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.

Post 10

I think I have said before that I am very blessed. If I haven’t I have been remiss because I am so lucky to have people around me who truly care.

I sent out a draft of this blog to my two best friends, one here and one east and also my cousin who is like a sister to me. (There will be more, much more on my cousin and her family for they too are just finding out how many of them either have  hypertrophic cardiomyopathy or are carrying the gene).  It was interesting to me that as I entered their respective email addresses, each of them, these women closest to me, are all Kathy’s of some sort. A Kathleen, a Kathryn, a Katherine.  These are the women who will get me through.  Each of them responded (quickly I might add) to the blog.  All comments were very favorable and emotional.  I am truly blessed to have them in my life.

My husband too was very positive and complementary.  Good thing cause he’s probably going to get feedback himself.

This weekend was difficult but also good, a closure.  My family and I scattered my mom’s ashes in the Pacific Ocean.  It was her wish, and I am pleased to be able to honor it.

I pick up a loose piece of paper on my bedside stand because I need to write of the last few days.  I know what this paper is, it’s an order for a Jamba Juice for one of my son’s friends who was injured.  I also believe it’s a prophecy that I picked up THIS piece of paper today.  He wanted “Orange Dream plus protein”.   I too had placed my order — I wanted “summer in Upstate New York”, home to the Syracuse Orange, an integral part of my family’s life. My alma mater, my husband’s (at least for two graduate degrees as well). A place we lived on our beloved farm for 15 years and raised our son – a budding Orangeman.  And the place we spend every summer at our cottage on the lake. Yes I placed my order – I want to go home for this summer BEFORE. I want to get prepared for IT and AFTER.  I got my order, maybe that’s the ‘plus protein’!

*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.

Post 9

I guess you have to talk about the bad days too. Well today is one. I am stuck on the couch basically. My blood pressure is 76/51. I cannot stand up without being very lightheaded and having to go down on my knees. I am short of breath but not that bad. I have chest pain. I am drinking lots of water; which also makes me have to stand up, go down on my knees and head for the bathroom. The good news….. I have a great book to read. And its my husband’s day home and he can pick our son up from school. No driving today. Tomorrow will be better.

*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.

Post 8

So speaking of Mom’s….I would be remiss not to mention mine. She too is dying – only hers is the really active kind. In fact, I am sitting in her room, at an assisted living facility which has been her reluctant home for the past 4 years. She will likely die today. She is no longer conscious. She too has hypertrophic cardiomyopathy diagnosed at age 84 after a syncopal episode. She too has a defibrillator/pacemaker and we used to go for double date interrogations at OHSU and then lunch or a movie.

My mom had a difficult time accepting my brother’s death. She felt very responsible and guilty for passing along this gene, although she didn’t know conclusively then that she was a carrier. In fact, some kindly physician in the 1960’s told both my parents it was a combination of their genes that caused my brothers illness.

It was very difficult for me to tell my mother I too had the disease. She was very worried. My brother was in the hospital, listed for transplant at the time. I remember she was at our home back east. My physician thought she too should have another echocardiogram, the definitive test for diagnosis. They were pretty sure she had some form of the gene, it had just yet to express itself in her. I thought long and hard about how to say all this.  My mom was 82. I said that if they found IT, how good it would be for me to know that she was alive at 82 with the disease. It would give me hope of a long life. She looked at me as only she could with her wry smile and said, “well I never would have come up with something like that” and I replied that it took me quite a long time to come up with so we were just going to go with it. Her echo was normal. That was May of 2002. This is May of 2010.

As awful as this will sound. I need my mom to move on. The last year especially has been very very difficult on her and on me caring for her. I can’t imagine having to tell her that I too need a heart transplant and will not be able to spend time with her, bring her the ensure that has sustained her. I need her to complete her journey so that I may embark on mine.

She complied on the morning of May 22.

*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.

Post 5

While I walk, I am being passed by people both younger and older. I am thinking maybe they think I am just a really old pregnant woman and they feel sorry for me. For I do look pregnant, 4-5 months I think. But IT’S not a baby in my belly, its fluid, technically called ascites.

One of the first patients I cared for in nursing school (yes, I know way too much about all of this from many perspectives) was an older man, an end stage alcoholic with ascites. (Wow, now that I think about it he was probably in his 50’s, older huh?). But he was yellow, very yellow. At least I am ruddy. It will probably be these little tidbits, the little things like not being yellow that I will be most grateful for in the months to come. I am sick but not yellow. Who would of thought.

My therapist says that if I am able to see humor in all of this I am functioning at the highest level of coping. I always knew I liked her, I just didn’t know how much!

Elizabeth Kubler-Ross described 5 stages of death and dying. The first stage is denial. While I still won’t classify myself as dying, I read a statement by my physician on the front page of the Oregonian which described heart failure as  “slow suffocation”. (Maybe dying is a better term?)  Back to denial. I have been in denial for a very long time. I deny that my physician is talking to me, (to me?) about heart failure, transplantation. Kubler- Ross’s next stage is bargaining. While I am pretty good at denial, I am really good (I have been told) with bargaining. In Kubler –Ross’s world the bargaining is done with God. In my world on this day, the day my physician says, “well Susan”, I begin bargaining with him. What am I thinking? Here he is, the head of the Heart Failure/Heart Transplant program at OHSU who says he thinks the time has come to begin the listing process for me and I say, “can I bargain with you?”.

I am glad he didn’t laugh, just smile a bit. My conversation, my bargaining went something like this. OK, OK, I get IT. I feel IT. . .I know IT deep down, but could I just have the summer?  You see I have plans, big plans, annual plans. Plans that involve my son, my husband, my family, my friends and they are already made, already booked.

I can’t at this moment imagine not going to our summer home back east. It is where I will be able to get my arms around, my head around this whole thing. I really, really want and need to go. I need to sit on my dock and  take in the sustenance, the spirit my lake provides me.

So I say to this physician of mine, “you can have my body on August the 7th”. Once again, I was ever so grateful he didn’t laugh. He simply said, “lets get the tests scheduled and then we will talk”.  After a year, I think he’s getting to know me.

*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.

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.

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.

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.

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.

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.

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.