New Horizons

Dear Friends,

[Caveat: It has taken a week for me to write this. Meaning? I am still very slow. While I truly appreciate hearing from you, please don’t hold it against me if you do not get a rapid (or expansive) response.]

It has been a momentous time over the last six weeks.


From the despair of not knowing how I was going to get home from my visit to Stanford to undergoing a double lung transplant to working my way through recovery.


On June 20th I underwent a nine and a half hour surgery and received a new set of lungs to replace those destroyed by pulmonary hypertension.

June ain't springin either - health update

Dear friends,

Please forgive me for the delay in getting an update. As the end of term closed in on us I faced a number of challenges. My health was failing, with me getting weaker and my breathing difficulties and pain increasing. My one goal was to finish the term and everything took a back seat to that. 

Part of the problems were driven by an attempt to switch me from one prescription to another. Namely from neurontin (which I had first started taking for the trigemninal neuralgia, and then was also useful for the neuropoathy that is being caused by the remodulin)  to lyrica. The lyrica did not agree with me and gave me a number of negative side effects (headaches, nausea, and unfortunately a resurgence of the trigeminal neuralgia). So after a month of worsening symptoms I am now titrated back to the neurontin.

Its the Little Things

It’s the little things. You know, the things that should be no big deal. Those are the ones that  punch you in the gut when you are already down. I recently I had one of those experiences.


Part of what I need (and am being required) to do is to fund raise in order to ensure the transplant center I can meet the economic demands of transplant. I spent more than a week writing an appeal letter to send out to my friends and social networks. After a lot of research, I decided to have the NTAF  help me with fundraising, but that is another story. 


So it has been a back and forth thing. It started out 4 pages long and ended up at one page. I sent it several times to the Patient Services Manager at NTAF with whom I am working. The IRS is very picky about how things are phrased so that NTAF and I stay within the guidelines.

Choosing a Transplant Fundraising Organization

Some of you may face a point in your life, or in the life of a friend or loved one, where you need a transplant. At this point there are only two non-profit organizations who are helping folks who are getting transplants. They are the National Foundation for Transplants (NFT) and The National Transplant and Catastrophic Injury Assistance Fund (NTAF).

I am now listed for a double-lung transplant, and may end up needing a heart-lung transplant, so I spent considerable time and energy looking at these two organizations. Out of that came a document comparing the differences between these two agencies. Both provide the same core services, and both are credible, and references were overall please to thrilled with them. The choice for me therefore lay in their differences. I created a document comparing these differences that is at the following link in a pdf file. I hope that you find it useful.

Differences Between the NFT and NTAF

Like Sand Through an Hour Glass

Like sands through an hour glass, so are the days of our lives”

 The sitcom title captured the concept that our lives are contained and that there is only so much time in our lives. It is a statement that reminds of our mortality.

Rowan and Rowan's Heart

I am a sociologist by training and passion, and have my doctorate in sociology. I love teaching and feel that I am called to do that. I have followed that calling by teaching sociology for Portland Community College. My primary interests are social justice, environment, and corporatization, and a lot of my writing focuses where these issues overlap. So Rowan’s Heart is going to be a departure from my usual genre.

I was born in Kansas City, and now call Oregon my home. I love dogs and we have three. I live happily with my partner of 14 years Kelly. We consider ourselves a pack.

In January 2010 my life changed forever. I was struck down by what was thought were pulmonary emboli. This took me out of teaching for the rest of the year. My heart and lungs continued to fail, with each day leaving me weaker than the last until July. Then a new pulmonologist, Maxine Dexter, went over my case with a fine-toothed comb and determined that I actually had pulmonary arterial hypertension (PAH or PH). This is a rare condition that increases the pressures in the lungs making them unable to function properly. This puts tremendous strain on the heart, and has seriously damaged mine. PH is a progressive and irreversible disease.  My doctor started the long process of getting me evaluated for a heart-lung transplant, as this is the only cure for PH. Stanford Hospital has almost approved me and hopefully I will soon be on the transplant list.

I have been tremendously lucky to have insurance and a job that has allowed me to continue to work part time. I have also been blessed to have my partner Kelly and a very supportive family. I know all too well that without these blessings, it is highly likely that I would be dead. I also know that even with these blessings I will still need to do significant fundraising to be able to sustain myself during and after transplant. In fact, that fundraising is a critical to me overcoming one of the barriers between where I am and getting listed.

Because of the soul shaking challenges and seemingly endless barriers I have faced, I am creating Rowan’s Heart.

Rowan’s Heart shares a journey that covers terrain that challenges me on every level. In the process I am learning things about myself, about the health care system, what catastrophic illness means, and the soul deep value of friends, family, and community.  It is my hope that sharing my story will help others who are on this journey and those who help us along the way. I also hope to be able to provide some information and resources for others facing similar challenges.

I welcome others with PH  - or who are share this journey in some way  - to find a home here. I hope that I can share information and resources that may be useful, but more importantly sharing those struggles which I face and I know that millions of others face. This is about life, facing radical life changes, and facing the real possibility of death. I welcome others to share your experiences, insights and resources.

Welcome to Rowan's Heart!