Wednesday, July 30, 2008

We wait yet again

We've been home for 27 hours now.  I've unpacked, done laundry, found a dress for Samuel's wedding, found dresses for the girls to wear to Sam's wedding, relaxed in the hot tub and best of all, ate Thai food for dinner with good friends, my mom and Rebecca.  Some of those items Kevin joined me in - for some reason he didn't join me in the shopping!  Can't figure out why.  While we are home, I have felt the urgency to do as much as I can to prepare for the upcoming weddings.   Rebecca is looking at invitations, flowers, and cake.  The other BIG things are already done.  There are still a few technical details to complete for Samuel & Michelle's wedding.  All the other major details were done by Michelle and her family.  

We have spent the last 2 months living in the world of 'if this - then that' and we are still here.  We've spent a lot of time waiting for the next results or the next plan.  Now we wait again for Stanford's decision and then maybe their next plan.  And then we wait for a heart.  Someone out there has made the decision to be a donor - and that same someone will be a match for Kevin.  That is an immense thought.  We spoke to the Social Worker at Mayo about this very subject.  The realization that someone needed to die in order to give life to Kevin seemed tragic.  She reminded us that the donor and their family, in their sorrow, feel at peace in returning life to another.  Another great blessing.
Be a donor and donate blood.

Happy to be here

Barbie and I arrived home last night. I felt like Dorothy from the "Wizard of Oz". "There's no place like home". All went well in Minnesota and I was officially listed on the Mayo Clinic heart transplant list. On Friday my case will be presented to the selection committee at Stanford for possible listing. Stanford has only done one transplant on an amyloid patient since their program began. He was done in 2004, and like myself, was a Kaiser patient sent back from the Mayo Clinic as a 'good' candidate. I spoke with him on the phone and he is doing great. He wants to visit me in the hospital when I get my transplant. That would be nice. He invited me to the Amyloid support group that they have at Stanford.
It was so wonderful to see and hug my daughters. When you have a round trip ticket, you always know when you are coming home. Being in Rochester without a return itinerary was emotionally hard. Today, I just sit in the backyard and enjoy the view. California is beautiful.

More to come.


Tuesday, July 29, 2008

It's true

As Kevin said, we are going home.  We have thoroughly enjoyed our stay here.  The church members and the care we received at Mayo were remarkable.  Is it possible to live in two places at once?  I guess not.  We have missed our girls, our home, our family and friends.

When we return we are still not sure of the next step, but will inform you as soon as we know.  To answer a question.  If the heart becomes available at Mayo first, they will fly us here immediately for the transplant.

We have been so blessed and are still quite overwhelmed by the love we have felt from so many.  
Thank you! 


Monday, July 28, 2008

We're coming home

We met with the oncologist and the transplant cardiologist today. We received good news from both. The oncologist informed us that the plasma cell count in my bone marrow was very low and slow growing. This means that the Amyloidosis is relatively less aggressive. Then the transplant cardiologist informed us that we were accepted to the Mayo Clinic heart transplant program and will officially be listed tomorrow. In addition, he wants to have me listed at Stanford for a heart transplant since their waiting list is shorter. He called the transplant team there and they will present my case on Friday at their selection committee meeting.
Barbie and I will fly home tomorrow.
We are so grateful to everyone for their thoughts and prayers on our behalf. We are also grateful for the excellent care extended to us by all of the doctors, nurses, technicians and staff, both here and at Kaiser.
We are also very appreciative to the members of the Rochester 3rd Ward for making us feel at home while we were away from home.


To prove to some of you that we haven't just vacationing here in Rochester, I have included a picture of me with Dr Edwards.

Sunday, July 27, 2008


This weekend was a much better weekend than last. We rented a car Saturday morning and headed out of Rochester to the Mississippi River. We drove north to Lake City and then south along the Mississippi River. The river in this part of the country is quite beautiful and across the river are equally beautiful parts of Wisconsin. We stopped at Great River Bluffs State Park, which a guest told us was " heaven on earth." The landscape was filled with wild flowers, red and white pine, oaks, hickory, maple and walnut trees. The most unique part of the park is the "goat prairie", named because some slopes are so great that only goats could graze it. This park is also home to many wildlife including, 35 known mammal species, 17 kinds of reptiles and amphibians and over 100 kinds of birds. The prairies are home to many of these species and provide food for the hawks, owls, eagles, fox, and coyote.

