Wake Up, Muscles!

It has been a long road in recovery the last 5 1/2 months, especially in the area of physical therapy. After lying in bed in the hospital for 7 weeks waiting for the transplants and 9 weeks post transplant, let’s put it this way: my muscles went into a long winter’s hibernation. Asleep. Dead sleep.

When I wast first “waking up” in mid or late July, I had no idea I would be so handicapped. My legs wouldn’t move, my hands wouldn’t raise up to rub my face or hair, I couldn’t even talk.

So began Physical Therapy, PT and the infamous Amelia. Wiggling my toes, ankle pumps, quad & glute pumps, sitting up, standing up, walking to the door of my ICU room & floor. I’ve never experienced such fear & pain in my life. Even getting moved from the bed to a recliner was fearful & painful. “If I fall on the floor…” was all that I could think. Amelia demanded a lot & wouldn’t take no for an answer if I wasn’t in excruciating pain. She was tough, but I learned that the only way through this was doing the exercises. Hard work, feeling uncomfortable & out of my comfort zone.

If you aren’t exercising, you need to start. My physicians told me repeatedly told me the only way that I was eligible to be the first triple transplant in Georgia, was my strong will, my exercise background of running marathons (18 between 2001-2007), and the fact that I was compliant to what they expected. My past fitness really helped and helps me now to recover.

Ok, so you probably won’t have three transplants in your future. You may be in a car accident, develop disease, get older, etc. if you smoke or heavily drink, you’ve increased your health risks for many diseases. Do you really want to settle for a low quality of life?

Stop the excuses: it’s too hot, it’s too cold, I don’t have time, I don’t like to exercise, I can’t afford a gym membership, blah, blah, blah. Find some music & walk. Park far away in a parking lot instead of circling like a vulture wasting time for someone to get out of the closer parking space. Go upstairs & downstairs in your house 10 times. Use soup cans to do bicep curls or straight arm raises. Move your body out of the couch and do something! If not for yourself, think of your family without you prematurely. I do a lot of painful exercises for my husband, Jack, & Chloe.

If you choose not to exercise, don’t be surprised that as you age or something happens in your health that decreases your quality of life.

Thank You and Reflections on 2012

New Years Day is always a time for reflection, and we have a lot to reflect on from the 2012. Going back to the beginning of 2012, we had much uncertainty, waiting for transplant calls and trying to hold things together.

Looking back at 2012, I don’t think of it as a good year or a bad year. It was an adventure, filled with dramatic highs and lows, and a lot of sitting and waiting. Seeing Stephanie pushed to the brink of death, only to be rescued by organ transplants at the last minute, then the slow and painful recovery.

We have much for which to be thankful. We thank God for sustaining us and delivering Stephanie from her failing organs, and for keeping our family together despite all the turmoil. His providential hand has been very visible through the past few years, and especially evident this year.

We are very grateful for the love shown to us by so many people, many of whom we didn’t know. So many of you generously and sacrificially gave to Stephanie’s transplant fund. It vastly exceeded our expectations, and every month when we get the bill for Stephanie’s medicines, we are very thankful for your help.

We are very thankful for Customer Effective, Joel’s employer. They stood behind us and supported us through it all with Joel’s unpredictable schedule, and we could not have made it without them.

Some lessons we have learned in 2012:

  • We are not in control. We think we are, and we make plans, but we aren’t in charge. Nothing last year went as we had planned, but in hindsight, we are thankful that it didn’t   I had to learn to trust others for things like caring for my children, buying groceries, making meals, things that we think we control.
  • Kids are resilient. They had some very difficult times with their mom being in the hospital, and still do even now during the slow recovery when she can’t do some things that they want her to. We try to teach them that it is OK to feel angry or sad sometimes, and how to deal with those feelings in constructive ways, and we point to the milestones of the past year to show how God has worked and is good. It forced us to be more open with them about life and death, and we could not shelter them from the reality that their mommy could have died. Parents, don’t try to protect your children from all bad news. This wold is a scary place and dying is a part of living, something that we all must know how to face.
  • Men, you should practice doing some of the things that your wife does—wash laundry, do dishes, cook meals, give the kids baths, comb your daughter’s hair. Some day you might have to do these things.
  • Never say “now that I have gone through X I’m never going to worry about the small stuff anymore.” It’s not true. You would think that living through a triple transplant would make you immune to worrying about stupid everyday stuff or petty arguments. It doesn’t.

