Heart: The Odyssey

Comments Off on Heart: The Odyssey

man on top of hill

Steven Lee’s journey began with his heart damaged as a teenager by cancer treatment drugs.  After implantation of a VAD, he finally received word that a heart was available for him.  Here is the continuation of his story which details his physical and emotional struggles after heart transplantation.

(Issues of the Heart in this blog is the first installment of Steven’s story.)

 The New Heart

At first, I did not recognize the voice on the phone.

I get calls from the Seton Heart Specialty Care and Transplant Center all the time.   When I first got on the list, my heart would thump every time they called.   It got to the point that they were calling twice or so a week, and the thrill was gone.

I really didn’t recognize this voice.  It happened right after I discovered my computer’s motherboard had shorted out.  I was thinking that that was another $400 to get back up and running with a new one and new processor.   My mind was just not on anything to do with a new heart.

“Mr. Lee.   Are you ready?”

That is what I remember the most vividly.   The Voice said this exactly.   Not that I had a heart yet, but if I was ready.

“Ready for what?” I asked.

“We have a candidate heart lined up for you.  You need to be at Seton in two hours.”

Well.  What I can say is that all thoughts of replacing my computer left my mind.   In fact, incredulity took its place.

“You meant to call Steven Lee correct?  Birthdate (so and so and so) right?”

“Yes.  We have a heart for you, Steven Lee, at this number.  It is confirmed.”

Well now…

Now mom and I (mom lives in the house next door) had prepared hospital grab bags with a little bit of everything you would need in them.  We forgot a lot.  No matter how you prepare, you miss something.  It seemed to take forever to get ready to go as well.  We were counting down the time.   Two hours from the time of the call and we were one and a half hours away from the hospital as it was.

We hit the road late.  I called and they said it was fine if we were 20 minutes late but that any later and the window might close.   Great, I thought.  I hope to God there is no traffic.

We arrived ten minutes late.   Then we found out procurement, the team that harvests the heart, was running late because of the weather.  Really late.   We arrived at around 8:30pm and they were delayed by at least two hours at that point.   The only good thing about this is that I begged to have a shower and shave before they arrived, and I got my wish.   Not only that, they gave me a whole bathroom that was oversized for multiple wheelchairs  to myself.   They also handed me this red syrupy anti-biotic body soap and said take your time and use this and get as clean as you can, especially in the torso and chest areas.   So I got clean.   I also got my mind off of the beating of my failing heart at the events transpiring.

Back in the prep room off of surgery, my nerves started up again.

I ended up having nerves for three more hours before the heart arrived.   Three hours seems like an eternity when waiting for a heart to arrive.   It also seemed as if the old heart knew its time was at an end.  It had been in atrial fibrillation for years, but I felt it more.  It was tweaking and jumping and thumping.   Probably it was not used to the extra adrenaline, but some part of my mind personified it as not wanting to go, even though it was failing badly.   Funny how these kinds of thoughts crop up during times like this.

When they rolled me into surgery, they had about 4 people there for prep.  As the minutes went by, machinery was wheeled in, diagnostics run, all kinds of gasses and anesthesia apparatus brought in and the number of people kept increasing.   Everyone kept reassuring me, though I did not ask, that everything was going to be ok.   The surgeon said that he had done about 50 of these operations successfully and there was nothing to worry over.  Lines were started.   I am not sure I breathed much when the surgeons signaled the anesthesia to be started.

And the Unforeseen Complications it Brings

 No one tells you how you might feel when you wake up from major heart surgery.  No on can tell you.  Nothing prepares.  Nothing.

For one thing, my senses were scrambled.   My sense of touch seemed to be riding about two inches above my skin.  It was very disconcerting.   My vision at long distances was jumpy.  Like rocking a projector back and forth while trying to watch the movie it projects.   I could close my eyes and it felt like I was surrounded by a close-fitting box of darkness.   I felt my chest all the time and it felt like it was both torn up and soothed over at the same time.   Now I know that it was mostly chemical then…  Morphine and the residual effects of the anesthesia and everything else.   It was scary and disconcerting, though.   When you can’t trust your senses it is a scary thing.

