I can’t remember when I last posted about Anna so I figured it’s time to write about her. She and her sweet dog are here in Colorado living with me and my husband. She is doing better now than she has in a long time. Her recovery from this second lung transplant was harder than her last but the upside is she didn’t get cancer this time (let’s hope it stays that way!). So far, she is rejection and infection free. She is gaining weight and has not used her gj-tube (a port on her abdomen to put formula into her stomach) in a few months. That alone is a good sign.
She just started taking Trikafta, the new breakthrough medication for cystic fibrosis. The hope is it will correct what cf screws up which should mean fewer sinus, digestive, and pancreatic issues for Anna. It won’t do too much for her lungs since they have the dna of the donor and don’t have cf but it should help her body to be overall healthier which should translate into a longer life. We hope so!
Although Anna is still living at home (rarely the goal of an almost 29 year old!), she is getting closer to one day being on her own again. Being physically able to work enough to support herself is a challenge right now. She continues to teach English online and has added a new venture. She is now a Pampered Chef consultant! Needless to say, I am beginning to acquire a bunch of kitchen products. 😉 Anna is, too! It warms my heart to see her enthusiasm for the products and for her customers. Since everything is being done online anyone can participate. If you’re interested in hosting a party or buying products to make cooking more enjoyable, contact Anna through her Pampered Chef Site.
For me, it feels relaxing to be on this side of her second transplant journey. We are home, there’s more predictability (not that any of us really know what’s going to happen but I think you know what I mean), and I’m not living in the is-she-going-to-make-it space. COVID hasn’t posed as big of an issue as you might think. It does make it more difficult for Anna to work but she is figuring out things she can do that minimize her contact with people. We are well-versed in virus-fighting protocols and doing our best to keep viruses and bacteria out of our home. So far, we’re all doing well. I hope you are, too!
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!”
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 and her dog
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 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. 🙂