Who Deserves a heart?

I have just passed 6 months on the transplant list and through talking with many people, I have found many people have misconceptions.

Misconceptions include: how you get on the list, what is your # on the list, how long you wait & why, and many more.

The waiting process is different for everyone. It is based on your body size, blood type, tissue type, and where you will receive your transplant.

The process of getting on the national transplant list, managed by UNOS (the United Network for Organ Sharing, a private, non profit agency, http://www.unos.org) is very difficult. Your specialists needed to have exhausted all other avenues of treatments, decide whether or not you can live through a transplant, be mentally and psychologically strong, and if you can agree to the contract with UNOS.

With UNOS, there is no way to cheat the system. The most sick patients (in the hospital) get organs first; if there is no one that matches that organ, then the patients very sick, but living at home receive the organ, and so forth.

Your fame, money, or powerful job status CANNOT BUY an organ. it just doesn’t happen.

Since Dick Cheney received a heart at 71, there has been more questions and accusations of cheating/buying. Does he deserve a heart at 71, when there is a shortage of organs and younger people are waiting? Who deserves to live? Some people bitterly say “at least now we know he HAS a heart.”

It comes down to Who you believe is in charge of life. Who chooses when life begins and end? Who has the power & might, Who created all things? If your worldview is based upon God, then you believe God gave Dick Cheney an extension life. If your worldview is based on chance and “common sense”, then you may believe that young people deserve to live and once you get “old” then you are not as important as a 37 year old with kids. When I was 19, I thought 37 was old.

Yesterday someone was asking me if I think Mr. Cheney deserves a new heart? Am I jealous? He’s 71, I’m 37 with young children. No, I’m not jealous or wistful or any other term. I am so happy for him and hope he helps to promote organ donation awareness. He has children & grandchildren that are rejoicing he is still alive. He is as important to his family as I am to my family.

At the same time, I am compassionate to the donor’s family. They are mourning the loss of a spouse or parent or son/daughter.

So who deserves a heart? Biblically, no one. We don’t DESERVE anything from God. He gives his grace and steadfast love to those who love worship Him. He loved us before we loved Him. ANYTHING He gives us, is because He loves us & has mercy on us.

Hurry Up & Wait

I’ve been actively listed for both a liver and a heart transplant. The testing last summer was intense, mentally, spiritually, & physically. Since I will be the first one at Emory University Hospital with this combination of organ transplantation, every part of my health, labs, and meds are scrutinized.

The waiting is the hardest part and transplant recipients of my support group (whom have tremendously helped me), agree. At first the waiting was extremely tough, because my doctors said it would be a 3-6 month wait for my body size, antibodies, and certain parameters. It’s approaching 4 1/2 months.

Today is day 144 of waiting. In some ways it has gotten easier – I’ve enjoyed Thanksgiving, Christmas, more quality time with Joel, the kids, and my family. I’ve been blessed even more with my friendships, encouraging me & praying for me. I’ve grown spiritually & learned more Scripture. I’ve really picked up my hobby of jewelry making & involvement with Let There be Mom.

There are some days I forget I am waiting & that the transplants will come.

But, there are often sick days & days the suffering gets worse. The pain increase, rapid heart rates (A-tacks), uncontrollable stomach pain and issues. Nosebleeds, sore lip and nose from wearing my oxygen tube. 84 pills a day. 84! I’ve had e-Coli , strep, sinus infection viruses, my dog died of kidney cancer, our first floor of the house flooded with sewage water, and my entire family is grieving with me.