We also drove into Wisconsin, just to say we did. The part we crossed over wasn't the best part. I'm sure Wisconsin has nice towns, but not this one.

Having a car gave us more freedom - we were glad to not be in our room all weekend. We drove to church and once again were met by extremely friendly people. All willing to help us with whatever we need. We've been invited to dinner 3 times and potluck dessert night. Two people have offered us to stay in their home if we ever need it. And others have offered us rides. Needless to say, we have been taken care of and have added new friends to our circle of friends

They say Minnesota has a code of conduct of being nice and not saying anything bad about anyone. We have seen it - they are genuinely nice.


Saturday, July 26, 2008

The cost of salt

The bible says that we are the "salt of the earth". This reminds us of how salt is an essential part of life. However, as with all aspects of are lives, balance is essential. This is no more evident than the critical balance of salt in our bodies. We must maintain a level of sodium of exactly 140 meq/dl at all times. if we deviate even 10 meq in either direction, we can have a seizure and die. This is handled beautifully by our kidneys, which I have always believed to be the most important organ in the body. (I am having serious second thoughts, of late, as to the kidneys importance compared to the heart).
For years people would comment to me of how salt was a poison and to avoid it in the diet. My response was typical of a scientific 2-dimensional view of the body as a chemistry lab. I would say, "You don't need to worry about salt, as long as you have a good heart and good kidneys, you'll be in balance". Although this, en faze, is true, it belies the insidious nature in which this delicate balance can be disrupted.
About a year ago, Barbie bought me a book on the history of salt. It was fascinating. I realized that until 100 years ago, salt was considered a rare commodity and was often rationed. Now it is ubiquitous. It is in everything. Even while I was reading the book, I had no idea that my body was struggling to maintain my salt balance.
I love salt; pickles, pizza, pistachios, potato chips and pancakes were among my favorite poisons, and those are just the "P's". What I didn't realize was that my constant abdominal upset was related to this. Finally, in February of this year, it became evident that I was in mild heart failure and I was told to go on a salt-restricted diet. The effect was immediate. In one week I lost ten pounds and felt wonderful. However, I then became obsessed with the sodium content of everything.
Salt-restriction is actually a misnomer. I was told to stay within the daily recommendation of sodium intake for all Americans, not just those with bad hearts. This is 2000 mg a day. (The equivalent of one teaspoon of salt). Salt became my adversary. It is in everything; all prepared foods, anything from a can or package, all soups, anything brined or marinated, all restaurant food, you can't escape it. Why did I lose weight? Two reasons, by eating less salt, I stopped retaining water and second, it was hard to find low sodium foods, so I ate less.
Which brings me to this amazing revelation. Yet another in the myriad of weight loss plans. Try eating 2000 mg of sodium or less per day for two weeks, and I guarantee, you will lose weight. Not that I wish to make light (pun intended) of my situation. However, I have learned over the years that my original simplistic view of nutrition and chemistry was inadequate. Our bodies were originally designed for a world in which calories and salt were in short supply. We had to extract minimal nutrients from fiber rich/calorie poor foods. That is all reversed now that food-processing removes the fiber for us and adds salt, fat and sugar for taste. We weren't designed for this.
I guess you can teach an old dog new tricks. In the end, salt, which is now the cheapest of food substances, has cost me a lot.
Just a thought.


I should add, salt did not cause my heart problem, amyloidosis did. The salt only makes it harder for my sick heart to maintain proper fluid balance.

Friday, July 25, 2008

What matters most

I just went surfing around on the internet about heart transplants, from being listed, to recovery and life changes.  I found it helpful and informative, but also a bit overwhelming reading the extremely long list of risks.  While I don't believe Kevin will get all of them, there is a chance he may develop a few.  I needed to have a picture in my mind of what he will look like in intensive care right after surgery.  I have a better idea now and will feel better prepared.  It's a wonder how anyone seriously ill survives the enormous stress the body is under during any major open surgery.  I am even more amazed and grateful to those who have spent their adult lives researching and studied how the body reacts to medication and trauma and discovering ways to balance the body to its natural state.  I truly believe it is a combination of medicine, patient will, and God that heals.  All play a vital role in this process.  

