Heart and Soul – One woman’s journey through a heart transplant

Welcome to the weekly blog of a Donate Life Northwest volunteer who has graciously offered to tell  the story of her journey through the organ transplant process. She will post to this blog every Wednesday so you can ride this bumpy road with her.

Isn’t there a book titled, “First you Cry”? Well, I did. Not as long and hard as deserved but enough to rid myself of the initial shock. More came later, the into the pillow sobbing kind. And not much sleep that night – the night of the day my physician looked at me hard, but compassionately and said, “well Susan”……. He went on from there talking about my symptoms (worsening), my intolerance to increasing amounts of medications and my brother’s history and rapid decline. I was comforted somewhat when he said he wasn’t going to let that happen to me.

And after you cry you  pour yourself a glass of wine and call your girlfriends.  (I didn’t realize this was going to be a checklist for those being considered for the transplant list but it may be turning out that way, and that’s okay because I have looked for one and it doesn’t exist! And lord knows I could use it right now).  You call your girlfriends because the tears aren’t going to get you through this but your friends and family (and physicians and all the other healthcare professionals) are.  They have all promised me, and I will remind them of this every so often.

Next, you call your therapist.  And even after an hour session, IT’s still not real.  Even though I feel really lousy, I feel blessed that it is a beautiful spring day and so I take a slow, flat walk along  Portland’s south waterfront.  I thought more than once that this waterfront would be my view from my room on the hill AFTER.

AFTER is a big thing.  A good thing.  IT too will be fraught with peril, but it is something I am lucky to have to hold onto …..AFTER.

*disclaimer*
The author is a heart failure patient going through the transplant listing process. She also is a nurse and former hospital administrator. She would like to thank Donate Life Northwest for permitting her to post her observations on the Donate Life Northwest website. She also wants to emphasize that all opinions and views stated in the posts are her own and not those of Donate Life Northwest.

Heart and Soul – One woman’s journey through a heart transplant

Welcome to the weekly blog of a Donate Life Northwest volunteer who has graciously offered to tell  the story of her journey through the organ transplant process.  She will post to this blog every Wednesday so you can ride this bumpy road with her.

So that was a huge digression, to the third perspective I speak to the kids about, me.  It.

I think you know the gist of IT.  Because of my brother’s diagnosis of a genetic disease, my family and I had echocardiograms. All of ours were benign.  My husband and I decided to raise a family.  Our son was born in 1994.  I continued to work full time at the hospital.  I felt increasingly fatigued.  In 2000 I had a syncopal event, likely ventricular tacchycardia and technically should have died.  I didn’t.  My husband heard me scream for help, found me unresponsive and totally white in the bathroom, threw me on the floor and I responded.  Being the practical healthcare person I was, I went back to bed instead of going to the ER.  Two years later, just after my brother got admitted for transplant, his physician suggested I have another echo.  I did and I still remember lying on that table and seeing my enlarged septum.  I knew.  I felt nauseous.  When the cardiologist called me, actually he called me out of a meeting at our hospital and said, “I wish I wasn’t the one to have to tell you.”  He then asked me if I was having symptoms. I said, like passing out, like overwhelming fatigue, like the chest pain I have right now….  All in a whisper from outside the meeting I was conducting.  I called my brother and he said, true to form, “hey just because you now have this doesn’t mean your course will be like mine”.

That helped.  So did talking with his physician.   I carried on with my work 60 hours a week of hard core hospital drama for the next few months.  Then came the full scale cardiac workup.  They decided I should be evaluated for arrthymias because of the syncopal event.  That meant a trip to a tertiary care center.  I signed the consent for a defibrillator. As I walked into the Electrophysiology Lab, I remember thinking, I really really like being on the other side of this table.  You see our hospital was working with this tertiary center to bring a cardiac cath lab to our facility.  I was responsible for all the training logistics…  I woke up in ICU on the evening of July 3.

My husband and I spoke long and hard about what to tell our son.  I would be hospitalized out of town for a day or two.  He knew his uncle, his beloved uncle, was in the hospital waiting for a new heart.  He actually asked to talk with our minister about it, how someone had to die for his uncle to live.  He was 7 a very precocious 7.  My husband and I came up with a very strategic plan that has served us well to this date.  My brother thought we were nuts.  My brother didn’t have kids (a conscious decision because of his illness).  He didn’t understand that as a parent you can never lie to your child.  We decided that we would only tell our son basic info.  If he asked a question we would answer it honestly and in terms we thought he could understand.  It was very hard.

