Writing about Writing

Hello. This blog has been inactive for what... three years?

It's been inactive because I have been telling myself that I was ONCE a writer.

That young girl who filled up tiny memo notebooks with scribbled silly stories, she was a writer. In high school and college, that girl was a writer who filled journals with written prayers, existential grapplings (and also short stories for fun!)

That girl grew up and was paid to write as an intern copywriter/editor at the Youngstown Vindicator. At another job, real estate brokers paid that writer girl to write text for promotional brochures and 32-page long books used to sell fancy apartment complexes from one investor to another. Switched jobs and a staffing company paid her again to write proposals to win large long-term contracts.

In my spare time, the writer I once was wrote a few children's stories and made several goes at writing a memoir/roman-a-clef novel, half-dreaming of publication. That writer started this blog and once posted fairly regularly.

That's the writer I once was.

When I found out about my end-stage heart failure in 2014, I was definitely a writer.  I wrote about the ins and outs of that physical and spiritual journey before and after heart transplant. In that season, I also wrote and re-wrote tens of thousands of words of that pesky unfinished novel. The writer I once was self-published that novel here on Blogger (and then later, cringing, removed it).

So what happened?

The last few years have felt like groping through a dense forest. Caring for three high-needs kids with little respite. Trudging through the bureaucracy around special needs and accessing support—endless assessments, forms, meetings with an endless parade of strangers. Stumbling through a season of questioning my beliefs about grace-based parenting. Worrying about what kind of nation we live in. Doubting, not the Gospel, but the orthodoxy and faithfulness of the churches and parachurch organizations I once trusted.

I felt lost, and I slowly lost my belief that I had something worthwhile to say.

So, I stopped writing. I stopped thinking of myself as a writer entirely.

In the last six months, the forest has thinned out. There are meadows and space for my soul and imagination to breathe and make sense of where I have been and where I'm going. In concrete terms, that means that I switched up my antidepressant, the supports we trudged to access are in place, the therapies are paying off, and our household atmosphere is more peaceful and less chaotic. Most significantly, my youngest is in kindergarten.  Even my homeschooler has enrichment classes away from home two days a week. I suddenly have a luxury I've sorely lacked: stretches of time to spend alone or with friends.

Yesterday, my daughter wrote two sentences to start off a persuasive essay—about why everyone should have weekly dance parties—before asking if she could dictate the rest to me. Her hand muscles tire and cramp easily. Having a scribe is written into her IEP.

I am the scribe. Except it's SO HARD to just be the scribe.

Whenever she starts dictating, immediately a part of my brain kicks into gear, interpreting what she wants to say and generating possibilities for how *I* would word it. Writing and editing are my jam, baby.

I was once a writer? NO. I still AM a writer! So, I'll be writing. Stay tuned for more from this writer who writes about writing, about God's grace on display in this neurodivergent family learning to cope, to thrive and to embrace life with autism, ADHD, anxiety and depression.

Sincerely,
Magpie the Writer.

Putting on the Armor of God

This summer I've been participating in Priscilla Shirer's Armor of God study.  On page 99, Priscilla poses the question:

How did the enemy take advantage of an upsetting, unexpected, chaotic event or circumstance to gain access to your life?

Well, I had a heart transplant 17 months ago.

It all happened quickly.  April 2014 I gave birth to my third baby and a week later was admitted to the hospital with congestive heart failure due to a genetic condition that I had been told wasn't very serious and most likely wouldn't be a problem.  Six months later, I learned that I needed a heart transplant to save my life.  Our family had to temporarily move four hours south to live with my parents a few months later as I waited for and recovered from the transplant.  Then we moved back and have been struggling to find the "new normal" since then.

How's that for an upsetting, unexpected and chaotic event or circumstance?

Those days of heart failure were hard to be sure, but at the same time, it was a beautiful time in my life.  I felt loved, supported, at peace and so very close to God.  It was pretty easy to be heavenly minded when the physical body was declining daily and rapidly.

My post transplant spiritual life has been rocky by comparison,

In the months after my transplant, I was recovering physical wellness, regaining energy, regaining strength almost daily.  I was on an emotional high, so happy and grateful to be alive.  I felt so very much better and could hardly believe there was any limit to how much better I could feel.  It seemed within reason that I was going to be "normal" very soon.

Hello, pride.

God had felt so near.  But slowly, He felt farther away.  Who moved?  That would be me.

Old struggles I thought were resolved cropped back up.  From my high school and college days, God had slowly and painstakingly brought me out of perfectionism, legalism, and the bad habit of measuring myself by my accomplishments or comparing myself to others.  In the past 17 months, I let those snares entangle me again.  I struggled mightily to meet my own expectations and the perceived expectations of others, and despaired when I failed.

Why couldn't I keep up? Maybe I was just lazy.... Maybe I needed to push myself harder.  Maybe I just needed better systems and strategies..  I pushed myself and berated myself for not being able to do and accomplish as much as I thought I should be able to do.

All along, the real and biggest problem was that my focus had moved off of Christ and onto myself, to my struggles and circumstances.  I felt irritable, short-tempered, selfish, restless, unbalanced, uncentered. I was half in denial about the limitations living with a transplant places on me, while also resenting those limitations at the same time.

The enemy had used his usual tactics of deception and hitting at my weak points to pull me down to be sure.


