Anna is slowly healing. She goes to Pulmonary Rehab Monday through Friday where she walks, bikes, lifts tiny weights, and stretches. Tuesdays are the exception because that’s the day she goes to the clinic to see various medical personnel and her counselor. Yesterday, while waiting for her during one of her appointments, I was reading Jesus Calling. It’s a daily encouragement…like God calling you to tell you just how much He loves you.
It started out, “This is a time of abundance in your life…you are now traipsing through lush meadows drenched in warm sunshine…” at about this point I literally sighed, scoffing at these words. Abundance?!? A Meadow?!? Uh, no, I’m sitting in a hallway-turned-waiting-room on a rain soaked, dreary Durham day. My daughter is struggling to recover from her lung transplant. This isn’t my home. I am not working because I am busy taking care of my daughter and without working in my counseling practice I don’t make money. Hello! Abundance??? I don’t think so.
It was a lovely rant. As I stopped to take a breath, I realized instantly that I had missed the point. All those things that are hard in my life right now are true. I am also deeply loved by God. I could stop here and that would be enough. But wait! There’s more! My daughter is being cared for by one of the top lung transplant teams in the country. We are warm and dry on this cold wet day. I have access to healthy food and clean water…I am living in abundance! Sometimes it just takes tilting my brain to see things from a new perspective.
Categories: Acceptance, Anna the lemon, awareness, Emotional Healing, Growth, Healing, integration, lung transplant, Recovery, Self-Help
Tags: Duke Lung Transplant, Duke University Lung Transplant
After 25 days in the hospital for her double lung transplant, Anna was discharged! I don’t say, “Anna went home” because home is in CO and she can’t go home until she has fully recovered. She went to our apartment in Durham. It’s our cozy ‘home’ here. People in the Duke Lung Transplant Program refer to home as their Durham home and home-home as the place where they lived before coming here. People come from all over the world to receive a life saving lung transplant at Duke University Hospital. One of Anna’s transplant buddies is from Israel!
This journey, while a tremendous gift, has not been easy. Anna battles feeling discouraged. At 28, she wants to live a “normal” life. She wants to be like most 28 year olds: healthy, finding meaningful work, living on her own, dating, getting married, having children, enjoying time with friends…While she is grateful for this chance to live, at times it’s hard to keep her perspective on the good.
A reality for humans is having sorrow and celebration all mixed together as we travel through life. It’s healthy for us to allow ourselves to sit in the sad space at times. It’s part of grieving our losses. The things we don’t have in the moment are real and it’s important to acknowledge that. It is also important to remember the good. I find it helpful to keep the two in my mind at the same time rather than all one or the other. As I grieve a loss, I visualize the good, too. Neither one discounts the other, they are simply allowed to be in the same sphere of acknowledgement. It helps to bring balance to sorrow and celebration. 🙂
At this moment, Anna is peacefully resting. Over the past 24 hours that has not been the case. She has been feeling bloated, filled with lots of fluid and the usual post surgery/pain med back up in the poop arena. She stopped taking pain meds except for Tylenol a day and a half ago. She rode some nasty waves of all over feeling icky to finding some place of calm in her mind, even if she didn’t really feel it in her body. She used all relaxation techniques: massage, guided imagery, relaxation breathing… They were helpful at times, but at others she just couldn’t take it. Unfortunately there was no relief to be found when she hit the wall. It was rough! I was able to walk away last night and hand the baton over to her dad who had the overnight shift with her. He got two hours of sleep. It really helps to have at least two of us here so we can take turns resting and implementing self care. Sadly, Anna doesn’t have that luxury.
Beyond the most recent crisis, Anna was cleared for thin liquids a few days ago. She has zero restrictions regarding eating and drinking. Her first request was a Starbuck’s Passion Iced Tea Lemonade. She savored it! Of course, the bloating and horrible feeling removed any desire to eat or drink for a few days. Just before resting she enjoyed apple juice and some almonds. A sign that she is moving in the right direction.