On the way to the hospital, on the morning of July 4 to retrieve me, my son asked his dad, “its Mom’s heart right?”.  Per our agreement he answered, “yes”.  Not much more had to be said or could be incorporated then.  It gets worse.  I can only imagine what it means to a child to see his parent vulnerable, ill, hooked up to all sort of scary equipment with wires and tubes everywhere.  I really did not want to be this kind of mom to my son.  We all wanted out of that room, out of that scene fast.  Typical hospital stuff, it took hours.

Fourth of July, fireworks on the beach, over the lake, my son in my lap, big bandage over new defibrillator in my chest, pain pills on board.  My son looks me straight in the eye and says, “Mommy, do you have Uncle Seth’s heart?”.  I will never forget it.  A pivotal moment for all.  I mustered my strength from deep down and said, “No honey, I have my own.”  To his retort, my knees went weak, “but you have the same thing right?” .  “Right” was the only thing I could answer and hold him closer.  Thank goodness for fireworks.

Less than 3 weeks later my brother died.  I was a mess.

*disclaimer*
The author is a heart failure patient going through the transplant listing process. She also is a nurse and former hospital administrator.  She would like to thank Donate Life Northwest for permitting her to post her observations on the Donate Life Northwest website.  She also wants to emphasize that all opinions and views stated in the posts are her own and not those of Donate Life Northwest.

Heart and Soul – One woman’s journey through a heart transplant

Welcome to the weekly blog of a Donate Life Northwest volunteer who has graciously offered to tell  the story of her journey through the organ transplant process. She will post to this blog every Wednesday so you can ride this bumpy road with her.

My History

As I said, this, IT, is not new to me. I have been ill for 8 years. In April of 2002 I was diagnosed with Hypertrophic Cardiomyopathy. Three months later, my brother and best friend died awaiting heart transplantation in a hospital in San Francisco. He too had Hypertrophic Cardiomyopathy. When I was diagnosed, I was working as a hospital administrator. I was the one responsible for managing the contract with the local Organ Procurement agencies. I wrote all of our hospital policies regarding brain death and organ procurement. I sat with stunned and mourning  families in an ICU waiting room while our physicians explained in grossly clinical terms that their loved one was essentially dead. I made the call to the procurement agencies and made sure things went as smoothly as they could during this incredibly difficult time for the families, for our physicians and staff as well as the procurement agency and its staff. Difficult times indeed, but remarkable in a sense as well. Remarkable that one family in its overwhelming grief can give life to another family. Surreal in that now I am in the other chair.

I am an active volunteer for Donate Life NW. I mostly talk with high school students. I tell my story and I tell it from these three perspectives:

I talk first about being in healthcare (a fabulous career I tell them) and of my experiences in that ICU waiting room. I tell them that what left a lasting impression on me was that in this incredibly difficult time, if a family knew their loved ones wishes about organ donation, it came as almost a relief. That something positive could come from a usually horrendous situation. That they did not have to make yet one more difficult decision, but in turn could honor their loved ones wishes to be an organ donor. Yes, that definitely stuck with me. And it’s also the easiest way to start my presentation.

The second perspective I say is more personal (oh if they really could know how much so!).

I show a tri-fold picture of my brother: One with my son on his lap when he was 5. One at the beach during our annual trip from NY to Oregon. One with his cat, the mutual adoration society photo opp. I talk about how lucky he was to actually have been diagnosed with a life threatening illness and how it was well managed for close to 40 years. How he was a successful ad man in San Francisco – what I call his “healthy and wealthy days”. How when he got ill, he got ill really fast. How I was to be his support post transplant. How I negotiated time off to care for him with my colleagues. How we had started to look forward to that time together -  planning meals (he loved good food), planning movies to watch (at home). How cheated I feel to not have had that time together. How when I went to SF to his memorial, and got to honor his wishes about having a party to celebrate him, to scatter part of his ashes in SF bay, that I was so struck by how consistent his friends and his caregivers were in their description of him and how he viewed his illness. They all said, “he was so positive, so optimistic. This was just a little blip in his screen, he would be right back. He never lost his sense of humor.”  And I am so glad he never really knew he was dying. He died very fast, of sepsis, in less than 18 hours. I couldn’t get from east to west to be there.

