Rehab Attempt 1

 My recovery was much slower than the Transplant manual I received when I qualified for transplant indicated it would be.  When they first mentioned my going to a nursing home or rehab facility to complete my recovery, I freaked out a little bit.  There had been no mention of that in the manual.  I finally accepted that I would need more help recovering than my family could give me, so I needed to go.

I had several setbacks that prolonged my move to the rehab facility for weeks.  However, I finally made it!  I was excited to be on the road to recovery and willing to work hard.  But then, things began to go awry once more.  I had the second negative experience with a nurse, and I began to get ill again.

I don't know why the bed alarm kept going off.  It was meant to alarm the nurses if I attempted to get out of bed alone, but every time I rolled over it went off.  I understand the nurse's frustration, because she was busy and had to keep checking on me.  But one day I was talking to my Mom on the phone and left it on when the nurse came in.  Not knowing Mom could hear her, she began to say unkind things to me, asking if I was going to have a pity party for myself today.  I don't know why she would say that, because I was excited to be working toward recovery.  She threatened to do something to make sure I didn't get out of bed on my own.  I got very upset and insisted to Mom I was leaving and would be outside waiting for her to pick me up.  When Mom told me I needed to stay, I tried to get ahold of my husband, but he was working.  Finally, Mom contacted the transplant coorinator and she came and settled me down and investigated the nurses behavior.  My Mom told her what she overheard.

What I didn't realize, was that I was slipping into delirium again.  That night I hallucinated that I had driven home, visited my husband and son, went to church and came back before the nurses knew I was gone.  As I lay there, I realized the hallucinated car I drove was in the parking lot, and I had left the lights on.  To this day I cannot figure out how I got out of the bed on my own to go turn the lights off.  I had my walker and entered the hall, where I saw a nurse coming.  I tried to hurry back to the bed to avoid being caught and fell.  I hit my head on the door and my tailbone on the floor.  I laid there and began to cry in both pain and frustration.

I still didn't know I had slipped into delerium.  I remember overhearing a doctor chewing my nurse out.  He told her she needed to have some compassion, I wasn't in my right mind and not thinking clearly.  I thought how kind he was for defending me, but wondered why in the world he would say I wasn't my right mind.  I don't remember the ambulance ride to the hospital.  It was days later that I became aware of my surroundings again.  They told me I was in the ICU for sepsis.  I had gone through surgery to remove a large blood clot around my liver, my medicine port had been removed, and it looked like the sepsis was beginning to resolve.  

I recently was reviewing some paperwork and saw that I had an MRI on my brain, CT scans, and an ultra sound on my neck because they found a growth on my thyroid and discovered I have Hashimoto's (Graves) disease.  I remember none of it. But once again, I survived and was back on the road to recovery.

Mary, Mary

I had several roommates during my hospital stays that made an impact on me.  I've remained friends with a few.  Mary was unforgetable.  I don't know what her illness was, but she had a catheter bag that always seemed to be in my line of vision, and filled constantly with blood.  I'd lay there while I was fighting my own demons and watch the bag fill with blood.  Sometimes it got too full and the clip couldn't hold it.  When it fell I'd call the nurses.  It seemed the blood they kept giving her was going into her arm and out into the catheter bag.  

Mary's story broke my heart.  She'd been in the hospital for months waiting for surgery.  She was constantly on the alternate list for cancellations in the operating room.  One day she said, "They keep me on the call waiting list, but when do I get to be the patient instead of a number.  When do I become a priority instead of an overload?"  One day, I called the nurse because I thought she was in trouble.  They did a lot of stuff and a lot of nurses and doctors came.  In the end, they rolled her out and told me she was going to surgery.  I secretly suspected she died.

Later that evening, they brought a gurney with someone on it.  I didn't have my glasses on, but it appeared to be the general size, shape, and the same gray hair as Mary.  I called out, "Mary is that you?"  "Yes," she replied. They hurried her into the room and pulled the curtain to settle her in.

I was unbelievably relieved!  I really thought she died.  Our conversation through the curtain went like this:

Me:  Mary, I'm so happy to see you here.

Mary:  You are?

Me:  Yes! I was so worried about you!  I prayed for you!

Mary:  Why?

Me:  You weren't doing very well when they took you to surgery!  I'm so glad you made it ok!

Mary:  I already had surgery?

Me:  (Thinking the drugs were making her fuzzy) Yes, Mary.  They just brought you back.

Mary:  How long have I been here?  I thought I just got here!

Me:  No, Mary.  You told me you've been here for months waiting for surgery!

Mary:  (Starting to panic) Oh, my God!  I've got to call my husband.  I had no idea!  I thought I just came in on the ambulance.  I've been here for months and don't remember it?  Oh, my God!  I knew I was sick, but not this sick.

Me:  You're Mary, right?

Mary:  Yes, I'm Mary.

