Too much for one blog

Ben and Caitlin

I increased my dose of steroids today and had the epiphany that I need post some blogs. Yet, so much has happened in the last month that I can't fit it all into one post. Suffice it to say that someone up there must like us as we have seen much joy recently.
First, Caitlin is in love with a wonderful young man named Benjamin Solari.They met (for the second time) on the day he gave his homecoming talk from his mission. He served in Spain (habla español). They began dating at BYU and got engaged on Caitlin's 19th birthday. We are so excited. Ben is a wonderful guy and is perfect for Caitlin. I know what you are think. How is it possible that our baby is getting married? Yes, Barbie and I find it hard to fathom such an idea, but love does not happen on a schedule.
To make things better, Barbie is done with school so she and Caitlin can plan her dream wedding together without the stress of classwork and studying. They are having a blast. The wedding is planned for July 28, 2012, in the Sacramento Temple. This will occur in the middle of a very busy summer. Our traveling schedule begins this Saturday when we fly to Atlanta for the American Urological Association annual meeting and will end when we move Ben and Caitlin into the house we bought in Provo. (No, we are not moving, we just had an offer that we could not refuse.)
I had an interesting call last Friday from Dr Schrier. He is my oncologist at Stanford and he never calls. I had sent him a copy of my most recent Kappa light chains level which was the lowest that it had ever been; 39 mg/l. (I parenthetically added that the extra steroids I was taking to prevent post-herpetic neuralgia from my recent episode of shingles may have further kicked down the number.) He completely surprised me with the call as he proceeded straight to the point. "What is your treatment protocol?" he asked. "I am on weekly Velcade; four weeks on, one week off and dexamethasone." I said. "What dose of dexamethasone." then followed. I was caught. I had once been told that 20 mg was as good as 40 mg and opted for the lower dose to avoid side effects, but it had become clear recently that I am very dose sensitive to steroids regarding the lowering of my numbers. "I taking 24 mg." "You need to increase it to 40mg." He said without hesitation. "I am very concerned about you." he added. Wait, my numbers are good, I thought. Then I realized what had happened. "This is because of another patient that showed amyloidosis in their new heart." "Yes," he responded, "I'd like to get your numbers as low as possible; even start you on a 3rd line chemotherapy." I wasn't really ready for this. But I said that I would push up my steroid dose (beginning today) and that we could go from there.

Obviously, I will need to expand on some stuff I alluded to above. I promise I will promptly post again to do due justice to those events.

I had a thought last week driving home. Not a new thought, rather an idea that occasionally inserts itself as I consider my current station in life. I can't imagine a happier, more blessed man than I am. My life is so good in so many ways. When I try to discover why this might be, I cannot not escape the realization that the bulk of my daily dose of joy comes from my relationships with others; friends, family and God. I could not be happy alone.
So I thank you, all of you.
Kevin

P.S. The book is close to being done. I just need to figure out how to get it edited and published.

I was there first; I was their 1st

Heart transplantation and cardiac amyloidosis: Approach to screening and novel management strategies
The Journal of Heart and Lung Transplantation, Volume 31, Issue 3, March 2012, Pages 325-331
Brandon C. Varr, Michaela Liedtke, Sally Arai, Richard A. Lafayette, Stanley L. Schrier, Ronald M. Witteles

Abstract

Limited data exist regarding screening methods and outcomes for orthotopic heart transplantation (OHT) in cardiac amyloidosis. As a result, uncertainty exists over the best approach to OHT for cardiac amyloidosis and for the timing of critical post-transplant therapies. This article reviews 6 patients who underwent OHT for cardiac amyloidosis at the Stanford University Amyloid Center from 2008 to present. All patients with light-chainamyloidosis received chemotherapy in the interval between OHT and autologous hematopoietic stem cell transplant. Five patients remain alive up to 25 months after OHT, without evidence of recurrent cardiac amyloid deposition. A novel strategy of OHT, followed by light-chain suppressive chemotherapy before autologous hematopoietic stem cell transplant, is feasible for patients with light-chain amyloidosis.

This was very cool to read a scientific article where I was one of the subjects. I am celebrating 3 1/2 years today (42 month follow up); so I rode my bike to work.

The Velcade is working great.

Life is good, really good.

