In January 2012 we took Rachel to our GP as she seemed a bit under-the-weather, they said she had a heart murmur and booked her into be seen in a months time by a specialist. However Rachel took a turn for the worse and was admitted to the Freeman Hospital two days later where cardiomyopathy was diagnosed.
This was such a shock as we had never heard that someone could go into heart failure through catching a virus. The hospital did all they could to slow it down, but unfortunately Rachel got worse and on the 1st of February she was placed on the emergency heart transplant list. On the 9th of February she was taken to PICU and placed on a life-support machine to give her heart a rest, leaving us to decide what options we had.
On the 10th of February Rachel received her gift of life a new heart. This day was filled with mixed emotions; that of great sorrow for the family that have lost a loved one, but so much relief and happiness that my child may have the chance to live.
We are so grateful to Rachel’s donor and her family who made the decision to donate their loved one’s organs, while going through the pain of losing a loved one.
Little is known or understood about viruses that attack your heart and more is need to highlight that this could happen to anyone. More action is needed to encourage people to register as a organ donor and make sure your family are aware of their wishes. Both my children and my family are registered organ donors and we are constantly encouraging others to do so.
Rachel is now 16 months post-heart-transplant and is doing well, we continue to ride the roller-coaster that is known as the transplant world.
Rachel has 5-6 weekly check ups at the Freeman Hospital, where bloods are taken ECG and ECHOs are carried out alongside a variety of other test and she sees her cardio-consultant Richard kirk and liaison nurses Julie and Terry. Rachel also has a low immunity to infection and has weekly ‘sub-cut’ infusions of immunoglobulin to boost her immunity.
We as a family live with the constant worry of Rachel catching a infection or going into rejection of her new heart. A child or adult with a heart transplant prognosis never changes.