5.0 Living with Home Haemodialysis

Karen Pugh-Clarke, MSc, BSc (Hons) RN. Clinical Nurse Specialist for CKD at the Royal Stoke University Hospital,
Stoke-on-Trent, England, UK
k.pugh-clarke@keele.ac.uk

Introduction

A move from centre-based haemodialysis to Home Haemodialysis (HHD) may be life transforming. Nonetheless, the decision to dialyse at home is mainly yours, based on your assessment of the advantages and disadvantages of this treatment type.

“Home Haemodialysis has transformed my life as a kidney patient. No more battling with the traffic and the weather to travel to the unit, and no more waiting for the nursing staff to put me on and take me off the machine. I can dialyse in the comfort of my home in the knowledge that help is only a phone call away.”

Kathryn, 53 years old, on Home Haemodialysis for two years.

5.1 How often do I dialyse?

There are many options but these are the most common.

A major advantage of Home Haemodialysis in general is its flexibility. Patients are no longer subjected to the rigidity of IHD, as evident in the following patient testimonial:

“I dialysed at the main hospital haemodialysis unit for the first two years after I developed kidney failure. Although the doctors and the nursing staff were great, I found that the schedule was really inflexible. My haemodialysis slots were Tuesdays, Thursdays, and Saturdays at 5.30pm. This meant that if I had a work commitment in the evenings (I work part-time in sales), or a parents’ evening at my daughter’s school, I had to try and change my dialysis slot, which sometimes was not possible.”

Peter, 47 years old, on short-daily haemodialysis for one year.

Peter values the flexibility which has enhanced his health-related quality of life:

“As long as I do the required [dialysis] hours, I can fit my dialysis around my life. No more inconvenient, rigid schedules which made me miss things that I wanted to do. I feel that finally, after two years, I have my life back.”

5.1.1 Can I travel and go on holidays?

Travel can be scary on dialysis but it can have a positive impact on health-related quality of life, and keep you on Home Haemodialysis longer. Some people travel with their machine but many go to another dialysis centre where the nurses do the dialysis. Tips to take successful holidays include:

  • Ask your nurses about options for holiday dialysis.
  • Plan holidays well in advance.
  • Get appropriate travel insurance.
  • Take adequate supplies of medication with suitable storage facilities (e.g. cool bags for injections).

5.2 What is the financial effect of Home Haemodialysis?

There are some costs and some benefits to Home Haemodialysis2,3,4,5.

  • You will save travel costs.
  • You are more likely to be able to work.
  • Usually equipment is all provided for free but check if you will need to purchase any small equipment.
  • There may be some costs for power or water but these may be reimbursed depending on your country.
  • Costs can be incurred during the installment of dialysis machines and set up of the dialysis room.
  • Assistance with many costs through reimbursement schemes.
  • Some countries will offer payments for the care-partner to support you at home.
  • Medications should be similar.

5.3 Can I continue with my work, hobbies and sport?

You may need about a month off to learn Home Haemodialysis and to get into a routine at home. You will have some hours free for work during this time but less than usual. You can work as much as you feel able to do once you are independent and if you do daytime dialysis maybe you can do computer work at home whilst on dialysis. Talk to your employer about the options.

The only restriction for sport is what you feel able to do and making sure you do not damage your fistula or vascular access. Sport and exercise are important for a longer and healthier life on dialysis.

The only restriction for hobbies is time, particularly if you travel somewhere to do your hobby. and you may find you take up new hobbies that you can do on dialysis.

5.4 Can I keep a pet and do Home Haemodialysis?

Yes, you can have pets but it is important to keep them away from the dialysis equipment to prevent infection or damage to equipment. Many people have their dog sitting with them on Home Haemodialysis.

5.5 How will I feel on Home Haemodialysis?

Haemodialysis is far more than a medical treatment: it is, in fact, a lifestyle. It does have negative effects for patients and it also influences the lives of those around. However, these are often less when on Home Haemodialysis than centre-based dialysis.

About 3 in 10 dialysis patients do get some depression6,7. It is thought that the improved sleep quality and energy on Home Haemodialysis may reduce depressive symptoms8. If you think you may be depressed it is important to be assessed by a professional9.
Home Haemodialysis may be more lonely than centre based dialysis10.

“The thing that I missed most when I started dialysing at home was the company of the other patients on the unit. I really missed the camaraderie and banter. When I spoke to my nurse about this, she asked if she could put me in touch with a local support group for people who dialysed at home. Although the idea did not appeal to me in the beginning, I agreed and made contact with them. It’s been one of the best things that I have ever done. Me and the other patients meet regularly away from the hospital, and are able to support each other through the challenges of home dialysis. I don’t feel isolated anymore.”

Anthony, 57 years old, on Home Haemodialysis for three years.

It is useful to have a circle of friends and family to support you on Home Haemodialysis.

5.6 What will my care partner think (and do I need one)?

Care partners may be a spouse, partner, family member (e.g. parent, child, sibling), or friend, and have various levels of involvement in care. Some care partners may have full responsibility for the dialysis. Conversely, care partners may only have a limited involvement in the Home Haemodialysis process. Some people do not have one. It is important to note here that you will have other family members who see the dialysis at home and they should be included in discussions. Many family members are happy to have you around more instead of disappearing to the hospital all of the time. Children are very adaptable.

