By Alex Danis
No, the TRUE reality of life after a transplant is not one with rainbows, a beautiful sun and an incredible future, as we all believe.
In January 2015, I received new lungs. It is a gift I appreciate above all else and I am happy to be alive, to do activities that I never thought I could accomplish before and to fully enjoy life for the first time.
But my reality, like the one of many transplant recipients (especially young ones), is sadder than you think. Behind the curtains, the situation is difficult. Even if health is finally there, it is a tough task to recover.
I am talking here about money, debt, costly medication and psychological problems that follow.
I am talking about someone who, like me, was affected by cystic fibrosis before a transplant and has spent a lot of time in hospitals, in bed, or simply at home for treatments. Before the transplant, the illness and its treatment took a large part of our day and energy. If the target age is 20 to 30 years old for successful transplants, that time and energy would be used by a normal person to study, work, save, gain pertinent experience and grow in the job market while that time and energy is foremost for a recent transplant. For us, this translate into a constant inability to work the 40 hours a week needed to subsist, having to leave jobs, university/college courses or semesters for hospital stays. The schedule is sometimes too intense for our body to cope. These situations bring us to never being perceived as worthy of a promotion in an organization – due to our unpredictable health status.
With all this, debt accumulates and accumulates again. The credit rating becomes worse and worse as debt becomes the only solution. After months or years of going from job to job, classes to classes without any concrete experience for references, the transplant arrives. Life finally arrives. Yay! Oh well no, just no.
No work for another 6 months -MINIMUM- after the transplant. Six months with no revenue, six months of getting by, finding money here and there, six months of reliving shame to ask your parents to support financially, when you are supposed to have become a 27 year old « grown ass man ». And this deteriorates your relationship. Debts, and debts, continue to grow. They become even worse! Some will declare bankruptcy after a transplant. That is the reality of many.
Psychological problems arise, even more so than before. Anti-rejection drugs often cause many new psychological symptoms or increase those already present. And the continuous stress of your financial situation brings out all your demons. In my case, it was compulsive buying disorder and made the situation 1,000 times worse. I know others for whom it was drugs, alcohol or something else…
You find yourself happy to be alive, but the reality hits you back in the face. That is why research has shown that the suicide rate for transplant recipients is 15.7 persons out of 100,000 a year… in comparison with 9,0 for 100,000 for the general population, which is extremely significant.
Being 27 years old and having the experience of an 18-year-old kid on your resume is not motivating to an unthinkable point. Finding yourself at 27 with 12,000$ in debt, without counting student loans if you want to pursue your studies, is pride that crumbles. The future you always wanted after the transplant seems further and further away.
Also, after having spent your life going through all this hardship, the last thing you want is to having to kill yourself at work in a fast food joint for minimum wage. You are finally free for your hospital jail, you don’t want to lock yourself in another jail in the form of a kitchen or cubicle. So you cheat. You ask your family and friends to be fake references for fictitious employment that you held. You overstate the time you kept your jobs and the tasks you had to accomplish. You try to recreate on paper the person you would be today were you not born with the illness. However, deep down, it is humiliating. It is auto-humiliation.
You want to be professional, you are ready to work, but, because the illness always slowed you down, you must start again at the beginning of the race while those around you are at the finish line.
So you make yourself a mask. You don’t talk about it. You keep it to yourself because the people around you are happy for you and you don’t want to break that. You want to keep the image of the person who won against death and for whom everything rolls smoothly now. But inside, you stress. You cry. You are anxious. You are depressed. You ask yourself whether it was worth it to have had the transplant, if it is to live in this way.
So this is it, the dark side of living after a transplant.
We should talk about it!