Through this I have been truly blessed by my Heavenly Father. His mercy and steadfast love are poured out. He keeps His promises, Joshua 21:45. He keeps his promises to ME.

Joel has a fantastic job that allows him to work at home.
My mom does our laundry.
My parents watch the children.
My sister, Jenni, watches the children, gives them baths & feeds them , & cleans twice a week.
My brother and sister in law help with children and house projects and repairs.
My church family has done everything from cutting the yard, visiting me, having church with me at home, run errands, pray, encourage, and counsel me & Joel. Sit with us to help with the kids, provided meals, gas money for our trips. Unbelievable love.

It IS a struggle to wait, but the woman of Proverbs 31 uses her time wisely, regardless of her health. And that’s my goal.

The Perfect Woman, Wife, Mother

The perfect woman, wife, mother…otherwise known as the Woman of Proverbs 31:10-31. Ok, for the girls out there, this was always the impossible achievement taught to young ladies and women in church, schools, etc. There are so many descriptions, that turn into misconceptions about her: she’s the perfect wife to a successful businessman in the community; she’s wealthy, upper class, manages a large household, strong, hard working, caring, patient, never sleeps because she’s always staying up to sew & do laundry, and my personal favorite–“her children rise up and call her blessed.”

Any of you out there get called BLESSED by your kids???

The two things I can take away from this larger than life Christian woman are: she feared the Lord and she made the most of her time. These are two characteristics I can practice in my life, even in the hospital or at home. As a Christian, I have a healthy fear of God as I walk with Him daily. Knowing He’s my Heavenly Father who I can ask anything in faith, He’s also holy and just, and a Judge. Using my time wisely, I can spend quality time with Joel and the kids. I can read more, I can pray more, I can strengthen my friendships.

So, in my own life, I can apply principles of the Proverbs 31.

Sunday Morning Late for Church Blues

I heard this song “the Sunday Morning Late for Church Blues” when I was 12 & it described our family then, and describes my family until recently.

When Chloe came into our family, then Jack, we got acquainted with the Sunday Morning Late for Church Blues. To us, having young children made it acceptable to be late to EBC. As they have gotten older, the fighting, disobedience, accidents all started to be regular routines in trying to get to church. My hair and makeup, as well as Chloe’s hair had to be perfect. Our apperance mattered to me. It has always bothered me to be late and I know it’s inconsiderate, and I am willing to change it & do more to prepare for the next day.

However, as my health has been breaking down, it takes me a long time to get ready. I regularly have to sit down in a chair after I shower & get dressed. I am on oxygen, and have to take it off when showering or doing my hair, slowing me down more. I have to eat a nutritious breakfast (no Panera bagels for me!). Get my meds, purse and oxygen tank. Joel supervises most of the stuff with the kids. (except for Chloe’s hair & earrings). Settle the arguments from the kids, then drive 20-25 min to church.

So what am I learning?
On the surface… I cannot comprehend how one healthy person or couple without children cannot be regularly on time for church, and attend the entire morning. I just don’t get it. Sorry.

I don’t know why people with one or two kids can’t get to church on time and attend the entire morning.

Post 6 months transplants, being on time for church will seem like a breeze, even with driving.

Under the surface…do we really want to be in the Lord’s house and with other believers? Do we go, because we have to be in the nursery or see people or it’s good for the kids or the music is inspiring?

Or do we go because we know we need to minister to other believers; adore, confess, thank and petition to our Heavenly Father; we are bound by our covenant to other believers to educate their children, encourage, rejoice with with other believers?

Maybe I am being to tough on my fellow Christians, and I am apologetic if I was brash. If I was not terminally ill, I would not see it this way. Being in the hospital or shut in my own house on Sundays made me so grateful for this past Sunday and wish I could attend all services. But that’s not the way the Good Shepherd has for me right now.

