Merry Christmas!!

In a break from all the medical jargon and the stress of living on the heart transplant list, let me introduce you to Lucy, our very own Christmas grandbaby.  Lucy is the first child of our daughter Katie & husband Isaac.  She weighed in at 9 pounds, 14oz, after a long, hard labor.  What a blessing. Our Christmas is made so very special by her arrival.  I can hardly wait to meet her in person.

Take a few moments to enjoy the writings of Lucy's daddy, as he shares some wonderful insights on Christmas: Christmas in Utero

Last, but not least (cliche', but true ...) Happy 41st anniversary to my wonderful husband, Lee.  It's been quite a journey and I look forward to many more anniversaries to come.

Matthew 2:10 When they saw the star, they rejoiced exceedingly with great joy.

Book Review

There's not much to update or report.  That's not a bad thing in our world!  Lee is doing very well on the Milrinone therapy. Dick Cheney (the former vice president) called Milrinone "Rocket Fuel," and Lee agrees.  It makes him FEEL like he's better.  He has more energy and can walk a little farther without being out of breath.  He feels more mentally alert as well.

I'm inserting a "thank you" here to whoever sent us the book "Heart: An American Medical Odyssey."  
It's authored by Dick Cheney and his cardiologist, Dr. Jonathan Reiner.  It's not only a story of the former vice president's personal 35 year journey (from the first heart attack to a heart transplant last year) with heart disease, but a chronicle of the amazing advances made in the treatment of heart disease. The book arrived at the perfect time, with no indication of who sent it to us, so we're thanking you, whoever you are. The book is a valuable resource into understanding treatment and informative for getting a realistic view of what lies ahead for us (both the hard and the GOOD stuff.) We highly recommend the book.

At the Mayo Clinic appointment on Wednesday, the doctor told us we could stretch out the appointments to once every 2 weeks, instead of once a week.  YES!  That extra 115 mile round trip will not be missed.

We are settling into a routine of daily flushing of the IV port.  We had the home health nurse put an extension on the port that needs daily flushing, so Lee can do that himself now.  We have a weekly delivery of supplies for the Milrinone IV:  heparin syringes (for the daily flushing of the extra port), saline syringes (for the weekly flushing of the port being used for the Milrinone), 9-volt batteries (replaced 3 times/week on the CADD pump), alcohol wipes, sterile packs (for the nurse who changes the dressing once/week), gloves and masks, AND the all important bag of Milrinone that goes into the refrigerator until needed (we always have a backup bag on hand.) We received more training last week so now we can switch out the CADD pump and the IV bag on our own too.  We will still have a nurse come once per week to do the dressing change and inspect the port to watch for infection or any other problems.

All in all, a good week.  Our church, Grace Fellowship Church, gave a Christmas concert last Sunday. I was blessed to be able to sing with the choir & Lee felt well enough to gather some neighbors and friends and bring them with him to the concert. It was a beautiful evening to take our minds off of our current struggles, to rejoice and remember The Reason for the Season:  Jesus.

Merry Christmas, everyone.

Isaiah 9:6  "For to us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace."

Holding Steady ...

We got home from the Mayo Clinic Hospital at around 9:30pm last Tuesday.  We were both pretty well exhausted.  We had a bag FULL of new stuff (syringes, tubes, CADD pumps, batteries, sterile wipes, and some things for which I have no name or purpose) and our heads full of new information. Bed and sleep were the primary goals for both of us.

The next afternoon, our home health nurse came by to review all the paraphernalia (who knew there was an "R" in that word??) uses & to ensure that we were comfortable with operation of the CADD* pump that delivers the heart medication (Milrinone) through the PICC** line, the error messages and how to reset the pump, as well as flushing the PICC line daily and how to watch for signs of trouble. She spent a good deal of time with us that first day and by the time she left, we felt much more comfortable with our new devices and tasks.

The rest of the week was spent trying to figure out what our new routine will be.  Good, constant (7 or 8 hour) sleep continues to evade Lee.  He is sleeping 3 or 4 hours in the night, getting up between 3am and 4am, most days.  A little later in the morning, he will usually go back to bed for another 2 or 3 hours.  It's pretty variable, so we are trying to just go with the flow and Lee will sleep when he needs to and is able. I'm trying to plan my noisy activities around his sleeps.  