I missed the first three weeks of the Armor of God study due to serving at VBS and needing to get my blood drawn to verify my medicine levels.  Last week I went back through the first few weeks of lessons to catch up.

God's word does not return void and it came at just the right time to rescue me from the pit I had fallen back into.  It opened my eyes to the reality of the enemy and the way he works, but more importantly, reminded me about my spiritual identity and spiritual resources.

With a refreshed and renewed understanding of who I am in Christ, I've been able to better come to grips with the truth of my physical reality as well.

I'm accepting the fact that living with a transplant is like living with a chronic illness or condition.  This new level of acceptance sparked curiosity, and I set out to find out as much as I can about the whats and whys of limits.

Here's what I learned:

Although my new heart works so much better than my old thick, stiff, failing one did, it has specific limitations because of the nerve connections that were severed when the heart was transplanted.

The vagus nerve is the most efficient way for the body to adjust heart rate and blood flow as needed to accommodate for changes in activity level, body position, and external temperature.  But God designed a back-up plan: hormones from the adrenal gland.

But there is a catch: The hormonal pathways my body now uses to adjust my heart rate and blood flow is much slower to turn on and shut off than the nearly instant adjustments the nervous system can make.

As a result, I "feel the burn" sooner when exercising or doing heavy housework, and have more soreness afterward that lingers longer than it otherwise might .  Getting up from a seated or squatting position quickly causes momentary low blood pressure and dizziness, which can be bothersome when picking things up off the floor for example.  If I let myself get too cold, it seems to take forever for me to feel warm again,  More bothersome to me is how much lower my stamina is and longer my recovery time is when the weather is hot.


That is part of the terrain I am traversing.  Other features of my terrain are room for improvement in communication with my wonderful husband who has to work longer hours than I'd like, three active and intense children including a daughter with behaviors on the autism spectrum (we are in the midst of evaluations for a diagnosis) ... those are other features of my terrain.

God is with me, and has not left me helpless or defenseless in the face of these circumstances.  He has blessed me with every spiritual blessing in the heavenlies, but I have to activate them. Richard A. Burr came up with a clever acronym: Prayer Releases All Your Eternal Resources.

Asking for what I need with gratitude relieves anxiety and promotes peace.  I can cast my cares on Him because he cares for me.        

God has been faithful and good through it all.  Here are a few ways he has provided and blessed me:

In my search for truth, I was led to a website for Christians with chronic illness: Rest Ministries.  There I found beautiful words of vulnerability and dependence on God in the midst of suffering.  The prayer cards they offer for download there have been helpful to me as well.

A sibling rivalry e-course by Connected Families we started last month is equipping our family with practical ways to use the shoes of peace in our family relationships.

These months have not been wasted.  Some of what seemed like backward movement may have been necessary to clear the way for new growth in the future.  Certainly, the process of re-evaluating who I am has led to a better certainty and understanding of my gifts and callings.  Creative communication and teaching along with hospitality, which I share with my husband, round out my top three.

This blog is one way to live out my calling.  Opening my home to host La Leche League meetings starting next month is another.  And last but certainly not least, my husband and I will be exercising our shared gift of hospitality by welcoming an exchange student into our family for the coming school year.

I'll be back soon to share more about my journey and what I'm learning from God's graceful discipline.

Simplicity

In 2010 I wrote the following intending to post it on this blog:

Our 700SF 1BR/1BA condo is listed for sale. It goes up on the MLS tomorrow, and our agents are coming by to take pictures. Although prices are still depressed compared to the 2006 inflated levels, there is buying activity going on, and we're expecting a lot of showings.

All that to say that we've been working hard for the past 10 days or so on "staging" our place for sale. Besides rearranging and removing some furniture, the primary activities of staging have been extreme decluttering.

We rented a 5'x10' storage unit to keep all the stuff until we're ready for it again.

Rather than a feeling of sacrifice, I've been surprised to find the functioning of our day to day lives has not been significantly different without the items in storage. In fact, I love the way our house feels without them. If it is so extraneous, it makes me wonder why I've been holding on to it? Why did I live in such a cramped way just for the sake of hoarding things I might need someday when we might live in larger quarters?

Our bedroom is the first room to be absolutely finished. I love to be in there. It feels cool, relaxing and spacious. 

I'm very encouraged to continue allowing the Holy Spirit to build the discipline of simplicity into our lives.

In February this year, we packed up to move in with my parents while I waited for a heart transplant. Enough clothes for eaxh of ua for a week or so, a basket of toys for the kids.

Once again, I wondered if I could live with such a "barebones" inventory in this situation, why do we have so much more in our day-to-day lives?

Yet I forgot the lesson all too quickly.

We will be returning home in a week or so.  While we've been gone, I started thinking of all the things I'd like to acquire and add to my possessions.

Coming across this old post has reminded me of the joy of simple living and to pursue it as a spiritual discipline.

Heart Transplant to Recovery: Second Day

The following was posted to my CaringBridge journal on Feb 23, 2015:

Watched part of the Oscars last night, but fell asleep part way through. Woke up just long enough to hear who won best picture. Slept fitfully in the chair all night. It's much more comfortable to be in the chair up right then reclining because of the chest tubes.

A few minutes ago, they turned off the dobutamine which was supporting my heart function, so right now my heart is beating on its own. If the heart rate (above 90 BPM) and cardiac index (high 2s to low 3s) both stay within normal levels without the dobutamine they will remove the Swan catheter from my neck and help me walk around.

