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!

BLACK FRIDAY ... and a Right Heart Catheterization

At 9:30am, this morning, the day after Thanksgiving, BLACK FRIDAY, the Mayo Clinic called us.  The insurance approval had finally come in (2 weeks!) We were scheduled for check in and labs at 1pm and the procedure at 2pm.  Carol, one of our transplant nurses, said to come prepared to stay the night ...just in case.  Our reaction: really?  OK.  We really didn't think we would need to but we took along the necessary items and left them in the trunk of the car.

The Right Heart Cath:  a lead is inserted into a vein in the neck that sits right above the artery.  It's threaded down into the right heart chamber to measure pressures and fluid and I'm sure some other things as well.

After the procedure, the doctor came to tell us that Lee would be staying several nights in the hospital.  There was fluid on his heart and his pressures were not good.  This, along with Lee's increasing fatigue, cough, and changing blood chemistry was enough for the transplant doctors to order the IV Milrinone protocol (see previous post for further details).  

Too MANY tubes & wire!

That big yellow curved thing is the catheter in his neck to his heart.

Sometime in the next day or two, a PICC line will be placed in Lee's arm from which he will receive a constant infusion of Milrinone.  At this point in time, we're not exactly sure what that looks like but we do know that he will come home with it.  It will be an on-going, semi-permanent (until he gets a new heart or another invasive therapy) therapy.  Because of his health deterioration and the PICC line being placed, Lee is being moved to status 1B (see post "The List" for what this means).  We'll update with more information as we get and understand it.

For now, we ask for your prayers for peace, calmness, and for this therapy to work until a donor heart is available.  We also ask that you pray for the future donor and that donor's family.  It is a hard, difficult, heart wrenching thing to wait in anticipation of a heart and new life for Lee, knowing the grief that it will bring to others. 

Colossians 3:15 (NAS) And let the peace of Christ rule in your hearts, to which indeed you were called in one body; and be thankful.

VA Appointment & Mayo Clinic

Last Friday, we had an appointment with Cardiology at the VA.  Besides an EKG and blood work, he also had his ICD "interrogated".  That always sounds scary to me, but it simply means that a technician specializing in reading pacemakers and defibrillators places a device over Lee's ICD unit, runs some testing, and reads the results.  The ICD unit keeps track of everything that's been happening to Lee's heart since the last interrogation.  It's pretty cool!  It can read when there was a fluid overload, if there have been any arrhythmia, tachycardia, or incidents of the defibrillator charging up.  It noted the extreme fluid build up in August and September.

The rest of the appointment involved reviewing what had happened over the summer, the hospitalization at the Mayo Clinic, reviewing Lee's medications, the current labs, a physical exam, and finally a discussion about how Lee is feeling. We left with a copy of labs and reports to send to the Mayo Clinic for their review and input.

The first couple of weeks after the September hospitalization, Lee was feeling pretty good and was walking for exercise with a fair amount of ease.  His goal is to walk about a mile round trip, which he can increase as his body allows.  With CHF (congestive heart failure), breathing can become labored, making it difficult to exert oneself.  Part of Lee's daily (doctor ordered) routine is to weigh himself every day. If he is up more than two pounds, he needs to increase his diuretic (Lasix) that day.  This is extremely important to keep his heart from holding onto excess fluid. A low sodium diet is also par for the course.  Lee has been very, very faithful to this regimen (Praise the Lord!). 

The Mayo:

Today, Monday, November 18th, one of our Heart Transplant Team nurses called to review everything with us.  Some of Lee's labs indicate some changes and she wanted to know how Lee was feeling.  Here's what we told her:  he has not been feeling well; his coughing has increased; he is becoming more and more easily fatigued; each time he eats a meal, whether large or small, he must lay down and sleep for an hour or two (Lee calls this "processing the food").  Medically this is another symptom of advancing heart failure.  With CHF, blood flow is weak.  Digestion takes a lot of blood.  When the blood is diverted to digestion, the other organs (heart, brain, kidneys, etc) are shorted, causing fatigue.

Heather (our transplant nurse) reviewed the labs, tests and physical symptoms with the Mayo Clinic doctor.  The decision was made that a "Right Heart Catheterization" needed to be performed.  Our Medicare Advantage insurance required pre-authorization for this procedure, so we wait ... AND wait ....  aaaaand wait ...

