Saturday, August 30, 2008


I have had many patients that have not taken a prescribed medication because they read the 'package insert' and saw potential side effects and completely missed the therapeutic benefit of the drug. In most cases, the list of side effects rarely occur and they missed out on feeling better out of an unfounded fear.
However, when you are taking 14 medications of a very potent nature, you are bound to have side-effects. They are really effecting me now. I must continue to take my medication with the hope that as some are tapered-off, I will feel better.
I now have no appetite and everything tastes funny. Dr Weisshaar warned me about the cyclosporine shakes, which have now begun. I began to have parasthesias today, (tingling in the fingers and feet) and feel general malaise and sick to my stomach. The edema and high blood pressure are also expected. I physically feel 'washed out' and have little energy.
I am, however, recovering very well from my surgery. That was the easy part. I still have no pain.
I began the prednisone taper tomorrow, not a day too soon. Hopefully, in two weeks, when I am down from 80 mg a day to 20 mg a day, I will feel better.
All of this is a small price to pay for the great future health that I know I will feel. There will, of course, still be bumps on that road.


Friday, August 29, 2008

Another Goodbye

Today I am leaving for Utah to attend Sam & Michelle's reception there.  Kevin's mother is driving down to stay with him while I'm away.  I leave at 1pm and will return Sunday morning.  It will be another fast Utah trip.  I'm excited to see Jeremy & Alexandria's new apartment as well as Sam & Michelle's.  Saying goodbye to Kevin this time is not as hard as the last, though I do wish he were coming with me.  He misses our children so much.  I can tell this has not been easy for him to miss the wedding in San Diego and now the reception in Utah.

The Prednisone and Cyclosporine are taking a toll on his body.  He can't sleep well so he is always tired.  His body wants to sleep but his brain won't let him.  He never feels like he slept well.  He takes one or two naps during the day to try and catch up.  The night time is the worst. Next Tuesday he starts to taper down on the Prednisone.  Each week it will drop and then daily until they deem him clear to stop altogether.  He's getting use to the mask and we keep bottles of Purell everywhere.  

I have come to have great respect for caretakers; the ones who devote their time and energy to their loved ones.  Especially those who care for individuals with chronic illnesses or disabilities that require years of attention.   They are the real heroes.   

Know that Kevin is well, exhausted, but well.  


Wednesday, August 27, 2008

A hug, A shared Heart

Four years have passed since I left Connecticut to move back to California. It was, as I have mentioned previously, a difficult transition for me. It took a while for me to find where I fit in, both at work and at church. For the first time in my life I struggled with my own identity, my role or lack thereof. A year later, we returned for a family vacation to Connecticut to visit friends. While at church, I was wandering the hallways and ran into my dearest friend, Markell Fluckiger. Markell was the leader of our church in that part of Connecticut, and I had had the privilege of serving as his assistant (or counselor, as we were called) for four years. President Fluckiger was the most kind, wise and spiritual man that I have ever known.
When he saw me, he immediately embraced me with a hug. This is the kind of hug that completely engulfs you. No words were said for a moment, but in that silent reunion, I felt whole again. I knew that not only was I loved, I was remembered. I was myself again. I cherished that moment for a long time.
Three years have passed since then. My health had been deteriorating for some time, and since I did not know the cause, I kept it to myself, not realizing that Barbie was suffering under this burden of silence. Finally, in late June, the news came. I had restrictive cardiomyopathy, likely caused by Amyloidosis. I soon discovered that this was fatal. That Sunday we agreed to let family and a few friends know of my condition. Clearly, Barbie needed the support of others at this time. I also remember adding, “Oh, I could really use a hug right now from Markell”. She made a few calls and sent some emails. She told me that she had also emailed Markell Fluckiger and shared my wish with him.
Later that evening, I got a call. It was Markell. He had since relocated to Colorado, but informed me that he had an important business meeting in the Bay Area on Wednesday and would it be alright to travel the two and a half hour drive to see us in Lincoln. When he arrived, he gave me a book on handling adversity, shared some choice words of comfort with Barbie and then he gave me a hug. Markell is a big guy and you don’t escape from one of his hugs, nor would you want to. Again, I had this overwhelming feeling of his love and concern for me, and in that moment knew that everything would be alright. I have sensed no fear since then.

