A Creative Way to Find a Home HD Care Partner

This blog post was made by Lana Schmidt on October 9th, 2014.
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:

lanaschmidt10@gmail.com
217-617-2888
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 .”

Comments

  • Nieltje

    Nov 7, 4:21 PM

    Lana, I am in WV - and there is a nursing school at the university a block away, so I plan to contact them, and train some students for backup. May be good exposure for both of us. I write about my day to day experience on my blog

    journeyofalifeline.com

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    • Lana

      Nov 9, 11:33 AM

      Great! check to c if WV has a state home health care program , that is how the nursing students are paid. The nursing school would make the students aware of the opportunity I had, but bc I'm not a certified nursing instructor, they could not sponsor or endorse me as an instructor.

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  • Beth Witten

    Oct 13, 11:18 AM

    You mentioned fundraising for a transplant. A social worker friend who works in transplant told me she thinks one of the best fundraising resources for people seeking funds for transplant is the National Foundation for Transplants (NFT). It only takes 3% of the funds received for its administrative costs. It works with a list of volunteers you identify and can help identify others. It offers suggestions for fundraising for your volunteers. Its FAQ says "NFT will assist with event ideas, suggestions for making an event run smoothly, and editing of marketing materials (brochures, flyers, tickets, etc.). We also write appeal letters for you to send to friends and family, and we work with the media to share patient stories and promote upcoming events. We post all patients on our website so donors can easily click to donate in a patient's honor." NFT's FAQs warn that a patient raises directly may be taxable and can jeopardize Medicaid status. You can read their FAQs at the link below or call Connie Gonitzke at 800/489-3863. http://www.transplants.org/faq

    Another similar organization is HelpHOPELive, which used to be called the National Transplant Assistance Fund. It takes 4% of funds raised for administering the patient's fund. You can read FAQs about HelpHopeLive here. https://m.helphopelive.org/faq

    These organizations set up a restricted account under their non-profit umbrella for each individual patient. The real idea behind these organizations is that the PATIENT does the fund raising. People who make a donation to the patient, restrict it to their account. The donor gets a tax deductible receipt. The organization makes payments based on bills or receipts for allowed expenses weekly. Their FAQs discuss allowed expenses. The turn around is very quick. They are NOT meant to provide grants, though they have a limited few, for patients who have NOT done fund raising.

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    • Lana Schmidt

      Oct 14, 5:25 PM

      Thank you very much! I will contact NTF.

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  • Nieltje

    Oct 12, 11:04 AM

    I also use a paid caregiver. I take care of my 90 YO mother, and we have a CNa who comes mornings and evenings daily. My nurse included her in the home training - I do 99 percent of HHD myself. The only issue I currently have is a temperamental venus at an angle I cannot see, so I stick the arterial and she sticks the venus, and checks in me regularly, but handle most alarms myself .

    I do dialysis at my mom's house, where my daughter and grandkids live, and I live minutes away (by myself), that way there is always someone in the house when I dialyze. My 11 YO granddaughter is a doctor in the making, and loves to take the needles out! She is quite good, but she doesn't come cheap. I have to pay her $10 a pop! It goes to her college fund!!

    Recently, in trying to get some aid for my mom (who doesn't qualify) I found out I could get medicaid assistance for me thru an independent living program in our state. They will pay $8.00 per hour for up to 2 hours towards home care (we don't tell them about the needles). Every little bit helps.

    Since I am only 2 months into HHD, I want to build up more experience before truly trying it on my own. But my goal is to be able to put the machine and supplies in the car and hit the road. I've been a solo traveller for 20 years, and hope to keep on trekking!

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    • Lana Schmidt

      Oct 14, 5:38 PM

      good for u!
      yes kids are very good at dialysis. I had a young boy, 7 yrs old helping with some of the process, I also have a 16 yr old helping me who did it for her mother from 9-13yrs before she died. What state are you in?

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  • Beth Witten

    Oct 12, 10:10 AM

    It sounds like you are a very out-of-the-box thinker and you've found an innovative way to find a home dialysis partner.

    Checklists are a great way to make sure that all steps are followed. Did your dialysis clinic make the checklist or did you make it yourself? Has your dialysis clinic reviewed it? The ESRD regulations require dialysis clinics to verify competency of home dialysis patients' care partners. Does your clinic know you're training nursing students and has your home training nurse asked the nursing students who serve as your care partner to demonstrate that they are competent to do the tasks you've trained them to do? This is a creative approach, but others may not be able to train someone -- even a nursing student -- as well as you apparently have.

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    • Lana Schmidt

      Oct 14, 5:33 PM

      yes I created my own checklist. No, my clinic has not reviewed it. yes they know what I am doing. They have offered to train them for me. The students pick it up quickly. They are not as emotionally involved as many care partners may be... so the process is more straight forward for them... they learn trouble shooting, etc as we go along. in my situation, my dr & nurse know me & trust me. may be different for someone else. I did dialysis by myself for 2 years.

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  • Judith Poole

    Oct 10, 3:01 PM

    You are certainly resourceful, Lana. What a good idea. As far as raising money to cover medication so you can have a transplant - Have you considered using kick starter or other of the on-line platforms for raising donations?

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    • Lana

      Oct 10, 6:13 PM

      Thanx for your comment. When I looked at those websites they wanted 7% of donations... and they do not help in marketing the page. So I am doing my own marketing through email & using paypal which is only 2.9%.
      If you find one that doesn't charge that much let me know.

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