Me:  You're Mary XXXX (last name inserted)

Mary:  NO!  I'm Mary YYYY (last name inserted)

Me:  Suddenly horrified that I'd just scared the wrong Mary to death and questioned her sanity, when I was the one messed up!

What are the odds  the new Mary was so very similar in size and age to the first Mary - even her voice? We did become friends.  She didn't hold our initial meeting against me.  However, the nurses looked at me a little too intently for a while.  I think they suspected I was starting another bout with delirium.  

Rocky Road to Recovery

 After my transplant was fnally complete, I could hardly recognize myself.  I was unbelievably swollen.  My abdomen was huge.  It was like someone had put a huge tortoise shell on top of me.  My legs felt like they belonged to someone else.  But the thing that stood out most to me was my arms and shoulders.  They hurt horribly... worse than the incision from transplant.  My bones felt like they were burned.  The fingers on my right hand buzzed. (In transplant they insert IV's into very deep veins and can damage nerves in the process.) I begged for heating pads for my shoulders.  The wonderful nurses scoured the nearby wards for them for me.  

I want to shout out to the nurses.  Over the years, I've dealt with many.  Out of the hundreds of nurses I met over the years, I only had two bad experiences.  I've come in contact with a lot of great nurses, but those in the ICU units at Cleveland amazed me.  They were extremely knowledgable and skilled, but they were also compassionate and gracious.  They cleaned me, fed me, cheered me up... did everything I was unable to do during those first weeks.  I was very grateful for their assistance and care in my helpless state.

I was in the ICU nearly three weeks.  Most liver transplant patients are heading home at three weeks, so I had a pretty rocky start.  My goal was to get to the regular floor.  In order to do that, I had to be able to have my NG tube removed.  My nurse warned me not to push it.  "You'll really wish you hadn't if your stomach isn't ready."  I got it out soon after, and headed to the regular floor.

I was so happy to be on the regular floor!  It meant I was improving and thinking about heading home.  Little did I know, home was not in my immediate future.  My stomach began to fulfill the nurses dire warning.  An NG tube had to be reinserted.  I struggled with a bout of supraventricular tachycardia (rapid heart rate that required cardioversion - medically stopping and restarting the heart).  Once again I developed a pneumothorax and had to have a chest tube for more than a weak.  

My incision would bleed profusely.  At one point I was sitting up and looked down.  There was a four foot diameter pool of blood that was running from my chair to under my bed.  I freaked out, thinking I was bleeding to death.  The nurse called for help when she saw it.  It turned out to be blood laced water, which appeared more severe than it was.  

In the ICU, I had one-on-one care.  On the regular floor, I had great care, but lonliness began to set in as the nurses visited less and less often.  Additionally, the massive amounts of medication made me feel numb - like my personality was on mute.  The combination of the unresolved mental trauma from the shooting event in August and the crisis where my respiratory system shut down left me feeling vulnerable and unsafe.  As I struggled with bouts of dilerium, I hallucinated people trying to harm me and my son.  I became very withdrawn and started shutting people out.

I remember one day the surgeon came into my room like a whirlwind.  He opened the blinds and demanded to know why I was sitting in the dark.  Where was the Angela he knew?  This withdrawn, unsmiling person in the bed was unrecognizable!  He demanded to know what was wrong! I really didn't know what was wrong.

The next day, the hospital chaplain paid me a visit.  He was a really great guy, and I appreciated his concern.  We talked.  I enjoyed the visit.  Then they sent an art therapist.  I didn't know hospitals had such a thing.  But she sat my bed into a chair position and set me up to paint.  I finally did talk to her while I was painting and realized why I was feeling so down.  My mental health began to improve and I fought hard to recover.

My art therapy paintings...

Unexpected Crisis

 Shortly after the second half of my transplant, an unexpected crisis occurred.  I remember the nurse on duty was cheerful and sweet.  She introduced herself and told me she would be there all day.  I didn't need to worry about a thing, she had me.  I was in good care.

Later in the day, I was on the phone with my husband.  Suddenly the nurse started hovering and commanding me to take deep breaths.  I was puzzled.  Alarms started going off.  More nurses and residents came.  They started getting urgent with their demands.  I was getting cold... so very cold.  My body began shaking.  I asked my husband to coach my breathing on the phone.  I breathed in and out on his command. I was giving it all I had.  It wasn't good enough.  The voices were getting more demanding!

I began to panic.  My body was no longer controllable.  I was very scared and clueless as to what was going on.  What happened next is seared into my brain.  I looked at that nurse who promised I was in safe hands and asked her to hold my hand and help me.  She put her hand up in a halting motion, turned her back to me and said, "If you're not going to do this, I'm not helping you."  In that moment her action was an abject betrayal of the deepest kind.  I desperately needed human touch, something to ground me and draw strength from.  I was confused and fighting for my life, and she wouldn't help me.  I was going to die rejected by the person I was counting on.