With heart failure, sodium is greatly restricted (under 2000mg per day.)  Sodium causes the body to hold onto fluids, making it harder for the already sick heart to pump. You would be surprised (and shocked) to find out the sodium content in some of the foods we eat.  We have always eaten whole wheat, multi-grain breads.  We really like the Costco 21 grain bread but hadn't been to Costco for awhile so we picked up a loaf of another well known brand.  A couple of days later, I checked the label and found each slice contained 290mg of sodium.  Costso's 21 grain has only 90mg per slice. That kind of difference adds up fast.  Costco chicken caesar salad?  1831-2600mg of sodium, depending on which website you believe. Check your labels.

Because fluid retention is now a life threatening issue for Lee, he is to weigh himself every day, first thing in the morning.  If his weight is up 3 pounds or more, we need to call the doctor.  At our appointment yesterday, Lee's weight was up 3.5 pounds. Even with all the work we do to limit sodium in Lee's diet (as well as restricting the amount of fluid intake,) his heart simply cannot eliminate all the fluid on its own.  The Milrinone is helping with that but sometimes more help is needed.  Lee takes a diuretic each day also. The doctor had him double his dose for the next 2 days to see if that will drain off the excesses.  

On a brighter note, the Milrinone is helping make Lee feel a bit better.  He has a little more energy and feels like walking more.  A few nights ago, I woke up around 3:30am, positive I was hearing a drill.  When I got up to check, I found Lee putting up a curtain rod ... ... ... 3:30AM!  What a life we live!  ha!  Lee says he just has to get it done when he has the energy, no matter what time it is.  

Living with Guido: in the previous post, I introduced Guido.  He's the little backpack that carries the CADD pump (that delivers the Milrinone) and the IV bag full of the medicine.  The home health nurse insisted that we name the backpack, since Lee cannot go anywhere (as in, no more than one step) without it.  So ... Guido, it is. When Lee is walking around, the backpack (aka Guido) is on his back or shoulder but when he sits, he slides it off and onto the seat beside him.  Lee and Guido have been at odds a few times this week.  Several times, I've heard Lee from the other room saying something like, "oops, sorry Guido"  or "DANG ... I forgot Guido again!"  Yesterday, when he got out of the car, Guido got left on the seat for a half a step.  Guido doesn't like that and generally falls to the floor, tugging on the IV port.  While Lee showers (after wrapping the PICC port in saran wrap & taping it up), Guido hangs on a hook on the curtain rod.  It's a little creepy sometimes ... 

Lee & Guido putting the doors on the outdoor cabinets.

Mayo Clinic appointment:  this week and apparently, at all of the appointments going forward, there WILL be a test.  We are tasked with memorizing the post transplant medications, post transplant diet regimen, health protocols, etc.  Discussions will revolve around support teams and plans for getting to the Mayo when we get the call for a heart. 

Questions seem to come to my mind many times during the day.  We are formulating a "phone tree" for notifying people when we get "THE" call.  I guess that now days, it's more of a text, Facebook, email tree. Our next door neighbors are on alert for us too.  What a huge blessing to have neighbors who love us and are willing to take care of the little things that come up when we have to suddenly leave.  The heart transplant team at the Mayo says, "live your lives as normally as you can."  HA!  I'm not sure what "normal" means anymore, but we trust in the Lord with all our hearts and He will get us through this.  

Lee's mom sent us this verse in a card she recently sent.  We love it:  

Jeremiah 30:17  "For I will restore health to you ...  declares the Lord."

*CADD - Computerized Ambulatory Drug Delivery

**PICC - Peripherally Inserted Central Catheter

Entering a New Era

"The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is thy faithfulness.  'The LORD is my portion,' says my soul, 'therefore I will hope in Him.'"   Lamentations 3:22 - 24

We are back home.  Home is a beautiful thing!  We arrived a little after 9pm last night; exhausted but thankful and happy to be together and home.  Lee was longing for his own bed and the relief from being roused at all hours of the day and night from an already fitful sleep to be weighed, have his vitals checked, PICC line flushed, and more. 

MONDAY:  This morning, Dr. S (one of 3 of our transplant doctors) was doing rounds in the hospital with his entourage that included a Fellow (a physician who enters a training program in a medical specialty after completing residency), a visiting doctor from another state, his P.A. (who manages patients while in hospital), our hospital RN, and our transplant coordinator (also an RN.)  Dr. S is our favorite transplant doctor: young, energetic, fully vested in the health and well-being of his patients and their caregivers.  He entered the room saying, "You could've just sent a postcard, you know. Did you really need to come to the hospital?"  That got a smile out of both of us.  

