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.
Barbie
 

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.

Kevin

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! 

Barbie

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.

Kevin


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

Freedom



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.

Barbie

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.

Kevin

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.

Barbie


    
 

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.

Kevin