Thursday, November 25, 2010

One of the things that has bugged me since day 1 is a fear that I gave up on Gess too soon. It all happened so fast. I know that might sound weird considering how sick he had been and how often he had been in the hospital, but I didn't think that he was so close to death. At times Gess said that he felt like giving up and I remember telling him that he wasn't sick enough to give up. His PFTs had taken a hit, but he was still in the high 30s and not on O2 consistently. So, this seemed like a bump (albeit a big one) in the road.

When I look at the "facts", i.e. his kidneys were failing, they had to discontinue antibiotics because of that, without the antibiotics his lung infection couldn't get any better, without his infection improving he could not come off of the vent, his body was not accepting any nutrition, etc., I know that it was time and I didn't give up too soon. But there is this nagging fear in my heart that I did. He was such a fighter and always came back from such bad places.

In the early days we was clearly fighting; trying to get the vent tube out of his mouth, insisting that the doctors try to take it out again and again, etc., but by the time I made the decision, he has been non-responsive for about 2 days. The only time he would have any sort of response was when they tried to suction out his lungs and he just appeared to be in excruciating pain. In sitting with him, I didn't sense any fight left at all. He already seemed gone.

I know that he didn't want to live on a vent and wouldn't want the life that he would have if by some miracle they could get him off of it. So in a sense, he had made the decision before, told it to me clearly, and I just had to verbalize it when he couldn't. But I could have said no, I could have said "keep trying." I could have fought for him longer. Should I have fought longer? My mind says no, but my heart isn't so sure.

Even after the decision I kept waiting for him to sit up and say "just kidding!" Even now, I keep waiting for him to walk through the door or to call me. I know that it is not going to happen, but my heart won't let go. What if I killed my husband? What if I gave up on him and failed him?

In the middle of the night I got the "bright" idea that I was going to try to contact his doctor and have him tell me that I was right, but I'm not sure that is appropriate, or would even help.

I just want to be at peace about what happened, but I can't. I miss him so much it hurts. I am tired of walking through these days without him. I know that we have a "real love" and that it was "special," but I still want that back! I don't want to be a widow. I don't want to do any of this. And I'm scared.

Tuesday, November 23, 2010

To Gessner

i carry your heart with me

i carry your heart with me (i carry it in

my heart) i am never without it (anywhere

i go you go, my dear; and whatever is done

by only me is your doing, my darling)

i fear

no fate (for you are my fate, my sweet) i want

no world (for beautiful you are my world, my true)

and it's you are whatever a moon has always meant

and whatever a sun will always sing is you

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life; which grows

higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

(e.e. cummings)

Monday, November 15, 2010

Day 1

Surprisingly I was able to sleep, probably thanks to pure exhaustion and ambien. I woke up to hear that a friend, CP, was on her way over with breakfast. And that she wasn't taking no for an answer. The tears kept coming, but it seemed so surreal. And then my phone started ringing. One of the horrible things about all of this is how much you actually have to DO immediately following a death. I got a call from a transplant coordinator who said that she had transposed the numbers in my phone number so she had been trying unsuccessfully to get in touch with me. The good news was that Gess's corneas were in good shape and could be transplanted. And there was a match already waiting for them. I consented (of course), but then had to answer about 10 minutes worth of questions about him and his death, etc.

Then, the head of the CF center called about donation for the rest of Gessner's body/organs. It is amazing to me how difficult it is to actually donate a person's body/organs. Multiple nurses and doctors made several phone calls each to find out the options. Really, it should be much easier than this! Finally it turned out that there were two options for me: an internal study regarding CT scans and working with a private company that contracts with hospitals (but not the UW). The private company couldn't tell me what organs they would be able to use and the procedure seemed difficult, so I opted for the internal study. Gessner would have approved--for the study they did a CT scan of Gess's lungs and then cut his lungs into pieces to compare the CT images with what was actually going on in the lungs. This is to help doctors interpret CT scans.

I was finally able to sit down to eat, but then got a call from my father-in-law and had to run. You see, I moved that day. Yep, moved.

We were living in an older house with lots of stairs and lots of dust. We knew that we should move, but never made definitive steps toward it because we just didn't have the time or energy. Enter Gessner's dad. He agreed that we should move so set out to make that happen. We (Tom and I) looked at a couple of places the week before and decided on an apartment that was near our old place, but new and with no stairs. We filled out the lease paperwork and shopped for new furniture while Gessner was in the hospital (but before the ICU), assuming that like always he would rebound. We decided on the first available move in day, which was November 3rd.