August 15 was the day that two worlds were uniquely united, and at the coeur of it all, a heart. This heart had already lived a lifetime in my donor. Each beat becoming the sum of his existence. Altogether they wove a tapestry of color and life that reflected all of his joys and sadness, his longings and toil. The heart was his witness and his strength, unfaultable in marking each moment, constant. But then, the unthinkable occurred, and as his life silently slipped away, his heart kept going, awaiting a new life. In that moment, my donor made the ultimate final gift, his heart to me.

My own heart has served me so well. I have experienced more joy and fulfillment in one lifetime than most men would have in three. But my heart was worn out, ravaged by disease and struggling daily to keep me going, and soon, it had marked its last beat.

While I lay there on the operating table, for at least an hour, I had no heart inside my chest. My survival was maintained only through machines and technology under the skilled hands of committed doctors and nurses. And then, his heart was placed and inside me, and my life began again. I had a new heart, but it is not completely mine, nor will it ever be. For it is a shared heart. This shared heart has already lived a lifetime and must be remembered as such.

This must be why I have the strong desire to hug everyone. A hug, in such a simple act, can bring two hearts together, marking a brief moment of friendship. I feel like I should share my shared heart with others. I will honor the memory of my donor by offering his gift to others with a hug.
In doing this, I am really following the example of my cardiologist, Dr Weisshaar. She hugs everyone, all of the time, and now I know why. Her life’s work has consisted of bringing hearts and souls together, and what better way to symbolize that than an offering of a hug to all of her patients.

Two things that heartbeats and hugs have in common are that they are both strong symbols of the importance of being in the present. Past regrets and future concerns have no place in the moment of presence. What I have learned from all of this is to cherish the present.

My dream is that someday, if allowed, I may meet the family of my donor and through the simple act of a hug, reunite them with him, one more time in the present.

In memory of my donor and his family.
Please say a prayer for them.


Monday, August 25, 2008

couldn't resist

3 Month Anniversary of Jeremy & Alexandria
San Diego Temple -  August 16th


The masked man with Don & Maria Boatman
          (my boss and good friends)

Corey (Rebecca's fiance), Rebecca & Caitlin with 
               Kevin and the yummy cake

        Leslie, Char, Kevin and baby Finn

Rejection and Balance

The three month supply of my new medications

It's great to be back. I am out of the hospital now and doing wonderfully. I wanted to explain a little about the next phase of my recovery.

I have always been averse to rejection, wanting to be accepted by all. My new heart feels the same way. While we were in Rochester, we met with the transplant surgeon, Dr Daly. He did not mince words. He said that a heart transplant will change the rest of your life. It is not if you reject the organ, it is when. He stressed that I would need to take anti-rejection drugs forever. We accepted his guidance as a matter of course.

Rejection occurs because the body views the new organ as a foreign protein. our immune system is designed to fight against foreign invaders that might make us ill or even kill us. These include things such as bacteria, viruses, fungal infections as well as debris like a wood sliver. In each case the immune system recognizes the invasion and destroys it. Foreign protein from a transplanted organ (or allograft) causes the same response.

Two main systems of immune response exist in our bodies: cellular and humoral.
Cellular, as the name implies, is mediated through white blood cells, specifically lymphocytes called T-Cells and B-Cells. This is the type of pathway that most commonly causes transplant rejection, and as such, the therapy is directed to slow down or suppress the cellular response.

Humoral immune responses is directed by specialized proteins called antibodies (or immunoglobulins) These antibodies can quickly recognize and make an antibody that will tag and attract killer cells to eat up the bad guy. This new antibody is then stored in memory for up to a lifetime to prevent reinfection. This is why we only get chicken pox once.
Ironically, for me, amyloidosis is the ultimate manifestation of my warped sense of humoral. (That works on so may levels).

Currently, I have been started on many medication that fall into three broad groups: Anti-rejection drugs, Anti-microbial drugs and body balancing drugs.
The anti-rejection drugs are cyclosporine, cellcept and prednisone. These effectively suppress my immune system but there are costs. I am more suseptable to infections and the side-effects of the drugs mess up my physiology. Thus the need for the other two groups. The antimicrobials are Bactrim (antibiotic), Valcyte(antiviral) and Mycelex (antifungal). In addition, these drugs can causes imbalances such as high blood pressure, kidney problems, fluid imbalance, acid production, cholesterol elevations and mineral imbalances. All of the other drugs attempt to correct this.

