Who would have thought?


When I was young, I imagined a life of adventure….a world traveler, a firefighter (yes, I was a tomboy!), a journalist crossing the globe telling tales of war and humanity. I never once imagined that this fight would be a fight for life….the life of one that I hold so dear.

But this is a real live fight….it is life and death every single day. It is not knowing if my loved one will even make it to the next day. That is how sick he is. It is the fight to get him a lung transplant.

It seems like a dreary fight some days…asking, begging friends, family and strangers for assistance to help fund the surgery and the astronomical costs that come with it – not covered by insurance. It is convincing a transplant center that his life is indeed worth saving. It is assuring my sick and weary partner that there is a future for him and that I want to be a part of it. It is definitely the hardest thing I have ever had to do. Being a caregiver is often a thankless job and definitely not the glamorous life I had expected. But it is a worthy fight….saving a life…or at least doing everything in my power to save it.

The real fight will be in the operating room – for the surgeons and medical staff. The thought of them removing the lungs of my dear Michael and replacing them with new ones seems, well, strangely normal after so many years of working towards getting him a second chance. We were both elated when he was accepted at the Cleveland Clinic this week.. His quality of life has declined to the point where we are willing to trust these surgeons to open him up and give him new life.

The surgery is highly risky. Only 50% of lung transplant patients survive the first year. The biggest risk is rejection and infection. The lungs are the largest organ we have exposed directly to the outside world. They are not sheltered or protected like the other organs, hence the high risk.

Michael will have to avoid crowds, sickness, mold, dust and many other things. He will be on anti-rejection medication for the rest of his life. These medications that will save his life and help keep his body from rejecting this new organ can also eventually destroy some of his other organs. He will most likely need another transplant down the road. Many transplant patients end up getting a second transplant of kidneys or liver due to the damage done by the medications that make his new lungs work. But after years of decline and watching his ability to breath on his own being taken from him, we both agree that this second chance is the right one.

So, while I am often weary from the constant battles we have faced during this journey, there is one thing that keeps us going…..a second chance at life.

We have held on to hope and we won’t let go.



Starry, starry night

At night, when I go to bed,  I look for the stars outside my window. On a clear night I can always find them and they give me hope. It is impossible to feel hopeless in the company of stars…so far away, yet shining so brilliantly and hopefully despite what troubles or worries I am facing. When the stars are hidden by cloud cover I feel an unease, a loss, as if maybe they have left and won’t return. Tonight, though,  the sky is clear and the light shines down on me and I feel myself drifting off, feeling safe in their company.

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


The Hardest Part

WindowThe hardest part about asking for help is,well, asking for help. We are raised to take care of ourselves, solve our own problems and NOT ask for help. We spend most of our lives learning how to be strong, successful and independent. In the midwest, in South Dakota, where I was born and raised, if you were called “stoic” or “stubborn” you were being given a compliment.

And then a life threatening illness whacks you in the side of the head and knocks you off your feet. And for a long time you fight back. You fight hard. You are able to solve the problems, to make things work, to somehow keep your lives stitched together and functioning.

But on the inside you watch your life slowly crumbling apart and soon even the most everyday tasks seem too difficult…bills don’t get paid on time, things on your to-do list start stacking up and you realize that you can no longer handle everything on your own…that this problem is BIGGER and STRONGER than you.

So you ask for help with mixed emotions. It took months before Michael and I made the decision to put his fundraising in the hands of HelpHopeLive. We felt so fortunate that we had already had so much support – both financial and emotional from good friends, family and in some cases people who we didn’t even know when Michael relocated to Arizona in hopes of getting his transplant.

The next couple of years were almost like a tragic comedy of errors…the transplant center in Tucson CLOSED it’s lung transplant program, another handful of centers turned us away due to Michael’s heart problems, we weathered two heart surgeries and listened to some sceptics that didn’t think that the cost and benefits of a transplant were “worth it”. Ha, say that when you are tethered to an oxygen tank 24/7 and struggling to breathe!

And then we found Cleveland Clinic and we felt like the doors opened and we found a home where we would be safe….a transplant center whose goal was to save lives. Cleveland approached Michael’s situation with incredible logic. First take care of the heart problems (two heart stents), get him back on his feet and then work towards the transplant.

