It's Not Easy Being Green! By Joan Costello

The kids finished college and  married.  Ed and I stumbled across a decrepit old mini-mansion (built in 1855) in Indiana.  It had been abandoned for several years, had 11 rooms and sat on 135 acres.  We bought it, and it turned out to be a wonderful summer place for all the family to gather as the 5 grandchildren started to arrive.  It kept us busy for the next 20 years restoring and remodeling.  One of Ed's pleasures was sitting on the back deck, and looking over his fields.  Life was beautiful. When we weren't in the city working, or at the farm, we traveled; back to his father's native Ireland, England, the Caribbean, cruises, and trips through out the states.  We couldn't believe that 2 green kids from the south side of Chicago, had gotten so lucky.

While doing the above, we moved my mother into a condo in our building.  She was 76 and had been diagnosed with colon cancer.  After her surgery, I took early retirement to care for her.  Ed put his business up for sale. We planned to sell our city place and move Mom to the farm along with us.  Ed was awfully tired all the time and I thought he needed to get away.  My sister stepped in to care for mom and we headed for Vegas.  While there, he had difficulty walking 15 feet, and his lips and the bridge of his nose had a blue tinge. When we returned home he saw a doctor, and she advised an ABG test.  He put that off for almost a year. Finally, he went to the hospital for an ABG and they admitted him right into emergency.  His blood oxygen level was 41 and Ed was sent home on June 13, 1997, (our 44th wedding anniversary) on  3L of oxygen 24/7.  They had diagnosed Ed as severe end-stage Emphysema.  His left lung was totally destroyed and only 1/4 of the right lung was functional.  His FEV1 was 15.  Suddenly, our old buzz-words weren't any good.  Neither of us were working, and one of us wasn't healthy.

I was totally exasperated with all the health care professionals.  No matter how I phrased the question of "What can we do about it?" the  same answer kept coming back "Nothing".  His internist was more sympathetic.  As she was explaining how severe Ed's COPD was, I tried to make light of it, by saying that we had someone else doing most the work for us at the farm, he never really liked to dance, and it was Ed's habit when playing baseball with the Grandkids, to pay one of them to run the bases for him anyway.  So Ed didn't have anything to worry about, we'd do just fine! Tears were in her eyes as she referred us to a pulmonary specialist and the Pulmonary Rehab program affiliated with Northwestern Memorial Hospital.

Next shock.  He did not qualify for a transplant! While he met the criteria of being off cigarettes for 6 months, there was over a two year waiting period in the Chicago area.  Since Ed was almost 63 he couldn't make the list.  We were almost in full denial at this point, not believing anything anyone told us.  He enrolled in the Rehab program and I accompanied him to all 16 week sessions in order to learn everything I could about this terrible disease. When rehab was over, we bought a treadmill.  He worked out religiously with Ther-a-bands and the treadmill every day.  He could still drive, but getting to our car garaged  24 floors below and walking to the next building was difficult.  I convinced him to try a wheelchair.  It helped.  He could get out a little more.
 

Joan's Mother, Kelly  Standing, Joan and Ed

Then a ray of hope!  One of the Pulmonary Rehab nurses called and told us about surgery that was experimental, but perhaps would help Ed.  LVRS!  Our daughter got on the web and researched it for us.  The Doctors apprised us of the odds, and Ed made his decision that if he qualified for it, he would have it, rather than spend the rest of his life wondering, what if?  He started all the testing in October of  97.  His pulmonary specialist was not sure Ed could be helped by it, and the LVRS surgeon was noncommittal. Ed had the surgery on April 9, 1998, and we spent our 45th anniversary at post-surgery rehab, promising ourselves a real party next year.

Ed and Mike

There was no dramatic recovery.  Ed did not walk out of the hospital without oxygen.  He went in on 4 liters and came home on 3 and was told to turn it down when resting until he healed.  For a short space of time he felt a little better and really gave it the "old college try".  Our doctors told us that it was not like going to Lourdes and getting a miracle cure.  People mend differently.  We were not satisfied with their answers and I bought our first computer in September of  98.  We found the COPD list in November of 98 and it was a treasure trove.  We were able to chat with other people who had LVRS and compare progress.  Ed redoubled his efforts and restarted maintenance rehab.  I had "Automatic AOL" dump at 8 a.m.. and 4 p.m. and Ed was on deck for that.  If he didn't feel well I read pertinent letters to him while he sat in his wheelchair, or printed them for him to read later.  We soon realized that he was part of the 30% who do not benefit from LVRS.

We limited our social life to visits from kids and other family.  It was obvious that Ed was failing.  He was loosing weight and no amount of supplements or hormones improved that.  He still made it to rehab every week through early April, when he came down with a virus. He went on the usual prednisone burst and felt good again for a few weeks, when something else hit.  We were on the phone with his doctor's office almost daily.  Another prednisone burst and anti-biotics and instructions to go into Emergency; which he wouldn't do.  Finally on May 22, 1999, at 4:00 p.m. I called an ambulance.  Ed's breathing seemed shallow; even though he said he wasn't having any trouble.

When we got to ER his C02 level was 125.  Normal is 30 and for Ed as a C02 retainer they were shooting for 60-70.   The Doctor asked if Ed had ever voiced any thoughts about going on a ventilator.  I told him that we had not discussed it and I would not make that decision without talking to my husband.  They took the decision out of my hands and intubated him.