The worst feeling for me was not the senses .  It was the ventilator.   I have a small airway anyhow and an enlarged thyroid so the ventilator is extremely uncomfortable.  I worked to get it out as soon as possible.  That is the first step on the long road to freedom; getting rid of that thing.

Other milestones were eventually reached.   The first time they pulled me up from the bed and plopped me on a commode was a victory in a sense.   No one wants the indignity of going in a bed uncontrolled.  No one.

However, two days after the operation, though a few milestones had been met, problems quickly developed.

My kidneys shut down.

I remember the nephrologist saying that I would have to have another line put in and start dialysis.  I called mom, who had taken a short trip home to get stuff we forgot, and she came back.  What I didn’t know what that she broke down emotionally on the trip and then got herself together by the time she got back.   I was extremely disappointed but the docs kept saying that this was not uncommon after transplant and most of the time it would take a few days to a week to wake the kidneys back up.  Now being a patient and sometimes focusing on the unspoken things, the phrase “most of the time” struck me.   I am not afraid to say that I had visions of needing dialysis in the long term.

Then my liver started “getting angry” according to the other doc.   The blood tests kept showing a water-logged, backed up, and malfunctioning liver.

When such things happen, the normal course of treatment with anti-rejection drugs and other meds is radically changed.  There are precise things that can and cannot happen before other things can happen.   However, removing or limiting anti-rejection drugs right after a transplant is dangerous.   Not more dangerous than losing a liver, but dangerous.

So this balancing act continued for a few days.  During it, I felt terrible.  Physically I thought that a new heart would make me feel automatically better.  This was not the case.  I felt like death slightly warmed over and my emotional landscape was bleak.  I was severely disappointed and disillusioned at this point.

I firmly remember comparing it to when Jesus asked for this cup of suffering to be taken from him.  I was emotionally and physically suffering.

Finally, the kidneys started working.  They cut back every day on the amount of dialysis and one day stopped it altogether.   Now they could remove another scourge; the dialysis vein line in the neck.   Oh my; was that uncomfortable.  When it was removed I could actually move my neck from side to side and didn’t feel like a leach was sucking on me.

When the kidneys were working the liver started slowly improving.  However, my long range vision was still jumpy.   Three different neurologists looked me over and none could explain the vision thing.  I had a CAT scan, and Doppler and nothing came up.   I took a lot of nausea medication those days to deal with the motion sickness induced by this visual impairment.

Finally, I got well enough to be moved from the ICU to Monitoring.  When this happens all the other lines are pulled (fantastic) and a simple IV left in place.   This is another milestone.  This is another freedom which you don’t truly appreciate until it happens.

However; yes you guessed it; there were more complications to come.

When I was going through bone cancer I had bad veins.  They blew several IV’s in those days.  I had hoped that this was different.  The one IV left started infiltrating and they had to try to start another one.  This is more traumatic for me than you know.  Childhood fears raised their head at the notion of them missing the vein or blowing the vein or just causing pain.

I asked for the best of the best.  The nurse who had done 10,000 IV’s to run the new one.   She was not available.  They used the IR Vein Contrast Machine and said that it was a sure thing.

It was not.  They blew the vein the first time.  It hurt like you cannot imagine.

I said, get someone from phlebotomy up here and do it.  They finally got the head nurse from Pediatrics who had never had a blown vein or bad stick to do it.  It BLEW!!!!!!!

Phlebotomy came up and they attempted it.  The three lines she attempted BLEW!!!!!

I was in such pain.  Huge bruises and hematomas were developing all on my arms.  I finally said that while I understood the risk of infection of a PICC line (a semi-permanent IV threaded through the veins to the heart) it had to be better than the sheer physical damage being done on my veins.  So finally a PICC line was installed (and it hurt as they had to hyperextend the arm to install it and my chest muscles and incision sight did not like that position at all.  It is still my sore arm to this day.