Romans 5:3 "... but we also exhult in our tribulations, knowing that tribulations bring about perseverance."

A Few Weeks of Calm; Then the Storm

In July, our heart transplant team at the Mayo Clinic agreed that this was a good time for us to travel from our home in Arizona, to our "home" in the Pacific Northwest.   Most of our family lives in the Puget Sound area of Washington State.  Our home away from home is a 25 year old motorhome, parked on some good friends' property where we have lived for 5 or 6 months of the year for the past several years. This required Lee to be moved to inactive (Status 7) on the Transplant List.  Lee's health was stable enough for the car trip, and we wanted to see family and take care of some tasks while Lee was still able.

This trip north would be to sell our beloved Safari.  The maintenance was getting to be way too much for Lee and traveling was much too difficult for the foreseeable future.  We needed to sort through all the tools, belongings, and  memorabilia still stored in the motorhome and our small storage trailer.  It was six weeks of exhausting work for Lee.  Getting the 36 foot beast cleaned (inside and out) was my job, but Lee needed to examine the rig for any mechanical, electrical, or plumbing issues before we listed her for sale.  Thankfully we found no major issues, but lots of tweaking to be done. In the end, The Good Lord sold her to an amazing young man with a dream (that's for another story.)  We were delighted to sell her to someone with energy to spare and pray that the motorhome provides him years of service, as it did for us and her previous owner.

Besides tending to the monumental task of selling the motorhome, we were busy enjoying our children, grandchildren, grandchild-to-be, sisters, brothers, nieces, nephews and a wonderful assortment of grand nieces and nephews.  All of this wonderful activity took it's toll on Lee's health.  He had been suffering from insomnia and not eating as healthfully as he does in Arizona in our quieter lifestyle. I began to worry about how much more easily he tired.  He coughed a bit more, his color was off.  As soon as the motorhome sold (which it did so quickly, praise God!) we cut our time short, said our emotional goodbyes to friends and family, and headed south to Arizona.  We had our Ford Explorer loaded to the gills and were pulling a U-Haul trailer stuffed to capacity with the rest of our treasures.

As we traveled, Lee began to get more and more uncomfortable.  He had no appetite and when he did eat, he felt very bloated and had pressure in his belly.  We were attributing all of this to sitting for long periods in the car and tried to help with more frequent stops, mild foods and some ginger ale. Our last stop was in St. George, UT.  Lee was restlessly sleeping/resting throughout the day, but always in the sitting position.  I asked him to go lie down in the bedroom, in a comfortable bed, so he could get better rest.  It was then that he was able to articulate, "when I lay down, I feel like I'm drowning."  WELL!  The alarm just went off in my head and I realized that this was a heart failure symptom.  He needed to take more diuretic (Lasix) to take the fluid off his heart, and we needed to get home and to the Mayo Clinic ASAP!

The next morning we made a beeline for home.  Lee had gotten to the point of being terribly uncomfortable and it was pretty scary.  The thought of going to a hospital somewhere far from home was overwhelming for both of us.  We decided the best course of action would be for Lee to take more Lasix (which would mean frequent stopping, if you know what I mean) and we would pray our way home.  Drive and pray.  Pray and drive.  My plan was to go to a hospital in Las Vegas if Lee did not improve in that 90 minute drive.  By the time we hit Las Vegas, Lee was visibly more comfortable, so I prayed the Lord would get us to Kingman, AZ next.  When we reached Kingman, Lee was even better ... not GOOD, but definitely better.  This is how we traveled all the way home that last day.  The Lord calmed my fears as the miles were put behind us.

We arrived home on a Thursday night.  The next morning, Friday, September 13th, we called the Mayo Clinic and were told to come in right away.  After checking Lee out, they admitted him to the Mayo Hospital with heart failure and near kidney failure.  The plan was to put him on an IV medication, Milrinone.  This medication helps the heart to contract a little harder (Lee's heart doesn't contract well at all now), thereby forcing blood through his system, helping flush his kidneys and get him back to his baseline.  It can only be given intravenously.  