I think they are removing two of her chest tubes tomorrow so she will be down to two. She started with six. The chest tubes add to her discomfort but lately she said the transplant trauma and chest tubes were not her problem. She was moved out of the ICU and thankfully into a room just like the ICU rooms. There are two places a lung transplant patient can end up. One is about seven years old, spacious, light, about as enjoyable as a hospital room can be. The other is old, tiny, and depressing. What a gift it was when she learned she would be moving to the new floor. Lots of celebration!!! An interesting note. In the ICU Anna was in room 7 on 7 West. Her new room is 7 on 7 East. She got her call that lungs were available at 7p on October 7. We love all the sevens!
Just wanted to keep those of you who are following Anna’s progress through these blog posts informed if you are wondering about how she’s doing. 🙂
The wee hours of October 8 marked the beginning of Anna’s eight hour surgery to replace her first set of gently used lungs with the precious lungs of another family’s lost loved one. For Anna, it was exciting and terrifying all mixed together. She is still in the ICU healing and getting better in different ways every day. It’s a bit of a roller coaster trying to balance the medications they are giving her for pain, keeping fluid off the lungs while also keeping her blood pressure stable. The bottom line is, she’s doing well. Anna told me last night that this transplant is way better than the last one. 🙂
My mental health tidbit for this post is, it’s so important to let our feelings have a healthy outlet. This is an emotionally and physically exhausting adventure for all concerned. The most challenging job is Anna’s. While on the ventilator she had to calm herself down so she wouldn’t be constantly fighting the breathing tube. She has hallucinations. She knows it. So she talks herself down from whatever the hallucinations might be telling her or simply reminds herself, “Yeah, this isn’t real. Random people are not hanging out in the corner of my room singing to me.” 😊
A few nights ago I noticed myself getting really snippy with my husband and he totally did not deserve it! The next morning I took time for myself doing yoga, spending sweet time with God, and soaking in a bit of peace and sun outside. I felt the rise of tears but they disappeared. I started texting a friend and the tears started to roll down my cheeks. Yay! I needed this. I cried and cried. My friend called me and I cried with her for a bit. It felt so good just to let all the built up emotions out. I had spent the last six days being strong, holding it together, staying positive. That’s an important part of this process: the ability to contain when necessary but also the ability to let the emotions out in a safe space. I felt teary most of the morning. It was hard to shut down the faucet but eventually it ran dry. By the afternoon I was feeling grounded and clear again. I don’t feel so exhausted either. A good cry goes a long way!
Anna and me. I’m all gowned up to protect her.
On a walk the day after transplant! Her dad is the photo bomber in the background!
Waiting is becoming a very common theme in my posts. I wonder what you are waiting for? I think we are all waiting for something. Sometimes we’re waiting for big things, sometimes we’re waiting for small things. It can be hard to be patient in the waiting. We have options. We can be irritated, grouchy, miserable, intolerant, and so many other icky feeling emotions. Sometimes it feels good to go to the icky feeling place. Sometimes it doesn’t. We can also choose to find peace and contentment in waiting. I think of it as a release of control that I don’t have anyway. It’s an action that can be hard to do, to let go, but when I do I feel so much lighter and relaxed. I can take deeper breaths. I sleep better. I am much less irritable. It’s more enjoyable to be around me, too!
Anna is getting lots of practice waiting as she is still waiting for her gently used set of lungs. She must wait for just the right set, not any lungs will do. Her body is already on to this “lungs from another body” deal. So the new lungs will have to be very different from her current set. This will help trick her body into leaving the new lungs alone and not seeing them as a threat. Our immune systems are so awesome at fighting bad intruders but they don’t know the difference between bacteria that’s bad and life-saving lungs that came from another person’s body. So Anna waits. Her wait is worse than mine for so many reasons. I spent three weeks with her and then returned home. I’ll go back in a few weeks. But she must stay in North Carolina waiting every day for a call where she will hear, “Anna, we’ve got lungs for you!”
