Thanksgiving

Let's all pretend that I actually posted this on Thanksgiving, as intended.


I am THANKFUL for a family who loves me:  family who loves me enough to bless me with random calls, texts, emails, cards, pictures, and remembrances.  This family has known grief well, so responds in ways that I'm sure must have helped them in the past too.  

I am THANKFUL for friends who love me like family: friends who check on me, include me in their daily lives, and keep asking me to join them even when I say "no thank you, I can't just yet."

I am THANKFUL for those who understand that I don't know how to reach out for help and comfort yet, so THEY reach out.  It's very hard for me to initiate contact.  I don't know why.  It just is and I am thankful, very thankful for those who understand that and keep me going.

I am THANKFUL for a God who loves me and comforts me through His Word and through His presence as I walk this path.   He gave me a beautiful sunrise this morning, just to remind me that "weeping may last through the night, but joy comes with the morning" (Psalm 30:5)  He knows me.  He knows that I am a "morning person" and that I would need to see this today.

This morning's sunrise as I walked & talked with Jesus.

I am THANKFUL for nearly 42 years with my wonderful husband and best friend.  I am THANKFUL that he no longer struggles to breathe, or labors just to get up in the morning. I miss Lee sorely, but I know that I will see him again and that he is whole now.  

"Enter His gates with Thanksgiving; go into His courts with praise.  Give thanks to Him and praise His name."  Psalm 100:4

Lee's Washington Memorial Service Info

Lee's memorial service will be held on Saturday, July 12th at 11am at LifeWay Church - 5015 SW Dash Point Road, Federal Way, WA.  The service will be officiated by Pastor Don Turner and our brother-in-law, Pastor Lonnie Arnold.

We would be honored to have you join us in remembering Lee's life.


From his cousin, Shannon:

The adorable man with the mischievous, smiling Irish eyes is my cousin Lee Hendricks. We lost him on Saturday afternoon after a long battle with heart related conditions; he had been at the Mayo Clinic waiting for a heart. The tenacity and faith was humbling, but he was so much more.

He was a man of epic dreams who made you imagine the impossible. The testament to his role as a father is seen in his fabulous kids Seth, Sarah and Katie, and his role as a husband to his wonderful wife, Peg Hendricks. 

I feel privileged and thankful for the time that he was in my circle. Time to spill some fine Irish whiskey for my sweet cousin.

Lee is with Jesus

2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.

After fighting the good fight, Lee went to be with Jesus on June 28th at 2:45pm.  Tonight we experience utter heartbreak and simultaneous joy for we know that while we grieve his death he is already with Jesus and could say "I have fought the good fight, I have finished the race, I have kept the faith." and heard in return "Well done, good and faithful servant...Enter into the joy of your master" Amen and amen. 

His passing was peaceful, and we know that he finally received his much-anticipated new heart!  And we have great joy in knowing that this heart will never wear out.  He's rejoicing with Jesus, hugging on Lonnie Jr. and Gabbie and those that got there before him.  

There will be a memorial service in Buckeye, AZ this Wednesday, July 2nd at 2:00pm.  It will be held at Grace Fellowship Church, 1300 N Miller Rd, Buckeye. 

A memorial service in the Pacific Northwest is in the works, and will likely be scheduled for mid-July.  Details to follow.  

photo credit: Mark Hendricks

The doctor told his nurse (who told Seth) that they were to pull out every possible treatment because this man is special.  It is healing to our family to know that they exhausted all options in treating Lee.  The nurses were so attentive, constantly adjusting his medications and equipment, never leaving his side (literally -- they left the room to use the restroom -- and were never gone more than 5 minutes), and called his doctor if there was more than a minor fluctuation.  His doctors did everything they could to restore his health to the point that he could return to The List.  Ultimately, God saw fit, in His goodness, to take him home, and we know that Lee was ready.  

We credit this attention above and beyond attention to Lee's unwavering faith.  He shared his "win-win" philosophy with anyone who would listen.  As he would say...if I get a new heart, I win.  If I'm with Jesus, I win.  He truly lived out his faith and we know that he planted and watered many seeds for the Gospel.

Doing what he loved

He was always upbeat.  He rarely let his condition keep him down, despite being unable to do so much that he loved.  I don't believe many fully realized how sick he was, and how he longed for heaven and complete healing.  Still, like Paul, he fought on for us.  