This is why today, my first stop after discharge, was to return to the transplant clinic at Kaiser in Santa Clara, to review all of my new medications. In addition, I must remain near the clinic for at least a month so that immediate intervention will be available at the first signs of rejection. This begins tomorrow with my first heart biopsy. They will continue weekly. In addition, I will receive biweekly IV infusions of Dacluzimab, another potent anti rejection drug for at least two months. They will monitor blood levels and chemistries frequently, as well as my general health.

It may seem like a lot, but I accept is gladly, if it insures a healthy heart that will last me a lifetime.

I am so fortunate to have so many good people taking care of me. It's great to be here.

Again, I am so appreciative for all of your words of encouragement and support for Barbie and I on our unique and strange path.

With so much Love

Sunday, August 24, 2008

One More Day then NO more hospital stays!

Today is Sunday.  Kevin and I are going to sing hymns in his room today; a great way to give thanks.  He will be discharged tomorrow (YEAH!) and we will check into a hotel in Santa Clara and be there for one month.  Each day he will visit Santa Clara Kaiser for tests watching for rejection.  We've been told that it is not if he rejects the new heart, but when.  So when rejection happens, they readjust his meds to prevent complete rejection.  
His next blog will explain the new life we will need to live.  He'll take anti-rejection meds for the rest of his life, no raw fish, needs to be cautious in public, as well as changes in diet.  The anti-rejection meds suppress his immune system so he is more susceptible to infection and needs to wear a hepa mask in public for 6 weeks and then follows with a smaller mask.  Kevin will give a better summary of what all this entails.  I'll post more pictures on Monday.

Everyone have a beautiful Sunday

Saturday, August 23, 2008

What I've learned

Kevin is doing remarkable.  He spoke on the phone to alot of people yesterday and just hearing his voice puts everyone at ease since he sounds so good.  The only thing he is waiting for now is getting the chest tube out so that he can shower; sponge baths only do so much.  I believe they may be taking it out today.   
We had a visit from Don & Maria Boatman two days ago.  One of Kevin's favorite Thai dishes is Laab.  Don experimented a few times and came up with a great recipe.  We all ate it with enthusiasm.  Yesterday, Rebecca, Corey and Caitlin visited.  Rebecca made Kevin a birthday cake from scratch (no box here) and frosted it with "kevin's famous frosting".  The cake was beautiful and delicious.  Catilin brought her guitar and sang Kevin a song she wrote for him for his birthday.  We were all moved to tears; even Caitlin struggled to finish the song.   

What I've Learned
Being married to Kevin is easy.  He is a 'take care of things' kind of guy.  We, as in most marriages had our roles.  There were responsibilities he took care of and others I took care of. Often times I would appear lazy and just expected Kevin (and knew he would) take care of things that I didn't want to. In my head I felt he was much better at it anyway.  For the past two months I have had to take on many of his responsibilities; some I don't like and some I am uncomfortable doing.  This experience has made me more observant & given me the realization that I can do more than I thought I could.  I'm more observant to my surroundings, discussions, maps, computers,  learning about things I never thought I could learn or needed to learn.  It has changed the way I think.  Everything now has importance to me.  I have this feeling that everything I hear, I may need to know someday.  So my challenge is to categorize it and store it somewhere in my brain for later use.  Recalling it will be a challenge, but one worth trying.  Life and knowledge have changed for me.  They seem greater and like I said, have more importance.

Thursday, August 21, 2008

No Discharge Today

The doctors here are in no hurry to let Kevin go.  It looks like we will be here until Monday.  I'm hoping that they will let me take him outside for a little sunshine.  

Wednesday, August 20, 2008

Michelle & Sam's Wedding

The Tin Man

Kevin-day 3 of surgery


I haven't felt like writing for a while, but I have had a change of heart. But seriously, it has been an eventful week. I got the news Friday afternoon that a heart was available for me. I got to enjoy 60 seconds of sunshine while they wheeled me to the ambulance for the 20 min ride to Stanford. I had not been outside in 2 weeks. It felt great. I guess you could say that my mood was almost giddy with excitement. I didn't even really think about the surgery or recovery. I was just thrilled to know that it was happening.
I waited in a pre-op room and eventually at 10:00 PM was taken to the OR where I met the anesthesiologist, Dr. Oaks. She was very pleasant and gave me some Versed (like quick acting valium, but causes amnesia) Soon the mask was on my face and my next memory was in the ICU. I overheard voices talking about my low bicarb (a lab reflecting acid/base balance and breathing). I opened my eyes and saw my brother Daren and his wife Rachelle smiling back at me. I gave them a thumbs up.
For years at Yale, I gave the 3rd year medical students the lecture on ventilator management and here I was on the ventilator hearing all of those terms. Assist Control, SIMV, pressure support etc... They weaned me down to a low rate and I began to fight the ventilator. It is a very uncomfortable feeling. I kept motioning for them to remove the tube. Soon after they did and my first thought was to call Barbie in San Diego, which I did. I told her I loved her with all of my new heart. My next thought was to say a prayer to thank God that I came through and felt so well.
My recovery has been swift. I feel great. I have no pain. I still have one tube in my right chest, but I am walking on my own, eating and now typing.
Words cannot do justice to this unique experience, however a few come to mind: Gratitude, comfort, peace, joy and awe. How we have been blessed. I am ready to begin the next phase of my recovery.
I want to thank everyone that has shared their love, concern, positive thoughts and prayers on my behalf. I have felt the power of that support.
Know that I am well.



