Live Long and Prosper Grandpa Leonard

I have been following Leonard Nimoy on Twitter for quite some time since hearing that he was battling COPD, the same disease that my partner, Michael, is fighting. Although I was never a “Trekkie” I wanted to follow how he was dealing with this illness and hopefully gain some wisdom from his words. His posts on Twitter were always interesting…kind and gentle and they gave me comfort. A little over a year ago he invited his followers to become his honorary grandchildren. Leonard only requested that you send a message saying “YES” and you would be accepted into his honorary family. I sent a message immediately explaining that I had lost my own dear grandfather to COPD and that my partner had the same illness. I felt an uncanny comfort in knowing that I now had a new grandfather out in the world, even one that I had never met. I didn’t really understand the feelings I was experiencing, but I felt safer, protected somehow.

My own grandfather, Grandpa Jack, had died when I was in my early twenties leaving a gaping hole in my heart and my life. Losing my father as a young girl, my grandpa quickly became my hero, my role model. He became the man that I judged all other men by. His kindness, his generosity and wisdom became an almost impossible standard for any man to live up to.

And then fortune brought Michael back into my life, followed many years later by my new honorary grandfather. I couldn’t have been more delighted to have found there were actually two men that could compare to my grandfather. What was sad and ironic was that both were inflicted with the same terrible disease. What are the odds?

I delighted in “Grandpa Leonard’s” posts to his new family. The delight was no doubt shared by the hundreds, if not thousands of new grandchildren he had invited so graciously into his life.

Now he has left this world, as did my Grandfather Jack – both taken by this terrible, cruel disease. Only one of these three extraordinary men is left in my life and waiting, hopefully, for his second chance. We are praying that Michael beats the odds and has the opportunity to change lives and to mentor others as both of my grandfathers did before him.

I will miss Grandpa Leonard’s words of wisdom and his wit. It is a very special man that invites the entire world into his family. Live long and prosper, Grandfather. Your family will miss you terribly.


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.


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.

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.