For to me to live is Christ, and to die is gain.  If I am to live in the flesh, that means fruitful labor for me. Yet which I shall choose I cannot tell.  I am hard pressed between the two. My desire is to depart and be with Christ, for that is far better.  But to remain in the flesh is more necessary on your account.  Convinced of this, I know that I will remain and continue with you all, for your progress and joy in the faith, so that in me you may have ample cause to glory in Christ Jesus...(Philippians 1:21-26)

His doctors, until the end, commented on how well he looked and they would have to read his chart and vitals to recognize how sick he was.  Unless you were with him daily, and knew the man he used to be, the active, helpful, craftsman, sports-loving guy he wanted to be, you wouldn't have seen how sick he really was.  

We love him and will miss him dearly.

Thank you to all of you who have prayed with us -- we've truly experienced the comfort and peace that comes only from God and is communicated through His body.

 
This comes from his brother-in-law, Lonnie Arnold on Lee's passing: 

Lee lived a life of a humble Christian man. He was a devoted follower of Christ, a loving husband and father. He was affectionately known as Papa Lee by all the Arnold children, and he was a second father to them all. My life has been incredibly blessed by the Lord to have Lee alongside me in my Christian journey. He provided endless encouragement as a Brother in the Lord, and a true fellow father in parenting our children. His godly wisdom was always was filled with spiritual insight and genuine love for me and my family. He walked and talked with me through both difficult and delightful days. I will miss my dear brother, brother-in-law, and irreplaceable friend. I rejoice that Lee is with Jesus. He has arrived at the goal of the Christian life. His hope has been fulfilled, and the joy of being in the presence of the Lord infinitely exceeds any joy of this fallen world. Oh yes, we miss you Lee. The temporary separation produces deep grief because of the depth of love we experienced with you for years. Yet at the same time, I bless the Lord for the gift of your life in Jesus, which based on the unbreakable promise of God, we will share many more conversations in eternity, filled with praise and glory. I will miss you my brother. You have been one of the richest gifts of God in my life!!!

But our citizenship is in heaven, and from it we await a Savior, the Lord Jesus Christ, ²¹ who will transform our lowly body to be like his glorious body, by the power that enables him even to subject all things to himself. Philippians 3:20-21

Lee in the ICU -- an update

We feel SO very blessed having our names lifted up in prayer by so many loving, caring people. Our church family, friends and neighbors here in Buckeye are supporting us, loving on us and are at the ready to do whatever is needed to help. Family and friends across the nation are letting me know they are sending love, prayers and offers to help in any way. I am grateful and humbled beyond expression. I am thankful to a loving God who is with us every step of the way.

LEE ... Yesterday afternoon doctors did CT scans from head to toe, trying to locate the source of the infection that has caused his sepsis. They have also performed other tests & procedures throughout the day, including intubation (putting him on a ventilator). They found pneumonia in the lower left lobe of his lungs, a pulmonary embolism in his right lung, and the echocardiogram showed an extreme deterioration of his left ventricle. His fever & chills continue. His white blood count continues to climb, regardless of "all the antibiotics known to man" (per Dr Steidley). The team at The Mayo Clinic is amazing and are 100% dedicated to caring for Lee and are doing everything possible to get him well enough to get back on the transplant list.

As of 4am, Lee is sedated, on the ventilator, and resting calmly. His vitals are steady and he remains in critical condition. As we prepare for the worst (for US, not for him  ) we continue to hope for the best (infection conquered and returned to The List) and pray to be granted a miracle. Our faith is strong, our God is mighty!

We humbly ask you to continue to pray for us.

Lee is listed as 1-A on the heart transplant list ...

Things are pretty crazy for us right now, so the most recent information is on our daughter, Katie's blog.  I'll update here soon,  but in the meantime, please go to:  http://mcpheeandme.blogspot.com/ 

Mayo Clinic May 21 and more ...

The Mayo Clinic appointment this day was pretty unremarkable.  Lee is stable (a very good thing) and infection free.  His labs are good in that they are unchanged (they won't get any better, but it's good that they are not worse.)  Fatigue is the number 1 issue as far as symptoms go & we look forward to a new heart for Lee and the day when Lee can be worn out from activity such as playing with grandkids, golfing, hiking, or something strenuous. Fatigue from severe heart failure comes from getting out of bed or walking to the mailbox or from nothing discernible.  The Mayo has done 9 heart transplants so far this year. Our prayers are for both the recipients and the donor families.