I call this a traumatic event because it brought me back to the horrible days in the hospital when I had cancer and the same things happened.   That is the thing about surgery, and recovery.  It brings up old shades and in one form or another they need to be addressed.   Sometimes, revisiting old ground is traumatic.   More trauma was yet to come.

One day my mom decided she really needed to clean my house from top to bottom and left for the day.  At that point, things were looking quite stable.   Then around 3pm in the afternoon my heart started beating very hard and very very fast.   I used the button.  No nurses responded.  I called the switchboard and told them the room I was in and what was happening.  No one responded.   Every time I heard someone outside the door I yelled loud and strongly that I needed help.  Nothing.

I called the transplant center and told them what was going on.  Finally, someone responded and shortly thereafter my cardiologist was over and we found that I went into A-Flutter.  A – Flutter is atrial fibrillation (fast beating of the atrium of the heart) plus tachycardia (Fast beating of the ventricles).  When it was happening I felt like it was so hard and fast that I was afraid the stitches would break and I would be bleeding internally.  That is how violently it affected my body.  I was so freaked out for 45 minutes waiting for someone to respond!

My doc explained that some a-typical rhythm happened in about 30% of the transplant patients and usually with electro cardioversion and other drugs would stop.  They cardioverted me the next day and for about two hours it held to a normal rhythm.   Then the violence in my chest started again.   I was ready to cry.  I really was at the end of my rope emotionally.

When this A-Flutter happens I felt my whole body vibrate and pulse, rock back and forth, and my eyesight dim and lighten with each beat.   It was impossible to sleep, to concentrate, to do much of anything.

The only good that came of the A-Flutter is that that field of vision, far vision shaking stopped happening.   If I had the jumpy vision and the A-Flutter, it just would have been too much.

They put me on a calcium-blocker IV and the rate slowed a little but now it was switching rates every second.  I mean one second it was 73 and the next tick of the watch was 138, then 90, then 156, then 111, then 166.   This was so much worse than just being pegged at 156-158.   Every “gear” change I felt as a wrongness; a certainty that normality was once again disappearing in the rear view mirror.  They had me on it for another day and finally switched to Amniodorone.

On the Amniodorone I had the same symptoms.  The switching every second.   I was on it for two days and felt like I was loosing a part of the function of this brand new heart.  I knew that if all else failed they would put in a pacemaker and I would have to live with the A-fib.

What got me was that when I signed up for a new heart, I wanted to use 100% of its capacity.  If it had chronic a-fib I would only be using 75-80% of it.   I felt cheated.  I felt frustrated and angry.  Sadly, I took some of it out on my mom.  I have since apologized and explained what was going on with all this.

Then, ironically, when I was talking with the psychologist about coping mechanisms for this violence in my body and turmoil in my mind, I felt this sudden sinking sensation.  Like I was in a canoe and it was quickly filling with water.   I called in a nurse and they showed my a perfect sinus rhythm on the machine.  They took and EKG again and no A-fib, no A-flutter.  The Amniodorone had done its job, and my pulse was 68-72.   My body had gotten so used to the violence that having a normal sinus rhythm took about an hour to get used the new and normal.

After 4 days of normal rhythm, though with plenty of water weight still on me, I got to go home.

The Home Sweet or Not so Sweet Home

Getting home is strange.   You become used to the artificial and controlled environment of the hospital and home is great, it is yours, but it is different.  I know that I started to wonder if I could even sleep well in my old bed, or use the bathroom, or take a shower.  I wondered if I could get in and out of my Lazyboy.

Some modifications had to be made.  We attempted a toilet break on my toilet to discover that it was so low to the ground that my mom had to go and get a weight belt from her husband’s old stash of truck driver and mover’s supplies to wrap around my torso and sling me back up off the toilet seat.   Luckily we got a spacer from next door and that lifted the seat enough that I could get off it without a big production.   The humorous thing was that while stuck on the toilet I had a flash-forward to calling 911 to get me off the toilet.   That kind of thing would have spread and I would never have lived it down.

