Dieter Zander Update

From April 19th. Dieter running the slopes of Mount Burdell near his home in Novato, CA.

Well, we just don’t have a clear way forward with this stenting procedure.  In the effort to find the most experienced doctor to do the procedure, we have received additional opinions urging us to wait.  The hope with waiting is that the artery lining might heal on its own.  This is not wishful thinking, but the standard protocol for many carotid dissections.  At the same time, about half of the doctors we’ve consulted advise placing the stent.

So we still need clarity and wisdom to make the best decision.  I’m not sure why this one is so hard.

Dieter has developed pain in his right shoulder and needs to go back to a physical therapist for help, rather than relying on home exercises.  I get anxious about problems like this, because I feel too much responsibility was left on us at home.  Please pray for us to get good help in solving this problem.

Many of you, like us, have been waiting for news about the procedure to place another stent in Dieter’s artery. I thought we would have all the opinions a week and a half ago, but different doctors have been on vacation or out sick. Just today, we got the final opinion we had requested.

Although the doctors offered differing opinions, we have decided that the benefits of this procedure outweigh the risks, and we’re going ahead. This surgery will not correct anything that has already happened nor repair any damage from the first stroke. It will, though, restore the currently slowed blood flow in Dieter’s brain to his normal levels and protect him from future strokes. We hope Dieter can go in for the procedure in about 2 weeks and not more than 4 weeks from now. He’ll stay in the hospital 24-48 hours.

When we have a date, I’ll post it here.

Dieter continues to work on daily exercise, therapy for his arm and hand, and speech therapy. His right shoulder started hurting, so he’ll be meeting one-on-one with a physical therapist to address the pain and regain full range of motion. The physical therapist will also help with a bit of a limp that has started. We’ve realized that, without the help of a professional, we don’t know how to help Dieter do his exercises correctly, and then problems develop.

Last Sunday, we went back to church. To all of you at BayMarin, it was really good to be with you again.

This is Dieter writing, with Valerie’s help.  I wanted to give you this update.

Thank you for all the prayers for me and all the encouragement from cards and emails and phone calls.  I always read the blog and all the responses you post here.  Thank you for all the grand dinners and support.  Today some friends came to our house for spring cleaning, and we cleaned out the garage and tool shed together.

My exercise is hiking, a little jogging, calisthenics, a yoga class, and exercises for my right hand and arm.  I’m also doing some therapy that involves motions set to music.

My speech therapy, or “vocal” as I call it, is frustrating.  I’ve been working hard to say the following:  Dieter, Valerie, Kyle, Conrad, and Christopher; the days of the week; counting from 1 to 20.

I am supported by so many and my family.

I would like to expand on the news from Monday’s angiogram, especially after talking to a friend who is a doctor who clarified for me what the situation is.  Of course, we hoped for great results from the angiogram, and we didn’t get them.   But, at the same time, the angiogram revealed that Dieter has a fixable problem, rather than a rare and unfixable problem, which was one of the possibilities.

Dieter has a pseudo-aneurysm in his carotid artery.  It can be fixed.  The procedure for fixing it is, in itself, risky, so we are weighing the decision.  One team of doctors meets this Friday, and we are getting a second opinion from another team that meets next Monday.  Both teams have nurses that return calls quickly, for which I am grateful!  So I hope that we will have all the information we need by next Tuesday and can make a wise decision.

Dieter had a follow-up cerebral angiogram today, and the news was not as we had hoped.  We were hoping for a confirmation that all arteries are flowing well, and the damaged sections are healing.  Instead, the angiogram revealed that one damaged section is not healing and is, in fact, slowing the flow of blood in Dieter’s brain.  The doctor’s recommendation was to do another procedure similar to what was done on Feb. 4, in which another stent would be placed in Dieter’s artery.

I should know tomorrow how much time we have in which to make this decision.  We have at least this week, as the doctor meets with colleagues on Friday morning in order to get other opinions.  Please pray for us and this decision.

For several days, I’ve wanted to share with you the lyrics to my favorite of the many songs Dieter has written.  It’s called “In All of My Living” and is based on several old Celtic prayers.

God, be in my head, in all of my thinking / God, be in my eyes, in all of my looking
God, be in my mouth, in all of my speaking / God, be in my life, in all of my living
God, be in my heart, in all my understanding / God, be in my hands, in all of my working
God, be in my legs, in all of my going / God, be in my life, in all of my living,
And God be at my end and in my departing.

These lyrics describe how Dieter wishes to live.  But they have particular poignancy is we pray for his body, his health, and his recovery.

Thank you, Valerie

On March 19, I wrote “Sometimes really good things do happen.”  Well, sometimes difficult things happen, too, and, starting on Easter afternoon we’ve had the following:  Kyle got sick, I got sick, the dog got an ear infection, the vacuum cleaner broke, and the kitchen pipes backed up . . . twice!  None of it is too serious, but it is really tiring.  I have not had the energy to write an update, plus I’ve mostly lost my voice, so I couldn’t even phone it in.

