Wednesday, April 27, 2011

April 18th- The Call



Last week was Spring Break. We had gone to the McWane Science Center in downtown Birmingham. It is a great little children's museum right around the corner from UAB, and we decided to take Micah. Just being with Micah and watching her explore is fun for the rest of us. She gets so excited, and I'm reminded about all the wonder of the world when I look through Micah's eyes for a little while. We were sitting in an iMax movie about saving baby elephants and orangutans called "Born to Be Wild".

I was imagining what my hair might look like if I were one of the women in the movie... Living in the jungle or on the dry plains with no hair products... It would be frizz city. Although, Argon oil is supposed to come from one special tree somewhere in Africa. Maybe I could get the oil directly from the source...

Suddenly, I was jerked from my hair revery when Dave leaned over and whispered, "We have to go. Dan just got a call."

It was about 3:15 in the afternoon. Somehow, we scrambled around and staggered out of the theater into the hall. Micah began jumping up and down saying, "Yay! We get to go to the castle now."

Randy was in Mobile working. We had arranged to trade places over Spring Break so that Dan wouldn't be left alone at any point. I stepped away from Micah's excited squealing to call Randy. He gave me a number and instructed me to call someone named Janice.

As I hung up and called UAB, I couldn't help but feel deep down in my gut that this was really it. The only problem was that Sarah was at Disney with the band. So, any phone tree plan had to be cut. (Couldn't help the pun- sorry.) Dave called Mom, and Randy called Maxine, but that was the extent of our calling. In a way, it was kind of comforting to be in the process without the pressure of updating anything or answering any questions. Also, I knew I was protecting Sarah from worrying, which made me feel like I was doing something by not doing anything.

After breaking the news to Micah that we wouldn't be going to the castle, but to the hospital to get some new lungs for Dan, we made our way to the parking garage and drove the two blocks to UAB's parking garage. Dave parked the car with Micah, while I wheeled Dan in her wheelchair to wait in the lobby area where people pay for their parking at these machines that look like ATMs, but they are instead strictly designed for sucking money out of your account without giving you anything in return except releasing you from the parking garage. Which, upon reflection, is worth paying for...

After Dave parked the car, we plopped Micah on Dan's lap in the wheelchair and proceeded to the 5th floor where we were greeted by a large gold sign reading, "Cardiothoracic Surgery". There was no desk or any obvious place to check in, so we meandered down the hallways passing patient rooms labeled with various signs like, "Fall Risk" or "NPO" to arrive at a huge nurses' desk in the middle of the floor. A little brunette lady looked up for her computer saying, "Can I help you?"

I responded, "Yes. This is Danielle Sargent. We got a call..." She popped right up.

"Yes. We were expecting you. Come this way." We were led into a relatively large room with several uncomfortable reclining chairs each labeled with handwritten last names. "Sargent", "Dancer", "Prancer" and "Blitzen". I suppose I have no reason to protect anonymity, but something in me feels like that is the right thing to do. Plus... Who doesn't love Santa's reindeer?

Dan got settled into her designated recliner while Dave, Micah and I stood about nervously shuffling around. A young 20-something girl was sleeping in a recliner on one end of the room, while a lady who was obviously her mom chatted amiably with one of the nurses. She turned to us offering Dave her chair, but he declined saying, "No, thanks. I'm kind of keyed up at the moment."

"I understand perfectly," she nodded, "I've been there." Later, when I asked if her daughter had gotten a lung transplant, she explained that she had received a heart. I'm not certain what type of follow-up treatment she was having in the room, but once it was complete they unhooked her from the I.V., she donned a huge pair of Jackie-O sunglasses and strutted out of the room new heart and all. And, the sight of that beautiful, blond 20-something girl walking out with her shiny, brand-new heart made my heart soar with the hope and promise of everything that is possible for Dan with new lungs.

The nurses directed Dave and Micah out to a specific waiting room for families, and I went back to help Dan into the hospital gown. The nurse accessed Danielle's port and drew about eight tubes of blood. They ran all sorts of labs to make sure Dan was healthy enough for transplant and I guess to determine the best match for organs. And, we waited.

We waited until Ms. Prancer arrived. She was a tiny little lady of near 60, accompanied by a tiny little husband dressed all in black like Johnny Cash. After they were settled and blood was drawn, we had opportunity to hear bits and pieces of her transplant story, although we never really heard the name of her actual diagnosis. We learned that she had been listed for over three years and was currently double listed at UAB and Emery in Atlanta. She also revealed that she had some type of strange antibody problem that made finding a match even more difficult for her. As she explained it, there is some sort of childhood illness that everyone gets developing antibodies in a person's system. She never got the illness, so when donor lungs have this particular antibody, her system is more likely to reject the donor lungs. She explained that she raised children and grandchildren and this time in her life was supposed to be for her and her husband to enjoy.