My mom moved her little roll-away bed into my living room as I needed all kinds of assistance to do anything.  Not being able to use your arms past the limits of the sides of my chest was a real inconvenience.   Those sternum bones and muscles complained a lot.   Even lifting a glass of tea from my side table, I felt it.

To get up from my lazy-boy my mom had to push on the back to lift me up, and I could not raise or lower the foot rest at all.   She had to do that.  She did the picking up and cleaning and cooking and little things all day long.

I still had lots (30+ lbs) of fluid on me, and it was a battle to get any off.   The amount of oral diuretic just wasn’t enough.  I kept the same weight or even a little more.   This should have clued me into what was happening in the background, but did not.

In order to continue to have weekly heart caths and biopsies, where they take small portions of the new heart to see if it is rejecting, I had to be on blood thinners since I was in A-Flutter for a while.  The only short-acting one was called Lovonox.   It was an injectable and it hurt like a dickens when going in.   It had to be given twice a day in the love handles.  Each time it was more painful  as the area never healed between shots.  It got to the point I was dreading each injection.

Also, no matter how many times they go through medications, there is always some confusion.  We walked out of the hospital missing one very important one.  Of course, there were four different people who reviewed out bag of goodies before we left and having a bottle fall out somewhere was not out of the question.   An emergency trip to HEB 44 miles away because everyone else was closed was called for.  Luckily my mom’s husband ran that errand.

They give you a pill box and tell you they want you to organize your pills in a certain way.  I am sure it works for most people.  However, I was taking 17 meds before the new heart so my way and their way were different.  Their way took a lot of time and there were not enough compartments for all the different times that these meds needed to be taken.   We tried.   However, there were bottles lined up with “8 am & 8pm” and “9 am & 9pm” and “7am, 3pm, 11pm” written on the top so we knew when to take those.   Then there were the double checks done on each pill before taking them.  All in all, it took time and effort to make sure mistakes did not happen.  There is a better way I am sure.  I will find it.

I had two days at home.  I got a bit stronger.  I never lost more weight.

We took the first trip to the doc and the blood tests showed things were good.  Then the next day we got the second biopsy.   I knew for both that I had to wear shoes to protect my feet but my feet were so swollen that even with Velcro, we barely managed to fit them in.   By the end of the second day, the second biopsy, when I got home there was a massive bruise over 65% of the left foot.  It looked and felt horrible.   Also, during the biopsy I told the doc of a section of the chest that seemed to have swelled up.  He said to show the surgeon so we made plans the next day to do just that.

I had wished the surgeon had been on the floor to see it before we returned home.

The Portentous Trip Back

Around 8:30pm of that night I had to get up and use the restroom.  When I got on the pot, I had shortness of breath, cold chills, breaking out in a sweat and the feeling of being drowned.

It lasted about 30 seconds and went away.   I did not know what to think of it.  They told me to expect some strange feelings as the body got used to the new reality.  I also knew that I was seriously water-logged so I tried to ignore it.   However, the swelling at the incision sight continued.   I was a little worried.

Around 2:30am I tried to reposition my legs in bed to get more comfortable.   Just that act sent me back to drowning, cold, sweat, chills.   Again for about 30 seconds.  I had also stopped peeing, even with greater diuretics.

It was time to call mom over and get up on the chair and see if it happened when I was upright and sitting for a while.

Then around 4am I had the sensation without doing anything at all.  It took longer than 30 seconds to pass.  It was more like 5 minutes.   At this time I looked at mom and she at me and we called 911.   Something was really really wrong.

The paramedics arrived quite quickly.  As far out in the country as I lived, I expected 25-30 minutes.  They arrived in about 10 minutes, and it was a good thing they did.   By the time they got the gurney through the front door, I could not move without going into the cold clammy sweaty drowning state.   They had to move me completely to the gurney and put me in the back of the ambulance.

I get motion sick anyhow, and so I had them pump me full of anti-nausea meds.  Three times they had to give it.