Suddenly I saw a familiar face hovering above me.  One of my former coworkers has a daughter who was a doctor on the transplant ward.  She was on duty.  Her sweet face appeared like an angel from heaven at that moment.  She asked me what she could do to help.  I told her how cold and scared I was.  I was trying to cooperate but it wasn't working.  She held my hands, looked into my eyes and said, "I've got you."  I'll forever be grateful that she was on duty that day.  She saved my life and rescued me with such kindness and skill. (The odds that someone from my neighboring town hours away from the hospital, in a different state, and with whom I had a personal connection being the doctor to rescue me in that exact moment are staggering!  I believe it was the providence of God.)

Whoever invented "bear hugs" deserves a medal of honor.  I don't know their real name, but in the ICU they called them bear hugs.  They are hollow blankets that hook up to a hose that blows heat into them.  If you've ever been in shock, you know how painfully cold you can feel.  They are like a warm hug from heaven. Unfortunately, I had the experience of needing to use them on quite a few occasions throughout my transplant experience.

Even though I then felt supported and warmth, I still couldn't keep my oxygen up, regardless of my efforts.  My angel doctor told the nurses to get my husband off the phone, then in a flurry of activity they intubated me and started the ventilator, and I was unconscious - I believe they gave me medicine to put me out.

For some reason I felt somewhat aware of the machines keeping me alive.  I thought I was in some kind of agitator (all of me).  Picture being in the cycle of a giant front load washer.  It was a weird sensation of feeling like I was going in partial circles continuously.  In retrospect, it was probably the rythym of the machines in my subconcious.  I was comfortable, but just feeling like I was in a revolving cycle until I regained consciousness.  I don't know how long I was in that state.

They informed me that I'd had a severe reaction to a transplant medication.  It had shut down my respiratory system.  Once it was out of my system I regained the ability to breathe on my own.  I was feeling quite ragged from the incident, but once again on the road to recovery.  

That incident left a mark on me.  I remember it often.  I've determined to never be that person who refuses to help someone who seems to not be helping themselves. Maybe they are trying, but they just can't succeed.  I can't know that.  I never want to walk away from someone who is at the end of their rope because of the emotional challenge it is causing me.  I hope I always remember the lesson that horrible experience taught me.

Transplant Part 2

 I was relieved when the chief surgeon stopped into my room and said, "Let's get this done!"  I was tired of wondering if I would be ok.  I was ready.  The second surgery went better than the first, in that I didn't have heart failure.  My liver transplant was officially completed. The doctor said that my body couldn't stand much so they had to hurry.  There was so much swelling that they closed my skin but left the muscle tissue and fascia open underneath.  We would talk about options when I recovered my strength.  

I was so grateful to be alive.  The first thing that went through my mind when I came to was that I could now celebrate and tell everyone that I made it.  I went live on Facebook somehow - I could barely hold my phone - and told everyone that I was a live.  I couldn't physically show much exuberance, but I was shouting with joy inside.

I thanked the surgeon for keeping me alive.  I'll never forget his words.  "Thank you, but it wasn't just me.  Yes, I and my team did a great job, but without your fight and God's help you wouldn't be here, girl."  I'll probably never know exactly what happened in that operating room in those surgeries, but I know it was more than surgery.  God was there with me, looking out for me, and keeping me safe while I was helpless.  

Now it was up to me to fight my way back.  And boy was it a fight!  My hubby once made the mistake of commenting that I bounced back from transplant.  I DID NOT bounce - there was no bounce in what came next.  I describe it like this:  I dug my way out of the grave one handful of dirt at a time and drug myself to the edge of the graveyard.   

I felt awful the day after that second surgery.  I did joke around a bit, but I wasn't as compliant as usual.  I recall a cheerful nurse saying they were going to get me out of bed that day.  I just looked at her and said, "Do you think you're Jesus, and you can say take up your bed and walk?  You'd better have your twelve disciples to help, because I am not getting out of this bed today."  I was joking, but dead serious.  I did not get up that day.

  

Robin

 Life has taught me that we are never as unique as we think.  I thought I could be the only person in the world with a liver half implanted.  I was not.  One day the nurses moved a woman named Robin to the other side of the glass partition.  Robin was like me - with a partial liver transplant and waiting to be stable enough to complete the process.  I had tubes in place, but I could speak.  Robin could not.

I heard the nurses in the hall worrying that Robin was giving up.  They kept playing Bruno Mars for her, because she liked music.  That day they got Robin and me up at the same time in chairs.  I'm loosely calling them chairs.  They were gurneys that mechanically changed into the chair position - more like large thrones.  Robin and I met.  We tried to communicate, and she finally wrote me a note.  It said, "I am so tired!"  I knew exactly what she meant and felt a kindred spirit in her.

