Posts Tagged With: cystic fibrosis

Anna Update

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. ūüėČ 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!

Categories: Anna the lemon | Tags: , | 6 Comments

Anna Update

anna-at-duke.jpgI 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. ūüôā

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Look Who’s Turning 25!

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Many of you have followed my daughter, Anna’s journey with Cystic Fibrosis, a lung transplant and cancer. She is still doing really well and turns 25 tomorrow!!! I can hardly believe I have a 25 year old daughter…I was 10 when I had her! ūüôā
She survived another round of rejection this summer, still shows no signs of cancer and is back in college hoping to graduate in about a year and a half. Happy Quarter of a Century Birthday, Anna!!!

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Predicting The Unpredictable

I don’t really mean we can predict what’s going to happen but we can predict there will be winding, unexpected occurrences in our lives. I’m certain you know what I mean because if you are breathing you have experienced some moments or seasons you did not think were going to happen. Sometimes they can be good things…sometimes they don’t seem good at all. The best job you can imagine…a baby…a broken bone…a new house…a free cup of coffee…an accident…a call from a friend…a broken water pipe…cancer…a puppy… I could go on but I think you get the point. We have no idea what is going to happen in the next second, really. We can guess and sometimes our guesses are spot on but we don’t really know. Anything can happen. And you know what? That is life.

One of the biggest dangers we can get caught in is believing we know what’s going to happen. We are making assumptions and you know what they say when we assume? It makes an ass out of u and me.¬†What’s even worse is we set ourselves up for disappointment. We can¬†slip into an emotional downward spiral because we assumed or predibutterfly on flowerscted and we were wrong. One of the best words of wisdom I’ve heard was from a man named Toby Shope. He was preparing me and others for a journey to Afghanistan. We learned how to dress and¬†act to honor the Afghan culture.
Toby taught us to have a blank slate approach to our experience. Just let the canvas be filled in as I take each step of the journey. This concept has helped me so many times since the day I learned it in 2010.

My daughter Anna, whom I have mentioned in many previous posts, has Cystic Fibrosis and received a lung transplant in 2013. She’s experienced so many set back and challenges throughout her life. Just recently she learned she has rejection. At this point it’s treatable so we are hopeful.¬†Learning of the rejection was a reminder that so much in our lives is out of our hands. The less I cling to what I think should happen the easier it is to accept what is happening…to let the blank parts on my canvas of life be filled in as I take the steps rather than having to waste a ton of energy erasing what I thought would happen and then trying to fit what is happening on top of the erased parts. It’s cleaner if I just let it happen…it’s going to happen anyway.

Categories: Acceptance, Depression, Growth, Recovery, Self-Help | Tags: , , , , , , , | Leave a comment

Anna’s Raising Money for Cystic Fibrosis Research

Anna, my 24 year old daughter, wants to get as many people as possible to help her raise money for Cystic Fibrosis research. The Cystic Fibrosis Foundation is one of the most fiscally responsible non-profits, ensuring that nearly .90 from every dollar raised goes to support research and programs for Cystic Fibrosis. To raise money, Anna is leading a team for the Denver Climb, a grueling stair climbing race held at Invesco Field/Mile High Stadium on June 25. If you want to join her team or support her team members click here

She is also selling her “I Love a Lemon” t-shirts with all proceeds going to the Cystic Fibrosis Foundation. Click here if you want to buy a t-shirt but hurry because sales close at 11:59p this Friday June 13…sorry for the short notice!

The phrase¬†“I love a lemon” came about after Anna was diagnosed with PTLD, a form of lymphoma that affects transplant recipients. Her sister, Grace blurted out, “Anna, you are a lemon!” It was funny to all of us, including Anna and she has been our lemon ever since. If you have just one major issue it’s bad enough but Anna has had four! She put together a video capturing her journey through life so far. If you’re interested in watching that, click here

Thank you!                                                                                                                                                              Karen

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Update From Anna

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:

http://ontonewwindows.blogspot.com/2016/04/its-end.html

 

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Another Anna Update

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! ūüôā

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 ūüôā

If you want to wish Anna a Happy Birthday you may do so at her blog or on her Facebook page.

Happy Thursday!

Karen

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Look Who’s Back at School!

Anna at GCUAfter 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!