They told us we would need to raise a minimum of $35,000 for uncovered medical expenses. This is where HelpHopeLive comes in. These folks care about helping others that are backed up against a wall due to medical issues. They work hard to make sure that everyday people don’t lose their jobs, their homes and in many cases their hope just because they have been unfortunate to land in a difficult place.

Asking for help is still tough. We feel so blessed to have gotten the help we have from everyone who supports us in this journey. But Michael will get his second chance. And when he does, well, then our goal is to find a way to help others in our situation, so that maybe their road will be just a little bit easier.

And our hope is renewed knowing we have the HelpHopeLive organization and our friends and family on our side.

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


Times Like These

I let this blog take a back burner in my life. The difficulties, the loneliness and the fear of knowing that the man I love was so far away…left to deal with life and death on his own, well, it seemed to render me speechless. Now it is time to blow some life back in this little venture of thoughts and words. But unfortunately….the words aren’t that pretty.

The discouraging news that we received a couple of weeks ago snatched all of our hopes and our dreams away. All of our plans for the future, seemingly swept away….simple plans, really. We aren’t asking for much. Dancing, enjoying sunsets holding hands, traveling to faraway places and finally being able to smile and throw our heads back laughing with total abandon….those simple dreams were totally snatched from our hands and our hearts. The transplant team that we were counting on to save Michael’s life rejected him. Sorry, sir, but you are too challenging of a case for us”.

This process has taught us so much. It is hard to stay positive….We joke that we should  buy a yacht or throw a few parties. We should fill our conversations with lovely happy thoughts of travels and success. Michael and I REALLY do try to find the joy in the every day, the happiness in knowing that there is hope in our future, but sometimes when those doors slam in our faces time and time again it can suck the life out of you.

This brings me to those dear friends who have stood by our sides, listened to our stories and then come back time and again because they knew that this is what we need, to have someone who accepts us regardless of our situation…because these are our real friends. These are the friends who matter and the ones that I will vow to be there for when I regain my life and my strength. And when they need me, I will fight for them like they have fought for me. These are the friends who make me feel that there is a reason for this life, even when it is so difficult that I actually don’t know if I can survive another day or even know if I want to.

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


The Organ Donation Wait

This was an article in our local newspaper when Mike was going back to Tucson for his lung transplant. His son-in-law flew up to South Dakota and drove him to Arizona. Little did we know that due to cuts in funding, UMC had close their lung transplant program, apparently forgetting to tell their patients.

So there Mike was, stuck in Arizona! He found another transplant center in Phoenix and started the process of getting set up with a local pulmonologist, cardiologist and general physician as the center required. Four months later, they decided that due to his heart issues, they didn’t want to accept him into the program.

So I went to Arizona to bring him home. Back to square one….


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


The feeling of being mired in slow, tortuous quicksand seems to consume me a little bit more with each day. The reality of what our life could become gripping me like a cold evil wind. I can’t breathe. I can’t sleep. I am afraid.

Michael and I agreed, insisted really, that we had to make the best of these last weeks together….to make strong, good memories  to get us through the separation, the waiting, the medical evaluation and then the surgery. We both knew the importance of being strong and loving and there for each other during this time. We only have each other and soon we won’t have that.

Yet we circle each other silently like zombies each evening, moving silently from computer to TV staring silently, not really watching and then switching back again. We pass each other in our rotation, apologizing for accidentally being in the same path, or brushing against each other “Oh, Sorry!” “No, No, my fault, no problem.” We remain polite and strangely distant, like strangers just meeting awkwardly for the first time instead of like the best friends and passionate lovers we have been for the past 10 years.

It is almost as if we can’t bear the thought of getting too close or of letting down that looming wall of fear….it is a virtual Pandora’s Box of disconcerting thoughts of “worse case scenarios”. We can’t stand to confront those crushing, destructive thoughts and admit that the reality could indeed be the worst outcome ever…or with luck and God’s will, the best we could hope for.

It feels like a cruel game of the ultimate lottery….life or death…and we are reaching out frantically trying to grab a dream…hoping to win the big prize and that our reward will be the gift of life and a future together.

This lung transplant journey is complicated by the cruel complication of having to be apart. Life requires that I stay behind and make a living to pay the bills. But I should be there at this crucial time. I should be by his side. We have been there for each other through every hardship, through every victory, through every experience good and bad for the past 10 years. And now that we are talking life and death, I can’t even be there for him, hold his hand, reassure him. My heart is breaking and I don’t know how to fix it.

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


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.