I knew we both needed something to strengthen us, so I asked the nurse for my phone.  I began to play gospel music.  Robin smiled.  She reached over and grabbed my hand. For a while we "danced" to the music by swinging our clasped hands back and forth and nodding to the music a bit.  It wasn't much of a dance, but it was what we had in us. The nurses cheered us on. 

When we grew tired after a few minutes, I asked Robin if she'd like me to pray for her.  Her eyes watered and she nodded.  I thanked God for bringing us this far, then I told God how tired we were and prayed for Him to strengthen us and to see us through successful surgeries ahead.  It was a simple prayer, but we both felt the presence of God wrap his arms around us.  It was a moment I will never forget.  We weren't the only ones who felt it.  When I looked up, all of the nurses and doctors in the ward had tears on their face.  Several weeks later, on a different floor, people mentioned that the story of that incident was talked about throughout the hospital - much to my surprise.  I knew it had impacted Robin and me, but I didn't see it from an onlooker's perspective.

The next morning, I headed into surgery to complete the transplant.  That was the last I ever saw Robin, but I'll remember her forever.  I did ask after her before I left the hospital and was told that she recovered and was doing well.  Thank God!

My sweet hubby sent this sleep mask to

my room to help me block out the bright

lights of the ICU.  It smelled like his

cologne and made quite a stir with the nurses.

Transplant

 The trip to Cleveland was a flurry of phone calls.  I had my daughter, Anita, become my spokesperson on Facebook to keep everyone updated.  I said another "I love you" to my children and grandchildren.  When we arrived, I hugged my family good-bye before I stepped inside.  This was a solo mission.  COVID rules were in place: no one, for any reason, could visit the transplant ward.  The patients there were too vulnerable.  Whatever happened from there on out, I would face totally alone.

Honestly, the aloneness was daunting.  I was facing the biggest challenge of my lifetime in the weakest state of my lifetime.  I asked my family to spend a night or two in Cleveland - just to be nearby.  I don't know why that mattered to me.  They couldn't come to me.  I just needed to know that they were near.

The team was waiting when I arrived.  I was hurried into the emergency room and my world began whirling around me.  Iv's, medications, labs... it was chaos.  The transplant was scheduled for 4 a.m., but around midnight they whisked me to the operating room.  By whisk, I mean walked briskly for about 15 minutes... Cleveland Clinic is a big place.

At the doors of the operating room, everything stopped.  My gurney was surrounded by doctors in masks and shields.  The chief surgeon introduced himself and the rest of the team.  He asked if I had any questions or anything to say.  I said, "Please keep me alive.  I promise I'll be fighting inside."  He said that he would do everything in his power, and they all knew I was a fighter.  I then asked if I could pray for the surgery.  The entire team joined me in prayer for the surgery to be successful.  I was honestly surprised at the collective heartfelt participation.  It really made me feel seen, heard, respected and safe.  

Next, I was bustled into the operating room (which is always freezing cold), scooted onto the operating table, and dozens of things started happening at once.  Every piece of my body had a person doing something all at the same time.  Someone at my side was very kind and reassuring me that everything would be fine.  The last thing I remember is a doctor running their fingers through my hair before putting it in the net and telling me how beautiful my hair was.  I suppose it would have been a pleasant last memory, but thankfully it's just a memory.

I woke up.  I don't know when I woke up.  I had been on a ventilator for some time, but I was no longer on it when I came to.  It dawned on me that I was alive.  I remember the nurse who greeted me.  Before long a doctor was at my bedside.  My first instinct was to profusely thank him.  He stopped me and informed me there had been complications.  I was confused.  Did I get the liver, or didn't I get it?

He said that I had the liver, but it was only half transplanted.  I was so confused!  How could they only put a liver halfway in and I still be alive?  He explained that my heart had stopped in surgery, that it had taken 45 minutes to get it stabilize, and that it had not been safe to continue the surgery.  My family says the doctor told them that I had died on the table, and they had to resuscitate me. 

I've had a lot of people ask me what a near death experience is like.  Honestly, I'm not sure.  I have a few memories, but I don't know if they are hallucinations or experiences.  At some point I recall talking to my grandmother. When I told her my dad would be happy to hear what she told me, it dawned on me that she and Dad were on different sides of death.  I needed to get away from her.  She laughed, the laugh she had when she really got a kick out of something.  I can't even remember what she said that Dad would be happy about.  The other memory is seeing doctors in front of a huge white backlit board looking at images and having a discussion about the one in the upper left-hand corner.  I thought I woke up from anesthesia in surgery.  Again, I don't even know for sure when I had these memories, or if they are memories and not part of the hallucinations I had so many of. But for those who always ask... that's all I've got.