Categories: Acceptance, Healing | Tags: , , , | 1 Comment

Reflecting On The Last Year’s Journey

It has been almost a year since my daughter, Anna started on a new journey…cancer. ¬†She had been lethargic and nauseous for a week or so. ¬†I’m divorced and my kids have been alternating from their dad’s house to mine on a weekly basis for 10 years. ¬†I hadn’t seen her for a week and she looked awful to me. I suggested she call her doctor (she was 22 then and responsible for making her appointments and communicating with her medical teams). ¬†She got an appointment with her cystic fibrosis (CF) Dr. who thought the problem was an intestinal blockage and sent us home with a colonoscopy prep cleanse. ¬†Not for a colonoscopy, just for cleaning out the pipes. ¬†It didn’t produce much since Anna had not eaten for several days. ¬†The next day she felt worse. ¬†I took her for her regular lab draw and she could barely walk due to dizziness. ¬†She was so pale. ¬†Something was wrong but we didn’t know what. ¬†After the blood draw, she said she felt like she did after her lung transplant when she needed a few units of blood. ¬†I told her to call her Dr. right then and find out what to do. ¬†Thankfully she instructed us to head to the ER at the University of Colorado Hospital. ¬†That was the beginning of discovering she had Posttransplant Lymphoproliferative Disorder (PTLD), a form of lymphoma.

At the time, our world was spinning rapidly out of control. ¬†We have dealt with hospitals and doctors since Anna was four weeks old, the day we discovered she had CF. ¬†We’ve gone through the challenges of a double lung transplant. ¬†But cancer!? ¬†It just seemed like too much and everything felt new and exhausting. ¬†It was a turn in our lives that sent me reeling at times. ¬†I remember fighting to keep myself from spinning wildly out of control with fear and anger. ¬†It felt like a monster grabbing for my ankles, its nasty tentacles hungry for something to devour and I was its target. ¬†That was by far the worst season of my life. And it’s over…it’s over! ¬†It’s been over since last December when we heard there were no signs of cancer in her body. ¬†Chemo worked its magic. ¬†It doesn’t always work, not for everyone. ¬†One of Anna’s transplant friends who was diagnosed with PTLD near the time she was, died. ¬†He didn’t get to hear, “There are no signs of cancer in your body.” ¬†But we got to hear it. ¬†I hate that part, not that we got to hear it but he and his family didn’t. ¬†Surviving is a gift but it carries with it the reminder that not everyone survives. ¬†Whether it’s cancer, CF, a plane crash…some survive and some do not and that knowledge is just plain heavy.

Anna recently had another visit to the shiny medical capital of Duke University Hospital in Durham, NC.  She got to hear again that everything looks great!  All her numbers, the indicators of her health, are pointing toward success.  Her lungs have expanded since her transplant, filling her chest cavity beautifully, happy in their new home.  Her blood work indicates no signs of cancer.  Her Dr.s beamed with pride and excitement about her robust health.  They spoke this audibly so she, her grandmother (my mom) and I could hear it and share in the good news.

Tears are filling my eyes while recollecting the past year and seeing where our journey has brought us, at least for now. ¬†I also fully recognize, having lived it at extremes for a few years now, that life is unpredictable. ¬†At any moment our world can change. ¬†I’m challenged to find the balance of enjoying the now while embracing the unknown. Just holding it with curiosity, wonder and healthy respect. ¬†Not fearing it and allowing it to consume me unnecessarily.

Categories: Acceptance, Growth, Healing | Tags: , , , , , , , , , , | 2 Comments

Rest Stop

I am pulling off at a rest-stop on our journey toward more successfully navigating the holidays to bring you an update on my daughter. If you are just reading this blog, I will bring you up to speed. I have a 23 year old daughter. Her name is Anna and she writes her own blog, On To New Windows and doesn’t mind me sharing her story with you. She was born with a genetic disease called Cystic Fibrosis (CF). It’s a nasty disease that messes with the digestive system and lungs. Besides having a terrible time gaining weight and needing insulin injections to level-out her blood sugar, Anna’s lungs deteriorated every day. Eventually, they became worthless at sustaining her life. Her only chance at survival rested on receiving a double-lung transplant. She was fortunate to get a wonderful pair of gently used lungs from a still unknown deceased donor on October 12, 2013 at Duke University Hospital.

After about six months of recovery, Anna was beginning to feel fabulous and started making plans to go back to college and pursue the life of a regular 22 year old. Without warning, she started getting really sick at the end of May. She was having trouble keeping food down, lost her appetite and grew more and more pale with every passing day. As if she hadn’t already been through enough, she was diagnosed with Lymphoma in early July. After enduring five months of intense in-patient chemotherapy there is no sign of cancer in her body!

Her once bald head is now covered with tiny hairs, her budding eyebrows and eye lashes are visible again and she feels energetic. Her lungs are strong and currently rejection-free. She is perfectly poised to get back to school and pursue her biology degree. Just wanted to share this good news with you!!!

Categories: Self-Help | Tags: , , , , , | 10 Comments

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