The 'What is my future going to be like?' is a question that has been coming to my mind lately. Partially because now that I am 18 years old and just a few months away from graduating high school; people have been asking me about my plans for college and the rest of my life. It's a scary thought, for any young adult; having to think of their future and making decisions about it. But for me, as a chronically ill teen it seems even tougher.
What will I do about insurance? What about if I have to go on my parent's insurance and their premiums sky rocket? Will they have to sell their home? Will we have to move out of state just to get better insurance? Will my mom have to get a job? What will happen to my dad's small business?
What will I do about covering for a heart-lung transplant? In the state of Arizona, once you turn 21, the goverment will not pay for the transplant. A lot of people just ask 'Why not get it now?' the answer is, my quality of life is too good. People have the misconception that if you need a transplant, you should get it right away. They also believe it fixes everything. It doesn't. Transplants are tricky things. Here are some things you should know about heart-lung transplants:
- You don't want to get it until you ABSOLOUTELY have to! (this goes for all transplants.)
The reason you wait as long as possble are:
- According to my transplant doctor in 2007 - 2008, less than 50% of patients are alive in 5 years after reciving a heart-lung transplant. - I want to wait until 5 years is EXTRA time to my life. Right now, 5 years is NOT extra time because I am doing so well. I have a life, when I stop having a life because of my heart and lungs is a time when we talk about transplants. The doctors said that they go off numbers but also how I as a patient feel. An example they gave me:
- My pressures (in my lungs; not high blood pressure.) could be 100, but my quality of life could be WONDERFUL, so despite the large numbers; the transplant would not be needed. But if my pressures were 80, but my quality of life was horrible, then we would start talking about transplants. It comes down to quality of life, not just numbers and science.
- Another reason is medically technologoy. The longer I wait, the more research is done into transplants. With more research comes better medicines, better medicines means less chances of infections and rejections; meaning my chances of living past the 5 year mark becomes better.
But the main reason to wait is really quality of life. My life is too good to chance it with a transplant that would cut my life down to less than 5 years when at this point in my life, there is no time limit!
Some other concerns with my life as I become older:
What will I do about having money while being a full time student? I know that I would not be able to work and go to school without jeopardizing my health. Heck, going to high school and being a full time pateint is tough for me to do!
What about if I get sick and have to drop out of college? Will that happen to me? If so, can I pick up in college where I left off? Or will I have to repeat?
Will I ever find a place that will hire me even though of my pre-existing condition? I know being a nurse at a hospital should have good health insurance. But usually that hospital only lets you go to certain other hospitals (if not itself), and what if those hospitals aren't the ones that are best for me and what I need done?
For the longest time (actually, all my life.) I depended on my mom and dad, as do most kids living with a Chronic Illness. For the longest time I only got scared when I went into the hospital. But now as I grow older, I become scared about more than that. I am starting to share the burden of the insurance issue as the major problem.
But also just trying to figure out my health. Right now my Thyroid is going crazy, and my pottasium is really low. I am exhausted 24/7, going to school has started to become a problem for me. I sleep almost all day on the weekends and even then I am still sluggish and tired. We are hoping it's just because of the Thyroid and once I get some medicine it will help. Keep your fingers crossed for me!
If any of you who are reading this are doctors to pediatrics or young adults, please take this to heart. We have a lot going on in our lives. We are trying to live a normal life while we have the burden of our health and sadly, sometimes insurance problems on our shoulders. Meanwhile we worry about grades, finding a college, trying to decide if we can work while we go to school and also trying to have a "normal" life. Life as a Chornically Ill Teen and Young Adult is not what people think it is. It is a sad, miraculous, triumphant, dis-heartening and frightning life that we live... please try to be understanding.
Love and Hope,