IS EIGHT ENOUGH?

AN OPEN HEART JOURNAL
May 31, 2009
IS EIGHT ENOUGH?

Well, I'm back home after my very shortest hospital stay. Recovering from my fourth heart cath and the owner of another stent bringing the total to eight. I was a lot less sedated this time and actually had to endure the 6 hours of laying still without sleeping through it so it was a totally different experience this time. As I was waking up in the surgical room I thought the doctor was just beginning but he was really finishing up - oh how I love the drug "versed."

So now I have eight stents - the last one inserted inside a previous one. The doctor says that as my heart disease continues I could need more just to keep the blood flowing. Obviously there will come a time where there is no more room. He sadly told me I was truly their most challenging patient ever and I'm thinking, "well, here I am again as the most "unique" case in the group. The story of my life." The heart disease is well advanced and aggressive and nothing can be done now to stop it. And even though there was evidence of new collaterals (blood vessels) growing it won't be long until they succumb to the progression of the disease as well. The medical challenge now is balancing the treatment of the heart and the kidneys because the medicines often conflict each other. But my cardiologist says that the heart will always trump the kidneys. There is also the problem of distinguishing my chest pain between the chronic can't-do-anything-but-live-with-it pain and pain that indicates a stent or something else has gone very wrong like what happened this week. But the doctors admit that even they don't know how to tell the difference.

More than once this week I have been asked, "So how are you feeling about all of this?" and I really haven't had a response. To be honest I'm mostly in shock. I wasn't surprised that there was something serious wrong when I went to the doctor on Tuesday. In fact I came very close to taking a packed "hospital stay" bag with me thinking that I was going to hear "We need to put you back in the hospital." But when my Cardiac RN roommate tried to reassure me that she didn't think that would then I wrote it off as my overactive imagination. I wish I had been wrong.

I guess mostly I am numb. And when I am not numb I am dealing with anger which is so rare I hardly know what to do with it. I'm angry because once again I've lost control of my life. There are things I want to do, places I want to go, people I long to visit and none of them are possible right now. And just this week I've had to hear the word "no" to somethings I actually begged God for and frankly I didn't really handle it well at all.

One thing I learned when I was very ill several years ago is that handling disappointment is one of my biggest weaknesses. This tends to be a problem for most people with terminal or chronic illnesses because anticipating anything different from laying in bed or being stuck in their homes is a major form of having hope. The simplest of things - a visit from a friend, a trip out for lunch, a movie can all be things that you look forward to for days. I read about this "anticipated hope" in a book instructing friends and family how to help their terminally ill companions. Then I understood why a cancelled visit or trip out of the house was so traumatic for me. I tried to politely warn my friends to not make plans with unless they were very sure they could keep them.

Of course, I know this doesn't absolve me of the responsibility to respond maturely and trust God when things fall through or are postponed. But unfortunately, it just takes me a while to calm down - and eventually I do.

But why is it hard? Because for people who are dealing with a terminal or chronic illnesses are faced with losing control of their lives every day. Sometimes this happens gradually and other times overnight. Being in the hospital puts a patient on a whole new schedule and they are suddenly told when to wake up (usually at 4:00 a.m. for blood tests and vitals signs), when to eat, when family members can visit and when they have to leave, what to wear and even if you can wear your underwear or not. Sometimes the only things you GET to choose are the TV shows you watch and maybe your menu to some degree. When you get to actually make a choice of something you relish the opportunity.

Being home doesn't always make this any easier because there are medicine schedules to follow, new diet guidelines, many activities no longer allowed and trips out become less and less frequent - if at all.

And here is where I find myself. Unfortunately, knowing why it is hard is not helping me pass the test too well. I'm losing more and more control of my daily life and I'm kinda like the puppy that only remembers that he used to fit under the coffee table and can't get used to the fact that now he's too big now to get under it.

In my mind I can still go where I want, when I want and stay as long as I want. The reality is that I can't make a three hour road trip - let alone the 10-12 hour ones I did just a year ago. I can't go to the grocery store AND out to lunch on the same day. And I can't make plans to go across the country to visit family and friends at my own schedule. And this leaves me the most disappointed because I am longing to visit family, friends and places this summer but instead must face and accept my new limitations - with great disappointment.

So, be patient with me friends. I'm really trying to adjust but it's coming very slow for me. I hope you don't have to observe one of my meltdowns - I'll try to keep them hidden behind closed doors.

From the Heart,
Kathleen

YOU NEVER KNOW...

AN OPEN HEART JOURNAL
MAY 28, 2009 3:30 a.m.
YOU NEVER KNOW...

It's three-thirty in the morning and I have only been able to sleep for about three hours. The hustle and bustle in my room with blood transfusions that ran too late, chest pain, and thinking about what's coming in a few hours are keeping me awake except when I occasionally doze off with the laptop keyboard still under my fingers.

