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

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

Faith - from my Experience.

 In my last blog, I mentioned the stages of grief one might experience when faced with their own sickness or impending death (denial, bargaining, anger, depression and acceptance).  The one experience I don't feel like I dealt with was bargaining (with God).  I really didn't.  I've had people tell me they admired my amount of faith, others encouraged me to have faith, while others called on me to reach deep into myself and stir up an enormous amount of faith to get God's attention. I'm not a minister and don't have any great theology to share; I'm sure there is validity in all of that.  However, I can only tell you what I experienced from my own perspective. 

I was five years old when I fell in love with Jesus.  One evening at church, as the music played, I lifted my hands and began to sing from the bottom of my heart to Jesus.  In that moment it was as if the heavens opened and His Spirit descended all around me and over me, and I knew for myself that he was real. Not only was He real, but He took a little five year old girl seriously and responded to her. It was the bud of lasting relationship that blossomed and has never faded.  As a young girl/woman I can remember often praying this prayer:  "God I want you to be pleased with me.  When your eyes travel through the earth, I want you to smile when you see me.  Help me live a life that brings joy to you." I haven't lived perfectly, but I have lived loving Jesus.

Faith to me has been an extension of that kind of loving relationship between two souls that have shared a lifetime of love and experiences together.  It wasn't something I had to dig deep to conjure up.  It just was.  I believed I was in God's hand.  I talked to God about the things I was going through and was confident He cared.  I asked Him to heal me and help me.  I remembered all of the times He had in the past, and believed that whatever came, He would be on my side.

So did I have a lot of faith?  I honestly don't know.  I just quietly and simply hoped for the best outcome and believed Jesus would do what's best for me. I really don't see myself as having a lot of faith or lacking in faith.  

Me at 5 years old

The Way Maker Steps In

I can't count the number of times God stepped in and made a way when there seemed to be no way over the last twelve years.  My husband tells me every time I worry about something that I know God will take care of it for me, not to worry.  He's right, of course. I remember a pivotal point in my life when it seemed that God started showing me that He had my back.  It was September and my first year as a single Mom.  I was barely able to put food on the table and keep the utilities on, but I needed tires and had no idea how I was going to pay my propane heat bill or afford Christmas that year.  One day, I believe it was the kids' bus driver who handed me a $20 bill and said, "I feel led to give this to you.  It isn't much, but I asked God to multiply it for you."  It started multiplying that day.  Someone else handed me $50, I went home and opened the mailbox to find a card from a friend in Indiana with $100 in it.  Later that week someone asked to borrow my car and returned it with all new snow tires.  By the first of October, all of my bills were paid through the end of the year, and I had Christmas money.  After many instances of God's providence like this, you'd think I'd give up on worrying. lol

I had a new problem to needlessly worry about.  It was May of 2015, I was recently diagnosed with Alpha 1 Antitrypsin Deficiency and I needed weekly infusions of Prolastin C.  

 

Prolastin C is an Alpha 1 Proteinase Inhibitor made from human plasma.  It takes one year to make and requires dozens of human plasma donations for each dose.  Its purpose is to coat the lungs of the Alpha patient to protect them from sustaining more damage.  Without the coating, little holes develop in the lungs' alveoli and emphysema symptoms appear.  Prolastin stays in the patient's system for 7 days, so weekly infusions are needed.  The cost for this medication is $13,000 per month.

I was teaching at a business college and had insurance, but it only paid 80 percent of my medical costs.  I did the math and knew I couldn't afford $2,600 a month for the medication.  I prayed and worried, of course.  But I didn't have to worry long.  My company changed insurance every year in July, so in June we got an email inviting us to the annual insurance meeting.  That year, for the first time ever, the company was able to get insurance with a $5000 deductible and 100 percent coverage.  So instead of $31,200 per year, I could get the medication for only $5,000 per year.  I was amazed and grateful!

And so I began my weekly infusions.  Medication was shipped to me in small bottles (6 for each dose).  I'd receive a month's supply, which had to be refrigerated.  I'd take them out the morning of my infusion (cold liquid into the blood stream is pretty uncomfortable and not a good idea), a nurse would come, set up an IV, and infuse the medication.  It took about an hour for the infusion.  The stick of the IV needle and a bit of shivery coldness were the only discomforts of the procedure, so I adapted quickly and didn't mind it.