The paramedic in the back of the bus kept talking calmly and taking my blood pressures.  They were all over the place.   150’s to 50’s to 130’s to 60’s and everything in between.  She had never seen anything like it.   At this time the back of the bus was going up and down and was more like a rock stuck in a rock tumbler than riding in a vehicle.

I was seriously considering whether I would pass out and what kind of shape I would be in when I woke up.  I always knew I would wake.  I never thought I would die.  But I knew that this was as serious as serious got.

God and I had a conversation then.   It was more about the whys and wherefores than the humble faith.   Let me tell you, that sometimes you have to ask why.  It is not a lack of faith but a question for which you really do want an answer.

No direct answer at the time was given.

Finally, we got back to the hospital one hour and forty-five minutes later because of traffic.

I felt worse all the time.  An incredible pain started developing in my lower back and in my stomach.  Both kept growing in pain.  They could not give me anything for fear of upsetting my blood pressures even more.

My pressures started tanking.   Now when I say tanking, I mean 80/55…then five minutes later 70/46 and then 60/35 and then 50/29.

The docs took me to prep, and after an EKG they knew an emergency Pericardiocentesis, where they open me up and put a drain in to get rid of fluid around the heart, was critical.  The whole time the pain in the back and stomach increased to a 9 out of 10.  I mean a real 9.  The kind that you start bargaining with God that you will do anything for even 5 seconds without the pain.  The kind of pain where you pray you do go unconscious from the low BP.  I never did.

They wheeled me into surgery, and I had to stay awake while they slowly crucified me.  Line after line had to go in, and there was no time for subtlety.  They jabbed.   A-lines.  V-lines.  It was painful, but not as painful as my back.

At one point the anesthesiologist recorded a 44/14 BP and he looked at me and said he had never seen a patient conscious with a BP like that.  I said that I wished I was not conscious.

A short time later, right before they put me under, they could no longer get a BP.  The machines error-ed out.   I remember the prayer “Into your hands I commend my spirit.”  I did not think I was going to die, mind you.  I just wanted that extra reassurance.  Then came the blissful gas and drugs, and I was gone.

The Second Recovery

When I awoke I had that damned respirator on again.   However, the second thing I noticed was that the pain in the back and stomach were gone.   My God.   I sang some praises on the inside to God then.   No pain.   It was glorious.   I could breathe (with the respirator).   I didn’t feel like I was drowning.  All great outcomes from a touch and go time.

I learned that during the surgery they had guessed that the removal of fluid would stabilize me, but they did not know for sure.   The head surgeon kept his cool during the procedure, but I later heard he lost it a little in sheer relief afterward that it had worked so well.   No one wants to loose a transplant patient upon whom they worked.

All in all, they removed 900ml of fluid from around the heart.   That is like the heart trying to beat inside of a pressurized Coke bottle.  It never went into a-fib.  It never went into V-fib.  All along it had a strong sinus rhythm and fought on.  It’s a strong heart.

The final conclusion was that the use of the injectable blood thinner was too strong and caused the effusion.  My cardiologist was completely against this particular drug, but the electro-physiologists were the ones that had the final decision.   They happened to make the wrong one.

I have since learned that my doc took the fall for it in order to close the case and move on.

The other staff at the transplant center knew that it was EP’s call.  However, my doc cares far more about his patients and progress than about inter-office politics.  Plus, he has such a great reputation that it doesn’t matter if he takes the blame for things from time to time.

So I went through the indignities of the ICU again.  The new incision and drain area were very painful.  In some ways more painful than the original transplant incisions.  They had to cut some of the abdominals to get the job done.

So here I was unable to use my arms for any locomotion, and the abdominals, which I had used before, were unavailable.   Once again I needed help to do anything.

I had to be lifted with one of those ceiling- based carry-alls to have anything done, including getting off a bedside commode.  Anything else was just too painful.   I was still not peeing.

The docs came in one by one and I learned that once again, my kidneys had shut down and my liver was inflamed.  This time, they pushed the diuretics quite hard.  They had a suction drain connected to the chest and they tried to avoid dialysis again because of some other blood results.