My white blood cell count was slightly elevated on my early morning labs, so they are running cultures from my blood and urine to see what the source might be. There's a chance is just inflammation from the steroids or surgery itself but if it is an infection they will want to nip it in the bud. My temperature is mostly normal 98-99.

I'm very hungry and thirsty. My whole thorax aches.

Dr. Ramzy the transplant surgeon stopped by to talk to me just now. He said he's very pleased with my progress and tell me my heart that I received is very young between 25 and 31 years old that's all the information he could give me right now without me submitting an information request to the transplant coordinators.

Heart Transplant to Recovery: First Day

The following posts were made by my husband on Feb 22, 2015:

Margaret was extubated at 10 pm and after briefly speaking with me went back to sleep. It is assumed there were no issues over night as I did not receive a call and they stated  they would call if there were any problems.  I am on my way to spend the day with her an if all goes well as it has been, they hope to move her from the ICU as early as tomorrow.  She will likely remain hospitalized for about a week.

—

After a good night Margaret was able to get up and be moved to the chair and she was awake for the morning, numbers that are being monitored remain good, the hope is that tomorrow the swan catheter in her neck which measures pulmonary function and right side of heart function comes out tomorrow, once it comes out she will be able to ambulate and be moved out of the ICU. Chest tubes which remain for drainage are causing pain and discomfort, we hope they are able to be removed on Tuesday.

—

She is also enjoying her 1st meal tonight.

Heart Failure to Transplant: The Wait is Over

February 21, 2015 is my transplant day. I posted some of these, my husband posted others:

A call came at 1:20 a.m. about a potential match, and now I'm here at Cedars-Sinai preparing to possibly go into the OR. The transplant surgeon is traveling to the donor's hospital to perform a visual inspection of the heart.

They will say go or no by 9:00, with surgery scheduled to begin at 9:30 if it is a go, but the whole thing may be called off if there is any problem with donor heart.

Am I ready? Is this it? Only God knows!  

—

The anesthesiologist just took me into the pre-op waiting area and went over the transplant procedure. He explained that it's a parallel process. They expect to get started around 10 by starting to sedate me. They won't be operating on the donor until I'm ready to go. They will check the heart and if it's okay they will bring it here by helicopter and begin the operation on me. He said once I go to the OR there is a 90 percent chance it will go forward and once they put me under its a 97 percent chance of going forward, so most likely this is it but we're still waiting and I'm very nervous.

—

This is Adam, Margaret's husband, she was rolled into the operating room at about 11am with surgery expected to start at about 11:45

—

Just got word surgery has officially begun.

—

The doctor said the surgery went well with no complications, the heart is beating well and she is now in the ICU, all numbers from everything they are monitoring are where they like them to be, the next 24-48 hours remain critical, thanks for praying.

Heart Failure to Transplant: Still Waiting

The following was posted to my CaringBridge journal on Feb 16, 2015:

This morning when Adam started a new bag of medicine, we discovered that the pump had quit working almost 25 hours before.  I'm not sure why I wasn't aware of it at the time, but I went a full day without the dopamine.  Did that affect me?

I felt good most of the morning yesterday.  In the afternoon, Adam and I took the kids to the OC Great Park to ride on the carousel.  That went well but took a lot more out of me than I was expecting it to.  As the evening went on I felt increasingly fatigued and heavy and weak.  This morning, Zachary woke up early but I couldn't seem to fully awaken to get up with him.  Instead I spent the next few hours in and out of dreams that all had a common theme of me having a hard time keeping my eyes open.  When Adam finally had me get out of bed at 9:15 so he could switch my medicine, I felt more wiped out than I have in a long time.  Every time I moved at all, every one of my muscles would shake and twitch as if I were a weightlifter who had just finished an enormous number of repetitions. 

Coram Infusion Services who supplies my medicine called shortly after I woke up to schedule my next delivery and I told them what happened with the pump.  They will be sending a replacement by courier this afternoon. 

Next I paged the on-call heart transplant cardiologist at Kaiser Santa Clara to give them an update about the pump failure and resultant fatigue.  Dr. Weisshaar called me back and says it sounds like the dopamine is doing something for me after all... it's kept me from having these severe payback days.  She seemed to think that now that it's restarted I may find the recovery period shorter than I would have without it.  I'm feeling less shaky but still VERY tired.

Whether or not it shortens the payback period, I'm glad to know the dopamine is actually doing something for me, even if it is just keeping my condition more stable while I wait.

How much longer will I be waiting?  It's impossible to predict or know for sure.  The call that they have a heart for me truly could come at any time.  Every time I speak with a member of my care team, they say, "Hopefully the next time I talk to you, you will already have your new heart."  But on Thursday the Cedars-Sinai transplant coordinator, Jenna, told the Kaiser transplant coordinator, Lena, that she is confident that I'll have a new heart no later than the end of March.  So it could be tonight, or it could be 5 weeks from now.  

The end of March sounds far away now, but in the scheme of things it really isn't that much time (only 35 days or so) and will go by quickly if indeed I do have to wait that long. 

I'm anxious for things to move forward, but am truly powerless.  All I can do is trust God's timing and learn to be content and enjoy my present circumstances. 