Kevin is healing well. He is walking - while holding my hand. He's a bit unsteady, but moving none the less. He's eating solids and things inside are moving, if you know what I mean! Kevin feels great and is itching to get to a computer to write a blog. I know he has been composing a number of them as he has been lying in bed.

We remain stunned to think that for a moment he didn't have a heart and now he is alive because of someone elses. At this point we don't know much about the donor. Kevin can write a letter to the family and if they choose, they can respond. What an amazing creation God made that our bodies can accept an organ from another human being and the advances in medicine that allow it to be done. We've seen many miracles in this journey.

The plan as of now is that he could be discharged tomorrow or Monday. Heart transplant patients are only discharged Mon-Thur so that they can go directly to Santa Clara Kaiser for biopsies and tests right after discharge. Kevin and I will live in a hotel near the hospital for one month and then he can go home and recover for 2 more months. These last 2 months of recovery he will visit Santa Clara often for more biopsies and such, but can live at home. That means Rebecca's wedding should very well be attended by her dad! The amyloidosis will be addressed some time close to the end of recovery.

We again are grateful and overwhelmed by this entire experience AND are much better together.


Sunday, August 17, 2008

A new chapter

Kevin is amazing. I was so thrilled to see him last night and felt frustrated that I could only give him a gentle kiss and touch his head. I wanted to hug him forever. It was a joyous moment to be together again.

His progress is going well. He doesn't complain even though he has alot he could complain about. I can see in his face that he is uncomfortable. He does tell me he is weak, tired, has pain in various places in his body and has discomfort in his chest. "Just a little", he says. Today he is less talkative than yesterday coming out of anesthesia. The drugs allowed him to be funny in that groggy kind of way. Kevin has the will to recover quickly, but has limitations as he should at this point in recovery. He did sit in a chair today twice and is on a liquid diet, yet isn't hungry, but plenty thirsty.

It seems redundant to keep saying that things always work out when they are in the Lord's hands, yet it's true. We have been astounded at how incredibly fast the new heart came after having the heart from Mayo turned down. This was a more perfect heart for Kevin and we are all close to home. He can see our girls and our families much easier. The best part is that he will be with Jeremy, Alexandria, Sam and Michelle in October at Rebecca's wedding! That will be a family reunion to remember. An anniversary to remember will be Sam and Michelle's. The day of their wedding is the day Kevin received his new heart.

His birthday is on Tues. this week. I asked him what he wanted; he responded he already got it.

More to come - I'm sure you all will be thrilled to see his next blog(s) . I know I will.

Bless you all,

Saturday, August 16, 2008

Kevin is well

I just spoke to Kevin.  He feels great; he loves me with all his new heart!  He's a bit groggy, but is happy this part is all over.  The heart is a perfect match, the right size and it started pumping without needing to be shocked.  I'm going to see him in a few hours.

Sam and Michelle looked amazing.  The temple ceremony was beautiful.  They were supported by so many friends and family.

More later...

Friday, August 15, 2008

Kevin Has A Heart!

Kevin just called and Stanford has a heart.  He is being transferred by ambulance as I write.  The surgery should take place in the next 5-12 hours.  That's all I know at this point.  We are thrilled and overwhelmed once again.  I will fly tomorrow night from San Diego right after the reception and be there by 8pm.  Kevin should be in recovery at that point.  We have been blessed beyond belief. 

Thank you for all your prayers, love, support.


