Category Archives: regina’s fight

6/19/12

She wasn’t waking up. She looked beautiful – her skin was pink, her lips red, her hair was combed and in a pigtail, her water weight had come off, she was peaceful and calm. But she wasn’t waking up. It was hard to tell if her brain functions were working – tests weren’t conclusive. The only way to know if she was okay was to observe her if she would only wake up. It had been over a week since she had responded to some words and a tickle on her right foot. Since then, nothing. She was kind of a Sleeping Beauty. I visited every day and stayed with her but she wouldn’t respond to touch and words.

It was becoming pretty obvious – at least, to me – where this was headed. I couldn’t admit it to myself in words but my logical, practical, realistic side was starting to turn on the warning radar. This was probably not going to end well. It was starting to get hard.

Doctors had told me that they couldn’t keep her on machines indefinitely. Tomorrow would be the day. They needed to get her off the many machines that were keeping her comfortable and let her pick up the load. She needed to start fighting the battles on her own, now. Tomorrow would be the day. No one, including the doctors and staff, seemed very positive. Their faces betrayed their words. They looked tired, frustrated, and overwhelmed.

Her entry into the passage was beginning. I was starting to feel alone.

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6/12/12

This is Heart Day. For a few hours, at least, Regina had a strong, healthy, young, powerful, beating, rhythmic, fully-functional heart.

Photo Aug 11, 11 09 29 REV

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6/8/12

This is one of my favorite pictures and this was one of our happiest days together. It was a Fri afternoon and we were leaving WHC. It had been a long, difficult spell in two hospitals for about two months. We felt good about things, albeit a bit nervous, and were happy to finally be going home and getting some rest. This is one of the prettiest pictures I have of Regina. She is glowing. See Tate sitting on the center console to Regina’s left? Tate is who was keeping Regina alive. We were hoping to be able to depend on Tate for, possibly, many months until a heart became available. This was a good day.

rhome

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A Final Sleep

Heart transplant surgery began early morning Tues Jun 12. Unfortunately, Regina’s body rejected her new heart which subsequently led to cardiac arrest on the operating table. Doctors managed to physically massage her heart back but later I was told that there was a significant likelihood that the arrest had led to brain damage and possible liver, lung, and kidney failure.

Partially due to the rejection, Regina’s body would not clot blood. This being the case, she bled profusely internally. Huge amounts of blood were used to sustain her but new hearts, I was told, do not like the influx of new blood. Her new heart, after being resuscitated, labored and likely had been damaged in the arrest. It never fully sustained her thereafter.

She was put on lung, kidney, and heart machines in order to stabilize her. She revisited the OR several times in the coming days in order to get and keep her stable on the machines.

Surgeons later said the transplant surgery went very well. It wasn’t until it became obvious that her body was radically rejecting the new heart that things turned very bad.

In the afternoon of Jun 12 when doctors gave me their first update, they said she “was very sick.” I somehow knew things weren’t quite right when, after the suggested three to four hours for a normal transplant, no one had come to talk with me. I once asked the front desk but no word came out. I had a bad feeling. It was about five to six hours after going to the OR that I received news. It was a very long morning and early afternoon. It hit me that Regina might not make it.

I had walked with her on her rolling bed to the OR earlier in the morning. Finally, the nurse said, “This is the place.” Regina was crying and I felt very uneasy. She said, “I love you.” I said, “I’ll see you on the other side.” We held hands.

I was escorted to the OR waiting room. She was wheeled to the OR.

We had agreed to call Jun 12 “Heart Day”. We were going to celebrate it every year. It’s in my calendar even now as Heart Day. And she did get a brand new, healthy heart even if it all only lasted for a few hours.

Regina had never had a heart that worked optimally. Never. But she had been a wife, mother, teacher, walker, friend, and so many other things.

Funny. She did more with a broken heart than many of us do with healthy, strong hearts.

A few hours after surgery, Regina responded to nurses by moving her toes and her fingers. She wiggled them. This was a good sign. Maybe her brain and organs were ok. Maybe she just needed some triage care but then would be alright. Maybe just some time and patience was needed.