I don't know if it was the medicine or all of the stress I'd been through, but that time seemed to be some sort of purgatory.  We were all holding our breath to see if I would stabilize enough to finish the surgery. I felt like I was neither alive, nor dead, but waiting on the verdict.  The nurses Facetimed my family, we visited.  My son-in-law played some music for me, I got to see the kids, grandbabies, and my husband.  I was happy, but not really celebrating.  I did retain my sense of humor.  I told the doctors I suspected that what really happened was the Internet went down and they didn't have the tutorial for the rest of the surgery. I kept asking if the Internet was back up, so we could finish the job.  I'm sure I thought it was a lot funnier than they did. I was on a high dose of pain medicines.

September 3, 2020

The day after transplant.

Face to Face with Death

September 1, 2020

Death is an adversary that each of will eventually lose to.  Regardless of our will to live and tenacity in the fight, death will one day win. Our best hope is to win a temporary battle.  Over the years of declining health, I felt pretty confident that with God's help I would win this particular battle with death.  As the days passed, I kept my bags packed and my cell phone charged and, in my hand, waiting for the call to say a liver was waiting and giving me an advantage in my struggle with death.  I truly believed it would come.  

When day seven came, my strength and hope began to fade.  At about 4:00 p.m. something inside of me began to die:  hope.  I was tired!  Even eating was exhausting.  I'd take one or two bites then need to nap.  Deep inside I knew that if I went to sleep one more time, that I wasn't going to wake up again.  And at that moment I desperately needed to go to sleep.

For a couple of minutes, I was angry with God.  I had believed he would bring me through.  I even said, "God, I don't understand. I trusted you. I couldn't treat my own kid this way."  But then I thought about eternity with Him and said, "I'm sorry I'm upset.  It's your right to call me home.  You created me.  I love you regardless.  If this is your will and my work on Earth is done, then so be it."  I closed my eyes and started to drift off.

Just then, the phone rang!  The words, "Angela, we have a liver for you," were like gasoline thrown on embers freshly snuffed out.  My hope erupted into a bonfire.  

I do want to say that there's something very sobering about coming face to face with your own limitations.  I think all of our lives we wonder how we would perform in certain scenarios. We want to believe that our courage, faith and strength would be up to the task.  The truth is that we have our limits.  II Corinthians 2:9 says that God's strength is made perfect in our weakness.  I believe that when I reached the end of my strength and faith God stepped in a carried me.  There's no way I would have survived what came next on my own.  

Changing the Odds

Drug addiction has taken a heavy toll on America.  When I see the obituaries of young lives snuffed out it breaks my heart.  I don't believe there can be any benefit in a young life needlessly lost, but there have been changes in the organ donation scenario because of it.  True, many addicts have Hepatitis C, which used to preclude them from donating organs.  That is no longer true.

When my liver function began to stabilize at around 32 MELD and my pulmonary pressure receded, the doctors approached me about accepting a liver with Hepatitis C.  During my initial approval, I had been given the choice.  At that time, I felt that if I were going to go through a liver transplant, I wanted a healthy liver.  But now, I just wanted to increase my chances of living.  The doctors explained that someone more likely to survive would get the available healthy livers instead of me, but if I would accept a Hepatitis C liver, I could double my odds.  I would be treated afterwards, and in 3 months I would be Hepatitis free.  I accepted.  

The negative of accepting an organ with Hepatitis C is the obvious:  you always carry the DNA for Hepatitis C.  Even though it's dormant after treatment, there is the possibility of reoccurrence.  The positive is that you increase your odds of getting an organ.  It's a personal choice each individual has to make for themselves.  

Once I agreed to the Hep C liver option, it was time to go back to the regular floor and focus on building my strength for the upcoming transplant.  They wanted me out of bed and walking as much as possible.  I hadn't walked in nearly a month.  I was so shocked at how difficult it was to walk.  My feet burned.  I needed assistance for a few days and used a walker, but I fought hard.

One day I was walking down the hall and asked the physical therapist if my glasses were dirty.  I could hardly see.  She looked puzzled and said they were not.  Later that day, things began to look stranger:  the ceiling tiles were straight on one end of the room and at a 45-degree angle on the other side, and people started having one set of eyes, but two mouths.  I didn't realize I was having another bout of hepatic encephalopathy.  

During that time, I posted false information on my Facebook page, and made videos that didn't make sense (we laugh at them now). Eventually I got too confused to answer my phone.  My family couldn't visit and now they couldn't talk to me.  Of course, they were concerned!  My mother moved heaven and earth and alerted the liver team that something was wrong and demanded an answer.  There's no advocate like a worried mother!

Eventually, the encephalopathy improved.  I was as stable as I would be, whether in the hospital or at home.  My hematologist visited me one morning and said that I had been the alternate to a transplant the night before (if something had not worked out for that person, it would have come to me).  He said he believed that within 7 days I would have a liver.  Could I keep fighting for 7 days longer?

A memory that makes me cry every time...

The nurse got me settled into my parents' car.  Dad started the car, paused, looked back at me and said, "I haven't felt like this since the day I brought you home from the hospital for the first time.  I'm so afraid something will go wrong while you're in my care."

