In my writing I want to be able to educate and give true experiences on being listed for a heart transplant.  In my daughter Lauren’s case she was in CHF.

What is congestive heart failure (CHF)?

Heart failure describes the inability or failure of the heart to adequately meet the needs of organs and tissues for oxygen and nutrients. This decrease in cardiac output, the amount of blood that the heart pumps, is not adequate to circulate the blood returning to the heart from the body and lungs, causing fluid (mainly water) to leak from capillary blood vessels. This leads to the symptoms that may include shortness of breath, weakness, and swelling.

Understanding blood flow in the heart and body

The right side of the heart pumps blood to the lungs while the left side pumps blood to the rest of the body. Blood from the body enters the right atrium though the vena cava. It then flows into the right ventricle where it is pumped to the lungs through the pulmonary artery. In the lungs, oxygen is loaded onto red blood cells and returns to the left atrium of the heart via the pulmonary artery. Blood then flows into the left ventricle where it is pumped to the organs and tissues of the body. Oxygen is downloaded from red blood cells while carbon dioxide, a waste product of metabolism, is added to be removed in the lungs. Blood then returns to the right atrium to start the cycle again.

Now it’s time for the truth. I am not going to say I am an expert, but we lived through it, and I am writing on our own experience.

We had a Dr.’s appointment with a Heart Failure Specialist in Boston Ma.  After a quick exam, we were  told
she was admitting Lauren right that day.

During that time, to be honest I had no clue what in the world was going on.  After a couple of days, a team of Dr.’s came in and introduced themselves  to us, they were the Heart Transplant Team.

They told us that they felt Lauren is at the point where she would need a heart transplant.  Her heart was getting weaker.

Trust me, it is nothing like in the movies.  If you need a transplant, you are not just put on the list.  You have to be accepted, and this is done by a committee within the hospital.  So many factors have to be considered.  It was a 4 day evaluation.  Number 1 factor was Lauren’s general health.  Next it had to be approved by your insurance, then they had to evaluate Lauren’s support system.   As you are going through this process, I remember praying that Lauren would be a candidate for heart transplant.  At the hospital where we were, the transplant team would have weekly meeting on Wednesdays.  In the meeting was the Social Worker, Transplant Team Doctors, and the surgeon.  They decide if you will be placed on the list.  The day was March 13, 2013 when the team came into Lauren’s room and said she has been placed on the Heart Transplant List as a 1A.  My thought was my daughter is going to live.

Not everyone is accepted to be placed on the donor organ list

Below is the evaluation process…..

Heart Transplant Evaluation

Patients who may be helped by a heart transplant undergo an extensive evaluation of their heart disease and general health by the Heart Transplant Team. The evaluation period is a time of learning for patients and their families. During the evaluation, the heart transplant nurse collects the patient evaluation information and presents it to the heart transplant team for discussion at a weekly meeting. The evaluation process provides information for the team to determine if the patient’s condition is severe enough for a heart transplant and if transplant is a valid option.

Typically, the evaluation includes two days of outpatient testing and interviews. Patients who are very sick may be evaluated while they are in the hospital. The evaluation includes assessments of both the cardiovascular system and the body as a whole.

Cardiovascular Tests

Cardiovascular systemassessments includes the following tests:

Chest X-ray and/or CT scan: Pictures of the heart and lungs
Electrocardiogram (EKG): Measures the electrical activity of the heart taken through patches applied to the skin
Echocardiogram: An ultrasound of the heart that reveals size and heart muscle function, as well as the valve function
Exercise stress test: Measures how well the heart is supplying oxygen to the body. Patients walk on a treadmill while their heart and oxygen levels are monitored
Right heart catheterization: Measures the pressure in the heart and lungs. A catheter for monitoring pressure is passed through a vein in the groin or neck and into the heart
General Health Tests

General health information includes a history of immunizations, medical information and dental health, as well as the following tests:

Pulmonary function test (PFT): Determines air volume in the lungs and identifies lung conditions that might be a problem after transplant
TB skin test: Identifies exposure to tuberculosis
Blood tests: Identifies blood type; tissue type; varicella zoster, hepatitis (A, B and C), toxoplasmosis, cytomegalovirus (CMV), and HIV; tests immune system, kidney and liver function and thyroid function.
Cancer screening tests: Determine if cancer is present. May include a colonoscopy and/or prostate specific antigen (PSA) for men, and a mammogram and/or Pap smear for women
Urinalysis and 24-hour urine testing
Peripheral vascular/carotid artery studies: Measure blood flow to the brain and legs, and identify any blockages in the blood vessels
Abdominal ultrasound: Checks for masses, cysts and aneurysms in the abdominal organs and blood vessels
During the evaluation, certain conditions may be identified that may prompt additional testing and consultations to further determine transplant candidacy. These concerns and appropriate treatments are discussed with patients and family members.

If the heart transplant team decides that transplant is the best option and patients agree, patients are “listed for transplant.”

Lynne