Gessner's dad dealt with the movers, etc., but I had to go over and actually sign the lease. The management was amazing about everything.

One of the movers actually told me that I looked like I needed to get some sleep. That's on my list of things not to say to people whose husband just died.

After signing the lease and some other apartment stuff I met with my mom, brother, and sister-in-law who had driven over the night before. We ended up going to lunch to distract ourselves.

It was a long, exhausting day. I was numb and in shock. I am so thankful for my friends that were there with me, reminding me to take it ten minutes at a time.

Corneal Transplant

The day after Gessner died I received a call from some transplant coordinator who said that Gess's corneas were good and could be transplanted. She also said that there was a match waiting, which apparently is not that common. She said if I gave my permission the transplant could take place that day. Of course I consented...Gess wanted anything possible to be transplanted. I received a notice yesterday that the corneal transplant was successful and that someone can now see because of Gessner's gift. It doesn't make the loss any easier, but it makes me happy that something good could come out of it.

Sunday, November 14, 2010

Day 12

It's day 12 and the days are not getting easier. I know that it will take a long time, but each day feels like it will never end. I don't want to talk, but at the same time all I want to do is talk about him and how much I miss him. I keep looking for him to walk through the door or to call me on the phone. I can't accept that this is real. I hate the way that people look at me and that everyone wants to help me. I don't want help, I just want my husband. I don't want to be a widow. I just don't want any of this.
Michael Gessner Brown had a contagious smile that lit up the room and warmed everyone around him. 'He was one of those bright shining stars that you only encounter a couple times in your life,' a friend said. His death on November 2, 2010 left a hole in the hearts and lives of those who knew him.

Gessner was born on April 13, 1977, to Thomas and Barbara Brown and sister Diana (Hall). He was diagnosed with cystic fibrosis as an infant, but never let his illness stop him from living life and inspiring others. As a child, Gessner was always on an adventure and always trying new things. Gessner loved the outdoors and took every opportunity to be active. He loved to hike, fish, camp, and rollerblade. He earned black belts in four different martial arts and completed a half-marathon in 2006.

Gessner loved kids and they were drawn to him like magnets. He was always ready to get down on the floor and play or use his slap-stick antics to make kids (and adults) laugh. A friend's nephew never missed a chance to ask if Gessner could come over to play. He was always willing to let his niece Hannah dress him up and fix his hair. Hannah's favorite video to watch over and over again is one of Uncle Gessner acting like a ham and pretending to fall just to make her laugh. He was a great storyteller and entertained many with his tall tales. One friend said she is sad her new baby girls will never get to know him.

Gessner enjoyed animals just as much as kids. He had plenty of pets, from snakes to lizards to a baby turtle he smuggled home in his pocket on the plane last year. He had a great love for his beagle Beauty and never missed a chance to play chase or snuggle with her.

A true romantic, Gessner loved to surprise his wife and his love for her was apparent to all who knew him. A friend described Gessner as one of the most romantic and devoted husbands she has ever met. Gessner met his wife Lisa (Worthington-Brown) in college and they were married for nearly 12 years. 'Gessner would leave love notes for me to find and write messages to me with soap on the mirror. He always told me how much he loved me and made me feel so special,' his wife said.

Gessner loved his job and excelled in his profession. Most recently, he worked for Expedia as an Offshore Initiatives Project Manager. Coworkers saw in him a passion for work and a loving, generous nature. Gessner refused to let CF keep him from working and advancing his career. He would attend conference calls from his hospital bed or secretly infuse IV antibiotics while giving a presentation. 'Gessner was always so positive and upbeat, yet laid back. Now, knowing that he was facing a life threatening illness, it's all the more amazing what a great attitude he had,' said one coworker.

Gessner loved to make people smile and nearly everyone who met him has a story to tell about something he did. From his silly outfits, to his signature sound effects, to his bizarre gag gifts, it was hard not to burst into laughter when he was around. A generous and helping spirit, Gessner was always ready to step in and assist others. He was thoughtful and encouraging, forever sending notes and gifts to remind people that he loved them. As his health deteriorated, Gessner strived to keep a positive attitude and live life as much as possible.

Even in death, he wanted to help others. He donated his corneas and they were transplanted to improve someone's vision the day after his death. He also gave his lungs to research. 'Gessner was one of a kind,' a friend said. 'I knew he was something the first time I met him. I will miss his friendship. Gessner is an inspiration to me. Words can't describe how much I respect and admire his courage.' His family was thankful to have him for his short lifetime. 'He was the strongest person I have ever met,' his sister said. 'I am a better person for having known him.'