Care partners can have a number of stressors. These include loss of income, social isolation, fatigue, distress, depression, and poor physical health11. This may cause your care partner burnout syndrome.

Strategies that reduce care partner burden includes9:

  • Doing as much as you can yourself.
  • Providing respite care for care partners.
  • A peer support group.

This is the experience of two care partners:

“When we [the care partner and her husband] first went home, I was terrified that I was going to do something wrong. I felt quite overwhelmed by the level of responsibility that I had. I’m not a medical person! However, with the help of our dialysis nurse, we soon got into a routine, and I became much more confident at setting up the machine and needling his [her husband’s] fistula.”

Sylvia, 63 years old, care partner to her husband Michael for 18 months.

“I was fine in the beginning, but after seven months of being a full-time carer and dialysis partner, I began to feel the strain. I started snapping at my wife, but felt really guilty afterwards. We were lucky because our nurse spotted this immediately, and suggested that we access the respite care service. Carers visited three times every day, and a respite nurse came in to do the dialysis. I was able to take a two-week break, and visit my family in London. I came back feeling refreshed, and resumed my care partner role. I will definitely be doing it again in the future.”

George, 72 years old, care partner to his wife Alice for one year.

5.7 What effects does Home Haemodialysis have on sexual function and pregnancy?

Dialysis and kidney disease can reduce sexual activity and fertility. There is testosterone deficiency, impaired sperm, and erectile dysfunction in males. Females have irregular menstrual cycle and often no periods1,12,13,14.

Although sexual activity may be reduced but it is still very possible. In recent years, pregnancy rates and outcomes have improved. More hours on dialysis such as with Home Haemodialysis are one key reason15. More frequent dialysis improves both conception rates and pregnancy outcomes. It also increases male fertility by increasing testosterone level3.  
These encouraging results suggest a greater role for much more intensive dialysis in pregnancy3.

Pregnancy on dialysis requires planning, extra dialysis and extra monitoring, so it must be discussed with your doctor. If you do not want to get pregnant, contraception is still recommended.

References

1. Tennankore, K., Nadeau-Fredette, A.C., and Chan, C.T. (2014). Intensified home hemodialysis: clinical benefits, risks and target populations. Nephrology Dialysis Transplantation, 29(7): 1342−1349.

2. McFarlane, P., and Komenda, P. (2011). Economic considerations in frequent home hemodialysis. Seminars in Dialysis, 24(6): 678−683.

3. Evaluation medico-economique des strategies de prise en charge de l’insuffisance renale chronique terminale en France – HAS report 2014

4. Olsson J, Olsson P. Total cost analysis in Sweden: Comparison of 4 different dialysis modalities. Master Thesis, Business and Law School, University of Gothenburg. 2015

5. Benain JP, Baines R, Kohle N, Borman N. Key Success Factors and Drivers When Launching and Developing a Profitable and Sustainable Home Haemodialysis Programme. Poster presented at British Renal Society Conference 2017. Pending publication

6. Cukor, D., Peterson, R.A., Cohen, S.D., and Kimmel, P.L. (2006). Depression in end-stage renal disease hemodialysis patients. Nature Clinical Practice Nephrology, 2(12): 678−687.

7. Cukor, D., Coplan, J., Brown, C., Friedman, S., Cromwell-Smith, A., Peterson, R., and Kimmel, P. (2007). Depression and anxiety in urban hemodialysis patients. Clinical Journal of the American Society of Nephrology, 2: 484−490.

8. Suzuki, H., Watanabe, Y., Inoue, T., Kikuta, T., Takenaka, T., and Okada, H. (2014). Depression in ESRD patients: home HD is less depressive that than in-center HD. Journal of Clinical Nephrology and Research, 1(2): 1010 [retrieved 05/03/2017 from https://www.jscimedcentral.com/Nephrology/nephrology-1-1010]

9. Bennett, P.N., Schatell, D., and Shah, K.D. (2015). Psychosocial aspects in home hemodialysis: a review. Hemodialysis International, 19: S128−S134.

10. Tong, A., Palmer, S., Manns, B., Craig, J.C., Ruospo, M., Gargano, L., Johnson, D.W., Hegbrant, J., Olsson, M., Fishbane, S., and Strippoli, G.F.M. (2013). The beliefs and expectations of patients and caregivers about home haemodialysis: an interview study. BMJ Open, 3: 1−14.

11. Alnazly, E.K., and Samara, N.A. (2014). The burdens on caregivers of patients above 65 years old receiving hemodialysis: a qualitative study. Health Care Current Reviews 2: 118. doi: 10.4172/hccr.1000118 [retrieved 08/03/2017 from https://dx.doi.org/10.4172/hccr.1000118]

12. Soni, V., Pastuszac, A.W., and Khera, M. (2016).Erectile dysfunction and infertility. In:Minhas, S., and Mulhall, J. (eds.) Male Sexual Dysfunction: A Clinical Guide. Chichester, West Sussex: John Wiley & Sons Ltd.

13. Anantharaman, P., and Schmidt, R.J. (2007). Sexual function in chronic kidney disease. Advances in Chronic Kidney Disease, 14(2): 119−125.

15. Manisco, G., PotÌ, M., Maggiulli, G., Di Tullio, M., Losappio, V., and Vernaglione, L. (2015). Pregnancy in end-stage renal disease patients on dialysis: how to achieve a successful delivery. Clinical Kidney Journal, 8: 293−299.