My title has a double meaning.   The first is plain: I'm still waiting in the sense that the heart transplant has not happened yet and I have no choice but to continue to wait.  The second is more of a goal than a reality: the Spirit is reminding me of the need to be still while I wait, to allow Him to still my anxious thoughts and replace them with trust and assurance and praise and surrender.  Yet as it is written, "the spirit is willing but the flesh is weak."  It's an ongoing struggle, and I am in need of your prayers.

• 
  

Heart Failure to Transplant: What to Expect ...

This post went up on my CaringBridge journal on Feb 9, 2015:

I can't help but compare the journey to transplant to the journey of pregnancy and birth. 

Both involve a process of (somewhat) uncertain length, that will be a unique experience for each person who goes through it, but yet for all who go through it there are many experiences that they will share in common. 

The exact moment when pregnancy shifts to labor to birth is unpredictable and (mostly) out of the mother's control.  The exact moment when a heart is found, the process of prepping for surgery, and exact time and date of transplant is likewise unpredictable and out of my control. 

The birth of a baby can be prepared for but becoming a parent changes the mother's and father's and siblings' lives in unexpected, dramatic and irreversible ways, and transplant similarly signals the start of a new way of life. 

Pregnancy and birth change the mothers' body; transplant and immunosuppression does as well.  

Childbirth classes and books on pregnancy, birth and parenting abound, and when I was pregnant the first time I found them interesting and helpful.  Similarly, I've read through all the manuals Kaiser and Cedars-Sinai have provided me covering the facts of life before and after transplant. 

However, in the past few days I've been seeking out and enjoying reading others' personal accounts of their heart transplant journey. 

As I read details of their days leading up to transplant, I identify with many details: the fatigue, shortness of breath, uncertainty, difficulty taking it all in and feeling like it's all going so fast. 

Yet other aspects of other patients' stories make me realize anew just how blessed and protected by my Creator, Redeemer and Sustainer I have been.  Many patients get much sicker than I am now before a heart is finally found, many do not have much of a support network, many have other physical and mental health issues that complicate their recovery, many have problems with their insurance coverage, many experience delays and denials of their claims for disability. 

As I read the stories, I find the moments just before surgery and in the first few days of recovery most compelling because that is what I am most uncertain about.  It seems like there are a wide range of experiences, some have complications and pain, others sail right through.  I find it comforting in a way to know in advance some of the possible outcomes, so that if one of them happens to me I will know it's within the range of "normal"! 

In one of the stories, a woman talked of a moment a year or so after her transplant when she had a mental shift from "transplant patient" to "someone who happened to have had a transplant" and felt a new sense of freedom to enjoy life.  Thinking of what I have read of what to expect in terms of post-transplant care, that shift probably corresponds in part to the less frequent checkups and lighter medication load that happens around that time as things stabilize.  I can expect that I will feel like a patient for a while... but looking forward to the day when it's mostly behind me and the medication regimen and caring for myself as a immunosuppressed person will be assimilated as just my normal state of being, background details as I live out my vocations to love God and love others through my role as wife, mother, community volunteer and whatever else I may find to do in the future.

Heart Failure to Transplant: How I'm Feeling

The following was posted to my CaringBridge journal on Feb 9, 2015:

It used to be that I could write out my thoughts and feelings better than I could talk about them.  Lately that has not been the case.  Over the weekend I had lots of good conversations with Adam and my parents about all sorts of topics, but when I come to sit here at my laptop and write about them it all seems muddled and I don't know where to start or how to phrase things to most clearly communicate the truth.  There is a lot of both/and paradoxes in my life right now, and the nuances of how I feel are very difficult to capture.  Spoken words are more ephemeral; written words seem too permanent to keep up with the swirl of thoughts and feelings I'm having.

Yet, I will try.

The truth is that God has given me tremendous faith and peace AND I also feel apprehension and concern.  Both are true.

I'm scared that THE call will come (am I mentally ready? will something go wrong? how unpleasant/painful will recovery be? will I throw up?) and scared that THE call won't come (did we move down here too soon? will I get an infection while I wait?).  Each day that passes without the call, I feel disappointed (another day of waiting, another day of hauling around Curly and Zolvie and struggling with unrelenting Fatigue) and relieved (another day without immunosuppression, another day without a new surgical scar, another day with my husband kids and parents before being separated from them in the hospital for a few weeks).

Each night when I go to bed, I wonder if this will be THE night.  It's a prime time for big conflicting feelings bubble to the surface.  Excitement (How much better will I feel? What things that are unthinkable now will be doable without a second thought?). Horror (chest sawed and pried open, a dead person's heart, put back together with staples, a giant scar, drainage tubes, catheter, drugs, drugs and more drugs to mitigate the side effects of drugs).  Sadness (for things I am missing out on and my family is missing out on because of this situation, because some family out there will lose their loved one, in fact people die every day and some choose to donate organs and it's sad and beautiful at the same time).  Gratitude.  Peace.  Hope.  Surrender.   

Heart Failure to Transplant: Timing and Provision

The following was posted to my CaringBridge on Feb 6, 2015:

Family, friends and community contacts have continued to generously meet our financial needs in various ways, often just before an a unanticipated expense has come up!

Adam had been wanting to sell his old car, but was putting it off until he could do some prep work on it. Early last week he felt an urgency to get it listed as is, and quickly found a buyer and officially sold it Thursday night just before we decided to relocate.

