrombosed
at the end." It's like a wind sock that is closed at one end.
So, I went into see an interventional radiologist. He was going to perform
a procedure called "phenestration" where they go in with an angiogram
and stick a small needle and stent into the false lumen, which would create
enough space for the blood to flow through to my legs again.
Before he did it, he wanted a close up CT, or a cross section of the immediate
area, to make certain it was going to work. We were all praying it would work,
as this would be a quick fix. I'd still have to stay in the hospital until
they regulated my coumadin, but the procedure is quick and non invasive.
I had to wait for four hours that day to get my CT, and then we went home.
The next day we drove into Portland for the results.
Not good. The radiologist reported that the false lumen was too large and
bulging, and the blood clots could easily dislodge, which could be deadly.
He was glad that he had ordered the CT.
So, I was then introduced to a vascular surgeon. The vascular surgeon, Dr.
Taylor wants to do major surgery, where he by passes this area. It would mean
a 4 hour surgery, a week in the hospital, and two more months recovery time.
Needless to say, my heart sunk. I've done my share of feeling sorry for myself.
Some people keep saying, "I can't believe how strong you are!" Well,
I'm not! But, what can a person do, but just do it? I want to walk again!
If this is the only road, then this is the only road.
Still, there is a battle ensuing between the folks at Stanford Marfan Clinic
and OHSU. The folks at OHSU insist that phenestration won't work. The folks
at Stanford say they've done 250 of these, and that they are confident it
still may work. However, to my knowledge, they have still not seen the most
recent CT.
Talking to Sunny, the group coordinator, she insists that even if I have to
have major surgery, I should have it done at Stanford.
So, the decision that God will make for me, (as I am totally unable!) is...
Stanford, or OHSU? Do I want to be that far from family should something happen?
Am I up to traveling?
I asked what the prognosis was for this surgery at OHSU. They said they could
tell me for "normal" folks, but marfan is too unpredictable. They
told me not to expect to feel like I was 18 again, and that the results would
probably be better, but not perfect.
Does that mean I will walk again? They "hope" so. Argh.
Anyhow, that's that, and I hope this helps you to understand.
Needless to say, I will be less than active on ifish for a while longer.

January 23rd

I sipped my coffee, and looked over at Bill. "I'm sick
of being sick." I said, most seriously.
"I know you are. That's why you are going to get fixed." He smiled.
I am sick of sick. So, so so sick of sick!
Day after day of the same old thing. I think I'm going nuts. I'm sick of reading,
sick of the remote control, and sick of trying and failing to do things I
used to do.
Everything hurts from my head to my toe. My whole body is screaming for more
blood. Especially my lower extremities. I mean, it hurts to sit down! It hurts
to lay down. Getting up to go downstairs in the morning takes a huge amount
of cheerleading to myself. This is despite laying in bed all night enduring
a festivity of tossing and turning, bone crunching and moaning!
My heart beat is so loud with this St. Jude valve. So loud, and so purposeful
and strong. It shakes my shoulders at night, and feels all the heck like someone
is flicking my chest with their fingers. Stop it!
No! Wait! Don't stop! Giggle...
The good doctor told me I would come to love that sound. Well, I haven't gotten
there yet, but I can see his point. If that sound stops, well... Let's not
go there!
I just want to complain, today. OK?
So many people say, "Oh, Jennie, but you are strong!" Well, I'm
really not! I'm a wimp!
I have days where I am hopeful, and I have days where I am frustrated. Today,
color me frustrated. I hope that changes in the next few hours. It would be
awfully boring to feel this way all day long.
I have days where I am teary, and days where I am not.
Sometimes I pet Kilchis as he lies by my side and I think negative things
like pushing him away from me. What happens should the worst happen? He would
be heart broken if I was gone! So, shall I push him away? Get him to love
Bill and the boys and start becoming more attached to them?
Dying is easy. It's dealing with the people issues that is hard.
I hug Kilchis tight and decide that there is no way I'll ever push him away.
He's mine, all mine.
"Kilchis! They say I might be walking by next Monday! That means RIVER!
FISH! DIG DIG!"
He wags his tail at all of these keywords. Yet, he doesn't bound towards the
door anymore. He knows something is different. He knows he must stay by my
side, for now. He is my care taker. Dogs do that, you know. He licks my hand.
I leave for Stanford on Thursday. On Friday, they will attempt the least invasive
form of a "fix" on my legs. Things could go wrong, but they are
very optimistic. I have to catch that optomism and as a dear friend suggested,
walk onto that medical campus with an attitude.
And this, my dear friends, is why I am using this very day for my last pity
party.
Cuz-- from here on in, it's positive thinking. It's a refusal to believe that
it might fail. I'm building an attitude, starting fresh, tomorrow morning!
...and Kilchis? We'll be fishing by next week! "Dig Dig!"

