Posts Tagged With: Duke University Hospital

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! 🙂

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.

Happy Thursday!


Categories: Self-Help | Tags: , , , , , , , | Leave a 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

We Keep Moving Forward

When I hear about people’s heartbreaks and difficult circumstances, I usually wonder how they get through it. After all I have experienced with my daughter, I know how we get through the tough stuff: one step at a time. We just keep moving forward, dealing with the diagnosis or sad news. We cry, we yell, then we get up and do what we have to do each day. There’s no magic formula and there’s nothing really special about us when we do this. Like, we have some super power that others don’t have. I think it’s woven into our being to survive.

Now and then a person will be so paralyzed by fear or depression they give-up and check out. These situations are more the anomaly than the norm. And to some degree it may be the cards they were dealt that screw with their brain chemistry; it could be recreational drug use (drugs can negatively alter our brain chemistry so drug users beware!). If you find yourself in this category, get help. While psychiatric medications are not always the answer and can’t help everyone, some need them, just like a diabetic needs insulin injections to survive.

Update on my daughter: She was diagnosed with stage 4 Lymphoma and is just finishing a five day chemo treatment she received at Duke University Hospital. She’s doing well. Not too many side effects yet. We’ve heard the first round is the easiest. She’ll be coming back to Duke at the end of the month for her next round of chemo. She’ll do this about six times. In between chemo, we’ll be in Colorado. We’ll see how things go, but at least for now Anna gets to be home!

Categories: Depression | Tags: , , , , | Leave a comment

The Roller Coaster

I’m sidetracking from the theme of my recent posts and will get back to them in the next few weeks. For now, my roller coaster car is slowly, loudly, frighteningly clicking it’s way to the top of yet another peak. Last October my 22 year old daughter received a life-renewing double lung transplant. Last Friday she ended up in the ER in Denver with very little blood in her body. She needed blood but wasn’t bleeding from anywhere. So what happened to her blood? After a few tests, the culprit seemed to be cancer. Anna and I flew in an air ambulance back to Duke Hospital for further testing. This week, we heard again that she likely has cancer. We do not have any definitive results yet, but everything is pointing toward a version of lymphoma that is hand-picked just for transplant recipients: Post Transplant Lymphoproliferative Disease. At this point nothing is for sure, hence the click-click-click as my roller coaster car inches up, up, up. It may be chemo, it may be a different, less intense drug therapy, it may be we stay in North Carolina, it may be we go back and forth between NC and Colorado, it may be any manner of events; it’s just a lot of “may be’s”.

That’s how life is sometimes. We don’t know what to expect. We only know this moment in time. We only know to breathe in and breathe out and then do that again. Support is key during times like this. Reach out to those who can hold you right where you are. If you need to grieve possibilities, name them as possibilities and let the tears flow. If you’re angry, then let yourself feel the anger and give it an appropriate outlet. If you are gripped by fear, name it as well and let it have its space. Though it’s important to process what we know is true and real, possibilities are, at times, all we have and we find them affecting us. We give them a place to be heard and expressed so they can be processed.

Click-click-click, breathe-breathe-breathe

Categories: Acceptance, Emotional Healing, Growth, Healing, Processing Thoughts and Emotions, Recovery | Tags: , , , , , , , | 1 Comment

Checking the Rearview Mirror

Three weeks after surgery

Three weeks after surgery

Just after surgery, hanging on

Just after surgery, hanging on

It’s important to live in the present. It can be helpful to learn from the past. If you are still alive, a given if you are reading this, then you have survived whatever you have gone through. At times, when we are in the midst of something intense, we can be overwhelmed by the unknown. We don’t know how things will turn out. We feel we can’t possibly survive the experience. We don’t know how we will move on. That’s what happens when we are looking out the windshield of life. When we see what is happening to us. Sometimes we add to the view with stories we create that may magnify what we are looking at and skew our view toward the awful. Possibilities become certainties in our mind.

At times like this I think it’s helpful to look at the rearview mirror, all the experiences we have had. We can see that, although incredibly painful or difficult at times, we have survived everything that was once in our view out the windshield. We may have lingering effects of the experience like PTSD, anger, bitterness, resentment, distrust, a negative view of ourselves, but we have survived. The lingering effects can be healed with good therapy, supportive friends and sometimes medication. We can move forward in our lives, stronger, and more determined to live knowing we can deal with the windshield because we have the rear view mirror.

My daughter waited 20 days from the time she was put on the waitlist for a lung transplant to the day she received her gently used lungs. At first the wait seemed interminable, but then we settled into a routine of just being ok with each day and whatever it brought to us. We let go of being home by Christmas. We just took life a breath at a time, and it was not intolerable. Then she got the call, “We have lungs for you!” This started another journey of unknowns. Her surgery, while successful, nearly killed her. The doctors had to heavily drug her to get her heart to beat. Then the once fabulous lungs, began to fail. Her life was on the line. There was a chance she wouldn’t survive. She was put on a lung bypass machine called ECMO. All her blood was cycled out of her body, oxygenated, then returned. She was heavily sedated and clueless about her situation for a few days. She was on a ventilator. She was kept alive by machines and medications. I had no idea what was going to happen to my daughter. Would she wake up so I could see her beautiful blue-green eyes? Would she slip away and be gone after giving one last ditch effort to survive? I knew nothing and the windshield presented very little, a few road signs indicating danger but mostly the fog of uncertainty. I had to hang on to her being OK. Each day I saw her alive. That was also part of the view out my windshield. A daughter who was still breathing, it was through a machine, but she was still breathing. I had moments where I broke down in tears. It was just too much to hold. I had to release the fear and sadness. Mostly I tried to keep my view on reality, not possibilities, because the ‘could-be’s’ were not the ‘are’. This took every bit of strength I had. In part I wanted to be focused and strong for my daughter. I didn’t want to bring doom and gloom into her ICU room.

After almost a week in the ICU she progressed beautifully. Her heart started working and her lungs began to do their job oxygenating her blood on their own. At this time the doctors discovered her epiglottis was paralyzed. A paralyzed epiglottis means no eating or drinking ever again. The epiglottis protects the lungs from the food and liquids we eat. Getting anything other than air in the lungs could mean damage and eventually failure of the lungs. The price paid for these lungs by the person whose gift in death was life for Anna is too high to throw away on the satisfaction of eating. I was so angry about this, angry that God would allow it. I shouted my “not fair” to him. I know life is valuable but think about how much of our lives and social connections revolve around food. Would she have gotten through this? Sure. But as a mother, I did not want her to trade one negative for another. Guess what? That sleepy epiglottis woke up. It took until just recently to fully function, but wake up, it has!

What’s in my rearview mirror? The reality that everything can work out well. All the happenings of the past five weeks have been like a roller coaster ride. Everything that could have ended badly, hasn’t. My daughter has a long road of healing ahead of her. She will also face a heightened risk for infections due to the immune suppressing drugs she must take for the rest of her life so her body won’t reject her lungs. She must deal with nausea, tremors, a puffy face, and just not feeling like herself because of all the medications she takes. She has to wear a mask and avoid being in crowds to protect herself from all the viruses and bacteria the rest of us spread every time people take their illnesses out of their houses and into the world around them. (Yes, a message to stay home any time you are sick to protect others!)

You get it, right? A lot of really wonderful things have happened for my daughter but there are hard things, too. And she will deal with them since she can look in her rear view mirror and see how far she has come! I am reminded how important it is to be present and look out the windshield with those ever necessary glances out the rear view mirror to remind me, I can do this!

Categories: Depression, Relationships, Self-Help | Tags: , , , , , | 5 Comments

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