Trials, suffering, and sorrow either turn us away from God or toward Him. Without my husband and my EBC family encouraging & admonishing me, I could easily turn away from Him. But in His great love and abounding mercy, He seeks me and provides peace for me.

My CHD Can’t Take Everything from Me

My life is out of my control. Not the regular, we ran out milk, need to stop to get gas, my house is a mess, we’re always late for church, couldn’t get to Publix while chicken is on sale, Jack hit Chloe / Chloe hit Jack/ Jack tells me “Chloe hit me back!”, Joel has to work late and he just told me at 4:30, company is coming over 30 minutes earlier than expected, I never sent John & Rima a wedding card & they’re going into their 2nd year of marriage. UGH!

No, this is the my life is completely out of control & I am having more & more parts of my life taken from me. My Congenital Heart Disease has worsened each month. Pain is increasing, comfort – gone. My days are dictated by my disease, schedule – gone. I’m not allowed to drive anymore – freedom gone. Few people truly understand the circumstances – separation/loneliness.

But, my CHD cannot take away many things. It cannot separate me from the Father’s hand. Romans 8:39 says, “nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus Christ our Lord.”

My CHD cannot take away my identity, values, or my core beliefs in life. I value eternal life, I value my husband & children and family, I value Emmanuel Bible Church. I value my true friends who have stuck by me and admonished me when I have doubts of the Christian faith. I value a healthy lifestyle and running.

My CHD cannot take away my imagination or senses. Even during a treatment, my mind can use imagery & be on a quiet Saturday morning run through downtown, no cars, no traffic, I can meet other athletes & canine companions.

My CHD cannot take away my lifetime of memories.


Living with my CHD, I struggle daily. On my days I feel worse physically, more fatigue or having more stomach problems, I have to fight depression. Sometimes overwhelming sadness comes out of nowhere and I can’t control the tears. Once it starts, I can’t mask my feelings. I really hate that I can’t hide it, because so many people kind of look at me with that “huh?” look. Like, they know I feel horrible, and they feel burdened for me, but they can’t think of something to say to help me.

Maybe I am too hard on people or too much of a burden on family & friends. But this is such a difficult journey. I feel like Frodo carrying the ring halfway across the world. I would like to have one day I can forget that I am terminally ill, that without 2 new compatible organs, I am slowly dying. Without this miracle, Joel will be a widower and Chloe & Jack will lose their 2nd mother.

I feel like wherever I go, I pull people down. I want to encourage and uplift people. And maybe I do, but for today, it’s just not happening.

My Lab Technician

Most people don’t have a friendship with their lab technician, mostly because they don’t have need lab work more than a regular physical or 2 times a year for a minor health problem. I never envisioned I would have a friendship with a lab technician based on the need to watch my blood chemistry so much.

My regular routine is a weekly blood test to measure how quickly my blood will clot, and monthly for blood chemistry. Then I received a home machine to test my clotting at home. However, lay week I have had several problems and required 2 test & this week I will have 2 tests. My insurance company really hates me.

Rosie is my lab tech in Greenville Lab Corp and we have really talked over the last year. Some days it’s small talk, some days are pure stress relievers. During my relapses, she’s my therapist. But over all, over the last 15 months, she’s been my friend & I am blessed to have her.

Dangerous Exercises for Heart Disease Patients

According to the ACHA, competitive or vigorous swimming and rowing are dangerous exercises for heart disease patients. Swimming, especially swimming alone, can be fatal if you are predisposed to dizziness, fainting or have an ICD implanted. The exercise is strenuous itself, but combined with unexpected injuries or possibly being shocked by an ICD is very dangerous.

The rowing machine is intense with a harder effect on the heart and can cause sudden chest pain or injury. It’s more intense than stepping, spinning, or any other machine.

I’m glad I learned this tidbit of exercise knowledge this weekend.