Having been married to a surgeon for 26 years (in two weeks), I have heard many stories of miracles, healing, death, and pain.  At times I feel sympathy for the patient and family, while never knowing who they are.  I am happy for those who survive and sad for those who "give up" before they have gone.  Life is such a fragile thing; at any moment it can be taken from us.  This is why at this point in our lives we are at peace.  I don't feel sorry for Kevin and I don't feel sorry for myself.  We face this new challenge knowing there is something we are to learn.  I have already changed and will never be exactly as I was prior to this diagnosis. I don't get worried about the "little things" anymore and what gets done, gets done and what doesn't, doesn't.  I find I don't need "things" right now and also realize since we have been living in a studio room that I don't need much.  Though I would not go too far - a computer and a phone are essentials!  

What I have always known, but have truly come to understand is that what matters most is relationships.



Thursday, July 24, 2008

A long week

Today we met with the psychiatrist, nutritionist, oncologist and the heart transplant surgeon. The studies are almost completed. I have another bone marrow biopsy tomorrow because the Mayo Clinic does some special studies on it for amyloidosis.
The final decision is made on Monday at the selection conference, however, both the surgical director, the medical director and the oncologist feel that I would be a good candidate for a heart transplant. The chief concern in performing a heart transplant in amyloid patients is that even thought the transplant would be successful, if the amyloid has already attacked multiple organs, there might be little benefit from the transplant. It appears that my other organs are doing pretty well and show minimal effects.
Dr Edwards, the medical director, wants to speak with the transplant team at Stanford to possibly get me listed there as well. In that situation, I would be listed at both the Mayo Clinic and Stanford which could increase my chances of getting a heart. In addition, I would be able to return to California to wait. This would be such a blessing. I really do miss my family and would like to be there for the upcoming weddings.
I hope it all works out.
Thank you all for your prayers and sincere concern for us. It has made such a difference in my life.


Wednesday, July 23, 2008

Appointment after appointment

I thought it might be interesting to some of you to have a glimpse of Kevin's visits at Mayo.  As of today, we have been doing this for a week now and have three more days of testing or visits, including today.  Here is a list of some of most of his appointments.
  • Labs, labs, and more labs ( I will leave out the details)
  • Electrocardiogram
  • Chest x-ray
  • Heart transplant consultation
  • Echocardiogram
  • Exercise Test
  • Skeleton Bone Survey
  • Renal Function Test
  • Body CT
  • Arterial Blood Gas
  • Pulmonary Function w/dilator
  • Bone Densitometry
  • Ultrasound of the Abdomen
  • Oral & Maxillofacial Surgeon
  • Social Worker
  • a Walk test
  • two Cardiologists from the transplant team
  • Infectious Disease Visit
  • Upper Endoscopy
  • Pulmonary & Critical Care 
Right now he is having a Cardiac Cath.  It will be done with local anesthesia, unlike yesterday when he was sedated for his Upper Endoscopy.  I've never seen him sedated before.  Kind of strange to see him without all his mental capacities working.  Sometimes it was a little funny.  When he finally felt better after a LONG nap, he asked, "Where did the wheelchair come from?"  I chuckled.  I had pushed him from the 9th floor of the Gonda building and two blocks to our room.  He was quite embarrassed, not because he didn't remember, but because I had wheeled him. :)

Tomorrow and Friday he will see: Psychiatry, Dietician, Hematology, another heart transplant evaluation discussion, meet with the transplant surgeon, Otorhinolaryngology, Neurology, and last (deep breath), Esophagus X-ray.

Next Monday will be the BIG DAY when the entire team meets and decides how to proceed.  We have heard many options and will be anticipating the call that afternoon.  

Love you all and love your comments, 

Monday, July 21, 2008

The building in the back behind me is one of the many buildings of the Mayo Clinic.
Fortunately, we do have a small kitchen to prepare our low salt meals.
Barbie is grateful for cell phones and the internet so that we don't feel so alone here. Here we are sitting outside Mac's Cafe, one of many Greek restaurants (they make a great Gyros)

Sunday, July 20, 2008

A very long weekend

We had been so busy since we arrived here that we hadn't had time to stop and think about what just happened to us and our family.  I had way too much time this weekend to reflect on the past couple of weeks and the future here at Mayo (or "the clinic", as the locals refer to it.) Though it was good for Kevin to have a few days to recover and get rest.

