For those of you who have been following my daughter’s journey, she is now out of limbo…well sort of. Last week her lung functions took a dip so her Dr. at Duke said it’s time to move to Durham, NC to start the pre-transplant process. This was sudden and yet very hoped for news. Over the weekend Anna’s dad, stepmom and sister helped her pack up her car. On Sunday, Anna, her dog and her dad, John, began the trek from Colorado to North Carolina. They arrived last night (Tuesday). This is almost the exact same time that Anna and I headed to NC 6 years ago. Amazing!
She will start pulmonary rehab on Thursday. This is an exercise program that all transplant patients are required to go through to prepare their bodies for the grueling transplant surgery and recovery. After about 4 weeks of rehab she will be placed on the waiting list for a pair of lungs. Last time Anna waited just 19 days for her new, gently used lungs. We don’t know how long the wait will be this time but she has been told it is likely longer the second time because the doctors will be more selective hoping to get a better match that her body won’t reject.
The origin of those lungs is another person who dies. That’s a tough aspect of this process. Here we are doing what we can so Anna can live but someone else must die in order for her to get a chance at life. Another family’s loss is our family’s gain. Hard to swallow that. Anna reminds me the person isn’t dying for her, they would die anyway. For those who choose to be organ donors, their inevitable death brings the chance for life to so many others. We are grateful!
This is a new form of limbo for Anna because she’s not moving completely forward yet. But, it’s movement and that is healing for her emotionally. This whole journey does not offer guarantees. I have laid out the plan but anything can happen. We pray and wait expectantly for healing for Anna, for progressive movement toward a transplant, successful recovery and back to active living again. We wait with open hands as none of this is in our control. I learned a lot about waiting on God and understanding He is God and I am not throughout Anna’s last transplant and subsequent cancer journeys 6 years ago. I am leaning into that learning and curious about the different ways God will show up this time around. I’ll be sure to share these learnings with you!
BTW if you are at all interested in contributing to Anna’s COTA fund, click here. COTA is a non-profit that accepts donations on behalf of a specific person. They manage the funds and reimburse Anna for her transplant related expenses (medical co-pays, transportation, housing away from home and food). It’s kind of like Go Fund Me except you are guaranteed that the funds are used only for transplant related expenses and they are tax deductible. 🙂
When we don’t know what’s up 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. 🙂
December 2, 2018: 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.
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!