When you're extremely ill, it's easy to forget that what you're going through affects everyone around you.  

August 2, 2021

Waiting

Not Alone

 After I was removed from the transplant list, the doctors worked diligently to stabilize me so I could be relisted.  I fought along side them by maintaining a positive attitude.  At one point a SWAN was inserted into my jugular vein  (I began to think my jugular had a "poke me" sign on it or something. lol).  The SWAN revealed I had pulmonary hypertension. 

A SWAN (pulmonary artery catherization) is inserted into the right side of the heart and arteries going to the lungs.  It is used to measure the pressures going into the heart.

One of the specialist told me that he had a gut instinct to order the SWAN and it saved my life.  If they had transplanted me with that kind of pulmonary pressure I, undoubtedly, would have died on the operating table.  

All my life I had heard Romans 8:28 (For we know that all things work together for good to them that love God...), but in that moment it became real to me.  I was awash in gratefulness, regardless of the hard spot I was in.  It was a reminder that God was still looking out for me, even though everything was seeming pretty hopeless.  I clung to that act of providence, and it fed my faith.

During that time, the lady across the hall must have been dying.  By then COVID rules were in full force, so no visitors could come and go except for rare cases when someone was dying - without COVID.  But suddenly all of the curtains were drawn and I could see the feet of several people entering her room.  Then what I heard was music to my ears, prayer.  It was the kind of prayer that rings in the rafters and sends chills down your spine.  Someone in that room had a Pentecostal experience and was intent on getting God's attention.   I was so surprised!  I joined in their prayer... not only for that lady, but for me.  

It's easy to get swallowed up by the bigness and the sterile atmosphere of a hospital like Cleveland.  It was especially lonely during COVID when it was new to see everyone wearing masks under shields over their face or eyes.  I felt I had support, but like everyone was so far away. So it was beautiful to be reminded that in the middle of my darkest nightmare, I was physically not alone. Others of like faith were fighting their own battles right there beside me.  I wasn't the only one praying there. It kind of opened me to putting my own needs aside and becoming aware of the suffering and needs of those around me.  I began praying for others when I saw their needs.  The strangest thing is that I stopped feeling like death was stalking the hall, and started feeling like there were angels there instead. 

August 15, 2020

SWAN (yellow) and Dialysis

My neck:  the favorite target

Facing a Huge Setback

 I spent most of August in the Cleveland Clinic Hospital.  I started out on the regular floor, but as my MELD Score climbed to 36 and my condition deteriorated, the doctors believed I was bleeding internally and started blood transfusions. I recall a kind doctor sitting by my bed and asking me if it would be all right for them to move me to the ICU so they could do some tests more quickly.  I agreed.  Boy was I in for a shock!

There were two tests they needed to do right away:  an endoscopy and a colonoscopy.  What they didn't forewarn me was that because of my condition, they couldn't risk giving me anesthesia.  The probability that I'd go into a coma was too high.  I didn't want to risk losing my opportunity for a liver, so I agreed.  They did an endoscopy and colonoscopy bedside, with no medication or sedation. 

Let me tell you... I will never agree to that again in this lifetime.  It felt like someone was playing a violent game of racecars going over massive speedbumps at 100 mph inside of me.  I don't know if it was because I was so sick, or if it always feels like that, and that's why they give you sedatives to do the procedure.  Every procedure I had during that period was without sedatives.  It was honestly traumatic.  They couldn't find the source of any bleeding, regardless of the tests they ran.

I was too weak physically to resist or make a commotion.  I wanted to live badly enough that I probably wouldn't have fussed regardless.  In the quiet moments, I began to take in my surroundings The ICU had dividers and curtains, but no doors.  I could see the two people across from me and kitty corner.  Both of them were comatose and on life support.  I heard the emergency team intubate the man on the other side of the divider. I could literally feel death stalking the halls of that ward. I later learned that few people ever left that ICU unit.  Most patients died there.  The nurses lined the halls and cheered when I eventually left.  I refused to give in to fear of death. What flicker of life that was left in me fought to hold onto hope and believe that God would step in and everything would be okay.  

The next thing I knew, a doctor was apologizing that I had to be removed from the transplant list.  I was simply too sick and wouldn't survive surgery.  In that moment, I was devastated beyond words and filled with anger.  I was not going to accept what that doctor said!   I had been listening to my church's livestream feed and service was in progress.  I knew that when things are impossible, that God is the master of the impossible.  

I texted my son, who was in that church service.  I told him the news and wanted him to ask the church to pray for me.  He went to the platform and showed our pastor the text.  I saw him step to the pulpit and have the church go to immediate prayer for me.

If you've read the story in the bible where the lame man's friends tore the roof off a building to lower him down to Jusus... that's how I felt.  That's when my pastor, church, family and my friends began to carry me.  I honestly could feel the strength of all the prayers being lifted up for me.  