In a few hours I will be undergoing my fourth Left-sided Heart Cath. You would think that this one would be "routine" by now but it isn't. I've been reminded more than once that I am in worse shape this time going in than the past three times. My kidneys are more fragile, I needed two units of blood at the last minute and frankly Dr. Thelman isn't even sure what he's going to run into once he gets in there.

Dr. Thelman is the wonder boy doctor who got seven stents in back in January. He's in his mid-thirties, definitely the most gorgeous doctor I've ever seen and is truly a genius and the most caring doctor I know in his generation. He's not the cocky young doctor who thinks he knows everything but he is more like the doctor who knows more than most doctors his age and those older but cares more for his patients than his own intelligence. I know I'm in good hands.

But still I'm nervous - and a little tearful. Somehow signing the consent form with all the risks (heart attack, kidney failure, bleeding, etc.) was much more daunting this time.

Maybe it's because this journey has just been much harder than even the doctors thought it would be. The disappointment on Dr. Feingold's face Tuesday when I said I just wasn't feeling as well then as a month ago was very apparent and he didn't hesitate to say it. I've been disappointed too.

Maybe the combination of all my "close calls" since last September have added up in my mind and I wonder if I've used up my "nine lives."

Maybe I'm just tired - and I think for good reason. This whole challenge has been one that I just haven't been able to hide, ignore, deny or plow through. Unlike my other illnesses in the past this one has kept me in bed more than out, in the hospital longer than not, feeling more fragile rather than strong. It's been much harder, if not impossible, to "put on my game face" and that's a huge frustration for someone who hates people know just how sick I really am.

But on the other hand this has been the most remarkable journey because I have survived things I never thought I would. I have more incredible people - friends with more depth, maturity and love than I could have imagined. And somehow I've grown.

Even in my admitted weakest times I have been stronger in these past months than ever in my life. And I truly have no regrets.

Are there things I would rather be doing right now - oh you better believe it. And are there things I hope I still get the chance to do in the months to come - oh yea, many.
But I can honestly say that right now, at this moment in my life there is this strange contentment that until today I really didn't believe I had.

I'm not even sure what has made the difference or how I came to this realization. It might have been the elderly lady in the doctor's waiting room who asked (after watching and hearing about my struggles that day) asked, "How do you stay so upbeat?" Her question so stunned me because I thought I sounded like a whining little girl and yet she saw something in me I hardly saw myself. and as I kept thinking about that and I have heard the nurses response to my struggles in these two days I realize that there really is something different in me. Even saying so makes me feel like I'm being arrogant but that's not what I'm trying to be. But somehow, in the midst of this I am still content and I can't take credit for it, stop it or deny it.

I've had several moments in the past years of nearly leaving this planet and realizing days later that I nearly died without saying good bye. I was looking at some pictures tonight and remembering that more than one were pictures taken just 48 hours before I came close to dying and those pictures were nearly my "last" pictures.

The truth is, I'm no different than anyone else. Every day some father leaves home for work and doesn't come home. Every day a child somewhere loses a mother, a mother loses a daughter, a friend loses a friend. And most have no warning at all. The only difference is that eventually this body of mine will eventually stop "coming back" from that place I've come close to going several times before and I probably know what I will die from.

But still I am content. It's not that I've done everything I thought I would do in this life or that I've finished every project I meant to finish but that I know this is only the beginning - and what a beginning it has been. Next week I will turn 55 and you know there's a lot of people through the years that never thought I'd survive to be 25. But I did and wonderful things have happened during these 55 years.

I know I've said this before but I believe it bears repeating - seize the day friends. Because you never know.

I have a world of the most wonderful, loving brothers, sister, son, daughter-in-love, friends and even people I've never met and just thinking about you all makes me smile, laugh and cry all at the same time.

I certainly hope this is not my final blog. But even if it is I hope these words live on forever. There is but one hope for all of us and that is the reality that there is a God Who is sovereign, loving, all-knowing and Who reigns over absolutely everything and everyone. Therein is my everlasting hope and foundation and the reason for my contentment. I love Him and trust Him completely no matter what happens.

And, I love you - yes, YOU! I really do. Thank you for being a part of my world.

from MY heart,
Kathleen

A TERRIBLE, HORRIBLE, NO-GOOD DAY

An Open Heart Journal
May 26, 2009
Back in the "Saddle" Again...

It started out as a regular visit to the cardiologist and ended up in Baylor Grapevine Hospital. But what took place in between has left me exhausted, frustrated and frankly, a little ticked.

Dr. Feingold was initially concerned when I described the amount of daily chest pain I have been experiencing and that a kidney specialist had put me on a medicine that had increased my edema and put me at risk for congestive heart failure.