When we can’t see what’s ahead
This is not an unusual topic for me to write about. It tends to come up when I’m confronted with a new development in my daughter’s journey. Living in the moment is a way to live all the time but seems to be challenged when her health takes a dive as it did a few weeks ago. After learning her lung functions dropped significantly, she eventually heard the plan. Five days of rATG in Duke Hospital (done), then four weeks of a once a week infusion of Rituxan (a chemo drug that wipes out b-cells, the part of her immune system that is attacking her lungs). After that she will receive another bronchoscopy to determine if the rejection has been stalled. If not, she will do Photopheresis (kind of like dialysis) three days a week for a few months.
This week she and I travelled to Duke for her first infusion of Rituxan. Our hope is for her infusions to be moved to Colorado to avoid the cost of traveling back and forth every week. If it wasn’t around the holidays we might consider just staying there for the month. For Anna, this means a medical leave from her job and moving back to Colorado for now. She really enjoys her job and loves living independently in Phoenix so this is a tough transition for her. She’s not sure when she will be able to return to work. We don’t even know yet if her second Rituxan treatment next week will be at Duke or in Colorado. It’s a lot of “what do I do?” for Anna (and a bit of that for me as I figure out if I’ll be in NC next week or CO).
Ever been there? You know that place where some decisions need to be made but you don’t have all the information you need yet? For instance, Anna needed to give the rental office of her apartment 60 days notice to get out of her lease. She was planning on staying where she is and a new roommate was going to join her (her current roommate just moved out). Because of the unpredictable state she is in she had to tell the new roommate she couldn’t commit to a lease, so the new roommate is not going to be joining Anna. This is totally understandable. That decision had to be made but it was a tough one because if all goes well, Anna may only need the four weeks of Rituxan and then be stable for awhile, maybe even a year which would mean she could stay in Phoenix with the new roommate in the same apartment. So simple, yet too many unknowns to commit to that.
Her decision has been to end her lease, so she has until February 13. The good news is this gives her some time so she doesn’t have to move completely to Colorado, just for a few weeks while she deals with the Rituxan treatments. She doesn’t have the stamina to totally care for herself and work, so being in CO where she has four parents and two siblings to help her out is incredibly relieving. She is dealing with decisions a step at a time. Her decisions have to made on the knowledge she has in the moment, like giving up her lease and her roommate.
This can be a frustrating situation for all of us, right? When you have to make a decision but you don’t have all the information the future holds in the present. That’s just how it is. Part of our journey as humans on this earth is learning to accept those limitations and make the best decision we can in the moment with the knowledge we have at the time. When the future becomes the present and we beat ourselves up with, “If I had known what would happen, I would have made a different decision” we are being cruel to ourselves. The point is, we can’t know the future. Have compassion on yourself and do what you can with the knowledge you have in the moment. 🙂
I mentioned last winter that my daughter, Anna has chronic rejection of her transplanted lungs. It’s a form of rejection that cannot be “cured” it can only be stalled. The stalling effect actually worked and kept her lung capacity at around 50% for several months. In October she was at about 48%. Unfortunately, a week before Thanksgiving, Anna saw a dramatic drop in her lung function on her home monitor which resulted in her needing to go to Duke University Hospital last week. She had dropped to around 40% lung capacity. Her transplant team determined the best option was for her to undergo another round of rATG. That’s the infused treatment she received last December when she was diagnosed with chronic rejection. She’ll be in the hospital for a few more days to receive the full five days of treatment. Hopefully this will stall the rejection again, like it did last year. For now she’s in good spirits and her dad is with her helping her pass the time. 🙂
My neighbor has a home in Morehead City, NC. A fun little beach cottage she and her husband just finished remodeling and it sits right in the path of Hurricane Florence. We chatted at the mailbox last night about holding things loosely and doing the next right thing. Often when faced with some sort of adversity we may freak out, which doesn’t really help us at all. Other times we may try not being bothered in the least, which isn’t actually real. Either option is an extreme and extremes don’t tend to be beneficial.