My MOPS group had arranged for a photo quilt to be made for me by Garden Of Hope Quilt ministry so i could snuggle with pictures of my family in the hospital. They called to say it was complete just after I got the call from Cedars-Sinai about the potential match. The two ladies who came to deliver it that night said they had been feeling a sense of urgency to complete it and get it to me quickly.

The call on Thursday spurred us to relocate before the surgery and allowed us to pack up what we need in a relatively unhurried manner. Each day that passes here without THE call is another day to accustom everyone to the new situation before I am in the hospital recovering from the transplant surgery.

When we met with the staff at Cedars-Sinai's transplant program in December, the social worker there suggested that I would be eligible for disability through Social Security if I had earned enough credits while I had been working. I applied when I got out of the hospital in January.

Last week I received a call saying they were expediting my claim due to the seriousness of my condition.

This morning I got another call. My claim has been approved, I have been found disabled and soon will receive back payments from October 2014 on, which will continue for one year after transplant!

This will certainly help cover expenses and allow Adam to have more flexibility as to when he returns to work after my transplant.

Tomorrow there is a family reunion at my parents' home. While I'd love to see everyone, I am at peace with God's providence, knowing THE call could come any time.

Heart Failure to Transplant: Settling In

The following was posted on my CaringBridge journal on Feb 3, 2015:

We're here at my parents' house and mostly unpacked and starting to work out routines.

Quick random updates: 

• The boys have both developed stuffy runny noses but never got a fever like Charlotte, and Adam and I have stayed healthy.  
• Charlotte had a bit of meltdown this afternoon and after I stayed close and invited her to snuggle she shared her sadness about missing home, missing school, missing her friends.  Poor thing, she didn't get much of a chance to prepare for this transition and having been home sick from school on Friday didn't even get to see friends one last time or say goodbye. 
• Every time my cell phone rings I get a surge of adrenaline thinking it could be Cedars-Sinai with THE call.
• My dad is working from home and Adam is working at his company's office in Brea.

Heart Failure to Transplant: Temporary Relocation Plans

I posted the following to my CaringBridge journal on January 30, 2015:

OK!  Everything is coming together for us to head down to Southern California at some point in the next few days. 

• Charlotte can start temporary independent study on Monday
• Adam's company will let him work from their Orange County office starting Monday
• My heart failure/transplant team at Kaiser Santa Clara is working on getting the deliveries of the IV dopamine switched to my parents' address; worst case scenario there may still be a delivery here on Tuesday and someone will have to drive it down to me.  I have IV bags on hand to last through Friday. 
• My parents are working on getting rooms ready at their house for us and rehoming my grandmother's old cat (I seem to be slightly allergic and it's better for me to limit contact with animals anyway)

However, Charlotte came down with a fever, cough and body aches last night, and she vomited once today.  She still has a fever and is sleepy.  No one else in the family has it so far and I am doing everything I can think of to help my body's immune defenses.  I don't really want to make her travel when she is feeling so poorly, so the timing of our trip is a little up in the air at the moment, but I feel confident we will be down there by Monday evening at the latest.

• 
  

Heart Failure to Transplant: First Offer

The following was posted to my CaringBridge journal on January 29, 2015:

Cedar Sinai called about 20 minutes ago and said they have a heart to offer me. They want me to be down there in the OR by 10:30 which may be too tight of a time frame. They are looking into it and will call me back. The good news is that even if this doesn't work out that means I'm at the top of the list and should be getting a new heart any day now. Please pray!

—

The donor's family had requested that surgery begin by 10 p.m.  I could possibly arrive at Cedars-Sinai at that time if traffic conditions were perfect, but that doesn't factor in all the admissions and pre-op steps that I'd need to go through before going into surgery.  

So this heart is not for me.

That is OK.  

I am now top of the list for a Type O+ heart of my size.

Cedars-Sinai recommends that I temporarily relocate closer to them, preferably tomorrow or at least this weekend, so I don't miss the next offer.

Heart Failure to Transplant: Immunity

This was posted to my CaringBridge journal on Jan 28, 2015:

As I wait for a transplant it is of utmost importance that I do all I can to avoid germs, practice good hygiene and support my immune system to prevent infections that would force me to decline an offer of a heart. 

After transplant, I will be immunosuppressed. 

In light of this, I've been paying particularly close attention to the news of outbreaks of flu, enterovirus and measles.  I've also been doing some reading about vaccines, and learned that some result in the recipient shedding live virus that can then infect those with compromised immune systems.  And that the immunosuppressive drugs that I will be taking can actually reduce my immunity to diseases I've already been vaccinated for, such as measles. 

On Monday, the home care aide that normally works MWF called in sick.  This morning she showed up.  I asked her how she was feeling and she said in a congested laryngitis voice, "A little better."  I thought about asking her to call out, but hadn't had a chance to speak up about it until an hour or so later when she told me she wanted to call her supervisor and ask for a replacement to be sent so she could go home.  After she got off the phone, she told me that on Monday when she called in sick the supervisor had suggested she show up anyway, that it wasn't a big deal. 

I felt outraged.  It is a huge deal! 

When the supervisor called me to let me know that a replacement had been found, I gave her a piece of my mind. 