SO ... while we wait:  

Lest you think we are just sitting around, looking at the clock and/or calendar, we decided to post some pictures of some of the things we've been doing.  Most of the projects have been done between the late Fall to the present and were finished over long periods of time as health and stamina permit. We try to keep busy!

This old oak chest has been around the family for many, many years.  My sister, Lorna, took pity on my lack of furniture and gave it to me.  It was in pretty bad shape, but it was old (which I loved) and oak (which is very forgiving.)  There's not a before picture, but here is the finished product.

A while back, we bought an old (100 yrs+) oak table and chair set from The ReStore (Habitat for Humanity's thrift store.)  The chairs were in pretty bad shape, as all the glue had dried up and every joint was loose.  Lee painstakingly took apart each chair, cleaned up the wood with a hand-scraper, then re-glued every joint.  It took him 8 - 10 hours per chair.  They came out beautifully though & now I just need to oil and polish them.

BEFORE

Another great thrift store find (Stardust Industries, a non-profit that encourages reuse) was an old kitchen cabinet.  I was excited to find one that was solid wood and set about sanding and repairing it.  Lee made a sturdy frame to sit the cabinet on and installed casters to wheel my "outdoor kitchen" around. We salvaged and painted the handles, painted the cabinets and drawers inside and out with outdoor house paint.  With a little help from our friends, we finished the countertop with the left over tile from the floor in the house.  I LOVE having an outdoor kitchen counter.

In March, we had a wonderful visit from our daughter, Katie and her husband, Isaac AND baby Lucy. It was hard to let them go back home without us!

Nana Heaven!

Papa love his Lucy!

Date night for the McPhees, sans baby.  We HAD to babysit!

Hiking with Lucy.

Uncle Seth got in on the action too.

We've had other visitors too although we didn't get pictures of all of them.  

Brother Mark with Seth.

Cousin Carole with Peg

Brother Paul & sis-in-law Lu with Lee (and Guido)

Lee built this awesome lattice for our yard.  We planted a sweet smelling jasmine vine to grow up on it. It smells heavenly.

We enjoy filling our tiny backyard with colorful plants

and watching a caterpillar

Caterpillar turning into cocoon.

(put into a mason jar & stored behind the coffee maker) turn into a butterfly.

I heard a fluttering noise one morning ...

Sewing has been blessed release for me.  We have many nieces and nephews and now grand nieces and nephews (thanks mostly to my sister, Lorna!) I sewed up an apron/bib for each of the grand nieces & nephews to have at Grammie's house.

For Noah & Ava's (our grands) birthdays in May, they requested costumes.  Noah chose Robin Hood & Ava chose Elsa from the movie, Frozen.  SUCH fun to sew them up for them and I think they liked them!  

Everyday, I am thankful for modern technology that allows us to keep in touch with family and friends so far away.  Baby Lucy is growing SO fast, but her mama is so good to keep us feeling close with nearly daily pictures and videos.  Ava and Noah are getting so grown up but FaceTiming with them is an AWESOME way for us to keep in touch with them.  It helps keep us sane.  We love them so.  This last picture is just a glimpse of part of our big family.  This was a gathering back home for some May birthdays and one of the grand nieces requested the family do the Hokey Pokey.  I LOVE MY FAMILY ... each and every one of them.

Oh give thanks to the Lord, for He is good, for His steadfast love endures forever.  Psalm 107:1

PLEASE take a few minutes to go to the link below and read the article.  I could never express the process, feelings, stress, gratitude as well as is done in this read.  There is much good information here and I encourage you to pass along the information to others.  It is another good reminder also to please consider being an organ donor and encourage others to do the same.  A heart donor must be 45 years of age or LESS.

A good heart: An organ transplant and a hidden message www.azcentral.com

Prayers are answered. PTL!

This is life on the Heart Transplant Waiting List.  We have our ups, our downs, our winding paths of uncertainties.  Today, Lee was scheduled for a right heart catheterization to measure the pressures inside his heart.  The procedure is not without risk and we were told to expect to spend at least one night in the hospital & very possibly much longer.

Because of the prayers of many, the procedure went flawlessly, and with the best result we could ask for.  The doctor said his pressures are "not good,"  have worsened since the last cath (in December) but are still in the "ok to go home" range.  Lee and Guido (see 12/04/2013 post) are still together and will stay on milrinone for now. Lee is feeling fairly well, just very tired. 