When he said they needed to do a heart scan and a nuclear stress test I had no idea it would turn out being more painful than my heart attack in January. The tech said I would experience a feeling of my breath being taken away but it was worse than that - MUCH worse. It was so bad the tech ran for the doctor and when his assistant came in she immediately recognized me and wasn't surprised I was in such pain because in her words, "Oh, I know this case - her heart is a complete mess." Then I find out they have nothing to give me for the pain there in the office.

So they actually continued the test fo 12 more minutes. It took me a couple hours to recoup.

the doctor told me that there was "non-profusion" where my seven stents are (which means no blood flow) and that was causing the pain so he contacted the doctor who put in the stents. The agreed he would need to go back into the heart via a heart cath to see where the problem lies and try to fix it.

They were going to do the heart cath tomorrow but my kidneys are too close to being in kidney failure so they will have to give me certain IV meds tonight and tomorrow to buffer the kidneys so the dye doesn't due any more damage. My creatine levels (which show what level of kidney failure on a scale from 1 to 5) show I am at 2.8 which is Level 3. They have talked about starting dialysis if they get to 3.0.

I am not handling this return to the hospital with much grace right now. I'm frustrated, tired of being so fragile physically, and adamant that I am NOT here on my birthday next Thursday or miss my birthday celebration on Saturday.

I'm not really afraid of the Heart Cath as this doctor does an excellent job at them but I do understand since this is my fourth one it is getting more and more risky and this time my kidneys are in their worst shape thus far. AND I am already into congestive heart failure which the heart caths usually put me into afterwards.

Please pray - for NO complications, for an "easy fix" and I quick discharge.

From the heart - Shalom,
Kathleen

Making a Silent Difference

An Open Heart Journal
May 15, 2009
Someone is Watching - and Listening

This week I received an email from a stranger. And suddenly that stranger became a friend. It seems that a few years ago someone gave this stranger a box of CDs and tapes to use to distribute to people hurting, needing encouragement and needing to know the love of the Father. Hiding in the box were three tapes of Scriptures songs which I recorded in 1994-95. The tapes were given away at my church, at Women's Aglow meetings, churches and even hospitals. I never sold them and any contributions went right back into purchasing more tapes, cases, and the printing of the labels and lyric sheets. There were many nights my son and I sat in the front room cutting, folding, labeling and duplicating the four different tapes so I would always have plenty to give away. I estimate, from the number of blank tapes I went through, that between 1994 and 2003 over 1000 of each tape was given away. Frankly, I had no idea if even one was still being listened to - until Sunday.

I emailed my "stranger" back and explained that I hadn't recorded any more music since 1995 even though there was one more tape I have wanted to record but never had the opportunity. I then explained "where I've been" since September 2008 and the physical challenges I have been facing.

She emailed me back immediately overjoyed to have "found" me and asked me to call. That evening I called and listened to this dear lady, who I'd never met, tell how she received my tapes and that she had been listening to them nearly every night for over two years. She then told how she'd spent months trying to find me through my old church, through people listed in the acknowledgements of my lyric sheets and the Internet. She finally found my former husband who passed away in December and through a memorial page on the Internet found my son.

Frankly, I don't think I've ever had anyone actually LOOK for me. But not only had she been looking for me, she had been praying for me - and the most fervently since 2008 and in 2009. I was glad to know she was blessed by my music (not REALLY mine - it was all written by the Spirit) but I was even MORE blessed to know she had been praying for me.

I haven't though much about those tapes this year. My beautiful white guitar still sits in the corner of my bedroom but no longer does it get played for hours a day and the last time I "heard" a new song was over a year ago and it never really came to be sung, played or even finished. Unfortunately my lungs are weak, my fingers sore and stiff and sometimes I barely remember songs I sang hundreds of times during those years.

One night while laying in the hospital listening to my iPod I was surprised to suddenly hear my own voice in my ear and realized that somehow the sequence of music had shifted from the classical playlist to the downloads of my own tapes. I found myself hearing "Fear not, I am with you. Fear not, I am here. Fear not, I am with you and I will always be so be not afraid." I began to weep as the song continued telling me the very thing I needed to hear.

One of my favorite places to sing had always been in hospitals and I spent many days going from room to room singing Words of the Father over people who were sick, frightened and alone. Suddenly I was that person and the Lord secretly changed my iPod to remind me that I wasn't anymore alone than the people I had sung over a decade before.

So here I am, wishing I could do this, go there, see that and music I recorded in 1995 was ministering to someone who I'd never met. I really wasn't even sure how to respond. I am convinced, however, that it isn't so much that my voice (back then) was so beautiful or the melodies so grand but because the lyrics were right out of the Scriptures - the Living Word of God that penetrates our souls and reaches our spirits. All I ever wanted to do was to "psalm" over people - and put them at rest (and usually putting them to sleep as well.) I never wanted to make any money and even though I was often chided for giving the tapes away instead of selling them. I just never felt right about making a profit from something that had been freely given to me.