Thursday, August 14, 2008

Sand and waves calm

My mom, my sister, Rebecca, Caitlin and I left yesterday morning at 5am to drive here to San Diego. After the night Kevin and I had, I think I fell asleep around 11:30 pm for a little while after Kevin's first call about the possible transfer to Mayo. I prayed for a while too. It was already too hard leaving him, and then having to face the possibility of not being with in Rochester during the transplant and recovery was more than I could bare. His final call at 1am was a relief. None of us (doctors and all) feel badly about the decision to pass on the heart. We still feel good about this and I feel wonderful knowing that some lucky person received a heart that night.

We arrived here about 1:30 pm . I drove the entire way because I didn't feel tired at all. Another great blessing. I slept 10 hours last night; I never sleep that long. It did my body good. The first thing we did once getting settled in the beach house was to go to the beach. There is something wonderful about sitting on the beach, putting your feet in the sand and hearing the waves crash. My spirit felt so calm. I called Kevin while on the beach so I could feel him with me. I miss him, but feel so much better. After our experience Tues. night, we can do this!

I wish he were here, but like we all know, it is better that he is where he is. His brother, Daren, is arriving today to spend the weekend with him, while most of the rest of the family will be here for Sam's wedding.


Wednesday, August 13, 2008

Things always seem to work out

Answers to life's mysteries sometimes come faster than you think. Only a few hours after Barbie left, I got a call about an available heart. Normally that would be cause for excitement, but this call was from Minnesota. The Mayo Clinic had a heart. This was totally unexpected. Reason said that I should go, but my heart (what's left of it) was apprehensive. I would need to take an air ambulance to Rochester without Barbie. I would be there alone for the transplant, (however, I knew that the church members there would provide support). I would have to stay in Rochester for 3-6 months for follow up care. This decision was too hard for me alone. I called Barbie and she was distraught. I spoke with my doctor here, Dr Weisshaar, and she said she would arrange to have me flown there. But then a small miracle occurred. Dr Wiesshaar came to my room to ask how I felt about this. I shared my concerns, about the distance, being alone, Barbie being gone at the wedding etc... She understood and said she would speak with the surgeon there. While she was gone I prayed that the right answer would be found.

She returned (after what felt like an eternity) and said, "You need to get some sleep, we passed on the heart." I felt a huge relief as she said this and knew it was the right answer. Even though it would not seem prudent to pass on an available heart today, not knowing when one might come again at Stanford, she felt that I was very stable and healthy and could afford to wait. The doctors at Mayo were in agreement.

I called Barbie and she was relieved. We both got a restful night's sleep. It turns out that there were many factors in the decision, but I believe that Barbie's presence at the wedding, and thus her absence here, was the tipping point.

It's just another chapter in this surreal journey on which we find ourselves.

Waiting, with renewed patience,


Tuesday, August 12, 2008

Our moment

I'm done being strong.  I don't think I have ever cried for as many hours as I did today.  I started an hour before leaving Kevin and then continued my entire 2 1/2 hour drive home.  This is a bitter sweet moment.  My tears have dried up.  I've known for a long time that this moment would come and it would be hard.  It's hard, very, very hard.  Leaving him at the hospital in his sparse room and knowing he is not able to attend the temple sealing of Sam and Michelle is a devastating feeling.  I didn't know it would be this hard.  And for everything I know about eternity and the blessings of the Gospel, doesn't make this moment easy.  Someday we will look back at this time and see a clear picture of how it all came to be and why.  Until then...we move forward, because that is what we do.

Kevin is my life, my breath and my joy.  I am who I am because of him.  My life without him is unimaginable.  I am not ready for him to be anywhere but by my side for a very long time. 


I miss her

She's only been gone a few hours and already I miss her so much. Barbie needed to leave to go to Samuel and Michelle's wedding in San Diego. We haven't been away from each other for almost a month. I didn't really understand how her constant presence gives me such strength. I have learned over the years that a life-threatening illness is much harder for the spouse than for the patient. If a short, brief absence makes me feel like this, a permanent one would be incomprehensible. I have to get better so I can be with her for as long as possible. This is why I must stay here while Barbie goes to San Diego. Each one of us must sacrifice so that we can realize this blessing.

Music makes it worse. Music uncovers the raw emotions that intellect has buried. While listening to, songs like "Make this go on forever" by Snow Patrol would be followed by "Better Days" by the Goo Goo dolls. The cumulative emotional wave would sweep me away into past memories and future hopes.

Barbie's presence keeps me in the present. In her absence there is only the future when she returns.

I am so blessed to have her forever.


Monday, August 11, 2008


Elena, Barbie's niece, shares her toys with Kevin.