Thank you all so much for your thoughts, texts, emails, cards, calls, visits, love, and most all, prayers.  They mean so very much to us.  Please continue to pray for us, and for a new heart for Lee soon.

Praise the name of the Lord; for His name alone is excellent. Psalm 148:13

April 22, 2014 - another side trip on the journey

For the past month or so, Lee has not been feeling very well.  It's subtle at first.  A little less energy in the afternoon, sleeping longer in the morning, trouble focussing. My radar goes up & I begin to check his blood pressure more often, ask him more questions about how he's feeling, watching his appetite, listening when he's sleeping, waiting for him to wake up.  Two weeks ago, at the Mayo appointment, we mention that he seems to be more lethargic but at that point, we weren't sure if this is the "new normal" ("normal" changes for us on a regular basis) or perhaps just residual weakness from the bacterial infection & treatment in March. 

Shortly after the last Mayo appointment, the symptoms became a little less subtle and the routine for Lee has fallen into:  getting up from bed between 9am - 10am, eating some breakfast & reading, back to bed before noon to sleep for an hour or 2, back up and around for a few hours, another 2 hour nap in the late afternoon, then dinner and off and on dozing until bedtime.  Pretty exciting, eh?  His blood pressure has been coming down as well; averaging around 90/60.  Medication changes back in September and again in December, had brought his bp up from 82/58 to the high 90's/mid 60's.  This has been a good bp for Lee.  Yesterday, at the appointment, his bp was 82/60.  There are also subtle changes in the labs done yesterday.  It's tricky business determining when it's time for more tests and procedures.  

It's possible that the milrinone (which Lee calls "rocket fuel", quoting Dick Cheney from his book "Heart") is losing its effectiveness.  Lee says the rocket (his heart) is now re-entering the atmosphere and decay has begun.  We have to use analogies that make sense to us and have a little fun with it too.

The doctor had Lee reduce the dose of one of his heart medications (Carvedilol aka Coreg) to see if that would help reduce some of the extreme fatigue.  He had already reduced the dose earlier this year as his heart failure symptoms increased.  It's odd how the same drugs that have prolonged his life and quality of life are now contributing to his extreme fatigue.   

On Tuesday morning, Lee will have another procedure done at the Mayo.  The procedure the doctor will be doing is a "Swan-Ganz right heart cath." Swan-Ganz catheterization is the passing of a thin tube (catheter) from the vein in the neck, into the right side of the heart and the arteries leading to the lungs to monitor the heart's function, pressures, and blood flow.  We were told to expect to stay at least one night in the hospital after the procedure.

Depending on the findings,  the doctors will determine which of the following will be best for Lee: 

1) increase the milrinone doseage ( we can increase it one more level)

2) swap out milrinone for another inotrope, dobutamine (this med is sometimes better at keeping blood pressure up a little)

3) keep the "Swan" (neck catheter) in place, give both inotropes, milrinone AND dobutamine intravenously. 

The third option, will require staying in the hospital until a heart is available for Lee.  It will put him on the transplant list as 1a.  1a is the status for the most urgently needed hearts.  It's good, in that it means Lee will get a heart sooner than later.  It's hard because it means staying in the hospital until that time.  That's no fun.

 *** an update on how Lee is feeling.  He is actually feeling better this afternoon (with no nap!!)  He normally takes Carvedilol twice per day, so last night he took the lowered dose and this morning as well.  Perhaps we will be able to delay the heart cath procedure?? We know that this IS the path we will be going down, whether it is next Tuesday or next month or ... ... ...

We are steadfast in our faith in the Lord and His plan for us.  It is still a difficult journey.  Your prayers and support are coveted more than you can imagine.

Jeremiah 29:11  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.

Lee is back on The List!!

Lee is back on the Heart Transplant Waiting List, as a 1b.

On Friday, we made a run up to the Mayo Clinic to have blood drawn to be cultured for infection.  That's a little different from the normal labs Lee has drawn.  The blood is drawn from both arms (2 vials each) very slowly.  Lee says the bottles they put the blood into look like tabasco bottles.  As of this afternoon (96 hours later) there is NO sign of any bacteria/infection in his blood.  Praise the Lord!

Lee is feeling much better and is even getting out to walk a little.  For now, we will be going to the Mayo every 2 weeks, as he has been on the Milrinone 4 months now and needs close monitoring.  Our prayer is that a heart for Lee will come soon.  Waiting is hard, but we are continually thankful for family and friends who encourages us, check in on us, call, text, and email us.  It does help to keep the spirits up.