While in the hospital, Lee was placed as a Status 1B (see previous post, THE LIST.)  After three days in the hospital, the Milrinone (along with large doses of the diuretic) worked and nine... NINE pounds of fluid was drained from Lee.  He felt MUCH better.  The pressure was relieved and Lee was back to a Status 2 on the Heart Transplant List.

The doctors at the Mayo released Lee from the hospital but let us know that if Lee's system was to become overloaded with fluid again, it would be time to have a semi-permanent PICC line placed in his arm.  The Milrinone would then be administered intravenously all the time.  It would also mean that Lee would be listed as a Status 1B.


Proverbs 3:5-6  "Trust in the Lord with all your heart, and do not lean on your own understanding.  In all your ways acknowledge Him, and He will make straight your paths."

Lee is LISTED!!!

This is a GOOD day.  Lee has been officially placed on the Heart Transplant List with the Mayo Clinic in Phoenix.

Today we met with one of our transplant coordinators (an RN who specializes in heart and kidney transplantation.)  We reviewed the procedures, requirements and expectations.  Lee will be listed as STATUS 2.  Please see the previous post, "THE LIST" for an explanation of what that means.

We will be followed at the Mayo Clinic and the Phoenix VA Cardiologist.  For the most part, we will alternate between the two and be seen approximately every 6 weeks.  It is a long road and we will be keeping close to home in Buckeye, AZ.  We have amazing next door neighbors who keep an eye on us both.  We have a new church home & have found some new, supportive friends there too.  We are blessed.

Please keep us in your prayers.  We appreciate them more than we can say.

2 Corinthians 1:11 "and you are helping us by praying for us."


ORGAN DONATION

We hope all of you reading this will consider organ donation.  In the previous post, THE LIST, there is quite a bit of information on how the procedure works.  Nearly everyone can be an organ donor.  Even LEE, is an organ donor.  Of course, he couldn't donate his heart, but his other organs, tissue, etc. can be donated.  

Of note:  heart donation can only come from someone 40 years old or younger (with some exceptions, up to 45 years old)  It is important to encourage our younger generation to be organ donors.  Other organs do not have the same age restrictions.  

In Arizona, please register online at:  https://www.azdonorregistry.org/

In Washington and Oregon:  http://www.donatelifenw.org/content/donor-registry

The VA: the good, the bad, and the ugly.

Lee served in the US Air Force during the Viet Nam era.  He has received his primary health care through the Veteran's Administration since early 2003.  For the most part, the care has been very, very good.  The worst part of dealing with a big agency like the VA is the maze of paperwork and people to work through to get into see a doctor.  As a general rule, once we get into the doctor, the care is excellent.  We've been to the VA facilities in Seattle, Loma Linda, Tucson and Phoenix.  

On February 15, the Mayo Clinic doctors accepted Lee as a heart transplant patient.  We had only 2 requirements to complete prior to officially being listed.  

1)  Have a dental exam & evaluation confirming there is no infection of the mouth, teeth or gums.  (We found a local dentist in Buckeye that we would HIGHLY recommend to anyone needing dental care.  They took care of Lee right away and were extremely helpful, caring, AND QUICK to get the required documentation to the Mayo Clinic.)

2)  Get the Shingles vaccine.  Once the shingles vaccine was given, we would be required to wait 30 days before Lee could be listed on the transplant list because the vaccine is a live virus.

The BAD:  the primary care doctor knew ahead of time that this would be a requirement.  As soon as we were accepted, we called and left messages (multiple times) with no call backs.  The weekend hit, so we emailed the doctor (a new system with the VA & it works quite well SOME of the time.)  

The UGLY:  a week later and after a trip down to the VA (35 miles from home) we STILL had not gotten an appointment for the shot.  There were more phone calls & FINALLY we had a date set (but only after requesting help from the patient advocate.)  It was a full 2 weeks before that little task was completed.  A two week delay for being listed.  SAD .... and quite frustrating.