I said to make a note on my file to NEVER send a sick person to my home.  I said it's a matter of life and death!  It's not just that getting sick could be dangerous in my condition (which it is), but that I could miss an organ offer.  I know that ultimately God is in control of the timing of a transplant and protecting me from infection, but that doesn't mean I shouldn't do everything I can within reason to stay healthy!  And standing up for myself is one of those things I can do.  :O)

Heart Failure to Transplant: PICC Line Problems

This was posted to my CaringBridge journal on Jan 26, 2015:

Friday January 16 I went to Kaiser Fresno for my first PICC line dressing change and blood draw.  My mother-in-law Brenda drove the boys and me up there.  I made sure to wear a mask and use lots of hand sanitizer to avoid contracting any infections.

My PICC line has two dangling connectors called lumens.  The nurse flushed the capped red lumen that was supposed to be for blood and drew back the plunger on the saline syringe, but blood just wouldn't come.  So she decided to switch my medication to the red lumen and try to draw blood from the purple one.  She was able to pull blood back from the purple lumen.  Then before drawing the blood for the labs, she decided to flush the line with saline.  That gave me a surge of the dopamine which made me feel quite lightheaded and woozy.  My blood pressure dropped down into the 80s over 40s. 

After the blood draw, the nurse did the dressing change and repositioned my PICC line.  Originally it had been positioned at a slight angle pointing to the outside of my elbow, and she made it more or less parallel with my arm and perpendicular to my elbow crease.  As the week went on, I discovered this positioning yielded several problems.  One, the lumens would form a scissor like shape in my elbow crease and pinch me repeatedly.  Two, whenever I bent my arm, the portion of the PICC line between the lower anchor and insertion site would kink.  Sometimes it would stay kinked long enough for me to get an alarm, but because I have a very slow drip, more often the kink would not be there long enough to trigger an alarm but would be there long enough to cause a buildup of dopamine in the line and the sudden surge of medication would cause a woozy feeling much like I had experienced when the nurse flushed the line on Friday.

As the week went on I felt steadily worse and finally just before 5:00 p.m. on Thursday called the heart failure clinic to check in.  I feared that perhaps they would say it was time to admit me to Cedars Sinai to wait there as a Status 1A, but after discussing the situation, we deduced that the source of my woe was those kinked line medication surges combined with the fact that I had inadvertently reduced my sodium intake below what is optimal for me, which led to a too low circulating blood volume which made me more sensitive to the surges and also triggered palpitations which also can cause the same lightheaded symptoms.  In the course of the conversation I told them about my reaction to the nurse flushing the medication line on Friday and they said to make sure no one ever did that again, as it could dangerously strain my heart!  

Thursday at dinner I made sure to get enough sodium, and almost immediately I felt much better.  The kinked line alarms and medication surges continued to occur, but I didn't feel them as intensely.

Friday it was back to the Kaiser Fresno Infusion Clinic for another dressing change and blood draw.  This time I had a different nurse who was very meticulous and thorough.  She positioned the dressing parallel to my elbow crease and I have had no more issues with the line kinking or getting medication surges. 

So Friday, Saturday and Sunday I felt better than I had at any time since coming home from the hospital!  With a clear head and renewed energy I was able to sort through the mail and other paperwork that had piled up on the table near the back door.

Today I have a bit of an upset stomach however.  I think the blue cheese on the Wendy's apple pecan salad I had for lunch on Friday and the two bites of Adam's frozen yogurt swirl from Costco that I had on Sunday afternoon may be catching up with me.  I'm pretty severely lactose intolerant but with daily probiotics can sometimes get away with small amounts of dairy.  As reactions go this one doesn't seem too bad at least.

I have been wearing a mask to church on Sundays and when I go out in public in general.  Not only does the mask help keep germs out, but a recent study has shown that keeping your nose warm can help your body fight off upper respiratory infections.  Wearing a mask is a bit aggravating, but worth it if it will help me stay healthy and ready to respond to the transplant call which could come any time.

Heart Failure to Transplant: Estimating Wait Time

The following was posted to my CaringBridge journal on Jan 16, 2015:

The transplant list is kept nationally, but it is not exactly first come first served.  Time on the list is only one of many factors that go into determining who receives the offer when an heart becomes available.

Say that someone experiences a traumatic injury and is declared brain dead, and has stated their preference to be an organ donor.

If this happens in Los Angeles, the transplant coordinator would first look for a matching recipient in the Organ Procurement Organization (OPO) sub-region that LA is part of (I believe it's Region 5).

The transplant coordinator would look in the database of transplant candidates within Region 5 to see who matches the donor in terms of size, blood type and other immune factors.  I think they also consider age of the donor compared to age of the recipient.  They wouldn't give me a 70 year old heart, for example.

If more than one candidate is a good match for the donor, then they look at how sick the candidates are.  This is where the priority statuses come in.  1As get priority, then 1Bs, then Status 2s.  

If there are no 1As and more than one 1B that is a good match for the donor, then it comes down to who has accrued the most time waiting.  I was placed on the list officially as of January 12, so my wait time starts accruing from that date.

If there are no matches for the donor at all in Region 5, then they would offer the organ to matching candidates in neighboring OPOs (there are two covering Northern California and one that covers San Diego).  The process would be repeated for neighboring regions in Oregon and Nevada and so on until a matching recipient is found.

My blood type is O, the most common type, which puts me in a large group of candidates.  But my petite size means I need a small heart.  