But Regina, after the afternoon of Jun 12, seems to have fallen into a deep sleep. She never responded again. She slept deeply, beautifully, gently, and peacefully for eight days…

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Night Trip

It was around 10:15pm on a summer Mon night, Jun 11. I wrote about it here.

When the call came through, I was in bed and Regina was getting ready. I took the call from Jessica at WHC. Regina was standing in the hall when I told her a new heart was ready. She said, “Oh God, not yet!”, and began crying. I had never heard her talk like this. I held her a minute then said that we needed to go. I told her that Jessica would be waiting for us at the front door of WHC.

We left about 20 min later. Regina, as always, already had her fly-away bag ready. It had always been ready for hospital visits for the past year or so. Snacks, underwear, toiletries, small Bible, a few books, ID and medical history info, reading glasses, slippers, living will, some plastic bags for dirty clothes, medications, some water.

There wasn’t much to do to get ready to leave other than to dress. It was quiet and dewy warm and starry outside as we got in the car around 11pm. It would take about 50 min to get up I-95 and through Wash DC from our house to WHC. There was very little traffic but there was some nighttime road construction near Lorton. We made it through ok, though.

It was during this drive up that Regina called some of you on my phone. She called Zak and Nick last. We were quiet in the car except for her short and tearful conversations with you. It was very hard to listen but at the time, I was confident that all would go well. These calls needed to be done.

Nick writes about it here.

We were tired emotionally and physically. Regina had been in and out of hospitals for the past six months. I remember that we were past weariness. We were existing on inertia and adrenalin. This had all required our entire investment of soul and mind and body and spirit. We had never invested in anything together so deeply and with so much commitment and hope. But then, it was our only option and it was all that we had left. There was not much to be said about it on our drive up. Our faith was completely in the doctors and staff at WHC who had worked with us so diligently and tirelessly the past month during Regina’s work ups.

This is where God seemed to want us to be. Nothing could have been clearer. Providence was mightily at work. We both knew this and had talked about it. Decisions had been easy the past few weeks – this was obviously where God was taking us. It was never a question in our minds.

Jessica had said to call about ten minutes before our arrival so she could get down to the front door to meet us. At around the US Capitol, I called Jessica and said we were a few minutes away.

And we arrived at WHC. I asked Regina if she wanted to be dropped off while I parked in the parking garage but she said she wanted to walk in together. I found a good spot in the near empty parking garage on the bottom floor. We got out and walked together across the street from the garage to the main entrance of WHC. Jessica was waiting at the front sliding doors for us…

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Home

One year. Friday. June 8. I brought Regina home from WHC. She looked great and felt good due to her new infuser. We were tired but happy. Concerned but relieved.

Things were under control. It was good to have her pitter patter in the house again.

Visit inzeeweb at Jun 8 and stimple at Jun 8

We were going to now wait a few months for a new heart…

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One Year May 10

calendarThis is a picture of Regina’s calendar from last year. It was one of many appointments that were scheduled but this was going to be an important appointment. Little did we know…

She was not feeling well at all – shortness of breath, very tired, barely able to move about for more than a few minutes at a time. Dr. Mousavi was concerned and wanted to go inside of her heart and have a look. This was a fairly standard procedure – Regina had had it done a number of times before. Basically, an insertion is made in the groin area and, amazingly, a small fiber optic camera device is then threaded up a vein directly into the heart. Dr. Mousavi then quite literally would have a look around.

We knew that this would probably be a two day procedure – preparation, procedure, recovery – so Regina was packed with overnight things. We went in early Thurs morning. She had with her her big, blue, cloth bag of nighty things for the stay. We needed to be at Potomac Sentara by 7:30am.

On our way up, we had stopped for an Egg McMuffin, hash browns, and some decaf coffee for breakfast. She really liked McDonald’s hash browns.

You’ve seen the photo below. It was a sparkling Spring day. We didn’t talk about much on our way up to the hospital. This was going to be an important visit – we just didn’t know how important.