The GOOD:  In the midst of all of this craziness, Lee's ICD needed to be replaced.  There is a battery life on all pacemakers and defibrillators & his was in need of replacement.  We want to make sure there's enough "juice" left in the defibrillator to ZAP him if he needs it!  We had previously scheduled this day surgery & it was performed on March 25 in the Cath Lab at the VA in Phoenix.  The doctor was amazing.  He is also a surgeon at St. Luke's Medical Center in Phoenix and highly regarded.  He completed the surgery in under an hour and Lee was home by 7pm.  We have had no complications or problems (other than the expected post-op pain & recovery) & give high praise to the entire team.  From the pre-op nurses, to the anesthesiologist who sang during surgery, to the surgeon, to our wonderful post-op nurse:  ALL did an amazing job.  THANK YOU!
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Surgery notes:

Lee is on anti-coagulants because of his mechanical aortic valve.  This makes even the simplest of surgeries, more complex.  To make matters even MORE exciting, Lee doesn't follow the "norm" when it comes to drawing down or ramping up his anti-coagulant medication.  He can't be without an anti-coagulant or his blood could form a clot in the mechanical valve (and that would be very, very bad ... as in deadly.)  The prescribed protocol is to stop the oral medication about 4 days before a surgery (or certain medical procedures)  The patient then injects himself in the belly, twice daily, with a short acting (12 hours) anti-coagulant (Lovanox) up until the day of surgery.  After the surgery, the patient begins the oral medication again along WITH the Lovanox injections in the belly for another 4 or 5 days.  

Lee is not "normal."  Ha!  My kids will love that!  

His chemistry requires him to begin his injections 6 or 7 days ahead and continue them for 7 or 8 days post op.  He has had to cancel and reschedule 2 surgeries because of problems with getting the correct coagulation combination.  It's not a fun process.  His poor belly looks like it's been used as a punching bag.  He's black and blue and yellow and purple.  I am always amazed at how calmly and patiently he goes through this process.  He is made of tough stuff, he is!

When the surgeon (let's call him Dr. H) came out after the procedure, he told me that everything went really well, Lee slept through the whole thing, and that there were no surprises.  Hallelujah!!

When LEE came out of surgery and we went to his room for a little R & R, he told me he was awake during the entire thing.  He said his eyes were closed & he was relaxed but he heard the doctor (I think it was the anesthesiologist) singing to the oldies that were playing in the O.R.  He heard the nurses talking back and forth and the most interesting thing (to HIM --- I was horrified) was listening to Dr. H as he examined the wires (leads) and plugged in the new device.  One of the leads was too short so Dr. H had to put in a new, longer one.  Lee could hear the crimping tool being applied.  He also felt the pressure and scraping sounds of the scar tissue being removed in the "pocket" in his chest where the new device would be implanted.  YOW!! 

The very worst part of the recovery was the "pressure bandage" he was required to wear for 48 hours.  I just had to put a picture in to show how big this thing was.  The purpose was to apply pressure to the "wound" to prevent excessive bleeding or a hematoma.  Because of the aforementioned coagulation issues, this was an "ounce of prevention."  Just imagine:  a freshly scraped up muscle and incision with a 2 inch block of rigid styrofoam being pressed down into that wound ... for 48 hours.  Once Lee was free from that, he stopped the pain medications and only had to take Ibuprofen.   

He looks pretty happy, but that's only because I was about to peel off that pressure bandage.  Then, after a pain pill, he felt MUCH better.

ONWARD ...

Psalm 40:1  "I waited patiently for the LORD; He turned to me and heard my cry."

THE LIST

February 15, 2013

After 2 weeks of testing & evaluation, Lee has been accepted as a heart transplant candidate with the Mayo Clinic in Phoenix and will be listed as a Status 2 on the heart transplant waiting list.  There are just a few minor hurdles left before Lee is actually placed on the list.  A visit to the dentist is needed to confirm that there are no infections in the mouth.   Several vaccinations:  Hep A, Hep B and the Shingles vaccination need to be completed.  The vaccinations are important because after transplantation, the patient has no immune system whatsoever.  We also need the all important insurance approval, which is in the works.  In about 2 weeks, Lee will actually be placed on the wait list.

Our transplant nurse said, "You passed GO!"

We were so thankful to have Lee's brother, Mark (Uncle Mark!) accompany us for the consultation with our transplant cardiologist, Dr. Steidley.   Mark's background in reporting and investigating for news stories was put to good use as he took several pages of notes (while my mind went strangely blank) and asked some great questions for us.  Having that extra set of eyes and ears was an amazing blessing.  It was helpful not only at the time of the appointment, but in our "debriefing" on the ride home and throughout the evening discussions.  THANK YOU MARK!

