Slowly we are adjusting to the new routine, the new life. Some things will change again when my husband attempts to go back to work. His life will literally be work, dialysis, work, dialysis, work, dialysis.
During the day I'm ok, life goes on as normally as possible, but at night when the house is quiet and it is just me, I cry. I'm not sure anyone can really understand how hard it is to watch someone you love suffer and struggle with a life threatening illness, unless they have been there themselves. I don't sleep anymore, I can't. My mind doesn't shut off.
People believe because my husband is on dialysis that everything will be ok now. Sadly that may not be true. 1 out of 4 people die on dialysis. 1 person dies every 2 hours waiting for a transplant. While dialysis is a wonderful invention, it isn't a cure. It is simply a way to prolong a kidney failure patient's life until a new kidney can be found.
I am filled with hope about our future, but that doesn't stop the tears. It is a constant emotional up and down. Every morning when I wake up I check on Hubby, I ask him how he is feeling, I worry about the headaches he suffers every day. If he has a pain, I get scared it is an infection. If he is extra tired, I worry that the dialysis isn't doing it's job. The worries don't go away... I can forget for a while, but the thoughts and worries do return.
It's lonely. I have no one to talk to that has been or is in my shoes. I cry alone. Even though there are a lot of kidney failure patients and families that take care of them, it isn't something anyone around me has really been through. When I asked at the hospital about a support group, I was told that there aren't any. They said that patients spend so much time dealing with their failing health that they don't want to sit around and talk about it.
My family signed up for the National Kidney Foundation walk a few years ago. Sadly my younger daughter and I came down with a really bad chest infection, so we had to stay home. My husband and older daughter did the walk. Hubby doesn't take a lot of pictures. When he arrived home he showed me what he took. There was one of him and my daughter, one of my daughter, and one of a sign. That is how much of an impact it had on my husband, enough to take a picture.
I received an email from our local Kidney Foundation the other day and a few sentences really hit hard...
"PKD is one of the most common, genetic life-threatening diseases affecting more than 600,000 Americans and 12.5 Million people worldwide. PKD affects more people than cystic fibrosis, muscular dystrophy, down syndrome, hemophilia, and sickle cell anemia COMBINED! However, it is a widely unknown condition and the least funded of all of those diseases.
Polycystic is a condition where "many cysts" form on each kidney, ultimately causing renal failure. There is no treatment and no cure, with dialysis and transplant as the only options to prolong life. If a parent has the disease, there is a fifty percent change it will be passed on to their children. With no cure and no known treatment, this is why we ask for your help to change that."
The part that was hardest to read is the part about children. Knowing that this is a possibility breaks my heart. It is hard enough to watch my husband struggle, I can't watch my children go through this. So I pray and pray hard that God will spare our younger daughter. Hubby adopted our older daughter, so she will be ok.