So when I was leaving SF after his memorial, sitting in the airport on the way to spend a few days with my 80 some old year mom, who could not (for all the right reasons) attend the memorial, I decided to write my brother a letter. The upshot was this – If you could live with this disease (remember I am three months into my diagnosis) I can too. If you maintained humor and optimism, I can too. I know he would want this if he could only tell me. I also told him that I was going to fight this disease, and I was going to win. The only way I could figure out to fight was to volunteer for Donate Life Northwest and raise awareness about organ donation. And so that is the path I have chosen to take these last 8 years. One of looking for the gifts. And yes, many times I have had to dig down deep to find them, but they are always there. And I have chosen laughter as the best medicine, but I do so miss my brother’s jokes.

When I shared the beginning of my blog and my soul with my chosen few friends of my inner circle, I realized that I have met my commitment to my brother (so far).

*disclaimer*
The author is a heart failure patient going through the transplant listing process. She also is a nurse and former hospital administrator. She would like to thank Donate Life Northwest for permitting her to post her observations on the Donate Life Northwest website. She also wants to emphasize that all opinions and views stated in the posts are her own and not those of Donate Life Northwest.

Welcome to the weekly blog of a Donate Life Northwest volunteer who has graciously offered to tell  the story of her journey through the organ transplant process. She will post to this blog every Wednesday so you can ride this bumpy road with her. You too will have the opportunity to share your own story with others in our “Share Your Story” Facebook tab next week.

May, 2010

And so IT begins. It’s not that IT’s unexpected, IT’s been in the back of my mind for the last eight years. But now IT’s becoming more textured, more tangible. IT’s a pretty big deal, for me, for my family, for my friends. IT’s the beginning of the organ transplant process. You see – I need a new heart. I need a new heart (sometimes you have to say it repeatedly for it to sink in, at least I do) I need a new heart because my original one, the one I was born with is failing.

And it’s so unfortunate that IT’s not new to me, this whole process. I went through it with my brother. He died. I can’t. I have a teenage son who needs me; a husband and close friends as well. And so my outcome has to and will be different.

Nationally there are 3,144 people waiting for a heart and in Oregon, there are 13 people waiting for a heart – so you can see the magnitude of my situation.

And so this is my story about the journey of receiving an organ transplant. It is a story of not only my old heart and hopefully my new one, but is it also the story of my soul, my being, my feelings and thoughts as I go through this incredible process.

*disclaimer*

The author is a heart failure patient going through the transplant listing process. She also is a nurse and former hospital administrator. She would like to thank Donate Life Northwest for permitting her to post her observations on the Donate Life Northwest website. She also wants to emphasize that all opinions and views stated in the posts are her own and not those of Donate Life Northwest.

Honestly, we won’t judge you either way. We are just glad that Steve Jobs , CEO of Apple Inc, is not only recovering well from his liver transplant last year, but also that he is publicly speaking about it.

Of course everyone’s story about the struggle and strength of undergoing an organ transplant is so important for the public to hear as it helps spread the word and personalize the need to register as an organ donor. But obviously it really helps the cause when someone so well known speaks out about organ donation as their reach is so far and their voice is heard loudly.

Jobs first underwent surgery for a rare form of cancer in 2004 and then  had his liver transplant in March 2009, traveling to a hospital in Memphis, Tennessee, because no compatible liver donors were available in his home state of California.

According to a recent Bloomberg Newsweek article about Jobs, the experience prompted the normally very private Jobs to talk publicly about his transplant. In March he reached out to California Governor Arnold Schwarzenegger to back new state legislation aimed at encouraging organ donations.

Jobs said at a March 19 event at the Lucile Packard Children’s Hospital at Stanford University in Palo Alto, California that he was lucky to get a liver in time as there were not enough livers to go around.

People on the Apple campus are seeing more and more of Jobs as he gets healthier. They are also noticing his creativity and energy are back which is probably pretty obvious with the release of the Apple iPad!

So whether you are a Mac or PC, please continue to use your voice (and your computer!)  like Jobs and the many other heroes who speak on behalf of organ donation to help promote the gift of life every day.

As we enter the final week of National Donate Life Month, we would like to thank all of the donor families and transplant recipients who have shared their story with the community. Their strength, honesty and openness helps start the miracle and spreads the gift of life to others.

