Posts Tagged With: Duke Lung Transplant

Living in ‘What is’

Anna has returned home from Duke Hospital! She is laying low and doing her best to avoid all the nasty germs since her immune system is not strong.  She is getting back to just living a normal life. She will return to her new apartment in Phoenix next week. She is in a friend’s wedding next weekend and then she will start her internship at Southwest Behavioral Health.

I asked her how she is doing with her diagnosis of chronic rejection. She said she is choosing not to think about it. There is nothing she can do to change it. Moping around about it sucks life out of her and makes the present very gloomy. She is living in the moment of what is rather than what could be. She spent some time crying about it and then wiped her tears and said, “OK.”

I’m sure those tears will crop back up now and then. She’ll feel them and then continue to move forward. That’s the healthiest way to deal with the harsh realities of life. She sets a fabulous model for all of us as we face our own challenges, disappointments, and pain. Feel them if they are real, let the tears fall, and then wipe our eyes and move on. Live in the now, not the ‘what could be’.

Categories: Acceptance, Emotional Healing, Self-Help | Tags: , | Leave a comment

Brief Update on Anna

2018 is starting out well! Anna has tolerated the rATG very well. The worst side effect so far has been a headache. That’s it! Yay!!! Thank you all for your continued support! It will take time before we know if the chronic rejection stops stealing her lung capacity. I’m assuming she will be followed fairly closely to keep an eye on it. I’ll keep you posted. For now, I think we can all breathe a sigh of relief. She still has a few days of being in the hospital while continuing the rATG treatment.  I have returned home due to a work obligation. She is in good hands though! Besides our wonderful friends and family in North Carolina, her boyfriend, Michael is keeping a close eye on her 🙂

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Just Keep Swimming…

We have some answers about Anna. She has both acute and chronic rejection. Acute rejection is usually treatable. Anna has had this before. A few days of intense IV steroids have stopped it every time. Chronic rejection sometimes stops but the damage is irreversible. It causes scar tissue in the lungs. Lungs and scar-tissue don’t go very well together because scar tissue doesn’t expand like healthy lung tissue. As a result of the scarring, Anna’s lung functions have dropped to 62%.

Today, she started an IV treatment called rATG. It’s supposed to stop the acute rejection. I’m a bit confused about how or if this will help the chronic rejection. The rATG has some bad side-effects. Some people tolerate it just fine. Some end up with intense flu-like symptoms. Some have blood pressure issues and end up in the ICU. Some get PTLD. If you have followed Anna, you might recognize those four letters as the type of cancer she got. Side effects or complications are not one size fits all. Anna might be totally fine. At the moment she is in a Benadryl induced nap.

So here we are again staying in the here and now. I’m mad about the lost lung functions. I’m mad about the chronic rejection. I’m also sad about both. I stop there. I have to. I feel this heaviness in the center of my chest. It’s a ball of tears that just want to come pouring out. They will. I will let them, just not now. Right now Anna is staying upbeat and positive. She joked about how the last time she had Benadryl, she thought her hospital room was the portal to heaven and she called her brother and cousin to tell them they needed to get to her room or they would be left behind. So far, she’s not having that kind of fun!

I hear Dory sweetly reminding me, “Just keep swimming, just keep swimming…” So that’s what we will do. Breathe and make the best of now. It’s New Year’s Eve. We must celebrate!

Categories: Acceptance, Growth, Recovery, Self-Help | Tags: | 1 Comment

Opportunity to Practice

On Thursday I was casually enjoying coffee with a friend. My plan for the day was to take care of a few errands and then head up to Buffalo, WY to enjoy my Birthday and New

Year’s with family there. I got a text from my step-daughter that my granddaughter was super sick and it might be good to put our trip off by a day or two. Plans change. Within an hour, I got another call. This one was from a nurse breaking the news that my daughter, Anna needed to get on a plane and head to Duke Hospital ASAP. Anna had gone to the Dr. for a regular checkup. While there, they discovered her lung function had decreased significantly. After a conversation with her team at Duke it was determined she needed to be treated there. By 5:30p we were on a flight to Raleigh/Durham. After we arrived, Anna was immediately admitted to the hospital. We don’t know exactly what’s going on. The likely culprit is rejection, but we won’t know for sure for a few days.

When I first heard about this I just listened. My next step was to call my husband and let him know. As I talked to him the gravity of it all started to sink in and I started crying.  I cried for Anna because she, her dad, stepmom, brother and sister were supposed to leave on Sunday for their first-ever cruise. Anna was extremely excited about it and to hear she couldn’t go left her crying so hard she couldn’t tell me, that’s why the nurse called me. I also cried because I feared the worst: irreversible rejection. That’s where I started sinking. Fearing the unknown.

While sitting on the airplane I realized I was future-tripping. My eyes felt hot and tired and I started crying again. Then it hit me, I have no idea what’s going on with Anna’s lungs. This could all be an over-reaction. It could be minor rejection. It could be devastating rejection where the only solution is another transplant. These are all “could-be’s” none are a reality any human is aware of at this point. So I stopped myself. I said I will deal with reality when I know it. For now, stay with what I know is true and real.

That is what I am doing: staying in the here and now. It’s very freeing. Every time the sneaky future-buggers start yipping about how this might happen or that might happen, I quickly quiet them down with, “There aren’t any answers right now.” It simply requires awareness and intentional thought. Simple, not always easy, but always freeing!