He told us that we could be released today, that Lee's vitals were stable and the IV drug, Milrinone was working.  Milrinone works by making the heart beat stronger and by relaxing certain blood vessels so that the amount of blood that is pumped from the heart is increased. This may help with symptoms of heart failure.  It is a short term solution to allow Lee to stay at home instead of in the hospital while waiting for a transplant.  The hope and prayer is that Lee can stay on this drug until a donor heart becomes available.  Eventually the Milrinone loses its efficacy.  At that point, if a heart is not available, the next step would be major (open heart) surgery to implant an LVAD (Left Ventricular Assist Device.)  The LVAD is a mechanical pump that is implanted inside a person's chest to help the weakened heart ventricle pump blood. In Lee's case, the LVAD surgery is more complicated because the doctors would first have to remove his mechanical aortic heart valve, replace it with a porcine (pig) valve, and THEN implant the LVAD. The doctors at the Mayo would really like to avoid that extra surgery.  We would too, obviously!

Status 1B    Dr. S went on to explain that Lee would now be a Status 1B (see previous post: THE LIST) on the heart transplant list.  He said, "Don't leave town"  and "tell your kids to come down here for Christmas."  This was the point when all the emotions and stress of the past few days (months/years?) decided to show up in the form of tears ... and a little sobbing.  I cried to the doctor (and all the other people in the room) that I had a "plane ticket for Christmas Day to fly to Seattle to be with MY baby girl who is having her first baby."  I can't even begin to describe how many ways my heart was being pulled at that moment.  Of COURSE I didn't want to leave Lee but I also did not want to miss experiencing those first precious moments of new life and the miracle of my child becoming a mother.

Dr. S was immediately by my side, patting my shoulder (while the Fellow doctor hurried over with a box of kleenex) and saying, "Oh, you must go for the birth of your grandchild.  Babies bring JOY and are a blessing.  You need some joy in your life right now.  It will be a wonderful thing for you.  You must go and not only that, you have my permission to feel NO GUILT. Do you need that stamped on your forehead?"  Well, of course, that led to even MORE blubbering and I believe I said that I probably WOULD need it stamped on my forehead.

When the room finally cleared, my dear, sweet husband looked at me and said, "It never even crossed my mind that you wouldn't go to Seattle to be with Katie and the baby."  Oh MY ... I AM blessed.

Being a Status 1B will require us to be "transport ready" at all times.  Phones on, backup plan in place, people who will know where we are at all times, staying within a 2 hour range of the Mayo Clinic.  When we receive "the call" we will need to be on our way to the Mayo Clinic (which is about 80 minutes away during perfect traffic conditions) within 15 minutes (Mayo protocol.)  So many things to think about:  a "go bag" always in the car, a full tank of gas at all times, a SHORT list of people to notify who will in turn, notify others, keeping Lee well and free from colds, flu, etc, trying not to worry about the financial impact, keep the Lord at the center of ALL of it.

How long?  Amazingly, here in our area, an approximated, average wait time as a Status 1B is 3 to 6 months.  It could be only weeks or it could be many more months.  That is both wonderful and frightening.  As we joyfully anticipate renewed vitality and health for Lee, we have the humbling, grateful, terrible knowledge that some other family will be making a sacrificial offering of their loved one's heart to that end.  Knowing that it will be a young person (40 years old or younger) is especially poignant.  We do not take lightly, the gift, the giver, or the responsibility of living a life honoring to the giver.  A friend recently said, "I've been shedding tears for all those like Lee who are waiting... for another to die so they may live. Such an amazing analogy to the lost sheep and the Good Shepard!"

So, next on the agenda will be to recruit a group of people who would be willing to help us.  We will need a support system, not only for the time I'm gone to Seattle but to be available to be "on call" for us.  There will be times when I need to be more than 10 or 15 minutes from home (and Lee).  We will need people who live close by to be willing to potentially drop everything and pick Lee up and head to the Mayo Clinic in north Phoenix where I will meet them.  We will need people willing to perhaps stay with Lee or take him somewhere and to be willing to just go to the Mayo at, truly, a moment's notice.  

We will need support after transplantation.  The first few months at home, after transplantation, Lee cannot be left alone in the home for even a few minutes.  We will need someone to stay with him while I take a walk (they tell me, I must remain healthy to be of best help to Lee) or go to the grocery store.  So many things are swimming around in my head at this moment. 