We had a nice visit from Lee's brother, Mark last week.  The visit had been planned for a couple of months and we were really glad Lee had gotten out of the hospital so he was able to really enjoy the time with Mark.  The timing was perfect, as Lee had just infused his last dose of the IV antibiotic when Mark arrived.  They had a "guys day" and drove down to Casa Grande to hang out with Seth.  It was too short a visit, but we'll take it and cherish it and look forward to the next visit.

On Sunday, my cousin Carole and her husband, Stan stopped by for brunch.  They had wintered over in Mesa (about an hour east from us) and were heading north to British Columbia.  We jammed a lot of fun & laughter into that short visit!

This week's task is to get some bids on new air conditioning units.  What FUN that will be, eh?  The days are heating up and our a/c unit is winding down, so we'll be looking to replace it soon.



Matthew 11:28 Come to me, all you who are weary and burdened, and I will give you rest.

Home From the Hospital

Well!  That was exciting.  Not the kind of excitement I'd like to repeat anytime soon though.  Most of the details are covered in the previous posts, and on Katie's blog: http://mcpheeandme.blogspot.com/  As long as Lee is on an antibiotic or there is any chance of him being infected, he will be off the active Heart Transplant Wait List and be placed as a Status 7 (inactive/not eligible for transplantation.)

The staph infection was identified as the hominis strain.  While still dangerous to have in the bloodstream, it is a relatively "wimpy" (this is the term used by the infectious disease doctor) bacteria, which generally can be treated with the antibiotic, Vancomycin.  After Lee had been on Vancomycin for 2 days, blood cultures were done again.  When the cultures were still negative for bacteria after 48 hours, a new PICC line was placed.  This then allowed us to switch back over to "Guido," Lee's backpack that carries his continuous pump IV medication, Milrinone.  When the nurse put the PICC line in, she also included an extra port for drawing labs or for administering another IV medication.  This extra port is where we are able to give the IV Vancomycin at home.

The plan is to stay on the IV Vancomycin for 2 weeks at home.  When that is completed, we will go to the Mayo for more blood cultures.  If the cultures are negative after 5 days, Lee will once again be listed on the Heart Transplant Waiting List as a 1b patient.

Today, Tuesday March 25, our home healthcare nurse came to instruct us on how to administer the Vanco (most of the nurses use this nickname.)

Part of the supplies for our new daily routine.

In the photo above, you can see a device (upper left) that looks like a globe with tubing coming out of it.  That container holds the Vancomycin.  The globe holds the medicine and there is a small pressurized pump in the center that delivers the medication through the tubing and into the port in Lee's upper arm.  Our very dear friend, Bert, who lives in North Carolina, has also been in the hospital with a bacterial infection & was released on the same day as Lee.  He will be doing the same IV medication routine as Lee, so we had a little fun with them. It's Spring Training time here in Arizona, so PLAAAAAY ball!! 

VANCO-ball!!  Comin' at ya, Bert!

Got it!  Now back to you, Lee!

We want to thank all who have been praying for us and for the many texts, emails, phone calls and words of encouragement.  Your support is SO very important to us.  We are truly grateful and humbled.

... so that the tested genuineness of your faith -- more precious than gold that perishes though it is tested by fire -- may not be found to result in praise and glory and honor at the revelation of Jesus Christ.  1 Peter 1:7

Update at the Mayo Hospital

First of all, Lee & I want to thank all of you for your prayers.  We have prayers and are on prayer chains from Canada to Mexico, from the West Coast to the East Coast and from the states of: WA, OR, CA, ID, NV, AZ, MT, VT, NY, NC, GA, PA ... and I'm certain there are more.  Truly, it is humbling and amazing. The Lord heard them and as of now, Lee does not have any signs of bacteria in his heart.  PRAISE OUR LORD.  Thank you all so much for the texts, email, cards and encouragement.  Each and every one is very very much appreciated.

On Thursday, a T.E.E. (Transesophageal Echocardiogram) was performed on Lee.  The procedure uses a scope inserted into the throat to look at the heart valve and surrounding tissue.  Lee has a mechanical valve (graphite) and also an ICD with pacemaker, including 3 leads (wires), which makes it easy for bacteria to stick and grow on the non-organic materials.  Endocarditis (inflammation /infection of heart lining) is a grave concern with the bacterial infection in the bloodstream.  It is difficult to treat and requires longer courses of antibiotics to treat.