I try really hard to to stay in the "here and now" and not spend too much time thinking about those things that make me sad.  When I do, I cry a little and then go for a long walk on the treadmill down stairs.  It helped at 5am this morning, as I knew it would.  

We were picked up for church by a member of the ward.  They were all amazingly friendly, offering dinners, rides, their homes and more.  The ward is made up of people who are employed at the clinic - doctors, nurses, techs, volunteers, interns, fellows, and residents.  Many of them seem to know what amyloid is and have seen it before.  That we are grateful for - it reminds us that we are in the right place.  We met the fellow that is training to be a cardio-thoracic surgeon.  He is the one who retrieves the heart and brings it back to Mayo and on the side, he teaches Gospel Doctrine.  We are pleased we have been met with open arms and by people who are so friendly and giving. 

Things I am grateful for: 
  • Our children are all in a good place in their lives.
  • My girls are being cared for (even though Rebecca is an adult - it's good to have grandma around).
  • Friends and family at home who are concerned for us and for our children.
  • Friends from all over that have contacted us and sent their love.
  • A treadmill in the building.
  • A beautiful fountain outside the Mayo that allows me to relax. (There is something about water.)
  • Modern technology that allows us to communicate and feel connected.  
  • The "Clinic"
  • Kevin

Saturday, July 19, 2008

How I got here

Many are surprised to hear that suddenly I am so ill. Those who have seen me for the last year had little idea that I was actually slowing down. I tend to hide things well and minimize my limitations. Some may view this as a fault or pride, but since I did not know what was happening and whether it was reversible, I felt to keep it private. Once I finally did learn the gravity of my condition, I then shared the information with others. The immediate reaction was overwhelming. The emails, calls and cards expressing concern and support formed a touchstone through which I was reminded of the enormous number of souls from all over the planet that have touched my life in some way.

As we daily try to meet all of our appointments and tasks which are driven by our priorities and responsibilities, it is easy to forget the import of where we have been. This was made very evident a week and a half ago on Wednesday. I was scheduled to do two big cases that day, a pecutaneous nephrolithotomy and a laparoscopic radical nephrectomy. The first removes a large stone from a kidney through a half inch whole in the back. The second cures a kidney cancer by removing the kidney through a 3 inch incision at the belly button. I was in my office, awaiting my time for the OR and I got a call from my transplant cardiologist. The heart biopsy had returned positive for Amyloidosis. She told me that I should stop working immediately to prepare for the process of getting a heart and bone marrow transplant.

The call ended and I began to weep uncontrollably. Not because I had been diagnosed with a potentially fatal illness, but rather because I would stop doing what I have done for 20 years. I am defined by my responsibilities to other people. The only true happiness I have ever known was when I was in the service of other people. This is who I am. To suddenly cease doing this is to lose a part of myself. I wondered how in this emotional state would I be able to do these surgeries. But then, I am a surgeon. We do what we have to. I remembered how many people were praying for me, fasting for me; and in this moment I knew that their faith would carry me.

The first case went well and we got the stone out of the kidney. As I was getting ready for the last case, it occurred to me that I alone do not have the power to cure myself, but I can cure this man of his cancer. I have the strength left to do that. The surgery went as well as it ever has. Every step proceeded smoothly and in two hours I was speaking to his wife to tell her that her husband would be fine. During the case, all thoughts of myself disappeared I felt no weakness or dizziness. I was carried through. I knew that this was the last operation I would do for some time.

Soon, I was in the OR lounge and saw a woman on whom I had performed the same operation three years ago. She worked for environmental services. It was her job to clean the OR when we are done. I could not do my job without her. She always smiles when she sees me. For some reason this time she asked, "Dr. Anderson, why did I get that cancer?" to which I responded, "It is nothing that you did or didn't do, sometimes these thing just happen." I couldn't help think of my own situation in that moment. I then felt to say something much more personal. I said, "Every time I see you, I feel happy because you remind me that what I do has value." She then jumped up from her chair and came over and gave me a hug and said, "Thank you, Dr. Anderson, for saving my life." I could not imagine a more fitting end to such a day.

