Ed Brooks - A Love Song
By Brenda McDonald
Sitting on our patio in the evenings was always a special place and time for us. There was something magical about it and still is. For years I had been joking with Ed about writing me a love song. He had a special way with words, played guitar and sang. I thought it appropriate he write a song for me. This particular evening on the patio in July 2009, as we were holding both hands and looking straight into each other’s tear filled eyes, he told me not all love songs are written. Some are lived and we had lived the perfect love song but the last verse was being written now.
Ed was diagnosed with IPF just two months earlier in May 2009. His breathing capabilities worsened very rapidly and we were fortunate enough to be able to begin seeing Dr. Lake Morrison at Duke as his pulmonologist. Dr. Morrison and the staff with him were wonderful, Jaala and Melissa in particular. We were facing death square in the face with this disease and they let us know there was hope.
The caregiver role in the transplant process is like none other. I had been my mother’s caregiver before she died but that did not prepare me for this journey. Ed was a very active person who loved and lived life to its fullest on a daily basis. To see that person become so limited was so very sad. I ran the mortgage division for a bank that was shut down by the Feds just a couple months after his diagnosis. As an executive level person, I lost my job immediately when the new bank the FDIC chose took over. This turned out to be a good thing. He had gone downhill so quickly in those couple months I did nothing about seeking other employment and
devoted my time to managing his health care. This was the biggest job I would ever have. For his mental health, he chose to go to work each day. As the weeks went along this became more and more of an ordeal. My life became getting him up and helping him get ready for the office. Oxygen had to be loaded in his truck each day sufficient to last him until he could get home. He worked with some
amazing people who loved him dearly and they began waiting for him to pull up in the parking lot and would meet him to carry in oxygen, etc. to his office. During the day I would be getting oxygen deliveries, coordinating doctor appointments here and at Duke as well as taking over all household duties. There were things we had always paid others to do but with our income diminished dramatically, I
took all that over. During this time I learned so much about oxygen and how that could be dispensed. We experimented with many different forms until we hit on something that worked best until his needs increased and we had to change all over
Finally Ed’s lung capacity reached a level that Dr. Morrison thought it time for us to be evaluated for the transplant. It was November and we were in Durham for a week of evaluation. I recall how stressful this was and how exhausting. I felt like his life was being held in their hands and I guess it was, from then on. We had to
pass all the tests to make it through to the next level or go back home and die. It is easy for me to say we and our instead of him because this was a partnership. I had as much at stake as he did because I thought surely my life would be over if he died. My journal entry for November 13 says in part “I just pray for the strength
to be able to be there for him no matter what his needs. The bottom line is I am so scared”. That scared feeling lurked in the recesses of my mind for some time, in spite of my faith.
During evaluation week we met some wonderful and amazing people who are still so important to me. The closest relationships were formed with other transplant hopefuls but relationships were also formed with some of the transplant team members. We were back home on Friday to begin the wait for the call of whether we were accepted or not. Tuesday evening before Thanksgiving the
phone rang and I saw it was a 919 area code. My heart was pounding the second I saw the Duke number. We made it! There were stipulations and more hoops to jump through with tests but we were at least being given a chance. One of the stipulations was that Ed lose weight. What a challenge when he was on heavy
doses of prednisone and couldn’t work out. He was in pulmonary rehab locally but that wasn’t helping with weight loss so much. He put all his effort into it though and we would even walk inside the house just to move and perhaps burn some calories.
Our diet was modified even more and Dr. Morrison cut back the milligrams of prednisone to help with the weight loss. By Christmas he was pretty sick and I wasn’t certain he was going to live long enough to get a transplant. Always, always, always his attitude was positive and he had a smile on his face. Finally in January 2010, after sufficient weight loss and getting through a couple more
medical follow up tests, we were able to move to Durham and begin pre-transplant rehab at the Center for Living. We saw our old friends from evaluation week and forged even stronger bonds with them. When you are going through a life and death journey together those bonds become so strong. I saw a couple people come and go from rehab each day and pretty much stay to themselves. I have a hard
time understanding that because the comfort in the sharing process was so very important to Ed and me. The blessings we received from getting to know some of those people are unexplainable. Sometimes it was just a knowing look, smile or hug. We encouraged each other, worried about each other and rejoiced when someone got “the call” to get their new lungs or any other success like walking extra laps.
On February 26, while at the Center for Living, my phone rang and we got the notice that Ed had been activated. We didn’t have to wait long to get the first call to come to the hospital. Of course, we were prepared by the team for dry runs and that first call on March 1 was just that. We were at the hospital about six hours before we were given the word to go back home. The next call took longer and
even though it was only 6 days we had our appetite wetted and were ready for a transplant. March 7 at midnight we got another call and by the time we arrived at the hospital we were called to go back home so we didn’t even get admitted that time. Got a little sleep and at 9am was called again. At 6pm we were sent back home again. What an emotional roller coaster. We made the decision not to tell
family or friends about all these calls until we knew it was a go for surgery so we were going through all these dry runs alone – except for our transplant family. They shared the joy and disappointment with us because some of them had gone through the same experience.