Below are two submissions for the Threads of Life quilt that Donate Life Northwest displayed throughout the region. One is from the giving mother of an organ donor and the second is from a grateful recipient. Please read their stories from their own words:

Submitted by:            Dotty Pantle, mother
In Memory of:            Paul Pantle
September 18, 1971 – May 22, 2007
Organ and Eye Donor

The Donor Program has given us more than I ever could have thought. Paul saved four lives through organ donation and gave two people sight. I have communicated with three of his recipients and can only imagine that being given a second chance at life is a gift beyond expression. I wish only the best for those Paul’s life has touched – so many in so many ways…

When Paul entered a room, you did not need to see him to know he was there. His laughter preceded him, and he always wanted everyone to be having a good time. He had a deep passion for life. Paul’s desire to be a good father was at the center of his life. His soul mate and wife Dawn completed him and he loved his children also. Family reunions, karaoke, Halloween, ATV’s and just having fun were some of the things that gave him so much pleasure.

If Paul called you friend, he would be there for you and do what he could to help.

The flame is gone but we cherish the light and joy of Paul’s memory and see him in all five of his children. Often I still find myself thinking of something I want to tell him only to realize I can’t. We will never forget.

Donor or recipient, reach out and tell your story. It helps with the healing. Others are blessed by each one. This way the gift is paid forward endlessly.

Designed and Submitted by: Signe Wallis, Kidney Recipient
In Memory of:  Her Anonymous Donor

I am a 67 year old great-grandma from Portland, Oregon. To my great surprise, I received my kidney September 4, 2009. Because I have many antibodies in my blood, I wasn’t hopeful.  The kidney is a “perfect” match, and I feel like I’m 40 years old.

I made my quilt square to honor my anonymous donor. I chose the Ohio Star pattern because my kidney came from Cincinnati, Ohio. The material reminds me of fireworks and celebration, and, boy, do I have a lot to celebrate! Last, and most important, the heart in the middle represents my generous donor and family. I am so grateful to this person, and wanted to honor them in some way. I appreciate this opportunity to do so.

Once again, we thank and honor these special people who gave so much of themselves to save another life. What they did was amazing and beyond generous and kind. They started a miracle.

To continue honoring Donate Life Month, we want to share more information about  the public’s attitudes toward donation and related actions.

Donate Life America, in partnership with Astellas Pharma US, Inc., commissioned an online survey of 5,100 adults in the United States. Fielded by Survey Sampling International in January 2010, and compared to the February 2009 survey, findings revealed both positive signs as well as barriers among the public.

Signs of Hope

• A majority of U.S. adults now wish to be organ or tissue donors –56 percent versus 50 percent in 2009.
• Among adults who have registered to be organ or tissue donors, 19 percent were previously reluctant or hesitant to do so.
• Three-fourths (75 percent) of those surveyed want their donation wishes fulfilled regardless of family desires, up from 2009.
• The percentage of adults who believe the organ and tissue allocation system is fair has increased in the past year – 37 percent versus 32 percent in 2009.

Challenges Ahead

• 52 percent of people incorrectly believe that doctors may not try as hard to save their lives if they know they wish to be organ or tissue donors.
• 19 percent of people are not sure they would be acceptable donors.
• Approximately half of adults (48 percent) believe a black market exists in the U.S. for organs and tissue, up from 44 percent in 2009.
• While only 16 percent believe a regular funeral is not possible following donation, this percentage is up from 13 percent in 2009 and 1 percent in 2004.
• 61 percent mistakenly believe it may be possible for a brain dead person to recover from his or her injuries.
• Despite the strong desire for first person consent, many barriers, including lack of urgency, exist regarding registration. 27 percent “just haven’t done it” or “gotten to it.”
• Among adults who wish to donate all or some of their organs or tissue but have not registered to do so, just over half (53 percent) say they do not know how to register, while another 25 percent are neutral.

With this knowledge we see that we have come very far, but  we still have a long way to go. We are more determined than ever to continue to educate and enroll the Pacific Northwest into our state donor registries and  bring new life and new hope to patient’s in need.

April is National Donate Life Month and what better way to celebrate than to reflect on how far we’ve come and where we need to go.

According to a new survey by Donate Life America, 43 percent of people are undecided, reluctant or do not wish to have their organs and tissue donated after their deaths.  This number still sounds high to me, but it is an improvement over findings from last year where 50 percent reported the same.   This statistic shows the critical need to continue to increase the level of support for organ donation to save the lives of the more than 105,000 adults and children on the transplant waiting list in the U.S., an average 18 of whom die each day waiting.

Locally we have increased our registered donors by 2% over last year which is great news! However, the need has also increased at a rapid rate as well.