Cardiomyopathy like I have is a relatively rare reason for heart failure.  More common is coronary artery disease and heart attack.  Those on the list for those reasons likely tend to be older and bigger than me.  Those who experience traumatic injuries and brain death tend on the whole to be younger (because of more risk-taking behavior in the young) and potentially have hearts on the smaller end of the spectrum. 

So, there are fewer candidates of my size and potentially more donated hearts that match my size, which explains why the Cedars-Sinai team feels that I will likely be getting offers sooner than later.  

Heart Failure to Transplant: Closer to Transplant

This was posted to my CaringBridge journal on Jan 15, 2015:

Monday we got set up with Kaweah's Private Home Care, and starting Tuesday have had a home care aide here with me to help with the boys and housework from 7:30 to 3:30 each day.  A woman from my church named Judy, my mother-in-law Brenda and our faithful friend Polly have been filling in the gaps so that I am never alone with the kids.

Monday I also received the call from Cedars-Sinai to let me know that I've been officially listed with the United Network of Organ Sharing (UNOS) as a Status 1B.  They feel based on my petite size that I could get an organ offer any time now.

This week has had many challenges and adjustments for everyone.  Adam has risen to the challenge and shouldered so much of the responsibility for my care and the care of the kids and has really done admirably in keeping his patience and a good attitude through it all.  Your prayers are felt and appreciated in this area as in all other aspects of this journey.

Elliott and Zachary are adjusting well to the abrupt weaning all considered, but both have had rough moments and tears, particularly around nap times and bedtimes.  I'm talking them and me through it, acknowledging out loud that this is a big change for all of us, that it is hard and sad and OK to cry and miss it, and that it will get better as we learn new ways to relate to one another.  

Weaning brings shifts in hormones which is making me all the more emotional.  Tears have been very near the surface since yesterday afternoon.  I miss my babies even though they are right here.  Just typing those words makes the tears start again.  And that is OK.  I'm not scared of my sadness and I know it will end/lessen.  I don't need anyone to talk me out of it or cheer me up or pity me, just to reflect my feelings and offer hugs.  

This morning I decided at the last minute to go to MOPS after all.  It wiped me out, but it was so good to get to make a craft, get some real-life hugs and talk about my situation and about everything but my situation.  The boys were able to stay home with the home care aide, and I got a ride there and back.  

I have three upcoming appointments.  First a trip to Fresno for a blood draw and dressing change for my PICC line on Friday afternoon. Next a phone appointment on January 20 with a nurse from the heart failure team at Kaiser Santa Clara to check how I'm faring, and finally a phone appointment with Dr. Weisshaar on February 5.  

When I was discharged from the hospital last week, I was told that they (they being the heart failure/transplant cardiologists at Kaiser and Cedars-Sinai) want to be very vigilant going forward for the least sign that I'm declining further so that if I do they can admit me to the hospital at Cedars-Sinai to wait for transplant as a 1A.  Either of the two follow up phone appointments could be triggers for that decision depending on how I am doing.  

In light of that and the prediction from the Cedars-Sinai transplant coordinator that I could get a call any time as a 1B, I've been working on contingency plans.  What do I need to have packed in advance.  What happens if the call comes at this time or that time, who will watch the kids, how will transportation work, and so on.  

My original gut feeling when transplant was discussed was that our family should stay together as much as possible.  Then as we began to discuss it more, it seemed to make sense to have Charlotte stay with George and Brenda so she could continue going to school up here and Zachary and Elliott would go to stay with my parents.  It would potentially minimize disruption to Charlotte's routine.  It would make it easier on my mom to only care for the two boys.  

But looking at it now that the separation is a real imminent possibility, I can't bear the thought of Charlotte being left behind and separated from the rest of us.  Yes she could visit, but she's only six, and I think that is too young to live apart from me, her dad and siblings except for visits for the whole two to three months that I am in the hospital and required to live in Southern California while I'm recovering post-transplant.  I feel even more strongly that our family needs to stay together.

Temporary remote independent study through her current charter school (Valley Life) is a possibility.  We could also take her out and transfer her to a school in Southern California, but that would mean losing her spot at VLCS.  

Anyway, I talked it over with Adam last night and he agreed that we could make it work for Charlotte to come with us. Then I talked to my mom this afternoon and she said it is totally fine for Charlotte to come stay there with the boys.  She suggested that maybe another relative or friend who lives nearby in Orange County can have Charlotte come over regularly to do school work if we go the independent study route.

God's perfect timing and plan are all coming together...

Heart Failure to Transplant: Curly and Zolvie

The following was posted to my CaringBridge journal on Jan 10, 2015:

Curly and Zolvie came home from the hospital with me.  They are my new constant companions.  They brought a lot of stuff with them that has taken over our guest room.  Like any guests, they are requiring us to change our habits and routines somewhat to accommodate them.  

Curly is the Curlin brand IV pump that continuously infuses dopamine into my PICC line.  I can carry the pump and bag of dopamine in my hand, or I can strap them into a bag that straps around my waist.  One of the most dangerous side effects of continuous dopamine is that it can make the user more prone to fatal arrythmias or sudden cardiac arrest.  That's why Zolvie, The Zoll brand Life Vest, came along too.  Zolvie stands by ready to shock my heart back into normal rhythm or to get it to start beating again.  The vest looks a little like a backwards bra.  Four electrodes in the band monitor my heart rate, and there is a pocket for one of the "therapy pads" of the defibrillator.  The back panel holds two more "therapy pads" between my shoulder blades.  The vest is connected to an external monitor and battery pack with a handy cross-body strap.  The electrodes and therapy pads can be disconnected from the vest so it can be machine washed and dried periodically.  They sent me home with two vests and will mail me one more to make the laundry burden a little less demanding.