I do miss being able to play the guitar for hours like I once did and I do miss visiting the sick and hurting and watching a true shalom settle over them as the Word ministers to them. But for now I will try to accept this extended "Sabbatical" I seem to be on. Yes, I do sing, but only here in the privacy of my room - and only after the apartment is empty. But maybe one day I will be able to return to my "psalming" and even sing over the one place I've longed to sing over since recording my first song in 1994 - My Beloved Israel.

But today I know that I secretly made a difference - with a tape given away freely which made its way into a stranger's hands. And that stranger prayed for me - I think that is a GREAT return on my free tape!

I wonder what your "silent" difference will be in someone's life? No doubt you will make one whether positive or negative. And it's never too late to make it positive.

From the Heart,
Kathleen

p.s. I don't have the means to duplicate the tapes but I have transferred the tapes into my computer and can make a CD of each tape if anyone is interested. The only technical error is that it recorded each side of the tape as one long song so there are no breaks between the songs. On the other hand that is exactly how they were recorded so there would be 30 minutes of continued music and me reading Scriptures for each song. Feel free to email me if you would like a copy of: "Everlasting Love," "There is a Sanctuary," "Consider Jesus." or "Father's Heart."
Kathleen Gabrielle: lyghtekeeper@gmail.com

Re-Learning How to Live

May 9, 2009

We're always getting ready to live, but never living.
- Ralph Waldo Emerson

Last night the simple task of putting sheets on my bed jolted me back to the reality that t I am living a very fragile life these days. One minute I was pulling on that fourth and final corner of the sheet and the next moment I'm sitting on the floor yelling for my roommate to get my Nitroglycerin spray.

Several sprays and slow deep breaths later the pounding in my chest slowed back down and I was ready to settle into the bed that my roommate finished making. She had been unaware that I was having to undo and remake the bed after the cleaning lady put my electric blanket underneath my sheets rather than on the top. And I only thought removing and remaking the bed would be tiring - not joltingly painful. Putting sheets on the bed has now been added to my ever growing list of "Don't ever do that again" activities.

Every day I am reminded of things I can no longer do. Commercials on TV for Six Flags sadly remind me I will never again ride a roller coaster. Seeing Lance Armstrong make another amazing comeback reminds me that i will never again feel the thrill of coasting down a mountain road on a racing bike. Watching someone else clean the apartment reminds me that I can't vacuum (which I actually love to do) or clean like I feel I should since I am just "sitting home doing nothing" while my roommate works 60+ hour weeks as a nurse. Last week a scary drive home in the dark showed me that my long distant (or even short distant) night drives that I once loved are now unnerving, blood pressure raising dangerous journeys.

I'm not writing all this to feel sorry for myself but to remind myself and anyone reading this that we all need to remember to "seize the day" that we have each and every day. Had I know three years ago that I was riding my last roller coaster I think I would have gone "just one more time" before leaving the park that day.

I've now been back home for a full month and I'm finding my energy is waning a little each day rather than increasing. Last week it took me three days to get out to the store when the week before I was able to get out to the store three times in one week. All the pep talks and telling myself to "Never, never, never give up!" can't make this tired body do something it simply cannot do.

There is so much I would love to do in the months to come. I long to visit friends - in south Texas, Tennessee, Indiana, Missouri and my siblings in Michigan and Arkansas. A few years ago I would have just driven there but my days of 6-12 hours of driving have ended. I want to go to the zoo, see the World Aquarium in Dallas, visit Shamu once more and learn to play golf.

I want to ride a horse, ride in a convertible with the top down, swim in the ocean, play in the snow, swing on a swing set and go down a slide. I would love to romp with a dozen beagle puppies, fish on a lake, ride, hike in the woods, take a spontaneous road trip, sail on a catamaran and walk on a mountainside. I would love to see the Grand Canyon, the trees of Washington State and the rock formations of Arizona.

But today I would just love to go someplace - any place that isn't Walmart or a doctor's office. I just want my world to get a little larger than this room I call home.

None of us really know what wonderful lives we have until suddenly a portion of that life is taken from us. If you can do something today that you would miss if you could never do it again then I challenge you to do it - do it today if you can. When I went to work on September 4th I had no idea I would be in the ER five hours later fighting for my life and entering the world of open heart surgery, heart caths, heart attacks and stents and months in the hospital.

So that one thing you've been putting off - stop putting it off. And even that one chore you really don't like doing but would miss the ability to do - do it like it might be your last time to do it.

Today I'm going to try to find just one thing to do that I haven't done in a long time but won't make my heart scream at me. Anyone up for a game of Scrabble?

From the Heart,
Kathleen
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