Dieter has continued with therapy, though two of the therapists have asked him to relax and enjoy  his “assignments” more.  They’ve warned him that pushing as hard as he is will not help him recover faster and may in fact slow his recovery, through discouragement, exhaustion, or injury.  So, in different ways, both of us are needing to slow down.  As I’ve asked before, please pray for us to know when to work and when to rest.

This year, Holy Week and Easter Sunday were unusual.  Loss and grief mean something different to us now, as does the hope of resurrection.  I dearly wished Dieter and I could talk with each other more fully about his reflections this year.

Yesterday was the 8 week mark of Dieter’s stroke.  If I had forecasts or predictions from reliable sources about his recovery, I would share them, but I don’t.  In the absence of such predictions, we work and wait and hope and pray.

Early in the morning, as has always been his habit, Dieter makes coffee and spends time praying.  Because he has the Bible on his laptop, he can search for passages he wants to read.

We usually work together to make breakfast for the boys, and, after Conrad and Christopher leave for school, Dieter and I take our dog on a walk for about 45 minutes on some hills near our house.  

When we return, Kyle leads Dieter for 30 minutes of physical therapy, which consists of exercises for strength and balance.

Mid-morning on Mondays, the occupational therapist comes to the house.  On Tuesdays, Thursdays, and Fridays, it’s speech therapy.  If a doctor’s appointment is necessary, we try to fit it into Wednesday mornings.  

Late morning. Dieter practices using his right hand, whether on the piano, by making lunch, or by trying to type an email.  After lunch, Dieter naps for about two hours.

In the afternoon,  Kyle repeats the physical therapy, and I try to fit in a session of speech therapy practice.  Christopher sometimes works with Dieter at the piano, playing and singing scales together.  Dieter might work on his computer or play a little basketball with the boys.

Evening brings us to dinner, which has usually been brought by a friend (many thanks to all of you!).  Of course, at this time of year, evening usually also brings a game or two from March Madness.  We retire pretty early.  

Please pray for us to know when to push hard and when to rest.  Also, please pray for Dieter to be able to speak again.

Sometimes really good things do happen.  Here are a few from our last
six weeks.

At the first hospital, when Dieter’s family was here, we received a
visit from one of the hospital’s chaplains.  A friend of ours who
works in the hospital had asked the chaplain to check on us.  This
chaplain is German, and she was able to speak in German with Dieter’s
parents, helping them to express in the easiest possible way all that
was on their hearts.

At the second hospital, Dieter’s physical therapist was the first
person who helped Dieter walk.  A few weeks later, a friend of ours
reminded us that, years ago, we were seated at her wedding reception
next to this same physical therapist and his wife.  Neither the
therapist nor we had remembered, but since our paths crossed again,
he is available to advise us on the best exercises for Dieter.

At the third hospital, one of the physical therapists recognized
Dieter’s name when he was admitted, and thought, “Maybe that is the
same Dieter who was my pastor back in the early 1990s at New Song.”
She re-introduced herself to us, and she was in charge of Dieter’s
physical therapy for his two-and-a-half weeks in that hospital.

Now we are home and receiving home visits from the occupational
therapist.  It turns out she is a pianist, too.  She was able to show
Dieter piano exercises that are good for his hand.  I am so grateful
for someone who “speaks piano language” with Dieter, which I cannot do.

Thank you for sharing with us in the good times and the hard times,
which, I think, tend to come all mixed together, not sequentially.  Val

At our family dinners, we frequently tell each other “highlights and lowlights.”  When it comes to how Dieter is doing, I’d like to tell you our highlight and lowlight of the past several days.

Our highlight was an appointment last Thursday at UCSF, a major research hospital in our area, for a second opinion as to Dieter’s current treatment and level of rehab.  Both the medicines he is currently using and the program of speech therapy were confirmed.  More importantly, the neurologist, who specializes in strokes, said that Dieter is doing amazingly well considering how recent his stroke was and how many medical setbacks he has had since then.  She was very encouraging about the outlook for Dieter’s recovery.  We also wanted a second opinion on options we’ll consider for preventing future strokes.  It was harder for the doctor to say anything definite in this area, but she did confirm that, for the time being, our focus should be on Dieter’s rehab.  That means working on speech therapy, therapy for Dieter’s hand, lots of physical exercise, good nutrition, rest, and stimulus for the brain in the form of learning new skills.

Our lowlight was trying to cope with Dieter’s frustrated desire to communicate.  Our youngest son, Christopher, wrapped a musical today in which he played the lead.  Our middle son, Conrad, is hearing from colleges that have accepted him for next year.  Our oldest son, Kyle, is shouldering the responsibility for Dieter’s physical therapy and many of his doctors’ appointments.  Can you imagine Dieter being so proud of each of his sons and unable to tell them so?  It can be a real heartache.

To our friends at BayMarin:  It was good to be with you briefly this morning, and, as I said, we do look forward to sharing our stories and hearing yours in the months to come.