His PICC line was pulled and that was cultured and checked for bacteria also.  It tested positive which was not surprising but also led to greater possibility of the heart being infected.

By Friday afternoon we were told that the heart looks clear of infection.  More blood was drawn to be cultured every 24 hours for the next 5 days.  We need to have 48 hours of negative results for bacteria and then the new PICC line can be placed.  The Infectious Disease doctor is monitoring the process and comes to see us once or twice each day.  He said the staph bug was one of the wimpy strains so that is even better news.  They identified a couple more strains of bacteria and all can be effectively treated with the Vancomycin that is currently being administered.

If all goes perfectly well (continued prayers for this please), Lee will be released from the Mayo Hospital on Monday.  We will be giving Lee iv antibiotics at home for 2 weeks, then back for another T.E.E. and more blood cultures.  When all is clear, he can then be placed back on the heart transplant list.

Last evening, Lee was feeling less tired and had less aching in his muscles so the antibiotics seemed to be clearing the bacterial infection.  Today he is feeling better still.  He is glad to have March Madness to keep him occupied somewhat.

A Bump in the Road

Lee is in the Mayo Clinic Hospital, but NOT for a transplant.  This is the life of waiting for a new heart.  Lee has a bacterial infection in his bloodstream (sepsis.)  The most likely cause is that bacteria entered through his PICC line.  Even with all the precautions we take (very sterile conditions when changing the dressing once/week, hand washing to extreme ...) it is not uncommon for this to happen.

PLEASE GO TO: http://mcpheeandme.blogspot.com/  for more information.  My brain is a little fuzzy this morning and our daughter, Katie posted all the details and prayer requests on her blog.  THANK YOU, Katie!!

.... and now, back to the hospital.

WAITING ...

What's it like to be on The Heart Transplant Waiting List?

WAIT     "verb:  stay (put), remain, rest, stop, 
halt, pause; linger, loiter, dally."
WAIT     "noun:  delay, holdup, interval, interlude, intermission, pause,break, stay, cessation, suspension, stoppage, halt, interruption, lull, respite, recess, moratorium, hiatus, gap, rest."

It's a funny word, wait.  I've read the meaning of the word several times over now and while the words are accurate, they seem a little lacking in intensity.  For us, the waiting is not passive.  We have things to do, places to be, people to see.  Our team (transplant nurses, doctors, social workers, etc.) tell us to "live your lives" while we wait.  We are doing our best to do that, albeit with some restrictions. 

We are limited in our travels, to a 2.5 hour radius of the Mayo Clinic.  That's a pretty generous radius, actually.  Last week, we drove down to Casa Grande (about 1 1/4 hour away) to see our son, Seth.  From Casa Grande, to the Mayo, is about an hour.  On the way home, we took the scenic route; a leisurely drive between The Sierra Estrella (mountain range) and The South Mountains.  We were enjoying the drive very much when I realized that we probably wouldn't have good cell phone service on parts of this drive.  Oops!  We will try not to make that mistake again.  

Lee & I are both pretty independent people, but we're learning to adapt to a "short leash" as Lee calls it.  Short trips to the grocery or hardware store seem innocuous enough, but when you are on "The List," knowing exactly where the other person is at all times becomes a very big deal.  Each of us carrying our cell phones at ALL times is mandatory.  It sounds easy enough, but really ...  think about it.  Every minute of every day, we need to have our cell phones within reach.  In church, we sit with our phones in our hands because we can't feel the vibration of the silent mode in our pockets. I often wonder what people think about seeing a mature woman sitting with cell phone in hand ALL. the. TIME.  It's a good thing we can't read minds, eh?  We try to stay within 15 minutes of each other all the time.  If Lee wants to go to the grocery store, 8 miles away, I need to go with him or stay at home. If I want to go further away than 15 minutes, I make a back up plan for someone to pick up Lee and bring him to me or take him to the Mayo Clinic.  As long as he's feeling well enough, he COULD drive himself to the Mayo Clinic, but I'd really rather he didn't ...  and so, we make plans.  We wait and we make plans.  We know that "The Call" will probably come when we least expect it & are least prepared but we try.