To further Gessner's desire to help others, donations can be made to the Cystic Fibrosis Foundation in lieu of flowers.
Published in The Seattle Times on November 14, 2010

Thursday, November 11, 2010

The End

In order to be listed for a lung (and possible liver) transplant, the transplant team decided that Gessner needed to undergo a TIPS procedure (see previous posts for information about this). He had the procedure on Thursday, October 21st. There were major complications during the procedure and they nearly lost him. But in true Gessner fashion, he was off the vent and home the very next day! These miraculous recoveries have been his MO for awhile. It was quite a roller coaster.

On Sunday afternoon we called his doctor to report increased sputum production and a change in its consistency. The doctor told Gess to start on inhaled TOBI. Gess continued to deteriorate, feeling short of breath and retaining a lot of fluid. We ended up at the ER and he was admitted again. The doctors thought that the symptoms were being caused by all of the fluid (including 7 units of blood) that Gess was given during the TIPS procedure. The doctors were hesitant to use diuretics because they can tax the kidneys. Gess started to feel somewhat better and was stable, so he went home again. A couple of days later he was back in the ER, feeling very short of breath and that he was deteriorating. He told me several times that he didn't think that he was going to make it--words that haunt me now.

The doctors decided to add antibiotic to the mix and give him diuretics to make him release some fluid. He was in a lot of pain and also very anxious because of his inability to breath. The doctors put him on ativan and demoral. On Friday night (October 29th), his breathing got worse and he became extremely agitated. He was on 100% oxygen and still gasping for breath. They decided to transfer him to the ICU, but that transition too awhile. It was horrible watching him struggle to breath. All I could do was force him to look into my eyes and try to slow down his breathing. It seemed to help a bit, but not nearly enough.

He was finally transferred to the ICU and thankfully his normal CF doctor was still on the ICU service. They tried him on a bi-pap to try to help his breathing, but that was unsuccessful. His CO2 levels skyrocketed (to about three times his normal--already elevated--levels) and putting him on the ventilator was the only option.

On Saturday morning they tried to take him off of the vent, but were unsuccessful. He had increased fluid in his lungs and they gave him more diuretics to get off the excess fluid. They "dried him out" but unfortunately he still had trouble breathing. For the first couple of days they had a hard time keeping him sedated enough on the vent because his blood pressure was unstable. Those days were hard because he was in pain and wanted the breathing tube out. By this point they had also put in a feeding tube to help give him some nutrition. He hated having the tubes in and had to be restrained so that he wouldn't take them out during moments of consciousness.

One of the memories that haunts me when Gess would wake up with terror in his eyes to realize that he was vented and restrained. Thankfully the terror subsided quickly when he saw me and I reassured him, but it was very difficult to see. I am comforted to know that he was highly medicated, but wish that I could have spared him that.

After they were able to get most of the excess fluid off, the doctors concluded that, unfortunately, infection was the real cause of the problem. The doctors added another antibiotic and we all hoped that the meds would address the infection enough to all him to breath on his own.

On Sunday morning they made another attempt to take Gess off of the vent and it went very badly. His CO2 levels got to high and his breathing was much too labored. I had taken the night shift and so was home when this happened, but Gess's dad was there. His dad said that it was horrible to watch. When Dr. T told Gess that he couldn't get off the vent that day Gess snapped a pen in half with one hand. He was still fighting, so that was encouraging.

Dr. T. had Tom call me and wake me up to come in to the hospital for a family conference. I knew that it couldn't be bad news, and got to the hospital as soon as I could. The walk to the family conference room was long and tense. Dr. T and the pulmonology fellow were there. The room was one of those rooms where they do patient education. There was a small round table with chairs, a sofa, and a book shelf. It was disorganized and seemed thrown together. Tom and I sat on one side of the table, the doctors on the other. Dr. T paused before he spoke, his face telling the story before he even opened his mouth. Things were not looking good. They needed to get Gessner off the vent as soon as possible. The infection was making it difficult. His kidneys were failing too. We asked question and got the answers that I already knew, and certainly didn't want to hear. One week, two max on the vent. Difficult days ahead.

Dr. T was scheduled to go off the ICU service and also going out of town for a conference. He assured us that the new attending was good, that he would be in contact with her daily, and he would be back on Tuesday. I cried. Dr. T told me to go back home and get some sleep. I'm not sure how I was supposed to do that knowing that my husband was hanging on to life by a thread.