March 9, 1:45 pm - one more call. We leave rehab and go home to get our pre-packed bag again and head to the hospital one more time. Went through all the prep again and waited. We waited. We waited. Remembering things in hindsight that Ed said to me, he knew this was it. At 7:30 pm we were told the lungs were ours and it was a go. Oh my God! I wanted that call but now I was scared
to death. I was excited. I was happy. I didn’t know what to think. Calls now had to be made to family so they could come to the hospital. In between all the prep, Ed and I shared some soul touching moments until he was whisked off to surgery a little before 10pm. As could be imagined it was a long night and at 5:30 am Dr.
Davis came out to tell me all was well.
All during Ed’s illness I had a note taped to my computer screen that said “Do not be afraid of tomorrow for God is already there”. Seeing this on a daily basis brought me great comfort and no more at any time than the hospitalization. All was well the first day and night. I was so excited to talk with him, to look into
his eyes again and see his love for me even through the fog of the drugs. Joy, elation and thankfulness turned into chaos very quickly. He developed a massive thoracic hemorrhage and was sent flying down the hall past me, with docs and nurses hanging all over his bed, for emergency surgery. I will forever be indebted to his nurse, Jason Gough, for being astute enough to realize in a split second there was a major problem happening and for being my emotional rock at that time. Out of surgery and all well again. I considered this a setback but not one we could not overcome. Ed’s entire life was spent being athletic and extremely competitive. I knew he would work harder than anyone to get back to normal, or as normal as
he could be. The first couple days were great. Walking with him down the hall so soon after two major surgeries was like a miracle to me. All the hope we had was being fulfilled.
After those first couple days there were so many ups and downs. Anxiety set in for him. He would beg me to stay because he said he could not breathe if I was not there with him. He thought the night nurse was trying to kill him and an assortment of other anxiety issues. He began to develop all sorts of physical problems at this point also. Through it however, he pushed himself to walk because he knew from our classes this was critical to getting well and
out of the hospital. That competitive spirit of his was still there and with some encouragement from me I really thought we could overcome whatever this was. Individually, maybe not, but together there wasn’t much we couldn’t do. We always had a joke about this in fact. A daily ritual was to do a crossword puzzle together and at its completion one of us would say “together we are something and
can do anything”. Ed and I met dancing and were actually quite good during the heyday of two stepping and swing in the late 80’s, early 90’s. We even danced competitively and had talked about getting back to dancing as a form of exercise when he had his new lungs. To encourage him to walk I would assume my dance position in front of him and “two step” backwards down the hall as motivation for
him. I won’t ever forget that “last dance” we had down the halls of 3200 Duke Hospital. As the song says, “I could have missed the pain but I would have had to miss the dance”.
So much happened in the next days and his status deteriorated. The docs were frustrated because they couldn’t “fix” him. If Jason Gough, our nurse, was my rock that second day in the hospital, Dr. Alan Simeone was every day after that. I truly don’t know what I would have done without the confidence I felt in him. In addition to the confidence I felt in his knowledge and skill, his compassion for
what I was going through and what Ed was going through is immeasurable. I will never, ever forget him. The staff on 3200 and the transplant team were special individuals who deserve all the accolades I can give them also.
On March 30 Ed was put on life support to buy time that day to determine if anything could be done to save his life. I sincerely believe everything possible was in fact done to save him but on March 31, with no more hope, in the early morning hours I made the decision to discontinue life support. By this time all of Ed’s family had gathered at the hospital. My two favorite RN’s, Jason Gough and
Nicole Martin happened to be working and were there, Dr. Simeone, who I don’t think left mine and Ed’s side for a couple days was there also. I nodded at Nicole for her to shut down life support. Quiet came over the room with the equipment off. His brother Steve sang one of his favorite songs, Mr. Bojangles, as his life on this earth ended at 8:43am. They allowed us to make his passing a beautiful thing.
I have been asked many times if it was all worth it. The answer is a resounding yes. Remember, I would have had to miss the dance. I do believe Ed would have died by the end of March anyway without the transplant. Because of the journey God sent us on I have met some wonderful people and many of them I now count as my friends. Staying in touch with other transplant patients and families makes my heart sing because of their successes. I find joy in that.
Our transplant story doesn’t end with Ed’s death. We discussed early on in the rehab phase of our journey about giving back to other transplant patients and families. I have not found that place for me yet but will.
We had a love like none other, together on earth, for 20 years. When he was initially diagnosed we both knew, just knew, without voicing it, he would not live long, no matter what. I don’t believe the last verse of our love song was written though. He made me a better person and I will use that to continue sharing his love for life and be an example to others to live their lives, really live their lives, every day. The love song will continue.