My brother Harold and his wife, Darlene, (hiding in back)
My Mom and Barbie's Mom
Barbie's sister, Kathie, Barbie's sister-in-law Emma with her daughter, Elena
And, of course, Caitlin

Caitlin and Elena

Sunday, August 10, 2008

2nd Sunday

Good morning.  We've been here in room 2200 for 9 days.  I shouldn't be counting, but time is going much slower now.  The highlight of my day is my morning shower and what to eat for breakfast, lunch, and dinner.  It's already getting old and we still may have a long wait ahead.  At least I've been able to be outside and feel the wind on my face - Kevin has only seen the breeze through a window.   

Caitlin went to EFY last week in Fresno and had a great time.  Her session director was Dwight Durant, the father of a wonderful family who moved to our town in Connecticut as we were moving out.   It made her stay at EFY extra special knowing he was there.  We came to know the family the few times we have returned to visit.  Caitlin is happy to be home and is coming down again today with her grandmother and Aunt Kathie.  We are excited to see them.  We will also receive a visit from my brother Daniel's wife, Emma, and their little one, Elena, who are here for a family reunion.  Kevin's brother, Harold, and their mother, Myrna, will also visit.  So today will be eventful.

Sam and Michelle are closer to their wedding day.  I talked to Sam yesterday and he was ecstatic to soon be married to Michelle.  They spent the day at the Mt. Timpanogos temple preparing for their wedding in San Diego.  Samuel said his jaw hurt from smiling for 5 hours.  They are going to be a wonderfully happy couple.  

Rebecca and Corey took their engagement pictures yesterday.  I would have loved to watch, but we will all see the results soon enough.  They too are in engagement mode, looking to their future life together with all its possibilities.  

Jeremy and Alexandria seem to be enjoying life and spending time together.  They are busy, productive people. 

Kevin is more fatigued.  They have diuresed him so much, that his energy is depleting.   He's lost 20 lbs. of fluid in one week.  He sleeps more.  Though they are watching his weight, his labs, and his vitals very closely.  The doctor just came in and they have decided to slow down on the lasix to let Kevin's body replenish.   He weighs 176 lbs. which is a far cry from 205 lb.  He eats as much as he can, but with a low-sodium and low-fat diet of hospital food, one can't do too much.  Now and again I sneak him in an ice cream.  Some women will read this and want some lasix, but I don't recommend it.  Unless of course, you want visit the ladies room often and sleep alot. :)

Have a great Sunday, 



Friday, August 8, 2008


I have found a way to get Internet access in my room. I feel like I can step outside now, at least into the virtual world. I am feeling well. The medication, dopamine, has really improved my heart function. The loss of of that extra fluid has greatly improved my lungs and my abdominal organs. I actually feel quite normal. Many of the symptoms that concerned me as possibly secondary to amyloidosis were actually due to fluid retention.

Amyloidosis is a strange disease. It begins in plasma cells. They originate in the bone marrow and circulate through the body. They sense foreign proteins, (such as viruses and bacteria) and produce specific antibodies to fight off infection. Amyloidosis begins when a renegade plasma cell begins producing a faulty antibody protein that does not break down. I guess you could call these cells 'crazy' as it is referred to as a plasma-cell dyscrasia. It is not a cancer because the abnormality is not in the 'immortality" of the cell but rather the cell product. These proteins don't form or fold correctly and pile up in the body. They then get stuck in tissues in various locations; in my case the heart muscle.

This makes my heart muscle stiff and the heart then cannot relax well in between beats. The end result is that there is little time to fill up the heart ventricles so less blood is pumped per beat. What I feel is that any attempt to do any activity requiring greater blood flow is met with an immediate sensation of no energy. It feels like the battery died. Running, walking up stairs, bending over to pick something up all result in immediate fatigue and dizziness. The technical term for this is restrictive cardiomyopathy. My heart pumps about half of the volume that it should in one minute.

Amyloid can go all over the body and effect the gut, liver, kidneys, salivary glands, lungs etc... I had an extensive work-up at the Mayo Clinic and it appears that while other organs are involved, the most significant is my heart. Normally amyloid patients are not treated with heart transplants because they are either too sick with multiple organ involvement or there is a concern that the new heart will fail if the amyloid continues unchecked. The Mayo Clinic is one of the few places willing to combine heart transplant with amyloidosis treatment such as a bone marrow transplant.