I could go into it again, but it mirrored in a way the first time around.  Some things had to get better before other things could be done to get me better.  Drugs were removed.  Drugs were added.

A week and a half of this and the weight just wasn’t coming off.  Finally, the kidneys and liver improved to the point where the big guns could be called in.  80 units of IV Lasix three times a day.   That is a hell of a lot of diuretics.  Even so, they took labs twice a day to see how the kidneys responded.   The first day, one pound was lost.   One.  Just one.  They kept at it.

During this I had cardio-therapy people come by and walk me.   This happened the first time as well, but my feet were fat  sausages and hurt a lot to walk upon.  What also happened during one of these walks was that the large bruise on my left foot developed into a huge blood blister.

Wound Care, the group of people dedicated for wounds, came by and did everything in their power to keep the blister from breaking.   It had a natural covering and would not be a source of infection if it remained.  For three days it remained.   Then it popped.

Now when you are on immune-suppressants, any broken skin is a problem.  When it is under the pressure of too much fluid and in the foot it becomes even a worse possible avenue of infection.

Wound care became my friends.

They dressed it in silver mesh and calcium alginate as a clotting agent.

Then a few days later they wrapped it in the first of two compression bandages.  As of today, they have three layers of compression on it.

Throughout, I was loosing some weight.  I was getting frustrated because everything seemed to depend on getting the weight off.  The blister, the legs, the potassium and magnesium depletion and the remaining fluid in the chest all depend on getting this water off.

The docs kept and are still trying to keep ahead on both electrolytes.  Finally, two days ago the weight started coming off.   Three pounds a day averaging.   So far I am now at a weight slightly lower than before the transplant, but I still have about 15 pounds to loose; some 6 from each leg and the rest from the chest and abdomen.

As you can tell, these are no longer life-threatening issues.   I am getting past the traumas.  I am adjusting.   I am getting more mobile and stronger as the weight comes off.

I am having small victories.

Two days ago I took a shower unaided.   My mom is great, but even still, being able to do something on my own was great.  It took longer.  It was exhausting, but I did it.

I am walking better.  I am walking faster.  I am walking without a walker.

I am still here for about a week, or so they tell me.

Now for the Nitty Gritty Personal Growth Stuff

Re-reading this was difficult.  I wish I had a worse memory.   Not so.   Things in this article still bring grim shades.

Nothing prepares you for a transplant.   Nothing prepares you for what leads up to it and what comes after.   The unknown, the problems, the traumas bring both my best and worst forward.

In the lulls between crises, I could look back at myself and see the good, bad and ugly.

The Bad.

When faced with traumatic situations, I do not do well.   I thought that I had it together far more than I did.  Again, when you have a failing heart, you have time to adapt.  When you have multiple setbacks in such a short time, they kind of pile their emotional debris on top of each other and you have barely examined one when another happens.

The transplant language for this is called Adjustment Disorder.  Adjustment disorder is an excessive, lengthy reaction to a stressful event or situation. It could be one stressor or a combination of stressors affecting one.   There are several subtypes of the disorder, including adjustment disorder with  Depressed mood, Anxiety, Mixed anxiety and depressed mood, Disturbance of conduct, and Mixed disturbance of emotions and conduct.

I saw on my medical notes (looking at the screen while walking one day and my records were up on it, that I had Anxiety and Depressed Mood Adjustment Disorder written on my record.

This was a little bit of a shock.  I do not like labels like that.  They sound so much worse than what I thought I was displaying to other people.

I was blessed in the psychologist who was assigned to me.   I told him what I read,and he said that most transplant patients have something similar written in the logs.  Most of the time, no psychologist is consulted before such notes are made.

He went on to say that any normal person, when faced with what I went through, is going to have a period where they do not adjust, where they may show maladaptive behaviors, get angry, get depressed, have altered moods (which the drugs also have as a side effect).  He said the real yardstick for Adjustment Disorder is if those maladaptive ways of thinking and acting continue after the initial stressors and the possibility for future stressors of similar nature become less and less possible.