We all make a difference everyday in ways that we do not realize. The sum of all of those moments are what make our lives worth living. I am grateful for those myriad of moments that have made me who I am.


Friday, July 18, 2008


Some of you have asked for our address, here goes:

Residence Inn by Marriott
Rochester Mayo Clinic Area
c/o Kevin (or Barbie) Anderson #514
441 West Center Street NW
Rochester, MN 55901

If you want our cell numbers, email us and we will email you with that information.


Thursday, July 17, 2008

I'm not the patient

Not being a patient, I found out today, is still exhausting.  I'm tired and my heart is fine and I'm not the one who had tests and pokes all day.  Kevin mentioned that it felt like Disneyland.  I thought so too, but for a different reason.  I had the itinerary and for me it was like trying to hit all the shows on time.  He had appts. at 7am, 8:20am, 9am, 10:30am, 12:30pm, 2:30pm, 3:30pm.  Some were two hours long.  Tomorrow and all of next week are much of the same.  Many tests he has to repeat.  Mayo is extremely thorough.

We'll take pictures soon.


Let the testing begin

Mayo clinic is quite a place. One might call it an assembly line given how efficient the process is, however, that would not do it justice since everyone is so nice and personable. The facilities are beautiful. The day began at 6:30 AM in the lab and then the ECG followed. Four men or women at a time a called up and sent to gender specific hallways where you remove your shirt and wait in a cubicle made of fine cherry wood. Then you all cross the hall as you would at Disneyland to get on a virtual reality ride. The test is done, efficiently, and you move on to the next station on your pre-printed agenda; Chest X-Ray, Exercise tolerance O2 consumption test, Echocardiogram, back to the lab and then back to X-ray.
This morning, we did meet with Dr Clavell, the transplant surgeon to discuss my options. He is very nice. He described a week more of work-up (the itinerary is exhausting) and then my case will be presented at their committee to decide if I have a heart transplant first or begin with a bone marrow (stem cell) transplant.
Being a patient here is like a full-time job.

Wednesday, July 16, 2008

We're here in Rochester

Barbie and I arrived safely in the 'land o lakes'. From the air there certainly are many lakes. We are now at the Residence Inn which is one block from the Mayo Clinic. Tomorrow I begin a full day of tests and doctor visits. Rochester is not a big city and clearly has the Mayo Clinic at the center of its influence, (both geographically and figuratively). I have felt the strength that comes from all of your support and love. Thank you so much for all of your sincere thoughts on our behalf.


Big Day Tommorow

We arrived safely and are getting settled.  It seems this will be home for awhile.  We have a small kitchen,  free wireless internet, a gym, and other emenities that will be helpful.  

How to pack for the unknown is not easy.  Our suitcases were heavy with books, electronics and all their cables!  I even packed some protein shakes and bars.  Who knows when I'll get to eat?  
I had a hard time leaving this morning.  I kissed Rebecca and Caitlin goodbye and held back my tears.  I will miss them.  But, I know they are in good hands with grandmas and aunts near by and might I add, lots of friends who check in and friends to keep Caitlin busy.  My sister is at the house now and my mom comes in Friday morning.  What a blessing to have a loving family!  So many have asked how they can help and truly, I wish I knew.

Tomorrow is Kevin's day to continue as a patient of more"pokes and prodding".  This time at the Mayo Clinic.  I can't remember how many specialist he is seeing tomorrow, but it's more than three.  I've been reading up on what to expect from a heart transplant but I'm not so up on the newest treatmenta for AL amyloidosis.  We've been told different things.  So tomorrow is a new day of learning more.  I'm holding up quite well.  I'm kind of surprised.  I didn't know I had this in me.  I'm not in denial; I know it's just the beginning :)  


Tuesday, July 15, 2008

Big News

Today we got the call that we will be going to Minnesota tomorrow to be evaluated for the possibility of receiving a heart transplant. I will use this blog to try to keep friends and family updated on my progress. Thank you for all of you love and prayers of support.