A letter to JHC about Sarah
Dear JHC,My daughter, Sarah was born with a hole in her heart. Soon after she was born she was given her first EKG. Watching her laying there covered with wires and so frightened, was the hardest thing I had ever done. I had no idea what would lay ahead for me and for my child.
Sarah was born in a military hospital, which lacked the sensitive equipment needed to properly diagnose her, so she got her first ride in an ambulance at three days old. At the Hospital in town, they did an ultrasound on Sarah. The results of that ultrasound and the fact that she ate well, had a normal amount of energy, and had good color, convinced the doctors that the hole was not too large and that it would likely close up on its own.
Then when Sarah was six months old, her doctors sent us to Fitzsimmons Army Hospital for a cardiac catheterization. As a result, the doctor discovered that the hole in her heart was actually bigger than they first thought. So, the decision was made later to perform open heart surgery.
When Sarah was eleven months old, she had open heart surgery at Denver
Children's Hospital. The doctors took pictures of here heart and measured the blood pressures in her heart and lungs. They were shocked to discover that the hole was actually the size of a dime. Because of the placement of the hole, blood had been backing up into her lungs, causing damage to the vessels there.
Her surgeon decided to do a lung biopsy to see the extent of the damage. We were warned that if the damage was to great, she may not survive the surgery. On the other hand, if they didn't do the surgery, Sarah wouldn't live more than a few years. We let our families know what was happening, and within a couple of hours people across the country were praying for her. The surgery took a couple of hours, and we had to wait a week for the results. I will always remember what the doctor said after he went over the results. He had a big grin on his face when he said, "I can't explain it. When we did the biopsy I wouldn't have given a ten percent chance of being able to do open heart surgery. However; there is really very little damage to the lungs and what damage is there will heal."
I smiled through the tears at the doctor and said, "I can explain it. Christ answers prayer!" Sarah went home after three weeks with a fully functioning heart. With medicine and time her lung pressures returned to normal. Within six months she was off all medication, and except for annual cardiac visits to make sure everything continued to be OKAY, the doctors thought we were home free.
Then, when Sarah was five we took her for a routine cardiac visit. Another ultrasound was done and her cardiologist found that her lung pressures were slightly elevated. He decided to wait and see what happened. By the next annual exam, the blood pressure in her lungs was seven times higher than it should have been. After another cardiac catheterization, she was diagnosed with a disease called "Primary Pulmonary Hypertension". "PPH" is a lung disease which causes blood vessels in the lungs to become ridged and to grow very slowly, if at all. Sarah was put on two vasodilatation medicines, including a medicine called Flolan. Flolan must be administered directly into the heart which meant Sarah had a catheter placed in her chest. It was threaded through a vein that leads to her heart. Hooked to this catheter was a four pound pump which she wore in a small backpack. The pump gave her a measured dose of Flolan every minute. This pump ran 24 hours a day. I had to mix her medicine and hook it up to her pump once every 24 hours. Three times a week we had to clean the site where the catheter entered Sarah's chest. At first she had to have blood test twice a week, but after about six months the frequency gradually went down to every three months. Though this was stressful on our family, we adjusted and soon all this was just a normal part of life. Sarah was amazing, here faith in Christ allowed her to accept theses things as part of her life, and most people who met her didn't even know she was sick. The only thing she actually complained about was that she could no longer go swimming. The pump was not water proof and the chance of infection at the catheter site was too great. Unfortunately, her pulmonary pressure remained high, (the Flolan only brought the pressure down by half) but considering everything that was happening, she seemed to be doing well. That is until October 2000. She contracted pneumonia and within a month she was diagnosed with "Cardiac Failure". At this point her doctors said Sarah needed a "heart" and "double lung transplant". Her heart and lungs had given out and if she didn't get these transplants, she would die within a few months. They quickly put her on an additional medicine to help her heart pump better. This added yet another pump to the number she was already wearing. This new life saving medicine also put her on the ˜top" of the "transplant list". We were told that the normal wait at the "top" of the heart transplant list was usually around 4 to 8 weeks.
By March she couldn't walk more than a couple of yards without becoming extremely fatigued. Her body was retaining fluid at an alarming rate. Her doctor confided in us, that she probably wouldn't live more than a month or two. We are very involved with our church. The people there were doing everything they could to help us. It was around this time that Mack Mahoney heard about Sarah and contacted our church to see if he could help. Our insurance would cover the cost of the transplant, but following the transplant, there would be many out of pocket expenses that would not be covered. Mack assured us that Jesica's Hope Chest, Inc. would help us with the extra cost. The biggest expense was the fact that we were required to live no more than five miles from the hospital for a period "three months" after
Sarah was released from the confines of the hospital. The cost of maintaining two households was more than we could handle financially. The city of Chapel Hill, NC which the hospital is located, is a very expensive place to live. Of course, Sarah's Dad had to return to work, which meant he would need to return home. We would need a place for me and Sarah to live, for at least three months. Sarah received her heart and lung transplant on June 15, 2001. The surgery took eight hours. With the exception of a couple of small set backs two weeks after the surgery, her recovery was quick. However; recovery from "transplant surgery" is never easy. Sarah's body was very weak at the time she received her new heart and lungs. Getting her muscles built up while recuperating was a lot of hard work. She had spent two weeks in the ICU, and then two more weeks in a room on that same floor. After a month in the hospital we were thrilled to learn that we could rent an apartment as long as it was near the hospital. Mack did exactly what he said, JHC paid our rent, and utilities the whole time we were there. Then, after three months, Sarah was allowed to go home. Shortly after we returned to our home we had the opportunity to meet Mack and Nita Mahoney of Jesica's Hope Chest. Since then they have continued to help us whenever the financial burdens of Sarah's medical cost are more than we can handle. Their financial as well as their emotional support has helped ease the stress on our whole family.
A major transplant is not a cure. It is only a trade! It is a matter of trading an 'unmanageable' disease, for one which is a little more 'manageable'. For the rest of her life, Sarah will have to take several very expensive medications costing around $2000 per month. In the long run these medications will become extremely hard on her body. She will always be susceptible to serious illness because of her suppressed immune system. And she will always have to undergo periodic medical procedures to make sure here organs are functioning properly.
But this transplant has given her the chance to live a reasonably normal life. And like Mack says, who can put a price tag on that? We have certainly learned that life is not easy, but by the grace of the Lord God, a little help from Jesica's Hope Chest and the support and friendship of Mack and Nita Mahoney and of course the people at our church, we will face each day with a little more HOPE!
Thank you JHC,
Susan,
Sarah's Mom