When people ask about life after transplant, there are so many things that I have grown sick of hearing. When I really sit to think about it though, post-transplant life is CONFUSING.
Here’s the thing – Laura is healthy… but she’s also not. She is not sick right now – no runny nose, no cough, no congestion – nothing. But somehow, even though she’s not sick, she is sick. This is what chronic illness looks like.
As I type, Laura is beside me jumping in her jolly jumper in the middle of her playroom – and she is squealing with joy. Nope, not sick. This is definitely not a child with a life-threatening illness. She’s happy and she’s eating and sleeping well. She is reaching her developmental milestones and she is rarely ill. But still, she is living with a life-threatening chronic illness.
The reality of the situation is that transplant is NOT a cure. I wish it was and sometimes I can almost convince myself that it is – but it’s not. There are some serious complications that Laura is prone to. Here are some of the things that we may be facing in our future:
Coronary Artery Disease. Yes, what your overweight grandfather had. You know the episode of Grey’s Anatomy where Christina has to joke about pulling hamburgers and shakes out of an obese mans arteries? Yep – that’s Coronary Artery Disease. Laura could live her life eating well and exercising and still end up with Coronary Artery Disease at age 10. It’s one of those things about heart transplants that we still don’t fully understand. The best guess is that the medications that Laura takes to prevent her body from rejecting her heart cause plaque build-up in the coronaries but it’s still just a good guess at this point. In order to keep ahead of the disease, every year at Laura’s annual biopsies, she will also have a coronary angiography to check on her coronaries to make sure they are clear of plaque.
Just because she could end up with this while eating well and exercising, though, is NOT a good reason not to try. I feed Laura foods high in HDL cholesterol because it is scientifically proven to reduce the amount of LDL cholesterol (the bad kind that causes plaque) in the body. I will keep her away from fried foods and foods containing high trans and saturated fats because these are TERRIBLE for the arteries. I will ensure Laura receives a healthy amount of fiber and fruits and vegetables and lean proteins because again, it has been proven to help fight CAD.
So when you wonder why I won’t let her eat the dessert, candy, chocolate, deep fried or store-bought food that you are offering – please try to understand that I am trying to help prevent a disease that requires MANY transplant recipients to require another heart transplant.
Kidney damage/failure. Laura is down to two medications, twice daily. It is such an amazing accomplishment to already be where we are with her medications. She will remain on these two medications forever (assuming no radical changes that come from transplant research). She takes tacrolimus (prograf) and mycophenolate (cellcept) twice a day, twelve hours apart. These medications suppress her body’s natural immune response to prevent it from attacking the heart that beats in her chest and grows with her, but does not belong in her body. Laura’s heart is a foreign object and the body fights it as it would cancer – we have to prevent that from happening.
These medications are very necessary but in order to successfully suppress her immune system, they are also VERY strong. These medications come with many side-effects but kidney damage and disease is the most common and likely.
To prevent kidney damage, Laura has a minimum amount of fluid that she must take in every day to flush out her kidneys. At the moment, she needs 1200 mls a day but averages 1500 mls a day – that’s 1.5 liters of free fluid a day – not including the fluid found in her food. It is not always easy to get her to drink this much but it is necessary and if I have to turn on the TV, take her outside, sing to her or do headstands, I’ll do it – because I know that it wouldn’t take long for her medications to attack her kidneys.
The other preventative measure we have taken to help her kidneys is to take on a reduced sodium diet. Sodium eats fluid. We have limited ourselves (adults) to 1500 mg of sodium a day – one can of Campbell’s chicken noodle soup has just shy of 900mg of sodium and 11 Doritos chips have 280 mgs of sodium. This means that I make all of our meals from scratch because everything store-bought has insane amounts of sodium. I have always loved cooking but I would often use a can of soup or pre-mixed spices in my cooking – now I steer clear and use fresh herbs instead. Of course we still go out to eat from time to time but it means that if Laura has chicken fingers at a restaurant, we try to get her to drink an extra cup of fluid to help flush it out of her system.