Unfortunately, Regina’s balances were way out so her procedure was postponed until she could be brought back into balance. She was given large amounts of potassium and iron. We waited as the drip dripped and as she chugged down pill after pill at prescribed times for many hours. Slowly but surely her numbers came back to something normal.

It was late afternoon when she finally was able to go through her procedure. I remember waiting in the waiting room. I was the only one. It was cold. I remember thinking about how blue the room was. The chairs, carpet, walls. It was a very blue room.

The lab was now closed for the day. The lab receptionist had told me good night and had left by locking the outside door on her way out. She had left the TVs on in the waiting area but when she was gone, I went around and turned them all off. I sat in the room. Waiting. I was listening to music on my iPod and trying to read a book. But I was very distracted with thoughts.

Dr. Mousavi came out to see me. He was still in his scrubs. He said, “She is very sick. I’m sorry. We need to get her up to Washington Hospital.”

Then things began to happen very fast. She was immediately moved to a sort of cardiac ICU at Potomac Sentara to be treated and stabilized and then later, we were told, she would be moved by ambulance to WHC. As it turned out, we didn’t go until the next day. We spent the night in a room that was constantly lit and with a nurse that had been assigned to her full-time. The powerful drugs that were being administered could only be administered in a cardiac ward. The drugs actually made her feel very good – her heart pumped stronger, color came back into her face, and she started to feel much better.

We did much talking between her frequent naps during the evening and night. Next week was supposed to be Zak’s graduation from seminary. It was becoming apparent, however, that we weren’t going to be making the trip to Portland. It broke her heart and she cried about it. It was hard to tell Zak that we weren’t coming. It was very sad.

We had been told that she would be transported to WHC and that there doctors would decide what next to do for her. Dr. Mousavi assured us that the best place we could be in the DC area was up at WHC. He had already talked to the doctors and surgeons up there and they knew that Regina was coming. All they needed to do was get her a room.

Later the next day, some nice paramedics came into her room and moved her over to a transportable bed for the ambulance ride up to WHC. She was hooked up to machines and an IV drip so all of that had to be transported with her, too. She later told me that the paramedics were funny and happy people and that they had made her feel good going up in the back of the ambulance with lights flashing. When we arrived at WHC, they said good-bye and she giggled and thanked them for their encouragement and the safe ride up. They left us in her new WHC room.

Little did we know what was yet to come. Regina, over the next 45 days, was only home for two nights.

She never did unload the dryer of her final wash.

2012-05-10 07.53.30

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Out of Surgery

Jun 20 11:52am – R is out of OR and is being settled in CVRR. As best we can tell, she was in OR maybe three hours. Dr. Bond just left us. Three concerns: 1. Brain function – Will it exist when she wakes up? 2. Right ventricle – It is weak and will have to significantly pick up the load. It will have to work much harder in R than in the person it came from, it seems. This takes time. R is now on an RVAD. 3. Infection – R shows no signs of infection at this time but is exhibiting some tell-tale signs of possible infection. The drugs she is on may be masking the infection. All said, these are the three concerns Dr. Bond has with R right now. Now that she is closed, it’s time for her to wake up. It might take several days for this to happen but until she wakes and starts responding, there isn’t much that can be done to test her brain. Dr. Bond says her blood pressure is holding, her pulse dropped back into the 90s (though it continues to fluctuate up and down), and her lungs are functioning on their own now. Dr. Bond thinks that until she wakes, it is best for family and friends to rest and prepare for when she does wake up – “today or even as far out as sometime during the weekend”, he says. Dr. Bond says he understands the emotional roller-coaster we are on. He admitted he and his team are also emotionally drained and want to see this finished. I plan to go to the transplant support group upstairs in a few minutes. We will see R before we go home today – we just don’t know when.

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Make It Work

Jun 20 8:38am – Received confirmation that R is now in OR. ┬áThis is for real, this time.

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Surgery

Jun 20 6:33am – R is preparing to move to OR. I just gave consent for surgeons to close the slits on her legs that are still open from the last surgery. Doctors say she has healed nicely and the edema is down sufficiently to allow them to stitch close one or both slits. More battle scars…

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