Kevin

I am still here

I have not written for some time, at least not on the blog. I find it presumptuous to admit that I am writing a book. First, everyone writes a book. I see them everywhere. So it always feels strange for me to say that. Somehow it seems even more narcissistic than writing a blog. To say that I am compiling my memoirs sounds even worse, as if I am some important political figure or Nobel laureate. Suffice it, then, to simply admit that I am writing the story of a doctor who becomes a patient, and what he, and his wife, learn from it. As I write, I think of the audience as my future grandchildren. In twenty years this may give them a glimpse into who was their grandfather.
This, and other things, have distracted me from writing here. The Velcade is working well on my amyloidosis, but numbs me psychologically and emotionally. This would frustrate me if I cared more. I no longer have a clinical practice in the urology department. I still work three days a week treating prostate cancer with radioactive seeds and breaking kidney stones as well.
We spent a wonderful Thanksgiving in Phoenix with Alexandria and Jeremy and will have the rest of the family here for Christmas.
Life has become somewhat routine. This, of course is wonderful. It allows one to predict and plan for future events. I still have some difficult days (I had a very difficult weekend in Houston last Friday but recovered in time for my flight home.) But I always seem to get better.

For that reason, I may not write consistently on this blog in the future. This effort of recording our journey has been therapeutic and essential in helping Barbie and me survive this experience. The support of so many who have read and commented here is nothing short of miraculous. So many lives have intersected ours through this medium of the minds. I have mourned with those that have lost their dear ones to this merciless disease. We all fight the good fight. It will eventually take us all, but not before we learn who we really are through the struggle. It is not a contest of who has the most days. It is simply about how we live today. Sometimes we submit to horrible treatments for the hope of more tomorrows and, in so doing, give up some good todays. This is always the most difficult decision for all patients, all doctors and all loved ones. When is it enough? I am trying to find that balance myself. How long should I stay on Velcade? Should I always take it with Dexamethasone? Can I take chemotherapy holidays? Is this treatment actually prolonging my life? How low do my light chains need to be to indicate that it is working? I would go with my gut, but sometimes that fails me too. (As it did in Houston last Friday.) I am left with having to rely on faith as I stumble into the dark. Certain paths just feel right, so I continue on them. I don't worry too much. God has guided me to where I am. I trust that He will so continue.

There are so many of you dear, dear readers who have shared your prayers, your thoughts and you losses with me. I will always be here for you. If I can ever provide advice or support, a medical reference or just a listening ear; I am here.

My e-mail address is kray0819@gmail.com
My cell phone number is (916) 412-8416

When I finish the book, I will find a way to make it available to those that might be interested in reading it. It essentially fills in the gaps between the blogs to complete the middle of the story, as the ending is still unknown.

With all my heart, I thank you.

Kevin

To Elle, I am so sorry for your loss. Please e-mail or call me.

The Gift of Life-Have a Heart

Newly Trained Donate Life Ambassadors

Last Saturday I drove to Modesto to be trained as a Donate Life Ambassador for the California Transplant Donor Network (CTDN). As such, I have the opportunity to provide community outreach to DMV's , High Schools and Medical Facilities to encourage people to choose to be a donor when they get a drivers license or register online at the CTDN Website . It was very interesting for me considering that the majority of the other trainees present were families that had chosen to support their deceased loved ones wishes by donating their organs and tissues to other people. For them, from five to ten people benefited from this gift made during such a traumatic moment. I her multiple stories of the pain that they suffered from the loss of a son, daughter or husband, (they were all women.) And yet, they all felt a great sense of goodness as they talked of those who live and live better as a result of these shared organs. The woman to my left, Michelle, has become friends with the family of the man that has her husband's liver. Not all have had contact with their recipients or donors. The need to respect privacy is important and everyone grieves differently. I am fortunate to have written letter correspondence with my donor family.
I was so grateful to hear the process from their perspective. We all learned some very interesting things; such as the true definition of brain death, or brain stem death. For an organ to be donated there must be brain stem death before the heart stops pumping. The patient is no longer alive, however, the heart only continues pumping because the mechanical ventilator continues to provide oxygen to the heart. Hearts pump independently of the brain if you give them food and oxygen. Mine does.
I went to a picnic that night and asked everyone I saw, are you a donor? The two high school students were but most of the older adults were not. I was surprised. Most reported some myth to justify their response. I realized that it is important to share my story and educate, dispel myths and save lives.
There were two other women at the meeting that were liver transplant recipients. There was much interest for others to hear what it was like to be a recipient. They marveled at our courage, interestingly, we didn't feel courageous, we felt that without the transplant, we would not live. It wasn't a tough choice, if it was a choice at all.

Sometimes I say I am lucky, sometimes I say I am blessed, I just feel so grateful and humbled to wonder at why I have been so blessed. I have seen too many amyloidosis patients die too soon. This saddens me. I want to support organ donation, and more specifically, that more heart transplant centers consider amyloidosis patients for heart transplants. I know there are many out there that can be saved if their local center would consider them as candidates. How long do I have to live to justify getting a heart, a second life? Just one more day sounds poetic; but surgeons aren't poets. The actual number has been calculated to be 3 years 2 weeks 4 days and 13 minutes, ( +/- 2.5 years).

Are you an organ donor? Why not?

Kevin