April is National Autism Month. March was National Kidney Month. Janis is a fearless leader for Autism, so this month I wanted to share some of my experiences about kidney failure.
Most months when I write this blog, I make attempts to be funny and make you smile while reading my blog. I rant about things that bother me in this world. This month I’m going to go in a completely different direction. I’m going to tell you about a subject that is very important to me. A serious medical condition and a drive for organ donation. This is a subject that I have never really discussed openly to strangers, until recently.
So, I found out that I had kidney problems at a young age. At the time I didn’t understand what it all meant. I was just a teen who wanted to watch TV and dream about finally having sex. However, I’m going to fast forward to the summer of 2002. I went to my doctor a few times. I knew that I was getting sick. I was depressed. I was 30 years old, single, had a mortgage to pay. I was working in the city and coming home exhausted every day. At this point in my life, most of my friends were getting married and starting to have kids. This was the last thing I needed in my life. I had a doctors appointment on a Friday, and my doctor said I had to start dialysis right away. I cried briefly. I honestly didn’t know what to do, who to turn to. But I also knew that life would go on, and I needed to face this next challenge in life.
Just to give you a glimpse of life on dialysis, it’s three days a week for about four hours each time. It involves big needles and you have to be around blood. It is very hard on your body. For three and half years I got up three days a week at 6 am to be done at about 10 am, when I had to go to work. I stopped working in the city and started working locally. A lot of people that go on dialysis go on disability, I was single with a mortgage, so this was not an option for me. Traveling when you are on dialysis is very hard because you have to find a clinic that will take you. Plus going out of the country is almost impossible. You go to the same dialysis clinic three times a week, at the same time, with the same group of people. I was the youngest one there. You get to know and bond with those people, even though they come from all different walks of life. We all have this deadly problem and we all go through the same issues with diet, weight, medicine and most importantly, insurance. We are rooting for each other to have the transplant. We wonder if everything is alright if someone doesn’t show up one morning.
When I was on dialysis it was before the age of Netflix. So after I napped, I was able to watch TV. Basically, I binged watched on basic cable the Golden Girls, Dawson’s Creek and American Justice. There really isn’t too much on between 8-10AM every day. But I felt like I was a trendsetter. I was one of the first binge watchers. When on dialysis you have to watch your diet, what you eat, how much you eat. You have to watch your fluid intake. For a guy that liked to drink a few beers and eat whatever I wanted, this was a serious challenge. You also have two very large veins in your arm. It makes wearing a short sleeve shirt very difficult because I didn’t want people to look at me funny. I pretty
To be alone and sick is not fun. I had some great friends that were always supportive, but it still was hard emotionally and physically to go through this. There were many days where I needed to stay away from conversations because I knew the medicine was making me irritated, and I would be quick to bark at people. I wasn’t easy to be around. There were weekends that I did not leave the house. I was too tired and just wanted to relax and watch TV. It was a pretty depressing time. Sometimes when I think back, I wonder how I got through it. But I now think back to those quiet, alone weekends, and at this stage in my life, I WOULD LOVE to have a weekend like that again.
I was always embarrassed to tell people about my situation. I was young and didn’t want people to look at me funny (they do that anyway…), or feel bad for me because of what I was going thru. Many times I just wanted to tell a coworker about it, so they could understand why I looked the way I did some days, or why I was in a bad mood. But I always chose to keep it to myself. Sometimes in life, you feel like a teenager with how you look and feel. How people judge you. I think this is a terrible feeling. One should always feel the utmost confidence in themselves. I lost a lot of that confidence during those years. It is a feeling that no one should ever have to go through.
I was on the list for a transplant for over three years. I got calls that I was the backup several times over those three years. It gives you a false sense of hope. But I finally got the call on April 8th, 2006. I was told that the donor came from a very young girl in Minnesota. I have never met the family or communicated with them. I would love to, but I was never given their information. It is my mission to one day connect and thank them.
When I woke up the day after my transplant, I still remember two of my closest friends Mike and Danny standing over my bed. I tell them every year that I’ll never forget that. It meant the world to me that they were there. It was also
When I met my wife, I told her about my condition. My wife was like “so what… you are healthy now, and I love you because you are so fuckin handsome”. Ok, I lied those were not her exact words. I told her early on because I knew that she wanted children and my condition, Alport Syndrome, can be passed along to my children. She was amazing in how she handled the news. She wanted to know everything about the disease. These were more reasons for me to want her in my life forever.
When we decided to have children, We went to a genetic’s doctor because we wanted to find out if our children would be carriers. In short, we were told that if we had a girl she would be a carrier of the disease, and a boy would not. So our next step was to go to an IVF doctor. Where my appointment was at 8 AM to go in a cup. I am old and 8 AM is so early for that kind of action in a public place, plus their material was so outdated. Sorry got off the subject there, and wanted to make you smile. After all this, unfortunately, we only had one egg take and it was going to be a girl. My wife and I were devastated. We were going to do it again but as luck would have it, we got pregnant just before we started IVF again. When we did the ultrasound, we had already decided that no matter what the sex of the baby was, we were going to have it anyway. We were ecstatic to find out that we would be having a boy. We felt doubly blessed.
In life, when you have a friend or a loved one who is sick, one thing that you can do for them is just ask them how they are doing. Even a text, anything. We often take for granted the fact that we see this person often, and we forget what they are going through. Even now, I still don’t like discussing my condition but it still makes me feel good when someone asks “how are you feeling? Everything going good?” Trust me on this one.
My sons are too young to understand any of this. One day I will sit down and discuss it with them. It is a conversation that I am looking forward to, I want them to understand what I went through, in a good way. The positives of people donating organs. So many lives can be saved or changed like mine was.
Every year, I do a kidney walk for the national kidney foundation. Cameron has done it several times with me. He just enjoys walking over the Brooklyn Bridge with me. But he is getting a sense that this is a very important day for Daddy. Mommy and Daddy tear up a little each year, not just for us but for everyone there. People that have lost loved ones, people that had transplants, people waiting to have transplants. #DonateLife.
Michael Strange is a native New Yorker, now living in Connecticut. Husband, and father of two amazing boys. Kidney transplant recipient, and a big supporter of organ donation #donatelife.