• 

Together Curly and Zolvie add about 10 pounds to my dry weight.  That's only the beginning of the changes they bring and represent.  My heart failure has already placed some limits on my activities, and in a way Curly and Zolvie just make those limits more definable and salient.

• I can't drive.
• I can't be alone with the kids.
• I can't pick up or carry the kids, or anything heavier than 5-10 pounds with my left arm which has the PICC line.
• I can't let the kids use my left arm as a pillow as they like to do when we are snuggling.
• I had to abruptly wean the boys from breastfeeding and no longer have that as a tool for comforting, quieting or settling them to sleep.

These limitations change almost everything!  

• Morning routines
• Diaper changes
• Feeding Elliott
• Naptime routines
• Bedtime routines
• Sleep locations

There will likely be some growing pains as we try to figure out what will work, and big feelings as we grieve the way things used to be.

However, there are many positives to the situation too!

• Adam and I are working closely together to manage the care and maintenance of Curly and Zolvie.  Acts of service and quality time are some of our top love languages and so we feel more in love and connected than ever.
• There are still many many things I CAN still do with no or minor adjustments to how I accomplish them.
• I was going to have to wean anyway because of the immunosuppresant drugs I'd be taking after transplant, and I'd rather be coping with the effects of weaning now than at the same time I'm recovering from open heart surgery!!
• I'm now going to be listed as a status 1B, and am looking at a much reduced wait time, possibly a few months or less.  I could have a new heart before Elliott is a year old!

Heart Failure to Transplant: Inotropes After All

The following post went up on my CaringBridge journal on Jan 5, 2015:

On Monday I had a regularly scheduled follow up with Dr Weisshaar, my main cardiologist at Kaiser. We were able to have the appointment by video chat, to save me the stress of travel.

During the appointment we discussed how I have been doing. In essence, we came to the same conclusion that the ER doctor at Kaweah did. I am slowly declining . I get tired more quickly, and take longer to recover. I'm having more payback days.

Dr. Weisshaar was concerned about this because she doesn't want me to lose so much capacity or muscle mass before I am transplanted that I have a hard time recovering.

She explained that as a Status 2 priority Type O candidate, I could be facing a wait time of up to two years due to the shortage of organ donors. The only way to get a transplant sooner is to move up to a higher priority status level.

Quick review of the status levels: Status 1A means that a person is in the hospital and urgently needs a transplant. 1b is for those who can stay at home, but are on invasive external support like a left ventricular assist device or continuous IV medication. Status 2 is everyone else who needs a heart transplant.

She said there were two ways for me to be upgraded to the next level, status 1b. The long shot way is we could petition the national organ transplant organization and ask that they make an exception and categorize me as 1B, just because I'm declining quickly. Or two, we could start me on IV medication which automatically gives me 1B status.

I agreed to the second plan, and Polly who has been helping me with the house and kids, drove me up to Santa Clara on Tuesday morning.

When we arrived at the heart failure clinic, they informed us that there were no beds available, and to come back after 3 o'clock once more patients had been discharged. So Polly and I had a very pleasant afternoon in Santa Clara and environs. First, we went to a very good Mexican restaurant and enjoy a long leisurely lunch. Then we drove down El Camino Real through Sunnyvale and mountain view, and headed south on Highway 85 and back east on homestead. Homestead took us right past apples news office complex under construction in Cupertino. We finished off our afternoon enjoying decaf mocha frappuccinos on the patio at Starbucks.

Back at the clinic bed finally became available and the room was clean and ready for me by 530 or so. They started me on the dopamine through a regular IV.

I began running a low grade fever probably related to engorgement, and also became nauseated which may be a side effect of the dopamine. After a dose of Zofran I felt much better. However I did not sleep well that night between discomfort of engorgement and a nagging cough from the tail end of a cold.

The next morning I was visited by Dr. Nishime and a Fellow from Stanford during rounds. She prescribed cough syrup with codeine to help me rest. It kicked in right away and I slept from 10 to 2. Around 4 o'clock, the technician came to put in my PICC line.

I declined the cough syrup with codeine the next time it was offered but took it again at bedtime. I slept from 10 to two again, and woke up coughing when this syrup for us. Wore off. I was awake for about an hour after that calming down my cough, relieving some of my engorgement, and getting my vital signs checked. Just before 3 I took a second dose of syrup with codeine and slept hard until 715.

Then this morning I found out that there was some miscommunication between Cedars-Sinai and Kaiser, and I have not been placed on the list yet, pending the results of the additional testing requested. So I got an emergency appointment at the Women's Clinic in the medical office side to have the Pap smear completed. Normally pap smear results take 1 to 2 weeks to process, but the OBGYN said she would see if she could get it expedited for us. The other tests have already been completed.

Not being listed yet just means that I have not been accruing wait time. How long a candidate has been waiting is one of the factors that goes into determining who is offered available organs. I know God has control of the timing regardless, so this does not bother me.

Everything is on track for me to be discharged tomorrow after they fit me with a life vest (external defibrillator) and teach Adam and I everything we need to know about the continuous IV pump.