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: email@example.com
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!