The good news was that his blood pressure was stable and they were able to keep him more sedated. But any time they moved him or did CPT I could see the pain in his face. He wanted the vent to come out and was mad when I told that it couldn't. He told me he loved me in sign language and I held his hand as much as I could. That night was uneventful, so I hoped that meant that he was getting rest and healing.

On Monday morning they tried to take him off of the vent again. It was obviously not working, and they only tried for about five minutes. As they tried to let him breath for himself, he worked for each and every breath, using his accessory muscles to drawn in the air. He was not ready so they increased the sedation and turned the vent back on completely.

At rounds we got more bad news. His kidneys were not doing well, so they adjusted his antibiotic dose. The plan was to continue to wait and see. Later they discontinued another of the antibiotics because his kidneys continued to deteriorate. He couldn't tolerate the only thing that could save him. He did not interact with us that day, he was sedated but would cough and was in obvious pain during CPT. It was horrible to watch and Tom and I decided that we needed to talk to the doctors again. It was late and only interns were around, so we had to wait until morning. Gess's sister D arrived that evening and we filled her in on everything.

On Tuesday morning I waited for the doctors with dread. Of course they were late in rounding. Earlier the RTs said that Gess's chest xray looked worse and they were not going to attempt to take him off of the vent. When the doctors came they confirmed that he was getting worse and that his kidneys could not tolerate the antibiotics. We requested another family conference, knowing that Dr. T was back in town. It was set up for 2:00 pm. D and I me with him and the ICU attending. We all knew what needed to be said, but I could barely stomach the walk to the dreaded conference room.

Dr. T confirmed what we knew: Gess was not getting better, but was getting worse. The chances of him coming off the vent were not good. If he could make it off the vent, he wouldn't get back to the level he was before the TIPS procedure--a level that was barely tolerable. He was not going to get a transplant. It was time. Gess was such a fighter, but was also a realist. He wanted to try for a transplant because it was his only chance at a better life. He knew that it was a long shot considering his unique circumstances, but the hope was worth the risk. Unfortunately, it wasn't to be.

I made the decision that no one should have to make. It was the right decision. Family agreed. The doctors agreed. But my heart broke. I wanted Gess to be free of pain and knew what his wishes were--we had talked about it many times--but I didn't want to believe it. It was the hardest thing that I ever had to do.

As soon as I made the decision the doctors and nurses started to get things ready. Gessner wanted his organs and/or body donated to help others so the nurses started making phone calls. They brought in a tray of snacks and beverages. They closed the blinds and gave us privacy. One of the most precious gifts was that the nurse moved Gess over in his bed so that I could lay with him. Not being able to be close to him was one of the hardest part about this, so I will be forever grateful for this act of kindness.

Later the nurses cleaned Gess up and removed all of unnecessary tubes and wires. He looked so much more peaceful. I kept waiting for him to open his eyes and say he was ready to come off the vent. To sit up and say he was ready to go home. I wanted him to come back, I wanted him to rebound, I wanted him to be alive.

We waited for his mother to get in from Colorado. Friends came and we let friends and family spend time with Gessner. When his mother arrived we let the nurses know that we were ready. The doctor asked me some questions. Questions that I don't remember--something about whether I wanted the tube to be removed completely or left in. Questions I had no idea how to answer. It was shift change, so it took awhile for the nurses and RTs to get ready.

Finally it was time. I sat in a chair on his right side, holding his hand. His mother stood across from me on the other side. His sister and a couple cousins were there. Two close friends were there too. We sat in silence for awhile as the nurse injected pain medication and sedatives while the RTs slowly adjusted the vent. We cried. We watched. It actually happened rather quickly. He breathed and then he didn't. I threw up. I couldn't believe he was dying. So many times I wanted to scream and tell them to stop, that it was wrong, that Gess was going to get better. I wanted to throw something. But I couldn't. All I could do was hold his hand and cry as he faded away.

The worse thing was that after he stopped breathing, his muscles started to contract. No one warned me about this and I thought that he took a breath. I yelled and asked what was going on. I was hysterical. My friends comforted me and told me what it was. The RT confirmed--he still had brain activity, but he wasn't in pain. My friends forced me to look away. I sat with him as long as I could, but I saw his color change. He was gone and he wasn't coming back. I had to leave. I couldn't watch it anymore.

I had to sign a consent for an autopsy and gather his belongings. My friend took me to her house and we cried. I was numb, scared, and so sad. I hoped that I would wake up for my nightmare. I still do.

Michael Gessner Brown, the love of my life. April 13, 1977-November 2, 2010.