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!
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!
I’m in Phoenix. That sentence is void of detail. You might have given it meaning that isn’t there. We do that. We hear, see or experience something and add all kinds of layers that don’t actually exist. You may have thought I’m in Phoenix to enjoy the sun and get away from the snow in Colorado. Or maybe I came for a conference. Both are inaccurate. It is raining today so if I came for the sun I wouldn’t be getting any today. It was sunny earlier so I did get to enjoy the tiny bit of sun I got walking from where I’m staying to the hospital. And yesterday when Anna was taken for X-rays. But that’s it. I am learning more about the medical world and the life of a transplant recipient, but it’s not a conference.
Anna developed pneumonia after first being exposed to parainfluenza 3 (a strain of influenza commonly affecting children and often the cause of respiratory illnesses). Another reminder to keep our sick selves and our sick children isolated until healthy again. 😉
Several of Anna’s transplant friends were hospitalized for pneumonia and they never got better. Just a reminder of the fragility of life but not the truth for Anna today. What she knows is her body is responding to treatment. She is getting better. As of today, Anna is healing and doing well. Her focus (and mine) is on what we know to be true and real today.
I am in Phoenix. Now you understand what that really means. Remember to keep your focus on what you know is true and real, beyond a shadow of doubt. You will experience a great deal of peace and save the anxiety, sadness or anger until absolutely necessary. 😊
Categories: Acceptance, Depression, Emotional Healing, Growth, Healing, Recovery, Relationships
Tags: Anna, catastrophic thinking, catastrophizing, creating stories, lung transplant
Anna is my 24 year old daughter. She has a genetic disease called Cystic Fibrosis. It makes all her mucous extra thick and sticky. The effects cause life threatening issues with digestion, the pancreas and lungs. On October 12, 2013 Anna received a double lung transplant after her lungs failed to sustain her life. Nine months after her transplant she was diagnosed with PTLD, a form of lymphoma specific to those who have received transplants due to the anti-rejection medication transplant recipients must take for the rest of their lives. After six months of chemotherapy, Anna was and continues to be cancer-free. She went back to college at Grand Canyon University in Phoenix last August after missing two years. Here’s her latest blog post:
Anna was at Duke University Clinic last week for a check up. She had a bronchoscopy (bronch) and learned she does not have rejection!!! No rejection means longer spans between bronchs and are a sign that her body is, at least for now, accepting her gently used lungs. She has an infection and started a round of antibiotics that should take care of it. It’s not debilitating and she continues to go to classes and work on making friends. She says Pepper has more friends than she does. This is not hard to believe because cute fur balls who love people generally attract a lot of attention! 🙂
Today is a big day for Anna. It is her Golden Birthday!!! In case you don’t know the magic of the Golden Birthday, it’s the day you turn the age of your birthdate. Today is September 24th and Anna is 24!!! I seriously can’t believe I am the mother of a 24 year old. I’m turning 50 at the end of this year so I guess it makes sense, but I still have a hard time believing how quickly my first-born has reached this Golden Birthday! We are all certainly thankful she has! I don’t really care that I have to get older in order for my children to age. There’s something about the years marching on that brings me a sense of “this is how life should be” and I like it. I could do without the slowing metabolism, disintegrating muscle tone and loose skin but if that’s part of the price I must pay to watch my children flying out of the nest and on into their lives, then so be it. I’ll try to keep my vain complaints to a minimum 🙂
If you want to wish Anna a Happy Birthday you may do so at her blog or on her Facebook page.
After a two year break from going to college my daughter, Anna, along with her service dog, Pepper, is back on campus! She is so excited to just be a normal 23 year old. She spent the last two years getting a double lung transplant and then cancer. These were not at all part of her life plan! That is the nature of life though, lots of unpredictability. Sometimes it’s good and sometimes not. Anna has learned to take life in stride. She doesn’t assume everything will go well but she doesn’t live under a cloud of doom either. She lives in that sweet spot of “it is what it is” one moment at a time, one step at a time, one breath at a time!