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UNOS --- United Network of Organ Sharing

This is the list on which Lee must be placed to receive a donor heart.  UNOS is a private, nonprofit scientific and educational organization.  It assists the transplant community in allocating donated organs and managing transplant data.  http://unos.org/  Their website is an amazing resource for understanding the wait list, transplantation, and statistics. 

OPTN --- Organ Procurement & Transplantation Network

The OPTN is a unique public-private partnership that links all of the professionals involved in the donation and transplantation system. The primary goals of the OPTN are to:

• increase the effectiveness and efficiency of organ sharing and equity in the national system of organ allocation, and to
• increase the supply of donated organs available for transplantation.

UNOS administers the OPTN under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services. 
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Wait list status (as establish by UNOS)

Status 1A:  these candidates are the most critically ill.  Many will be in the hospital at this time.  Most will have some type of device (artificial heart/LVAD) implanted already.  Qualification for Status 1A must be recertified every 14 days by the transplant cardiologist in order to stay on the list at that status.

Status 1B:  these candidates are second in medical fragility & typically will have an implanted left and/or right ventricular assist device and/or are reliant on a continuous infusion of IV medications

Status 2:  these candidates don't meet the criteria for status 1a or 1b at the current time.  These candidates are medically fragile but are being kept stable with lifestyle choices (diet & exercise as prescribed), medications (lots and lots of medications) and assistance devices (ICD, pacemaker, etc.)

Dr. Steidley gave us some statistics for the Status 2 waitlist.  In a year's time:

• 1 of 5 people will get worse & move to the 1B list
• 1 of 5 people will get significantly worst and move to the 1A list
• 2 of 5 people will stay the same
• 1 of 5 people get better and are moved from the list

Status 7:  candidates who have temporarily moved off the list.  This can be because there has been some medical change which renders the candidate unsuitable for organ transplant at this moment or in the case of the person desiring (and is medically fit) to travel out of the transplant hospital area.  For us, we may mean choosing to travel to the Pacific NW to see family & friends for a month or so.  Grandchildren are God's medicine   for the soul, are they not?
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How does "The List" work?

We were amazed by the organization, fairness, and complexity of the organ donation and recipient process.  This will be my attempt at simplifying the description of the process.

We are in REGION 5 of the OPTN's 11 regions in the USA.  Region 5 includes Arizona, Southern California, Nevada, Utah and New Mexico.

When a donor heart becomes available, the matching information (blood type, body size) is input to the system. 

If the donor heart is in the State of Arizona, the call/search goes out in the following order:
Status 1A (IN ARIZONA) -- if no suitable matches, then
Status 1B (IN ARIZONA) -- if no suitable matches, then

Status 1A (within 500 miles of donor heart) -- if no suitable matches, then
Status 1B (within 500 miles of donor heart) -- if no suitable matches, then

STATUS 2 (IN ARIZONA) -- if no suitable matches, then

Repeat the process/order to the entire Region 5 (Southern CA, NV, NM, UT)
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Because Lee has the most common blood type (A), there are more donor hearts, but also more recipient candidates.  Lee is of larger than average stature (6'3, 200 lbs), therefore he requires a larger than average heart.  A smaller person's body can accept and use a larger heart, but the opposite is not true.  A man of Lee's size cannot function with an average or smaller sized heart.  The conclusion is that as long as he is listed as a Status 2, it is highly unlikely that a heart will become available to him.  We DO believe in miracles.  Our God is big enough to handle this situation.  We just don't know what His will is in this part of our lives.  We put our faith and hope in Him and trust Him to take care of the details.  

In the meantime, Lee has been advised to stay as healthy & active as possible.  A 30 minute walk each day is a good goal.  Lee currently walks every other day, but will aim for a little more.  Golf is a GOOD thing, but no weight-lifting.  HA!  CHF (congestive heart failure) is self-limiting.  It's pretty much impossible to do more than you should. 

And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.  Romans 5:5 -----------------------------------------------------------------------------------------------------

The Mayo Clinic, Days 7 & 8 February 2013

Day Seven, Monday February 11

On Friday afternoon we received a call from a scheduler from The Mayo Clinic.  It seems that our doctor would like Lee to repeat the exercise stress test.  YAY!  (There's no good way to express sarcasm so I'll just tell you ... that was sarcasm.)  The commute, which was in the middle of rush hour, was amazingly smooth.  We gave ourselves 90 minutes to travel and we reached our destination in just one hour!  That was exciting.  We have to take our excitement where we can find it!

