I Want to Go Home
I want to go home. I want to go home. I want to go home. Those are the 4 words I kept saying to myself for the past 6 months that led up to my ultimate decision to start my home hemodialysis (HHD). I grew tired of the constant alarms going off in my ear and the pressure I felt to comply with a clinic’s strict “schedule.” I decided enough was enough and that is when I spoke with my wife, who is my care partner, and we both decided it was time to start our HHD training.
My wife and I both knew that that learning the ins and outs of HHD would not be easy. The training would be extensive and would require us to spend 6-8 hours a day, Monday through Friday for 4 weeks in a training setting. Heck, this training was going to essentially take over our lives. Still, our persistence, drive and determination got us through. We eventually learned all of the bells and whistles of the cycler, how to cannulate myself (much easier than I even expected), and how to handle emergencies. It was an exhausting process, but we are more educated and stronger because of the training.
Training was not easy. There were several times we felt so overwhelmed and stressed that my wife and I thought about throwing in the towel, forcing me back into an in-center environment. However, after several nights of recurring nightmares of being trapped in a clinic, I pushed myself and encouraged my wife not to quit. And, being the stubborn and self-driven people we were, we managed to get through the training.
Once training was done, and we were home, I won’t lie—we were scared. While training, we had a tech right there to help us whenever an alarm went off and to answer any questions we had. Once on our own, we had to call if there was a problem and troubleshoot it ourselves with no “professional” back-up. During those first few weeks, as we were making the dialysis solution, there were a few nights when we found ourselves on the phone with tech support while alarms blared in the background. Everyone we spoke to was very helpful and walked us through how to fix the problems. After a month or so, everything began to run smoothly.
HHD seemed overwhelming at first, but the nurses teaching us took good care of us and went over everything, so it was easy to understand. They gave me and my wife the roadmap and counseling needed to go home and take my care into my own hands—and who knows you better than yourself?
Once home and on our own, so to speak, I knew that HHD meant adapting and adjusting to a new way of life. I believe that the best way to approach the “intrusion” of HHD on your daily/weekly life, outside of its medical necessity for your health, is to continue to do what you like to do and simply realize that all of the time you spend sitting can be turned into “your treatment time.” If you spend time paying bills online and viewing websites, watching television and reading, all these things can and should be done while you must remain seated in your dialysis chair for two to three hours. Constantly improving your pre- and post-treatment processes will give you back even more time. I rejoice in the fact that if some aspect of one of my treatments doesn't go as smoothly as planned, I'll have the opportunity the next day or the day after to get it right.
Doing my treatments at home has allowed me more freedom. When I had to do treatments in-center, I felt trapped. Home hemo has allowed me to feel physically and emotionally better than in-center, partly because I’m able to do more treatments per week…and partly because I don’t feel useless while doing treatments in a clinic. There is light at the end of the tunnel, and when things are going well, home hemo allows me to do pretty much anything I can do with functioning kidneys.
The benefits of HHD are amazing. The best part about home HHD is the freedom from diet and fluid limits. I like that I can dialyze when I want to. Sometimes, when I am too tired and in no mood for two thick needles in my arm (and if I haven't put on too much fluid weight), I can skip a session. This was simply not an option while doing treatments In-center dialysis. My Kt/V has significantly improved, and I have more energy to exercise, work and spend time with my family. I no longer experience “dialysis wash-out!!”
Our journey has had a lot of bumps in the road and has not been easy on us, especially for my wife, who handles a lot of the procedural parts of the process, from setting up the cycler, to breaking it down after treatments. Despite the obstacles, HHD has been my best shot at leading the life I was meant to lead had kidney disease not hit me. There are risks. But, I would say the risks in the hospital or a dialysis center are far greater. With proper precautions and training, the risks can be taken care of. Dialysis at home is much gentler, which reduces the chance of anything untoward happening.
There shouldn’t be stigmas surrounding people on dialysis. People with kidney disease should not look at dialysis as a barrier, but to look at it as an obstacle to overcome. If you put your mind to something there is no other outcome than success.
My personal experiences with ESRD, CKD and HHD have motivated me to write a book about kidney disease and life after diagnosis. You can read all about this book and my personal story at www.jeffreyparke.com
People who have chronic kidney disease, CKD, can live full, meaningful and purposeful lives. I do. Believe me, if I can, you can, too. It’s not easy. It takes deciding to live, hard work, willingness to change, self-education and lots of support—especially during those times when all you want to do is give up and give in.
I’ve been in that well of despair more times than I care to remember. But I didn’t give up. Somehow, I discovered strength I didn’t know I had and the support I needed to keep on fighting. In the process, I found a new meaning and purpose for my life that keeps me on track and looking forward to each new day.
My purpose—my mission—is to help my fellow CKD patients live satisfying and productive lives, to educate myself and others and to improve the level of care. I’m proud to be a member of the CKD community. I salute my fellow warriors. Thank you for being committed to helping one another and making a difference.