So what does balanced look like? It’s when we are aware of the emotional impact of whatever is happening but we don’t allow the situation to own us. In my neighbor’s case, she feels the sadness of what might happen but recognizes she doesn’t actually know yet so she is holding some hope that perhaps things will be fine and if not she will then deal with it. Her words, “I’m taking the next right step.”
Closer to home, Anna (my daughter) is going through chronic rejection of her transplanted lungs. I’m focusing on what we know now: she’s fine, she’s humming along living her life even though she is well aware her lungs are failing. This is a slow progression for the time being so no action is necessary at this time. Anna understands this balance of living in reality but not letting her emotions take control. From her blog post in July:
“…yet as with all my fears they turn out to be not so bad and the things that suck are things I never really saw coming. Trust me I know from experience God really meant it when he said “DO NOT BE AFRAID”. There really is no point, it does nothing but get us all worked up, steal our present moments and lock us in a box of fear. Everything I have ever been afraid of happening that has happened was actually okay, there was no reason to get all worked up. And yet God also knew what he was doing when he said it over, and over, and over, and over, and over, and over, and over …. okay you get the point. Not being afraid is something I have to constantly remind myself. My latest mantra is the little bit of the song “don’t worry, about a thing, cuz every little thing is gonna be alright” and it is true!”
“Every little thing is gonna be alright” doesn’t mean everything will turn out as we want it to, but whatever it is, we can grow through it step by step.
Categories: Acceptance, Depression, Emotional Healing, Growth, Processing Thoughts and Emotions, Recovery, Self-Help
Tags: Anna, Anna the lemon, Duke Lung Transplant, hurricane, lung transplant
So sorry for a long delay between posts. I ran into a bit of a technical issue with my blog that is now remedied. Since last writing, we have learned that Anna’s lung functions stabilized. She has about 1/2 her lung capacity. It has remained this way for about the last two months. Our hope is she stays at this level for the long haul. Anna has adjusted to the reduced lung capacity physically and doesn’t notice most of the time. We’ll know more about the progression of the chronic rejection this summer after Anna’s next Dr’s visit at Duke.
NEWS: I have a new website that will be up and running hopefully soon. I’m combining my Journey Forward website with my new, Journey Forward for Life domain. I am planning on offering videos and online workshops to supplement the Journey Forward Workbook. I also have an idea to create in-person retreats that will give a limited number of people the chance to go to a beautiful place where they can work on issues in a group format lead by me.
The first retreat will be on Self Care. You’ll have the opportunity to explore who you are, what you like and don’t like and how you can restore and recharge. We’ll dig into the whys behind the challenges you face in taking care of yourself or even knowing what you like. I’m excited about the changes to come. If you want to stay in the loop, please email me and I’ll get you on my email list. No constant filling of your inbox, just letting you know when I’m launching new offerings. Email me as well if you are interested in participating in my first retreat this summer: firstname.lastname@example.org
Here’s to humming along!
Some of you have asked how Anna is doing so I thought I should write another post to keep you in the loop 🙂 Her lung functions continue to decline. From September to February she dropped 30%. If she continues at that pace, she will need another lung transplant before the year ends. Yesterday she was given Campath, a chemo drug that will reduce her immune system considerably. The hope is to stop the body from attacking her lungs. She will go back to Duke in early April to check her lung function and find out if the Campath helped. The future looks like a lot of “wait and see” (which is the reality for everyone!).
We are living in the moment not freaking out about all the “could be’s”. I continue to grow in this mind set, reminding myself that worrying doesn’t do anything to change reality. This approach does not mean sticking my head in the sand either. It’s an acceptance of reality, researching options and holding loosely to the outcome. I just keep getting opportunities to practice this with big ticket circumstances 🙂
Thank you to all who are holding Anna in your prayers and thoughts. She needs all the support she can get!