9:00am --  Mayo Clinic Hospital -- CARDIOLOGY  Exercise VO2 Max

The pre-appointment instructions say to arrive rested.  OK.  Done.  When Lee got into the lab, taking his blood pressure is the first step.  His initial reading:  84/59   The nurse/technician said she couldn't conduct the test with his bp that low (hmmmm  Lee's been living with this bp for a long time)  Lee told her to try the other arm but she still felt it was necessary to call for the doctor.   Fortunately, our transplant doctor was right next door attending another procedure so he was able to come right in.  Lee's bp was taken on the other arm with a reading of 94/70.  With the doctor in attendance for the testing, Lee was able to hang in there for 10 minutes or so.  This time, the treadmill was started a little slower and gradually increased.  

Another test is now in the records.  Lee was exhausted and we headed straight back home.  He had a good nap but still felt the effects of the exertion for the rest of the evening.
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Anti-coagulation background:   The VA is where Lee normally has all of his medical care, including the monthly monitoring of his INR, because he is on the anti-coagulant, warfarin (Coumadin.)   The goal with warfarin therapy is to maintain a balance between preventing clots (Lee has A-fib & a mechanical aortic valve, both of which cause blood clots) and causing excessive bleeding.  The INR is a lab test that measures the time it takes the blood to clot.  A normal INR would be around 1.0    Lee's doctors like to see his INR between 2.5 and 3.5

When we got home from the exercise stress test, we got a call from the VA about the labs that were taken on Friday.  Lee's INR was unusually high (for unknown reasons.)  His reading was 4.1 and they were concerned.  The instructions were to skip one dose and come back in for re-testing in 10 days.

Around 4:30pm, a Mayo Clinic nurse called.  She was calling to confirm the heart cath procedure tomorrow and to review the protocol.  She asked if Lee was taking his Warfarin.   Well, of course he was.  It seems that someone had forgotten to tell us that he should have stopped taking it for a couple of days prior to this procedure.  Couple this fact with his high INR & we were thinking that the procedure would have to be postponed.  I should insert here that twice before, Lee has had to postpone a surgery because his INR was too high (excessive bleeding during surgery is not a good thing.)  The nurse told him to eat as much Vitamin K (a natural blood clotting agent) as he could tonight and they would check his INR in the morning.  We enjoyed a couple of pounds of Vitamin K rich spinach for dinner, along with MANY cups of green tea.

Day Eight

 7:30am --  Mayo Clinic Hospital -- Registration
We are both getting a little weary of the long commute in the dark.  

7:45am --  Mayo Clinic Hospital -- LAB
Lee was not too convinced that his INR would be low enough for this procedure but away he went to have his blood drawn anyway.

9:00am --  Mayo Clinic Hospital --  Cardiology Cath Lab
As suspected, Lee's INR was high -- 4.2   Lee was pretty well convinced that they could not do the procedure.  The doctor who was doing the procedure said, "I think we can still do this."  I am SO glad I was not in the room when he said that .... you "THINK???"   Oy!   This test is essential for the determination of the health of the heart and therefore an essential part of the heart transplant evaluation.   After some consideration and discussion, the procedure was performed without incident.

The transplant doctor wanted to see both the left and right sides (or INsides) of Lee's heart.  The heart catheterization http://www.mayoclinic.com/health/cardiac-catheterization/MY00218/DSECTION=what-you-can-expect was done through 2 different entry points.  The right of his heart side was accessed  through an entry into the artery of his right wrist.  The left side was done through an entry into the artery in the neck.  Lee said the procedure was quite uncomfortable and one he hopes will not need to be repeated anytime soon (or ever.)  Because of the danger of lack of clotting, he had to lay still for a number of hours after the procedure.  He was sure glad to be done and on his way back home.  As for me, I was a bit anxious because of the high INR but Lee behaved himself and didn't lift anything heavier than a fork for the rest of the night.  There was no extra bleeding or problems.  Praise the LORD!


I Peter 5:7  "cast all your cares on Him, for He cares for you."