January 26th

'Miss Marietta' leaves tomorrow for San Fransisco with her sister,
Teri. Her sister Linda will be there, to bid them good luck and Godspeed.

I'm a little nervous, but I "keep" deciding just to give it all
over to God, and to rest in knowing that all will be as planned, no matter
what that is.
I struggle with that at times, but I think that when it all comes down to
it, I know that it is true. No matter what... whether here on this earth,
or with my heavenly Father, it is all good.
You guys have fun and catch lots of fishes.
Take good care of your friends and your family. Hug people often. Smile. Say
nice things to people. Compliment a stranger. Help someone who needs your
help and doesn't expect it. Surprise someone with a hand picked flower! (OK,
who cares if it's a weed?!) Call a long lost friend. All these things will
come back to you in many wonderful ways and probably do you more good than
they did for your friends!
If I at all get a chance to log into the internet, I'll say a word or two
on this
thread
. I won't be taking a laptop. I simply don't have the umph to carry
it!
Bye bye, friends!

January 25th

Good morning-- What a day yesterday was! I was all set, all
settled to go into PDX on Thursday and fly to Stanford. All of the sudden
the phone rang. It was Sunny at Stanford.
"Jennie? The doctor that we all love cannot do your procedure on Friday,
but he can on Monday."
"WAH?"
The flight had been arranged. The motel all settled. My sister and I had been
on the phone nearly all day trying to figure it all out. In fact, the last
time she called, she joked, "I will not be speaking to you again, today."
Yes, we were sick of planning!
So, how does one decide on who is the best doctor, without any experience
in this field? Sunny assured me that all of the doctors were equally good,
she just "knew" the doctor that could do it on Monday, and liked
the idea of me having it done by him.
Well, after two hours of turmoil in planning, the main doctor at Stanford,
Dr. Liang, finally called and said that he didn't want me to wait, because
of the pain I am in. He wanted me to get this done. Thank goodness! I want
to get this over with!
I have to give myself shots in my abdomen until the procedure. I am on coumadin,
and I have to give myself "lovenox" for a shorter half life drug
until Friday morning. Oh, lovely! I've never so much as come near my flesh
with a needle! We'll see how this goes!
My life has changed so much in the last month that I barely recognize it.
Who is this girl that weighs 135 pounds and can barely walk up the stairs?
What is it with me that I can't cook dinner, and need to ask my kids to assist
me in getting a glass of water?
I'm even thinking that I need a name change. This is not Jennie!
Alright! This will be fun! When I was little, I had a favorite story book
about a girl by the name of Marietta, who was very ill. Until I am fixed,
my name is going to be Marietta.
Call me nuts, but I don't want to be Jennie like this!
All kidding aside, I cannot WAIT until I am better. I am counting the hours.
Several times I have asked Bill, who loves to play with numbers, "OK,
how many hours till I'm fixed, NOW?" He loves to figure it out.
And... I do hope it works. What heaven it would be to have legs that don't
ache over the slightest movement!
OK, you figure out how many hours. I'm going to go get one of the guys to
get me a cup of coffee. You know, it's not all bad. It kind of makes me giggle
to watch these nearly grown guys that I have waited on hand and foot for nearly
18 years scramble to attend to me.
"Andrew! David! Quick! I need coffee!" Watch them run!
Don't worry, kids. Jennie will be back. But, for now,
"Miss Marietta" would like tea and crumpets.

January 26th

'Miss Marietta' leaves tomorrow for San Fransisco with her sister,
Teri. Her sister Linda will be there, to bid them good luck and Godspeed.

I'm a little nervous, but I "keep" deciding just to give it all
over to God, and to rest in knowing that all will be as planned, no matter
what that is.
I struggle with that at times, but I think that when it all comes down to
it, I know that it is true. No matter what... whether here on this earth,
or with my heavenly Father, it is all good.
You guys have fun and catch lots of fishes.
Take good care of your friends and your family. Hug people often. Smile. Say
nice things to people. Compliment a stranger. Help someone who needs your
help and doesn't expect it. Surprise someone with a hand picked flower! (OK,
who cares if it's a weed?!) Call a long lost friend. All these things will
come back to you in many wonderful ways and probably do you more good than
they did for your friends!
If I at all get a chance to log into the internet, I'll say a word or two
on this
thread
. I won't be taking a laptop. I simply don't have the umph to carry
it!
Bye bye, friends!

FISHING THE COAST
A journal of my life on the Kilchis river.

</left>​

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