August 13, 2020

Dealing with being taken off the 

transplant list.

Side Note:  If you listen to the video, I talk about the difficulty of lifting my head.  I later found out that I was clipped to the bed with the dialysis cords - that's why I couldn't lift my head.  I laughed and laughed over that.  The humor was good medicine.  

Confusion Sets In

I found myself back in the hospital on August 3, 2020.  My MELD score had climbed to 28. My kidneys were again failing due to my Cirrhosis, and I was ballooning with fluid.  The doctors limited me to one liter of water per day.  I felt desperately thirsty and begged for more to drink.  At first, I joked around with the doctors, showing them these two pictures and saying my goal was to look young and healthy again, but this is what I would look like when they were done.  

  

We all laughed.  My humor about it held for a while.  At this point in the COVID pandemic, I could have one visitor who could come to see me, so my husband would come on the weekends.   When he would bring a drink that weekend, I would beg him for a sip.  He's not a rigid rule person, so he would say I could have a sip. Then I'd drink his whole drink and try to shake more from the bottle.  Then he stopped bringing his drinks to the room.  

About that time, I began to demonstrate signs of hepatic encephalopathy.  I was confused, I couldn't answer basic questions about the time, who was president, and general questions.  They even moved my room to outside the nurse's station, and I was totally unaware of the change.  I remember my husband sitting there talking to the doctor, then the doctor asking me to put my hands out in front of me. He looked at my husband and nodded.

I was unable to follow their conversation in my state, but I knew what the test was about.  If you have hepatic encephalopathy, when asked to put your hands in front of you with your palms forward, they will move backward and forward (flap).  In that moment, I knew that I had it, I was angry that they wouldn't give me more time to answer the questions (I wanted to prove them wrong), but I was unable to express my frustration.  I soon just fell asleep.  I was doing a lot of sleeping. Sleeping is part of the progression of death from Cirrhosis:  sleeping encephalopathy, coma, death.

After a few days, I began to come to my senses a bit.  The doctor explained that their attempt to limit my fluid too drastically had increased the ammonia levels in my brain, which caused my deterioration.  Once they brought my fluid levels to two liters of fluid per day, I was still pretty foggy, but I could communicate and understand what was happening around me.  

Adapting

 After my hospital stay in July, I knew the end was very near.  Even though reality would creep into my thoughts, I still didn't give up on hope and belief that God would see me through, and the doctors would get a liver for me in time.  I was tired, sick and miserable.  I had bloody sores and scabs all over my body, because I constantly itched from elevated bilirubin. When I went to sleep, I'd scratch myself in my sleep until I bled.  I wasn't sleeping well either, so I moved into the bedroom that had been my daughter, Anita's, so my husband could get a good night's sleep before going to work.  I began staying in the bedroom all day while the men were away, because I was afraid to go up and down the stairs alone.  I had been falling down them and really struggling to get up them.  The problem with staying upstairs all day was that the kitchen is downstairs.  I wasn't eating.  When the guys asked me if I needed anything, I would say no - mostly just because I was too tired to think about what I wanted.  

One day I realized I needed help.  I had been planning to go stay with my parents after surgery for a few months because I would need around-the-clock care, so why not now?  I needed them.  Of course, Mom and Dad were only too happy to have me with them.  They were worried about me, and now they could keep a close eye on me.  The downside was that they got a close up look at how sick I really was.

One other thing happened in that space of time that would cause me a lot of mental anxiety during the coming months.  Andrew took me to an appointment in Cleveland.  It was really early so we went the night before and stayed at a Red Roof Inn nearby.  We had just gotten into the room when gun shots erupted.  I counted five and they sounded like they were right outside of our room (we later found out there were in a room above us).  We heard screaming, people running and a car squealing tires as it sped away.  I dove between the beds and called the front desk to ask if there were fireworks nearby or I was hearing gunshots.  She said it was gunshots, to get away from any windows... the police were on their way.  

I'm normally a very steady person, but my mind wasn't clear. Things were very foggy at that time for me. When you suffer from last stages of Cirrhosis, ammonia builds up in your body and is stored in your brain.  It affects your thinking and emotions.  The treatment is massive doses of laxatives to try to get things to pass through your body before the ammonia is absorbed.  I was terrified at the sound of shooting and could only imagine someone was walking down the line of rooms and shooting into the windows.  I hid in the bathroom and begged Andrew to come with me.  He didn't. He became the adult protecting and taking care of me.

We had no idea of what had happened.  No one told us.  We did get a refund on the room bill though! lol  The next month when I was again hospitalized, my husband asked around and discovered that it was a hit.  A young man took a shot to the stomach, had surgery and survived. However, in my foggy mind, that feeling of fear that was unleashed that day floated around in the background and later came back to haunt me.  

