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.

Huh?

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.

Blessings In My Life

Throughout my life, I have been on a roller coaster. Life is great…no, life is crappy. I am thankful for my health…my health sucks. I have the best family…we all had an argument at Christmas time. I love my dogs…why can’t they just pee outside 100% of the time? My kids are the most beautiful, loving angels…stop spitting on your sister!!!

Emotions may go up and down, but the blessings and gifts I undeservingly receive are my stability.

My God who created me, chose me for His own, gave His Son’s life for me…He gives & gives & gives. He gave me the gift of Congenital Heart Disease, showing me His power, might, and providential planning of the events in my life.

My husband, who is ever patient, giving, selfless. Joel tells me I am the most beautiful woman in the world…and believes it. He loves God and hates evil.

My children, who were predestined to be ours. Gifts from God, birthmothers who chose life for Chloe and Jack and who sacrificially gave us what we couldn’t have otherwise.

My parents and siblings who love me. Mom and Dad always put us first, making the best decisions possible, spending countless hours taking care of me and getting the best medical care possible.

My church family, Emmanuel Bible Church. I cannot ever repay the support they give me, especially during my 5th heart operation. Prayers, fasting, gifts, time, surrogate homes for my kids. Continued prayer, continued encouragement, sometimes rebuke.

Friends who give, talk, spend time, easily forgive when I have been insensitive or mean.

Caring and brilliant physicians, nurses, medical support system throughout my life who have sought to save my life, problem solving to give me the best options available. Incredible health care coverage and opportunity to University hospitals and CHD centers.

These are the most important things in my life and I am blessed to have them.

Lessons Learned

Overwhelming. Encouraging. Optimism. Normalcy.

Attending the Adult Congenital Heart Association’s conference in Los Angeles has been an invaluable learning experience. It will take weeks to process all of the information, but here is a brief overview of the things most impacting my life.

“I’m not dead yet!”. Anthony from the Pittsburgh area, ACHA Ambassador keeps a blog & repeatedly makes the point, I’m NOT DEAD yet. I’m not giving up, this chronic disease is not going to kill me yet. Anthony taught me the hope in transplantation. After I receive my new heart and liver, and be one of the 70% who survive the first 6 months, I WILL RUN MARATHONS again. As John Bingham, “the Penguin,” says, “Waddle On!”

“My 24 year old legs have varicose veins, and I’m normal.” one of the patients said. My scars, my varicose veins, my cyanosis (bluish tint) is a reflection of my vascular system. Among my friends at home, this is freakish. Among my friends in the ACHA world, I’m normal. I am NOT a freak.

“Just Do It!”. No, not Nike, but a CHD ( Congenital Heart Disease) therapist taught. Should I go to the party? should I go to the ladies night get together? Should we go on a family vacation this summer? QUIT shoulding all over yourself and JUST DO IT! Life is too short for everybody… Do what you enjoy ( anything safe and legal), spend quality time with family & friends, read to your kids, eat some chocolate. Enjoy EVERY DAY we are given and blessed to have.

“Don’t be afraid of the transplants! You will feel so much better, life will change! Go for it!”. Dave, an super advocate for transplantation told me. 4 months after his heart transplantation, he climbed Utah’s highest mountain. Hs inspirational music and faith and video gives me the kick in the pants to get up everyday and LIVE!

Talk!

How do you get the most out of your doctor’s visit, medical tests, or procedures? Talk, talk, talk, and talk more.

If you know you have a problem, get it across to the person in more than one way. Make sure they are listening, get acknowledgment that they heard you, repeat it.

Going for a blood test? Tell the technician if you have small veins, need a butterfly needle, or if you are going to faint if the vein rolls and they keep digging for blood. If the technician can’t get it the first time, ask for another technician. Emory University AUTOMATICALLY requires a tech to stop after one try.

Going for a cat scan or MRI? Tell them you are claustrophobic or anxious. Perhaps tell the physician & get a medication to calm you down beforehand. It’s better than freaking out in the machine and you can’t do anything about it until you get out. It’s not fun to have four people pick you up off the floor.

Routine doctor’s visit? WRITE out your medications you are taking, any symptoms. Any changes in your lifestyle/ health since your last visit. Write out any questions before you go. Take your spouse… Sometimes you need someone there to remind you if you forgot anything, to write down what the doctor says to help you remember.

If you don’t feel good about the situation, TALK!

California, Here We Come!

6 days left until Joel & I are leaving for California! I am so thrilled to be going to Los Angeles … the movie stars, the beaches, the outlandish homes. The lifestyles of the rich and famous.

We’re not going for any of these reasons.

Every two years the Adult Congenital Heart Association has a conference for patients and cardiologist. I learned about this conference at the beginning of February at Dr. B’s office. The timing didn’t give us much time to budget for it, so I wasn’t sure Joel would spring for this. But he wanted to go & give us the opportunity to better my health and outlook for the future. And God provided the money. We received a partial scholarship from the ACHA, provided by the physicians and surgeons donations, as well as my parents gave us money for the hotel.

So… We are going.

The conference has general education, as well as breakout sessions and a gala. Topics will include specific defects, transplants, nutrition, managing insurance, managing depression and anxiety (which can come from talking to Shirley at Blue Cross), and future technology.

Both my cardiologist, Dr. B, and surgeon, Dr. K, are going to be speakers to the physicians. My nurse is teaching about nutrition. So excited!

Shoes On Or Off?

Every time I have to get weighed for my doctor appointments or procedures, I always kick off my shoes (yes, I wear socks). It’s a habit I don’t really think about, but where did I learn that?

You could say that you can’t get a true body weight with heavy clothes or shoes on. And that is true. Jeans, shirt, & shoes could weigh um … 3 pounds? Depending on how big the jeans are and if you wear a size 13 athletic shoe, it could be more. But I don’t really feel like stripping my jeans and no one wants me to do so.

But the shoes gotta go. I hate getting weighed with shoes on.

I think I want an accurate weight, so that if I am tipping the scales, I can’t blame one pound on my shoes. OCD? Probably. Will it change? Probably not. Am I too hard on myself? Definitely.

Medication Mistakes

I feel so sorry for the 19 years old Texan mom to be who took an abortion pill, thinking she was taking an antibiotic her physician prescribed. (She used Safeway Groceries for her pharmacy). Her doctors are waiting & watching what will happen to the baby & the mom is on bed rest. They expect deformities & mental slowness. Safeway apologized & are paying her medical bills.

Across the country, there are needless medication related mistakes. From the manufacturer, physician, or anyone on the pharmacy team.

Always question the physician about the medicine is, possible side effects, interaction with other medications or vitamins/ supplements. When to take it, whether or not you should eat beforehand, etc.

In the case of the Texas mom to be, her medicine was mixed up because she was given the wrong medicine from the pharmacy team. She received another woman’s medicine who HAD THE SAME FIRST NAME. The worker didn’t check the correct name, but the patient didn’t read it.

READ IT! Just read the name, med, dosage, etc. It’s not hard. I’m not putting the entire blame on this mom to be, but she is partially to blame. Some mistakes have small consequences, but some have a huge impact. Unfortunately, it’s the child that will suffer.