Locally have 645 people on the organ waiting list

• 500 people are waiting for a kidney transplant
• 124 people are waiting for a liver transplant
• 1 person is waiting for a pancreas transplant
• 8 people are waiting for a combined kidney/pancreas transplant
• 12 people are waiting for a heart transplant

After reading the most recent National Donor Designation Report Card, I am reminded that tremendous strides have been made in transplantation. Did you know that in the early days only siblings (specifically twins) could donate? Today, deceased and living donation among strangers is the norm. Our age criterion has been extended with donors as old as 92 on record! And donation after cardiac death (as opposed to brain death) is sometimes possible which expands the number of organs that can be donated.

The National Donor Designation Report Card states, “Still, with the miraculous success of transplantation, the need for donors continues to increase. In order to meet this need, it is essential that millions of people step forward to register as donors, and that the thousands of people who are asked to make the decision for their loved ones say ‘yes’ to donation.”

So with that, let’s continue to celebrate the great advancements we’ve made and push ourselves to go the next mile until we can meet the local needs of our 645 people and hit that national goal of registering 100 million designated donors!

I am not one to normally watch Extreme Makeover Home Edition. Not because I don’t like the show, but because I cry so hard I can’t bring myself to watch it. So even though I wanted to see last Sunday’s episode featuring the Skaggs family whose young baby boy, Jhett, was saved because of a heart transplant, I kept avoiding it.

Ooops I missed it as I had family in town on Sunday night – well I can catch it online tomorrow. Oh darn, this episode wasn’t available yet on Monday morning. I can catch it Tuesday – nope, too tired to watch a show that night. Wednesday – oh I have a meeting….Thursday?? What? No specific conflict? Nothing to make up? So I halfheartedly typed www.abc.com to see if it was available. Yep, it’s out there and yep it’s streaming to my computer and yep, 2 minutes later I was crying like a baby.

Within moments of the opening, we hear that baby Jhett had been in cardiac arrest 6 times before receiving his life-saving heart. His family lost him six times!

He was basically waiting on his death bed until that miracle heart came to him. As Jhett’s mom puts it, “because someone gave their heart, he is still here today.” I don’t care how many times we hear that phrase at Donate Life, it never gets old. It still sends chills down your spine and makes you wonder in amazement at the hardships people have to endure and at the same time appreciate the generosity of perfect strangers.

We want to thank ABC for promoting the important message of registering to be a donor. Seeing the Donate Life registration and posters on the show makes us appreciate that the producers didn’t just create a show to make their viewers get sucked in and cry; they wanted the public to take action. Ty Pennington actually encouraged everyone to register on the Donate Life donor list.

One of the other organ recipients on the show said, “This is a celebration of my 10 years with a donated kidney and pancreas, but another family is feeling the sorrow all over again as they remember the loss of their 13 year old son. By making this thoughtful and caring decision to donate his organs, I have my life”.

So yes, I may have cried my eyes out once again, but I only had to avoid the pain of watching and feeling for these amazing people, I didn’t have to experience the true pain and joy of this gift of life.

Thank you to all of you who share so deeply with all of us so we can continue to promote and support this beautiful gift.

If you have some spare tissues, check it out for yourself at http://abc.go.com/watch/extreme-makeover-home-edition/92244/254210/the-skaggs-family

The Olympics may be over, but many of us are still buzzing about our favorite snowboarder, Chris Klug, three time Olympian and first transplant recipient to participate in the Olympics. Chris may have come in 7^th in this year’s Mens Parallel Giant Slalom, but he is number 1 in spreading the news about the positive impact of organ donation.

While in B.C., Chris took some time from his training to visit  B.C. Transplant, a local organ donor organization, and made sure to promote organ donation as part of his role in the spotlight.

When he was on the waiting list for a new liver, Klug made a commitment that if he received a second chance, he would use it to promote organ donation. He devotes a lot of time to educating people about organ donation, and he set up a charitable foundation, the Chris Klug Foundation (CKF), in 2004 as well as his “Donor Dudes” program  which educates high school and college aged kids about the importance of organ and tissue donation, and increases the number of people who are taking action

“I’m here today because of it, and the impact one donor can have is so significant,” he said. “The way I look at it is why not help someone else if I’m not here anymore?”

Klug also said,

“I think it’s a really great opportunity for me to really trumpet that cause. (Being here) certainly highlights the heroes organ donors are and hopefully encourages people to consider it, know the facts and share that decision with their family.”

Here’s to all of our heroes – the organ donors – who gave of themselves to bring life to someone else!

Now let’s continue to spread the word!