However, because I am relatively healthy, and my other organs are not significantly involved, Stanford has agreed to accept me to their transplant list. I will be only the 2nd transplant at Stanford with amyloidodsis and the 1st with AL Amyloidosis.

Once I have a new heart, then I can receive treatment for the amyloidosis. Since this is a rare presentation of a rare disease there is no absolute right protocol for me. As it stands now, I will either get chemotherapy with Melphalan, Steroids and Revlamid or a stem cell tranplant. They will follow a relatively new blood marker (Kappa light chain levels) to ascertain my clinical response.

I thought this brief summary of my condition might be helpful to some of those following my progress.


Thursday, August 7, 2008

Life Decisions

I found in my life that the most difficult decisions to make are those that are between two goods. Everyday I am here with Kevin is closer to the time that I need to leave him for Samuel's wedding. I wouldn't miss his wedding; I couldn't miss his wedding. And yet, I am also struggling with leaving Kevin. I know Kevin will be fine and I know that if a heart is available while I am away, he will be in good hands. Of course, I wish we both could be with Sam & Michelle, but going without him is starting to feel heavy on me. A good cry always does one well. We can't be "strong" all the time; we were given opposition for a reason. I am not leaving until next Tuesday night and then driving to San Diego Wednesday morning. It just hit me this morning that it will be here soon. I will enjoy being with our family again and seeing Jeremy & Alexandria and Samuel & Michelle. I look forward to also being with friends who will join us. I guess I'm feeling that if I address my feelings now that my flood gates will be under control at the wedding. I don't want to spoil something beautiful. Funny thing is that I do feel strong most of the time and that last time I cried was on Friday when we arrived at Kaiser Santa Clara. I felt much better after (crying in my car). And I am starting to feel better now as I am rambling. I know a lot of people are reading this blog and as a usually private person, I am not worried at all who reads this. We feel fortunate to have this means of communication to release and inform.
Thank you to everyone for your continued support.


Wednesday, August 6, 2008

Impatient to Inpatient

It was four years ago this week that we left Connecticut. Many have asked why we left and the reasons are varied, but it was a necessary step to get us where we are today. Among these was the distinct feeling that I needed to make a personal change in my life. I sensed that I was becoming increasingly impatient. I was always looking toward the next item on my agenda rather than giving my full attention to the present. I was impatient in meetings at church as well as at work. I tried my best to hide it, but I felt it. Two hallmarks of my personality have been hard-wired into me from a very young age: Economy of Resources and Economy of Time. These attributes have served me well for my entire life. I wish to accomplish as much as I can in the least amount of time and for the minimum amount of cost, whether it be in dollars or effort. Do not think that this would indicate a compromise on excellence; rather it is more of a desire to avoid distractions and waste along the way. However, eventually, I began to feel a gradual slipping into impatience which ultimately would rob the moment of its innate beauty.

The culture at Kaiser was more structured and required that I slow down to carefully regard the relationships and feelings of others. I was surprised to find that I wasn't as good at this as I thought I was. There is an inverse relationship of how much control you have in your life with how much patience is required. This was a beginning. The same occurred at church. Clearly, this was a life lesson that was critical for me to learn. But, it wasn't easy. The first year was very difficult for me. But it was a necessary preparation for what was to come.

Two years ago my symptoms of weakness became apparent, but were not so significant that they were obvious. I continued life as normal, but always with the thought questioning what was happening to me. Not ever wanting to be seen as weak, I kept this mostly to myself, but Barbie knew. Then things worsened.

It has been six weeks since we shared the news of my condition with others. The response was immediate and overwhelming. I have always believed that I am not entitled to anything; that everything I receive in life is either earned or it is a gift. Since I never expect anything from anyone, I am never disappointed. But in a way , I do err. I do need other people. I realized this as the words of encouragement and prayers of concern filled my life. I have never experienced this before. I feel gratitude all of the time to everyone who is helping me.
I am now completely reliant on everyone else.

Dina, my medical assistant is working hard to help my patients get follow up, while my partners have all come together to take care of my patients. My responsibilities at church are fulfilled by my brethren there. Barbie does everything else. The kids are doing great and take care of home. I miss them.

My life in confined to my hospital room and the telemetry unit at Kaiser Santa Clara. For activity, I walk 5 laps three times a day. I counted the steps and 5 laps is a half mile. I have two constant companions; the IV pole on which drips a solution of Dopamine that keeps my heart physically strong; and Barbie, who keeps my heart spiritually strong. My love for her is immeasurable. I couldn't do this without her. Last of all is the wait. We have no idea how long we will be here. The endpoint is unknowable. There is no economy of time. But time now, means something very different to me.

