Anna Got Her Lungs!

Anna Got Her Lungs!

Hours after Anna’s double lung transplant

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!
Just Waiting

Just Waiting

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!”

It’s Easier The Second Time

I’m back in Durham, NC with my daughter, Anna. She has been listed for a double lung transplant. That means she is in the national registry of patients waiting for donor lungs. The first time she was listed 6 years ago, we thought the call would literally be in minutes after being listed. The wait was 19 days. When thinking in seconds, that seemed like an excruciatingly long time. This time around, we know not to hold our breath. We have been prepared by the Drs that this wait will likely be longer. Anna’s body has figured out some details about her current lungs that make it more likely to spot the second set more quickly if they have similar antibodies to the first set. So we have buckled in and are ready for the wait.

I love knowing, being aware of what is going on or likely to happen. So much of Anna’s journey has been filled with the opposite and I have to work super hard to just be in the moment. Honestly, I don’t really know what’s going to happen with her second transplant journey but I like to fool myself into thinking I know something. I do know the area, literally, and can drive with more ease as we go to appointments, classes and pre-transplant rehab. The classes help educate the patients and caregivers so we know what’s going on and what to do about all things transplant. For the most part they are refreshers since this isn’t my first rodeo. But there’s a lot of new information and classes they didn’t have 6 years ago. I am thankful to learn and relearn.

I feel more patient this time around. I like that feeling. On the flip side I also feel more dread. I don’t really know why but I do. Transplant has all kinds of nasty worse case possibilities from loss of fingers to death. I feel the weight of that more this time. It’s hard to hold my daughter loosely; remembering she is not mine and I do not have control over how her life goes. I was reminded of this in our Caregivers’ Support Group. It felt good to let myself connect with my fears and my sadness. Sometimes I can get wrapped up in tasks that I forget about the fragility of this journey.

Anna Is Moving Out Of Limbo!

Anna Is Moving Out Of Limbo!

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. 🙂

Hindsight

Hindsight

In Living in the Moment, I talked about making decisions with the information you have at the time. Here we are nearly six months later and Anna is wishing she had stayed in Phoenix. Her treatments stabilized her lung functions and she is hovering at 30% lung capacity. Not bad enough for a lung transplant, not good enough to have much energy, especially at 5200 feet in Colorado. She wishes she knew this is how things would be for her. If she did, she would have kept her apartment and only taken a medical leave. Instead she is sitting in Colorado waiting…waiting for her lungs to fail further so she can move to North Carolina and start the process for getting listed for new lungs.

The best we can do for ourselves when we have the view of the past from the present is give grace for the decision we made. Anna’s decision seemed the best at the time given the limited knowledge she had.

Living In The Moment

Living In The Moment

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. 🙂