Our teams.  We have our Mayo Clinic transplant team and then we have our support team(s).  Our support team is a small number of people who have volunteered to be our contact people in case the Mayo Clinic can't reach us immediately when we get an offer for a heart.  The protocol is that our transplant coordinator/nurse will first call my cell phone, then Lee's.  She will leave messages, then try us again, then begin calling our list of people nearby.  Those people will either know where we are (and why we weren't answering our phones) or they will come to our house and come in (they have keys).  What do you suppose the chances are of getting "The Call" and me being,  say ... in the shower and not hearing my phone which I left on the counter (or forgot to bring into the bathroom with me) and Lee wandering outside to pick up the newspaper (while leaving his phone inside??)  These are the things I think about. These are the things I pray about not thinking about.  

Back to our support team.  When we get The Call, I have a very short list (3, immediately then 5 more if time permits or as we're on the way) of people to call or text.  Each of these people have a list of people they will notify for me:  family, friends, and prayer chains.  Knowing that people are praying for us daily now is a tremendous comfort and source of strength for us.  Knowing that within minutes of getting The Call, we will have dozens (and then dozens of dozens) of people praying for us is humbling, exciting, powerful and so, SO calming.  We know that we are covered in prayer and bathed in the Peace that passes understanding. (Philippians 4:7).

When the Mayo makes The Call, the first thing we will hear is, "We have a heart." Oh MY ...  what will I say?  How will I react?  To be perfectly honest ... I don't know.  I hope to be able to stay calm and focused on what we have to do.  Heather, our transplant coordinator, tells us that in most cases, they will want us in our car and on the way within about 15 minutes.  The drive to the Mayo takes a little more than an hour in GOOD traffic conditions. For me, having a plan is calming; being as prepared as possible is essential to calmness.  I have a mini-clipboard that I now carry with me at all times.  The clipboard contains 4 lists.  On the top is my list of immediate action (pictured below.)  The second list is things to gather if I'm home (my packed carry-on bag, backpack, Lee's shave kit, etc.) or to ask someone else to bring to the hospital for us later.  This list also has things that need attention such as: take the garbage out, toss the bananas in the freezer, have Hilda clean perishables out of refrigerator, turn off lights, etc.  The third list is my contact team and their lists of people to contact for me.  The fourth is a reminder to email friends and family during the long hours ahead at the hospital.

Are we ready?  Yes.  I think so.

We will live our lives as best we can while we wait.  In addition to everyday life: grocery shopping, bill paying, dental appointments, etc, we have many projects listed on our "to do" board.  We've decided it would be best to keep our projects small and somewhat contained.  It keeps us busy but not too tired out.

Waiting during cold, flu, and virus season seems particularly difficult. Do I really NEED to go to the grocery store?  Will people be offended if we decline to shake hands in church?  Are they even MORE offended when we whip out the hand sanitizer after shaking hands?  We do our best to remain low key and yet vigilant about exposing ourselves to people who are or may be getting sick.  If Lee gets any illness, he will be temporarily removed from the transplant list while he is ill and until he is cleared by a doctor.  

So ...  there you have it; our view of the waiting period.  Now, back to waiting:  cell phone batteries good?  cell phone charger with me at all times?  gas tank at least half full at all times?  laundry done?  lists at the ready? change of clothes in the car?

Wait patiently for the LORD; be strong and let your heart take courage; wait for the LORD!  Psalm 27:14

Checking In

There is not much to report these days, but thought I should update anyway just to let you know that!  These days, Lee goes to the Mayo Clinic every 2 weeks.  First there's the blood draw, then the appointment.  The appointments include a weight check (keeping Lee's weight at a constant level means less chance of fluid build up), bp check, medications review, a listen to the heart, and discussion of changes in health, etc.

Yesterday's discussion focussed on the fact that the Milrinone IV is not providing the same effects as it has been.  About 10 days ago, Lee began to feel less energetic, a bit more fatigued when walking, and started needing to nap more.  We feel like he's "peaked" on the Milrinone and is leveling off.  All of the labs done yesterday show that his liver and kidney functions are still the best they've been in many months, so that is a good thing.

So ... we keep doing what we're doing:  trying to stay as healthy as possible, working on some small projects around the house, looking at pictures of grandchildren, grand nieces and nephews, and staying ever ready to make the dash up to the Mayo Clinic when just the right heart becomes available to Lee.

Nahum 1:7  The Lord is good, a refuge in time of trouble.  He cares for those who trust in him.