A Creative Way to Find a Home HD Care Partner
Do you want to do dialysis at home, but don’t have a care partner? Here’s a way I found that worked for me.
I created a home dialysis nurse training program run out of my home.
Moving to a new area and living on my own, I had no family nearby or established friends, so I had to get creative to find a care partner to help me with home hemodialysis.
I am Lana Schmidt, 56 years old, of Liberty, IL and have undergone dialysis treatments for 12 years after being diagnosed in 2002 with acute kidney failure as a result of an auto-immune deficiency, Goodpasture’s syndrome. I was on in-center hemodialysis (HD) treatment followed by peritoneal dialysis (PD) treatments for the next 7 years. In 2010, PD stopped working for me, and I lay dying in the local hospital not sure what to do.
Taking my life in my own hands, I researched home HD methods online and discovered the NxStage Medical System One - which ended up saving my life. This home HD machine allows me to do shorter, more frequent dialysis in my home on my own schedule, which greatly improves my quality of life. I do dialysis 7 days/week for 2 hours each day.
At first, I did the dialysis treatments on my own, putting in my own needles, etc. The clinic that I started at just let me. They let others who were confident, also, so it wasn’t an issue. I was doing fine on my own, but then discovered that the State of Illinois had a home services program to assist the disabled. This program allows me to hire someone of my choice to help me with home HD and other household duties, etc., as a personal assistant, and the state pays them $12.25/hour. I thought about who could help me and who would be acclimated to such a medical procedure (not just anyone off the street would want to do it…) and thought of nursing students! So, I contacted the local nursing school and they let the students know about the opportunity. I interviewed and selected the students and it was through this program that I hired and trained nursing students to learn the specialized nursing skill of home hemodialysis.
One of the nursing students visits me each evening from 5.30pm-8.30pm, to set up the dialysis machine, manage the treatment, troubleshoot, take blood, and learn all about kidney disease, dialysis and specifically the NxStage System One. I created a checklist for the students to follow, and I walk them through the process. Within the first week or so, the student nurses can conduct the whole treatment without my help. In the past 18 months, I have trained 10 people and currently have 4 nursing students gaining this specialized hands-on nursing experience.
Even though I was fine doing dialysis on my own, having help took a huge emotional burden off me and allowed me to use my energy to do other things that were more fulfilling for me, like gardening.
The students really love it, in that, they don’t have the opportunity to experience so much “hands–on” in nursing school. This interactive training experience prepares the students for jobs in the nursing dialysis field plus, they are able to transfer these skills to other areas of nursing while they are studying.
Autumn Jackson, nursing student said, “ This experience has really advanced my skills in a specialized nursing area. I really enjoy my job. Every work day is a learning experience and I’m always eager to learn something new about kidneys and home hemodialysis .”
“I have thoroughly enjoyed the hands-on experiences I have had working with Lana. It has really stepped up my confidence and critical thinking (skills), which is one of the primary things a nurse needs, and has even given me a new appreciation for my own life. Her knowledge, optimism, and grace are incredible even despite the constant battles and choices she faces day by day ... ,”said, Melissa Robbins, nursing student.
I believe that creating this network of student nurses capable of assisting with home HD may bring the treatment to more individuals who depend on in-center treatment. Some states have home health care programs and they all vary. Check with your state to find out about what they offer.
In addition to training nurses for dialysis jobs, I am a national kidney patient advocate helping others, spreading the word about kidney disease and the treatment options available. I have my own marketing consulting business and use those skills to promote kidney awareness. I have nationally published articles on the benefits of home hemodialysis, commented on a variety of topics, including the dangers of kidney disease, rights and privileges of kidney disease patients, and the tests associated with kidney disease diagnosis along with speaking at national kidney conferences. I serve on the AAKP Board of Directors and am on committees with the Renal Network 10 and the Forum of ESRD Networks.
Need Help With Kidney Transplant
I am on the list to receive a kidney transplant, but after having had more than 20 blood transfusions, I have 100% antibodies. I have been told that I need a special drug, Soliris, to have a successful kidney transplant which costs $110,000. If anyone is interested in donating money to help me get a transplant, so I can do even more to help kidney patients, I can be contacted at:firstname.lastname@example.org
1636 N 703rd Lane
Liberty, IL 62347
or donations can be made at Paypal.
One of my nursing students said, ” If anyone deserves a kidney transplant it would be Lana, because she is always giving her time and energy to everyone she approaches and is always taking the best possible avenues to keep her body as healthy as possible and could do so much more to help others with having a gift of a kidney .”