I felt for her. Really, I did. You can't sit with someone on 10 liters of oxygen who is obviously really sick and awaiting transplant and not feel empathy. But, still the only thought coursing through my brain was, "I'm sorry for your situation, but these are Dan's lungs. You've lived so many years. You have a little husband dressed all in black sitting beside you holding your hand. You've had children. You've had grandchilren. These are Dan's lungs. I'm here. We were downtown. The situation is perfect. These are Dan's lungs."

But, the instant I thought it I prayed, "God, it seems like everything is perfect and I am so grateful for this experience no matter what... Only You know if these are Dan's lungs. Please bless these people. Bless us. Help me to accept whatever is to be. Help me to trust in Your Power and the Bigness of this Process."

A little while later Ms. Blitzen arrived with her husband. She, like Ms. Prancer, was 60 something. And, I thought, "I don't want to lose my mom at this age, but Mom would want Dan to live more than she would want lungs for herself. These are Dan's lungs. I wonder what these older patients are thinking when they look at Dan. Well, I don't really care. These are Dan's lungs."

And, in the next instant, looking at Ms. Blitzen, "God. Forgive me. Of course, I care about people. I have no idea what is supposed to happen here. Please let Your will be done. And, please help me maintain some level of serenity here."

By about 7:30 p.m. I learned that all the other patients were single lung transplant patients, while Dan needs a bi-lateral transplant. I had been out to the waiting area to update Dave, and call Randy and Mom. Dave and I decided he should go to Randy's house to pack some things for Dan and I, so that he would be ready to take Micah back for the night. He also went to get us some sandwiches since we hadn't eaten anything since lunch. (Dan, of course, was not allowed to eat anything in case she had to go into surgery.)

Mr. Dancer was the last to arrive. As it turned out, this had been his fourth call in five days. He was from Jackson, MS, and every time he got a call, he drove 3 hours and 45 minutes to get to UAB. His wife shared that he had idiopathic pulmonary fibrosis. That is the same disease listed as the cause of death on my natural father's death certificate. Dave and I had been taking turns between Dan and Micah, and he overheard the nurse talking to Mr. Dancer. He reported smoking for years and drinking regularly.

When Dave relayed the conversation to me I thought, "These are Dan's lungs. She didn't smoke. She hasn't done anything to deserve what CF has done to her body. I'm sorry for my fellow Mississippian. I feel for his wife. But, these are Dan's lungs."

And, in the next restless, tired moment, "God... Please let these be Dan's lungs. If it's Your will, please let these lungs be hers."

But, they weren't.

Dave came to relieve me while I ate my sandwich and spent a little time with Micah. She was extremely cranky and needed sleep. I waited with her in the family waiting room trying to settle her down. At about 10:30, Dave came out and said the lungs were not viable. I wasn't disappointed. I wasn't anything except tired.

So, Dave and I went back to the room with Micah in tow and watched everyone packing up to go home. We bid our fellow would-be transplant patients good-bye and packed everything up to head back to Randy's. It was about 11:30 when we finally got back to the house and into bed with a very tired Micah.

As I lay my head down at night, I felt amazingly serene. It had really seemed like it was going to be "the" time. It just seemed so right since I happened to be there. But, I was heartened by the experience. I felt relieved that I may actually have time to get to the hospital before they roll her back for surgery. And, I understand the process better. Honestly, I don't know what I was thinking before, but all I have read didn't allow the process happening on the donor's side of things to really sink into my brain. I learned that donor lungs will always come from a controlled setting in which a person is declared "brain-dead" and removed from life support. I knew someone was losing a loved one, but I guess my idea about the whole process was that someone checked a driver's license and scheduled a surgery. Instead, I now have a vision of a family member sitting by a bedside while a doctor or nurse shuts off life support. At that point, a team of doctor's descend to operate and removed the organs the donor's family has allowed. Only at that point, when one of the transplant surgeons visually looks at the lungs do we know if the lungs are viable, and if they are a match for Dan.

Those weren't Dan's lungs. But, its O.K. Her lungs are still in someone's body... A living, breathing person's body. And, I will continue to be up and down and prayerful in between the peaks and valleys.

1 comment:

Katey said...

Wow. I know that must be an emotional roller coaster being in there with other people waiting for transplants too. Not sure if we've met, but i had a double lung transplant (because of CF) and I live in Birmingham and go to UAB Hospital! We should get to know each other. I'm so amazed and inspired by how you handled that situation and really prayed that God's will would be done...amazing.

So the follow up treatment you mentioned that person was receiving is called Photophoresis (spelling may be a little off, i call it "Photo" for short); it is a type of therapy used when someone is going through chronic rejection of a heart or lung(s); i actually did 2 rounds of it myself. You have to wear sunglasses because it makes you sensitive to the sun 24 hrs after treatment. It actually circulates the White Blood cells in your blood through the machine then puts them back in your body, in hopes of the cells not rejecting your organ. There is a post or two about it on my blog. It's pretty cool.

Praying that your set of lungs will come soon, but i know you know that God has his perfect timing.