Rejection. When most people think of rejection, they think of the moment the heart is put into the body. If it will be rejected, it will happen in surgery right? No. This is simply not true. Laura is ALWAYS at risk of rejecting her heart. Even with her medications, she can reject her heart. If Laura gets sick – even with a cold, her immune system responds to fight it off. Sometimes, while attacking the cold virus, a portion of her immune system might notice this other foreign entity in her body and try to fight it as well. This is why her getting sick is so scary for us. It’s not just that her illness could be severe, it’s also that any time her immune response kicks in, it is putting her heart’s cloaking at risk – it could get found out and evicted from her body.
Something that most people don’t know, however, is that there is a scale of rejection. Rejection is not the end – it does not mean imminent death or even that she’ll need another heart. There is a scale that ranges from 0R (0 rejection) to 4R (full scale rejection). 0 means that there is no rejection at all. 1 means that there are a few white blood cells found in the heart but they are not actively fighting the heart. 2 means that the body has discovered the foreign organ and is trying to convince it, lovingly, to leave. 3R rejection is when the body begins full fight mode – it wants this foreign object gone- yesterday. This is when signs such as fatigue, weight gain/loss, loss of appetite, lethargy, cyanosis (lack of oxygen), fever and other signs of infection show their colours in full force. 4R rejection is an acute rejection and requires immediate and aggressive treatment. There is no treatment for 0 or 1R rejection. 2R requires steroids, 3 R requires IV steroids in hospital and increasing the anti-rejection regimen. 4R requires immediate hospitalization and induction – meaning that they kill ALL of the immune system. This is the same that they would do for a person facing, for example, advanced cancers.
Cancer. Yep – because she doesn’t have enough risk factors. Laura is at a higher risk for developing all forms of cancer but just to add even more burden, there is a type of cancer known as Post-transplant lymphoproliferative disorder or PTLD lymphoma that only affects transplant recipients. We are always checking to ensure that Laura does not have any swollen lymph nodes as this could indicate that she has developed the beginnings of PTLD.
Illness and infection. The most common risk-factor for Laura will be illness and infection. She will get sick easier than most kids and the illness could be much worse. It won’t always be worse – so far she has beat her colds faster than we have but that may not always be the case. If Laura comes into contact with a child with chicken pox, we will immediately be admitted to hospital for IV antibodies. She can NOT receive live vaccines so she is not vaccinated against Chicken pox. If she comes down with chicken pox it can very quickly become life-threatening for her. That is what scares me the most about the anti-vax and delayed vaccination movements. These people are choosing not to get a vaccine that, frankly, isn’t going to save their child’s life. It is not likely that their child will die of the chicken pox, they’ll just be itchy and uncomfortable for a while. My child, however, may die. Their decision not to take advantage of advances in medicine and science means that my child could die. I just wish that they knew that…
These risks are VERY important to be aware of. Understanding the symptoms of these things can save Laura’s life if caught early. Understanding and knowing don’t mean that I have to dwell on it though. Even though we face these risks head-on every day, I will still take my daughter to the mall to shop with me because she loves the colours. I will still take her to the park to play and she will eat snow and she will love it. She will eat ice cream on occasion and on Halloween she will have candy.
Laura finished her first round of swimming lessons and she LOVED it. We go swimming and we visit other people’s houses. She loves her Aunt and Uncles dog and I don’t keep her away out of fear.
Laura received a very precious gift from a family who lost their baby. They did not give that gift so that Laura could sit in a bubble for the rest of her life – it was given so that she could LIVE.
So for now, I will accept that even though Laura is living with chronic, life-threatening illness, she is healthy NOW. I will continue to take her to swimming lessons and to build forts in the living room. She is enjoying being a normal baby – who am I to tell her that she’s anything other than just that?