He was on the vent for a day and a half, and off it for 2 days, feeling better, and starting on a soft diet when I left the hospital that evening.  At 8:00 a.m. the next morning I had a call from an I.C.U. nurse who told me not to rush in, but my husband wanted to talk to me before the doctor came in. I ran over there, and Ed informed me that they had wanted to reintubate him during the night and he refused.  They could not promise him that he would ever get off the vent; he would need a feeding tube, be voiceless, and "for an Irishman, that's a hard thing to live with." He had made the decision, so the kids or I wouldn't have to.  He did not want me to override his decision as we each had "Health Power of Attorneys" for the other.  I prayed that the whole discussion was academic.  I reminded Ed that the doctor had given my mother 6 months to live and she lived for 2 years.  When Ed's doctor came in he was grim, and assured me that the discussion was not academic. They moved Ed from ICU on Friday (May 28) to a nursing floor, to see if he could exist on oxygen therapy and "in-house rehab". They began supplying 40% of his oxygen.

We did not spend any time discussing death. When Harry Caray  (Take Me Out to the Ballgame) died,  Ed made a particular point to me of how much he admired Dutchie's handling of the situation.  Dutchie held a memorial service and invited everyone to Harry Caray's Restaurant to celebrate Harry's life. Ed said that was what he wanted - an Irish Wake - a celebration of his love of life, not his death.   We had discussed cremation years ago and were in agreement on that.  I told Ed that I informed the kids of his decision and they were coming in; he replied "I have been proud of the kids all my life, tell them not do anything dumb now." Of course when I related that to the kids it took 6 inches of makeup for Kelly and me to cover our eyes and Mike donned sun-glasses.

Our vigil began in earnest on Sunday.  Ed was now on 60-70% oxygen.  He was given small doses of morphine to ease pain, and was lucid.  We talked quietly thruout the day and Sunday and Monday evenings we took turns sleeping in chairs and a pull-out bed in Ed's room.  I reiterate that Ed did not seem to be in any pain at all.  He ate breakfast on Tuesday morning.  As his C02 levels increased, the morphine was increased and they added another relaxant.  Shortly after he refused lunch, he fell in to a light sleep.  We sat by his bedside and he would acknowledge us periodically with a nod or a wave of his hand.

 At l0 p.m. the respiratory therapist came in and checked his oxygen saturation. It was in the 50's on 100% oxygen.  She tried the pulse oxy on herself to see if it was malfunctioning. It wasn't. We called the hospital chaplain who came quickly and we joined in prayer while we waited for a priest from Holy Name to come and anoint Ed.  It was dark in the room and Chicago was in the midst of a huge thunder and lightning storm.  The priest initiated the last rites and for a few minutes it was a scene from my worst nightmare. The soon to be widow, struggling to control herself, and set an example for the children, who were torn by their own grief, and all 3 of us trying to comfort one another quietly, fearing  just how the end would come for Ed. Would he be inflicted with more pain? We couldn't stand that.  I had read articles that told of horrible endings.  It is with much relief that I report that Ed's breathing was easier than it had been in the last three years. He took several short breaths and slipped away from us peacefully at 11:50 p.m. on Tuesday evening, June 1st. He was 65.  Our daughter told me later that she was afraid we would wake Buddy (the children's pet name for Ed) during the last rites and he would throw all of us out of there.  She had composed her story that if we were wrong, it doesn't hurt to be anointed twice, and in fact, it might even help him.

We made an appointment with a chapel our family has always used for noon on Wednesday to begin to plan his "Irish Wake".

At 2:30 p.m. Sunday, June 6th, two easels holding collages of Ed's life stood between floral arrangements of a large gold harp and an equally large green shamrock .  At 3 p.m.. the Bagpiper led off with "The Battle is Over", followed by "Danny Boy "(Ed's favorite) and concluded with "Amazing Grace".  The organist did "A Little Bit of Heaven", "An Irish Lullaby", and "When Irish Eyes are Smiling." Ed's brother, John, and our children, Mike and Kelly did excellent eulogies.  Mike borrowed from Julius Caesar, saying "We came here to praise my Father, not to bury him".  There wasn't a dry eye in the place.
 

Everyone was invited to a reception at "Killarney Castle".  I had instructed the Irish musicians to keep everything light and uplifting.  They started off with "South Side Irish" which is a kind of rallying song for Chicago's large south side Irish population. Our two granddaughters presented everyone with a little gold shamrock lapel pin as a memento of Ed.  Green Carnations decorated the tables.  Drink and food were abundant.  We had corned beef and cabbage, carrots and boiled potatoes for the main course. The musicians ended the evening with paraphrasing "He's Got the Whole World in His Hands" to "....Ed Costello in His Hands" and everyone joined in.

There was one song that wasn't played that evening, but kept on running through my mind.  Kermit, the Frog's "It's Not Easy Being Green.."

Joan Costello
June 12, 1999
Jadece@rcn.com

In December of 1999, Joan began editing a compendium of News relating to COPD. The COPD-News sponsored by COPD-Support, Inc. is published every Friday on the web and via email. To see the latest issue go to http://copd-support1.com/news.html.