About The Journey Back to Life

Curious about life and eager to get the most out of every day despite being beat down and trampled by events in my life. Somehow I still manage to keep my head above water. I am here to share my experiences about caregiving and lung transplant.

Seize the Day

Sometimes the worry and the exhaustion of dealing with a life threatening medical issue on a daily basis can really wear you down. You just feel like escaping and have to deal with the fight or flight syndrome over and over and over again.

I have found that at those times you need to look for the good and the positive in the every day to pull you back up.

Today I was driving home, in my now normal state of anxiety, and a white convertible passed me with the top down. I could see two little girls huddled in the back seat giggling with joy at the wind in their hair. They couldn’t have been more than five or six years old. As they passed me, one of the little girls turned to me and threw me an enormous smile as she waved at me. The look on her face was one of sheer delight and happiness. It was almost as if she sensed that I needed something to turn my day around. I couldn’t help but smile and it was almost as if a weight was lifted from my shoulders.

It is that easy to change someone’s day for the better. Thank you beautiful little girl. You made my day.

If you would like to donate to Michael’s transplant fund, please click here.



Happy Ending

I am sending the love of my life off on a journey….but it is a journey that I wish wasn’t necessary. He will soon be traveling to Arizona to wait for his double lung transplant.

And although we have been pretty much inseparable for nearly 10 years, I can’t accompany him on his journey. I may not even be able to make it to his side when the call comes telling him that they have found a match, that he may be getting his 2nd chance at life through organ donation. But the hope of some good years together with  my partner and soul mate has kept me going.

Some rather grim statistics were released yesterday with Facebook Founder, Mark Zuckerberg’s announcement that Facebook would be adding an organ donation option to the site. According to the United Network for Organ Sharing (UNOS), more than 114,000 Americans are currently on waiting lists for transplants of kidneys, livers, hearts and other organs. More than 6,600 died last year waiting for an organ.

Friends, family and even many people that we barely know have been so supportive. Asking for help is never easy, but we have witnessed an extraordinary effort from so many to help us achieve what seemed like an impossible goal. All the help, compassion, encouragement and financial support has helped ease a difficult path. Thanks to all of you that were there for us when we needed you. I only hope that we can somehow repay your generosity and kindness.

I pray that you send positive thoughts our way and that we will have a long and happy ending to our fairytale love.

Cinderella wants to dance again with her handsome prince again.

If you would like to donate to Michael’s transplant fund, please click here.

The Gift of Life

Ok, I guess it is time to get to what this blog is about and why I decided to start writing it. I keep avoiding getting to this part, dodging the horrible truth. My best friend and the love of my life is sick Really sick. He is waiting-for-a-double-lung-transplant-sick.

To explain, this means he is dependent on oxygen. 24 hours a day. He can’t go anywhere without it. Not even across the room. And sometimes the oxygen tank he has with him at all times doesn’t provide enough oxygen to help him catch his breath. He can walk five steps and take five minutes just to recover.

You may be thinking, why doesn’t he just get it taken care of? Well, that is a good question. The truth is that the wait for organ donations is incredibly long. Some people are on the waiting list for years. Often people, actually quite often, die just waiting for a donor.

Organ donation…wow, a hard subject to talk about. Especially if you actually think about it and what it actually entails.

Because, as we all know, for someone to get a donation, someone else has to die. A family loses a loved one, someone loses their best friend, and countless others are left to mourn the loss of someone who meant something to them or had an impact on their life somehow.

But once you get past that….and realize that when you leave this earth, you can actually live on in countless people through organ and tissue donations. You can give someone a second chance at life, you can give someone sight, you can make certain that someone’s heart continues to beat, through the gift of YOUR heart. What better way to honor life than through the act of saving another one….

I have watched Michael’s health decline for the past few years. Slowly at first and then rapidly. It is tough. And sad. He used to be strong and take care of me. Now I take care of him.

Sometimes I think that I struggle to breathe as much as he does. But my struggle is fueled by panic and fear….the fear of losing the man I love so dearly, the fear of losing my best friend.

So maybe this blog will make you rethink organ donation. I know it is a tough choice to make. But wouldn’t it be amazing to know that someone is seeing the world through your very eyes, breathing in deeply with your lungs and feeling forever grateful that you shared that miraculous gift of life so that they could live on.

If you would like to donate to Michael’s transplant fund, please click here.


Back to the Past

Three years after returning to South Dakota, my mother was again well and heading towards the 5 year milestone of being “cured” of cancer. She was becoming stronger, but had to give up driving and settle into a new lifestyle of dependence on family members. It was tough for her to adjust to not having the same freedoms she had enjoyed before her illness, but she was so grateful to be alive. One day she was sitting on her front porch and a truck slowed down and then stopped, a man jumped out and she saw a familiar smiling face coming towards her.