Categories: Acceptance, Emotional Healing, Growth, Healing, Recovery, Self-Help | Tags: | 5 Comments

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

Categories: Self-Help | 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

Clinging to the Present

At times in our journey through life, it becomes increasingly more difficult to live in the present. We don’t know what is going to happen regarding our health, our finances, our children, or relationships. Much of life is out of our hands, so what do we do? Continue to live in the knowledge of this moment. No matter what is happening. Your boyfriend may be ending his interest in you, your daughter may be moving hundreds of miles away, your bank account may be draining rapidly without much hope of deposits, your job may be on a precarious ledge. We may react to these occurrences with fear or perhaps sadness, and that’s ok. Keep your focus on the emotion connected to the in-the-present situation. It’s sad when a loved one leaves or ends a relationship with us, it’s scary when we aren’t sure how things will work out for us.

Take a deep breath. Remind yourself that you can get through this. Talk to good, trusted friends about how you are feeling and ask to be held accountable to not creating stories about how your situation will end. Remember that rearview mirror? You have made it to today. You will make it through the next breath. That is your focus, this breath, this moment.

I’m feeling this right now. My daughter and I are heading back to North Carolina for a check-up. She is not doing well. She has lost 10-15 pounds since we returned home, she is lethargic and not feeling well. She has done what she can to let her transplant coordinator know of her situation without any concern from her. Maybe all is well. I do not know. I can only look at what I see, feel my fear, take a breath and let it go. We will have answers in about a week. I will deal with the answers when we get them. Until then: No stories, feel my fear for a moment then let it go as I take a long, slow deep breath. The God of the universe is in control, I can rest knowing that whatever the answers are, He will help me.

Categories: Depression, Growth, Relationships, Self-Help | Tags: , , , , , , , | 2 Comments

A Time for Reflecting

The New Year usually stirs a desire within me to get away for a bit and look back over the past year. Unfortunately, I can easily slip through the holidays and into the next year without taking the time to reflect. This year was too eventful for me not to protect the valuable processing. Several times in the last two weeks I have stopped for just a split second and felt a pressing to linger and ponder but each time I was in the middle of a pool of family; people I love and moments I didn’t want to lose. So I made a promise to myself during those bits of seconds, that I would hit pause before jumping into 2014 to be still and take stock of my year.

The first six months of 2013 were as I expected. Few surprises popped up until May 30. That was the beginning of a tremendously unpredictable half a year. That was my daughter’s first hospitalization of the year. Hospitalizations have happened many times in the past but last year she spent 4 out of six weeks in the hospital. She was in for two weeks, out for two weeks, then right back in again for two more weeks. The reality of her failing lungs could no longer hide. And as many of you know, the rest of 2013 involved moving to North Carolina so Anna could receive her life-saving double lung transplant. She did, she healed and now we are home. Nine words can sum up the last six months of 2013. There is something very empty about succinctly summing up events in our lives. It really isn’t that simple, is it? We fought, we separated, we divorced. He got sick, he was diagnosed, he died. She was challenged, she sought help, she overcame.

Just a few words aren’t enough. Just a quick ponder isn’t sufficient. We must take time to reflect on the happenings in our lives. Time that offers a gift to our deepest selves to grieve and to heal. For the bright parts of our lives, reflecting provides the sweet soaking in of something wonderful rather than swiftly glossing over it. Give yourself a present no one else can, time to consider the last year. To look over the highs and lows and everything in between. Let the memories come and go as they please. Allow the tears or smiles freedom to exist in any manner of hue they desire. Give a nod to new awarenesses and growth within. Notice the areas still lacking with a gentle acceptance steering clear of berating yourself.

We don’t just look once and then shut it all down, thoughts and memories will come and go throughout our lifetime but the concentrated time given to pondering is powerful. Be intentional and give yourself the gift of reflecting.

Categories: Growth, Self-Help | Tags: , , , , , | 1 Comment

Giving Others Space to be Real

My intention is not to turn this into “my daughter’s lung transplant journey” but it is a consuming and ever present experience in my life right now.  I will weave potentially useful skills into my narratives 🙂  Last week my daughter and I were in Durham, NC while she underwent five intense days of evaluation geared toward determining her eligibility for a lung transplant.  You can read all about her view of the entire process at www.ontonewwindows.blogspot.com.  In Duke-like efficiency (the best I have ever experienced!) we heard on Tuesday that she has been accepted into their Lung Transplant Program.  On Tuesday August 20th she and I will head back to Durham for the entire process of getting her on the lung transplant list through surgery and recovery.  We will be gone for 3-6 months, maybe longer.

My role as her primary caregiver is to be physically and emotionally healthy enough to provide the support she will need when she goes through the transplant and recovery.  At times during the evaluation week, I wondered if I am up to the task.  Toward the end of the week she got grouchy.  Really, I can understand it now but one day she snapped at me and I mentioned she wasn’t using a kind tone with me.  This started a bit of an argument between us.  For a moment I thought, “Fine, you want to have someone else be your caregiver?!”  It was a split second, but the words did float through my mind.  A reminder that I still have that very reactionary and defensive part alive and well within me!   Within a few minutes I realized she has to have space to be grouchy and I need to work on not taking it personally.  We were both tired, but she was exceptionally exhausted from the tests and early mornings.  She’d been poked and prodded for five days and she was reaching her limit.

I remember when my kids were little I would tell them they couldn’t cry in public.  I was very image conscious and in my mind crying children did not reflect positively on me.  I was essentially telling them they had to be a certain person in public who was different from their true self.  Ugh! To have those days back again…  I have to allow people around me to be where they are emotionally, physically and spiritually.   I can embrace Anna right where she is…in pain, uncomfortable, tired, scared.  Whatever the case may be.

It seems no matter where I am in my life, I face parts of me that need some work.  That’s OK.  I think that’s because I am still breathing 🙂 It’s all a part of the journey and I’m thankful Anna is ultimately patient, forgiving and understanding.

Categories: Boundaries, Forgiveness, Relationships | Tags: , , | 2 Comments

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