TUESDAY:   Lee was supposed to be released from the hospital on Monday, but coordinating insurance with home healthcare is harder than getting a heart transplant, it seems!  One of the nurses told me that their job included training us to be patient.  ha!  Believe me, we've had lots and lots of training in that area.  

After several false starts and many, many phone calls and discussions with case workers, social workers, home healthcare staff, hospital staff ...  the home healthcare nurse finally arrived at the hospital at 5pm.  There was a mound of paperwork to go over and sign, then the training on the newest addition to our life:  The CADD pump & PICC line care and procedures.  My nurse friends will know all about this stuff, but for me it is new and somewhat intimidating, but we're up for the task.  Lee is so good at the electronics part of this and is such a good, calm patient that is makes my job easy.  

Guido:  The nurse from the home healthcare provider, told us that we needed to name our new little on-board buddy:  The CADD pump & IV bag & tubing.  They provided a bag with shoulder strap.  It is to be with Lee at ALL times.  The nurse said that naming it, makes it more a part of the family.  In honor of our grandson, Noah's love of the CARS movies, we named our pack Guido.  Guido got a new carrying pack as soon as we arrived home.  My backpacking, "camel" bag is the perfect size and weight and Lee thinks he looks quite charming sporting Guido on his back. 

Papa Lee with Guido, his new, ALWAYS there, pal.  Notice the bruising on Lee's neck?

Home healthcare began this afternoon.  Here's just a few of the supplies:

Every day for the next week or so, a home healthcare nurse will come out to our house and monitor, instruct, and answer questions as we learn how to operate the new device.  I will need to flush the inactive PICC port (it has the monitor in it and is used for blood draws when needed) daily to prevent the port from clotting off.  The PICC port carrying the Milrinone, will be flushed and the iv bag and pump changed out once a week. We will be learning to do this task as well. It requires a completely, 100% sterile environment. Once home healthcare feels we are comfortable and proficient with the new device, they will only come once per week. The nurse will inspect all aspects of the port to make sure it's functioning optimally and will clean the PICC site and change the dressing.

All cleaned up and ready for a new dressing.

All secure and ready for action!

Onward:  Holding onto the promises of God:

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11

Quick Update

This will be just a brief note to update you all.  Lee is still in the hospital.  He looked much better last night.  The Milrinone drip is working to help with heart contractibility, correcting pressures, thereby helping flush the kidneys, liver, etc.  The catheters that were put into his neck (and guided down into his heart and chest cavity) were removed late yesterday afternoon.  They were replaced by a new PICC line in his upper arm.

One of our wonderful nurses removing the catheter from Lee's neck.

The new PICC line will go home with him.  It has two ports.  One port will be for a monitor, the other port will be for the medication, Milrinone.  Lee will wear some type of a pump to infuse the medication into his system 24/7.  We don't have the details on that yet.  We will have a lot to learn.  A home health nurse will be coming to our home once a week to change the dressing over the ports of the PICC and to check on Lee.  

Yesterday was exhausting for Lee.  He was feeling better once the catheter was out of his neck.  It was pretty uncomfortable and made it nearly impossible to sleep.  I've been reading all the texts and Facebook posts and emails many of you have been sending.  He is amazed at how many people are praying for him.  

THANK YOU ALL.

1 Corinthians 1:3
Grace and peace to you from God our Father and the Lord Jesus Christ. 

OH -- P.S. -- here's a funny story from yesterday.  One of the issues we've had since the very first diagnosis over 21 years ago is that Lee does not fit the picture of a person with heart issues.  His heart transplant/Heart Failure doctor with the UW Heart Transplant Program always greeted us with, "You are the healthiest LOOKING sick person I've ever known."  There's always a triple check of information to be sure the medical staff are looking at a person with a mechanical aortic valve, heart failure, with an ICD.

When we were in the Cath Lab recovery area, I overheard the nurse calling up to the cardiac floor about the new patient (Lee) being sent up to them.  She briefly described his diagnosis, history and why he had needed the Right Heart Cath; then said, "the patient walked into the procedure room on his own (many patients at this advanced stage cannot walk that far;) the staff thought he was the "family support person" for the patient because he looks so healthy!"   Yep.  That's Lee, but when they look at his numbers and readouts it becomes quickly apparent that he's much sicker than he looks.  I, for one, am glad he's so darned good looking!