Michael had been a close friend of the family many years earlier. Michael and I, we had a history. Although he was three years older than me, we spent time hanging out one summer together with my older sister and her boyfriend. One hot afternoon found us at a local swimming hole. It was the perfect day. On the way home on the winding South Dakota highway, we hit gravel and Michael’s jeep rolled. Without doors or a seatbelt I flew through the air like a speeding cannonball hitting a tree headfirst. We both had serious injuries and were transferred by ambulance to the local hospital. We recovered and eventually Michael moved away.

He always held a special place in my heart and the scars on my head were a constant reminder of him throughout my life.

Now he was back and interested in seeing me. I looked forward to meeting him again after so many years, but didn’t expect the overwhelming attraction I felt for him the first time he walked in the door after nearly thirty years. This was the beginning of our wonderful romance and we are hoping that it lasts forever….

If you would like to donate to Michael’s transplant fund, please click here.

Change Comes Hard

Leukemia was the diagnosis and the prognosis was even worse. My mother was dying her doctors told us. It was then that I realized that it was time to go home. Returning to my homeland after 20 years abroad had it’s challenges, a single mom, two young kids, no income, my mother sick…WHAT was I thinking! My priority as a mother was to help my children settle into their new surroundings and give them the best chance to get to know their grandparents, aunts, uncles and cousins. It was a huge adjustment to move to a country where the culture was entirely different than the one they had been born and raised in. My four-year old daughter had the biggest adjustment. She could barely speak English and would be starting kindergarten in a matter of months. The first weeks in her new classroom were tough. Every morning I would drop her off at school only to have her cling hysterically to my leg, tears running down her face. We were both miserable. I finally made a pact with her. Her biggest wish was to have a kitten. One afternoon, I got down on one knee, took her in my arms and asked,  “If we get you a kitten will you try not to cry in the morning when I take you to school?” She sat quietly for a few minutes and then slowly nodded her head. “Yes.”

Impossibly fluffy Molly and her tiny sister, Isabelle, joined our family two days later. How can you just bring home just ONE kitten? Molly, a mitten foot calico, resembled a multi-colored feather duster. Her sister, Isabelle, also a calico, was all big frightened eyes and shyness. She spent the first entire week cowering behind the sofa. But the crying stopped.

It was weeks later when my daughter skipped out from her classroom, grabbed my hand and looked up at me with her big blue eyes and asked, “Would it be ok if my teacher were my mom and you were my big sister”. I smiled. Success! I felt relief knowing that everything was going to be alright. Our new life was headed in the right direction.

Living, Loving & Caregiving with Sanity Intact…Well, Kind of….

This is a blog about the ups and downs of trying to navigate successfully throrough the heartache and fear and intense emotions that accompany a major life-changing organ transplant.

I am going to start by sharing the major events that led to this journey and then eventually bring you up to the present and hopefully let you follow this path into my future. We have a long road ahead….I am glad I have you here with me. I feel stronger just knowing you are there.

If you would like to donate to Michael’s transplant fund, please click here.

How did I get Here?

Life was never supposed to bring me to this place. I had a pretty good start and a focused plan to become a successful photo-journalist after college. Then armed with a camera and a pretty good eye I headed out in the world. First stop, Norway. I followed the tall slim, handsome dark-haired Norwegian student that I had met in my home town across the ocean and back to the country he loved —  hopelessly starstruck and in love. The Nowegians have such appealing accents…enough so to lure a naive college girl from the safety of her bland midwestern existence to exotic and wild faraway places with the promise of sea and sand and beautiful scenery.  And what exactly did I know about Norway except that the men were attractive and fond of having fun and making partying a little bit too hard on the weekends? Absolutely nothing. Yet, I let my fear be overshadowed by my braveness, quite proud of myself for leaving my small, hick midwestern town to venture out in the world to a foreign country. Piece of cake I thought! Oh right, a different language, well a slight problem, but I can figure that out, right.

I remember that I thought shopping was tough…what the hell was in these cans in the grocery stuff with labels I could not read and no one who could tell me what suspicious food type was encased within. I bought several cans of varying sizes and semi-familiar pictures on the label hoping for beans…beans I could deal with. Little did I know that beans were not a normal staple in Norwegian households…so I ended up with several useful cans of food that I couldn’t identify.

It was a good start for this brave young South Dakota girl, as lost in the fjord country of Western Norway as the young wives who traveled to my South Dakota in the 1800’s and felt as lost and alone as I did in the cities they left behind. It was almost as if we had switched places and times. Each struggling to get past our own misery and hopeful to make a good life in our new country.