Basically, he said it is normal to be abnormal for a while under such circumstances.

What made this more difficult on him and on me is that multiple people came to him and said, “Mr. Lee is showing signs of high anxiety and possibly PTSD.”

The psychologist put a stop to that.  He said that if you get PTSD on your chart, it is close to impossible to remove without going through mandatory counseling sessions for extended periods of time.   He said I did not have PTSD.  In fact, I was adapting quite well after the life- threatening stuff was over.  I am still adapting well.  I have hope.  I have a future.

However, I did learn that I have several areas in which I need work.   I need to let go of anxiety when it no longer serves a purpose.  I do sometimes obsess over symptoms.  I am letting go of that.   I need to be more aware of others and their feelings when I feel like crap.  That is a difficult one.  Lots of space for improvement.

The Tools

Now I have not mentioned the tools in place, and the tools I had to come up with on my own for dealing with all these things.

The transplant team has a great psychologist as I have already written.   He is a great resource.  He is also a mandatory resource  but well- chosen.

They have specialists that deal with the issues that come up.  They had 3 neurologists look my vision issue. It wasn’t until an internal medicine doctor pointed out that where I had the dialysis line was on top of the vagus nerve and as that sight healed ,my vision became better and that things started to make sense.   Interdisciplinary communication sometimes happens only on the patient level.

They have charge nurses and the entire nursing staff that try to accommodate my wishes when I wish to do something off script (like going and playing piano or walking in a different section.).

Then there are the tools that I had to develop.

First, contact with the outside world is a tool.  Facebook became not only a sounding board but a community to which I could plug in and feel less isolated and alone.   It was and is a powerful tool to keeping my humanity and contact.  Facebook allowed me to set up a wonderful and spiritual communion service with my retired pastor.   It brought together me and a couple of other pastors and priests who dropped by.  It gave me some wonderful visitors.   It gave me some wonderful phone calls.

The other tool was the moments that I could express my life, my passion, my personal mission and experiences to others who visited.   Sometimes you have to claim once again the value and passion for living in order to climb out of that well of reactionary turmoil when traumatic things happen.

While I have tried to be more general in the spirituality of this article (knowing the greater audience) I have to say that the prime tool I had to use to get through this was and is my connection with God and the awareness from moment to moment of the presence of God.

There were times when I did not have the capacity for words.  No thoughts would penetrate some pains.  Even in the midst of this, the tool I had that continued to work, was the unfailing perception and sense of the continuing presence of Grace in the form of God.   If no words would come and no internal dialog possible, the Presence was enough.   It had to be and became more than enough.   God knew what was on my heart (both of them, the old and new.)

The Good.

This experience was more difficult than going though two years of bone cancer and chemotherapy.   That experience gave me time to adjust.  It is amazing to what the human body can adjust given enough time.   Plus I was sixteen when that happened, and sixteen-year-old boys are resilient as hell.   This one came fast and furious with something new happening all the time.

Yet, I got through it so far.   I got through it so I know that in a way it never overcame me.

Yes, there were times I was at the end of my emotional rope, but I hung on.   It puts other things into perspective.   I was worried the least about recovery once and more about the financial burden that this transplant and the first year would bring.   Now, I will pay what I can and try to get as much debt dismissed or otherwise addressed as possible.  It isn’t that big a deal anymore in perspective.

I can actually get good and tired walking.  It has been 5 years since that could have been said.  I can breathe deeply and continuously while briskly walking.  After all of this, that is a great feeling.

I can dream again.  What will tomorrow bring?  Should I pursue Seminary (which has been sort of in my mind and heart since age 11) or a counseling degree or spend time up in Holden Village in Washington State or run a summer camp or…or…or…or…

Nothing seems impossible.   Perhaps that is the real difference with a new heart.   Nothing is totally impossible.  Some things are restricted for the first year or so and some may take several years in order to build up to them, but eventually nothing is impossible.

It is as of this end of writing Transplant + 40 days and I am alive.

Enough said.



Comments are closed