My patience today is an investment. I need to buy more time. So many others have stepped in to carry my responsibilities while I commit my heart and soul to this goal. And yet, all I can do is be patient and submit to my doctors and to God. My life is in their hands. I can't imagine being in a better place, especially with Barbie at my side.

If God wanted to teach me patience, I can't imagine a better path than the one that I am on.

I am so fortunate.

Tuesday, August 5, 2008

Our guests from Sunday

My mom and I. Caitlin and Rebecca, our daughters.  Dana, Kevin's sister and her husband Craig, with Kevin. He just had a PICC line placed, thus the off the shoulder look. Nice. 

Living out of my car

Walking to the car 4-5 times a day to pick up or return things seems awful and sleeping in a hospital room on a small bed seems uncomfortable but actually it's not so bad.  I'm plenty warm and walking to the car gives me exercise.  I try to use the stairs as much as I can and take a walk every day around the perimeter of the hospital as well.  It helps, as we know.  

Kevin and I have spent a lot of time together in the past few weeks and crazy enough, we still like each other and honestly still love each other.  I'm not tired of him and he's not tired of me.  Tomorrow is our 26th anniversary.  It will be an anniversary to remember.  He feels bad that he can't get out to get me anything - I responded that I didn't need anything.  We are doing well.

Here is what our day is like:
4am vitals
5am weight
5:30 am blood draw
6am usually a visit from someone checking on something
7am vitals again and meds
8am breakfast, 12pm lunch, 5pm dinner
throughout the day, more vitals, meds, and drop ins 

He walks laps around telemetry.  That is where he's confined.  And visits the John often because of all the lasiks (sorry, lasix - he is not having eye surgery).  I think he has lost 10 lbs. of water since we got here.

We spend our day talking and not talking for hours; reading and not reading for hours; sleeping and not sleeping for hours.   

All is well, 

Sunday, August 3, 2008

Life as an inpatient

Things happen fast. Friday I got the news that I was accepted to the Stanford transplant program after a 'lively discussion'. It would have been interesting to be at that meeting. I know that Stanford usually doesn't do transplants on amyloid patients. After discussion with Dr Weisshaar, the Kaiser Heart Transplant director, it was decided that I should come to Santa Clara Kaiser to be admitted for inotropes and diuresis. Since my heart doesn't work well as a pump, fluid backs up throughout my body; specifically in my legs, abdomen and lungs. This affects eating and breathing, (two things that I enjoy doing). Inotropes are drugs that make the heart pump better, and in my case, relax better. This allow more blood to pump with each beat. The drug I am on is Dopamine and is give by continuous IV infusion. It is similar to epinephrine or Adrenalin. With the improved pump, more blood gets to the kidneys which can then get rid of it. This is also helped by Lasix a diuretic. The end result is that I have lost five pounds of water in 2 days.
I am feeling well and try to exercise by walking in circles in the hallway. The food is low sodium hospital food, 'nuff said'. However, Craig and Dana snuck me in a Rocky Road candy bar and Barbie brought me Ben and Jerry's Karmal Sutra ice cream. Life is good.
We are now in waiting mode, but each day brings me closer to a healthier me. I am committed to put my whole heart into this endeavour.

Thanks for all of your support.


Saturday, August 2, 2008

A little note

I asked Kevin if he wanted me to post anything for him this morning.  All he said was that he is happy to be here.  

Friday, August 1, 2008

Stanford said, "Yes!"

This morning around 11 am, Kaiser Santa Clara called to let us know that after a lively discussion at the selection meeting with Stanford, they agreed to put Kevin on the heart transplant list.  Once Dr. Weisshar asked about Kevin's current symptoms, she wanted him to be admitted today.  We packed, said our goodbyes again and left.  He is now in his room being monitored and on Dopemine to help his heart relax and  is now listed as a 1B.  Stanford believes he will have a heart transplant within the next few weeks.  It is a known fact now that he will not be able to leave for Samuel's wedding.  Samuel is understanding and wants what's best for his Dad.  We've come up with a video phone chat so Kevin will be able to sort of be present.  At this point, he's not even allowed to leave the cardiac unit where there is no wi-fi.  He says he will try to sneak out to write a quick blog, if not, I will do a copy and paste.  He is comfortable in his bed and forced to rest, thank goodness.  He was tiring out more and slowing down.