July 2020

Swelling and jaundiced

July 4, 2020

 This post is hard for me to write.  I've started writing it three times... and broke down in tears remembering.  Even though this is the most emotionally painful moment in my life, it is also the source of the greatest gratitude of my life.  Every time I'm together with my kids and grandchildren this event makes those moments we share so much more precious!

The week of July 4th is our usual family vacation week.  In 2020 the kids came home.  By then I was too sick to travel.  I did my best to enjoy every minute, but I was so sick.  On July 4th we rented a pontoon boat to enjoy the afternoon on the lake.  I remember laying in the boat and just watching my family around me.  In my heart, I was crying.  By the end of the day, I was so sick I had to go the emergency room.  We were only 3 days into vacation.  The image of my kids and grandkids standing on the porch and waving goodbye is etched into my brain.  The reality that this moment could very well be the last I would ever see or hug them, and the last memory my grandbabies would have of me, hit me like a tsunami.  I was overwhelmed and emotionally crushed when we pulled out of the driveway that day.

My transplant coordinator had told me that I could go the UPMC facility emergency room, but if my MELD score was 22 or above, I needed to be transferred to Cleveland.  Once again, the medical team didn't understand MELD, but they did a wonderful job of catching up on it and contacting the transplant team.  I was taken to Cleveland via ambulance.  After a day or so, it became clear that I would not be going home to finish the vacation, so Anita and her family headed back to North Carolina.  Vacation was over.

At the hospital, they discovered that my kidneys were failing (Stage 3) and my heart was struggling because of the massive amount of fluid my body was retaining.  I was puzzled because I was taking diuretics and on a restricted fluid intake and following it closely.  One doctor explained that my red blood cells weren't able to retain their water and fluid was being distributed into all of my tissue.  I stayed for a week while they gave me dialysis and IV diuretics.  My fluid levels came down a bit and my kidney function stabilized.  I was thankful to be going home again.  

Ready to head home from the hospital in July 2020

with a bandage from dialysis.

My Support System

Along with my faith in God, my husband's sense of humor kept my spirits from staying down too terribly long.  I remember going to Sam's Club.  I asked him to drop me off at the door because I knew I couldn't walk across the distance of the parking lot.  I don't know why it embarrassed me, but using the electric carts always did - even though I knew I had no choice.  This particular time he walked through the door after parking the truck with his camera on and started videoing walking around me 360 degrees in the cart and describing the specs like he was a race commentator and I was just waiting for the shot to start.  He followed me into the store commenting on the turn radius and the power.  He was always egging me to make it beep when people blocked the aisle.  If I wouldn't, he would mimic the sound and pretend I did it. I couldn't help but laugh, relax and enjoy the ride.  

Did you know that if you don't have a person who will commit to being a 24 hour/day caregiver, you have very little chance of being listed for liver transplant?  My mother became my dedicated caregiver and legal guardian.  She and Dad would care for me around the clock in the months following transplant.  In the meantime I came to rely heavily on my daughter for moral support, my son to drive me to appointments, act as a nurse, grocery shop, menu plan and cook, while my husband kept the household afloat.

Outside of my immediate family, I also had a strong support network.  My minister, his wife and my church family held me up in prayer, brought meals, sent cards and words of encouragement.  My Facebook friends became a huge support.  At times I would be overwhelmed with gratitude to know how many people and entire churches across the country and around the world were praying specifically for me.  My coworkers were all rooting for me and encouraging me as well.  I felt humbled and loved to have so many people in my life who cared about me.

Throughout the first half of 2020, my strength diminished very quickly.  I stayed working as long as I could, but everything was getting foggy.  I realized I was having difficulty when I tried to create lecture videos.  My sentences were getting broken, pauses very long, and I didn't always hold to a train of thought.  I was putting files in the wrong folders on the computer and really struggling to focus.  By the end of February, I knew it was time to quit working and rest.  By May I had quit driving, getting groceries or going anyplace that didn't have an electric cart. Even then I'd often stay sitting in the truck when my husband went into stores.  I wanted to be out of the house in the sunshine, but that was even taxing on my strength.

The couch, my hammock swing and my hammock became my life. I didn't want to just give up, so I planted a container garden to give myself something small to do that was enjoyable - although to be honest, my son did most of the planting. I mostly watched the vegetables grow and watered them twice a week.  I watched tons of cooking and gardening videos online, I called and talked to my mom and my daughter nearly every day, and tried to do things daily that made me feel like I had accomplished something.  In time, my To Do list shrank to one thing, but I did give myself grace.  I knew how much effort that one thing took for me to accomplish.  

My Family Support System

    

Caregivers/Guardian:  Mom and Dad

Nurse and Helper:  Andrew

Inspiration:  Kaya, Noa and Isla (This is the photo I made my phone wallpaper to remind myself why I was fighting during the hard times... and to show off to all of the nurses and doctors. lol)

Spirit Elevator and Stabilizer:  Wayne

Medical Advisor and Spokesperson:  Anita