Living the Good Life: THE PATIENT PERSPECTIVE

Transcription

1 Living the Good Life: THE PATIENT PERSPECTIVE

2 My Journey of a Lifeline Avoided dialysis like the plague for 20 years Crashed in 2014 Wouldn t be here today but it wasn t convenient to die Opted for home hemo only long enough to put affairs in order Surprise! Started to feel better than I had in the past 20 years! Fiercely independent. Did not want anyone involved in my treatment but me Always asked questions! And respect the patient that does! Trained at home with an aide for emergencies only (and there were a few in the beginning) After the initial learning curve, my doctor signed off on my dialyzing without a care partner I dialyze In the zone Emergency procedures in place Irony is that I have become an active advocate for home dialysis, working with organizations, to promote the benefits of home hemo Patients can read about my journey:

3 Life on Dialysis The New Normal: Choosing the right treatment Daily Living: To Care or Not Traveling Myths

4 The New Normal It is important to choose the right treatment: Become informed: Help, I Need Dialysis! Talk to your family, doctor(s), and clinic, and other dialyzors. Choose a treatment that fits your lifestyle: My Dialysis Choice Understand that needs may change over time. Therefore treatment options may need to change.

5 Pros and Cons of Dialysis Treatment Modalities ts/modalitycomparison.pdf

6 Benefits of Home Hemodialysis Studies show that the outcome of patients on HHD, either short daily or nocturnal, is equal to or better than transplant recipients. Various studies have shown that HHD results in improved overall well-being Better fluid removal, less fluid restrictions Heart health Better waste removal Improved nutrition and appetite, less dietary restrictions and little or no binders 2-3 times better survival rate than in-center HD Most important, HHD results in an overall improvement in quality of life.

7 With or without a care partner, that is the question The care partner requirement is an FDA regulation, and like any prescription, it can be used off label, and can be overridden by the physician. Some patients need assistance to manage their treatments, and for them a care partner is necessary. However, the patient should be encouraged to do as much of his/her treatment as he is able. Some clinics want to train a partner to do all of the work. This is a good way ensure that the partner burns out and the patient ends up back in a clinic. This is your (the patient s) treatment. They need to own it. They need to do as much or all of it as they can. An engaged patient is a healthier patient. Other patients, because of living arrangements, do not have anyone available, and are willing to do their treatments alone. Informed consent should be the rule, not the exception.

8 Managing Home Dialysis YOU OWN YOUR DISEASE, YOUR DISEASE DOESN T OWN YOU! WITH HOME DIALYSIS, YOU FIT YOUR TREATMENTS INTO YOUR SCHEDULE. YES, IT IS MORE WORK THAN JUST FILLING A CHAIR IN A CLINIC, BUT TRADING EXTRA WORK FOR YOUR INDEPENDENCE AND HEALTH, INSTEAD OF COMPLACENCY, IS WORTH IT IN THE END.

9 Divide and Conquer WORK YOUR TREATMENT SET-UP AND BREAK-DOWN INTO YOUR FAMILY S SCHEDULE, THE SAME AS YOU WOULD ANY HOUSEHOLD CHORE. DON T BE AFRAID TO INCLUDE CHILDREN IN THE PROCESS. IF YOU ARE GOING SOLO, SPREAD THE TASKS OUT OVER THE DAY, OR ASK FRIENDS TO HELP. MAKE IT YOUR OWN: DON T BE AFRAID TO ADJUST THE SCHEDULE AS NEEDED TO WORK AROUND YOUR DAILY LIFE ACTIVITIES.

10 Living your life when dialysis comes home Don t let dialysis become the center of your home, incorporate it as discreetly as possible into your daily living. It should not consume your daily living. Work dialysis into your day, not your day into dialysis. Supplies Treatment Room Medical Equipment

11 Dialysis in the home: make it personal!

12 By air, sea or land: traveling on dialysis Arrange with your clinic at least 6 weeks prior to your expected arrival for: Supplies to be shipped OR Temporary in-center treatment at your destination

13 Tips for Flying Airlines are required to accept your PD or HD dialysis machine at no charge (limited exceptions) Always call ahead and explain in detail what you will be bringing (HD, PD, medical supplies) Arrange for a wheelchair, if necessary Check the airport to be sure they have skycaps, porters or other personnel to assist with the loading and unloading of your equipment and supplies Take lots of small bills to tip personnel who assist with loading and unloading your equipment

14 Tips for Driving Pack each treatment supplies in a separate Ziploc bag, and label for each day Take extra supplies Buy a heavy duty, folding cart to help with loading and unloading supplies Whenever possible, arrange to have your dialysate shipped ahead Locate the nearest Home Center to where you will be staying just in case of emergency Take extra trash bags to dispose of waste When all else fails, there is always duck tape!

15 By air A Travel Primer for Dialyzors: Your rights when you fly DOT Guidance on Travel with a Portable Dialysis Machine (DP or HD) -guidance-on-travel-with-aportable-dialysis-machine

16 By land

17 By Sea DOT Guidelines for Travel Aboard Pasenger Vessels nsportation-for-individual-withdisabilities-passenger-vessels

18 Common Myths about home dialysis More prone to infection Will bleed out and die I don t want to be reminded of dialysis in my home I don t want dialysis taking over my daily life In fact, you are far more likely to contract an infection in a center or hospital than at home. More people die from in-center treatments than those who treat at home. There are numerous ways you can set up a treatment area that is not obtrusive. You can find ways of working the management of dialysis into your daily life (set up in the morning or at night, treat during family time, or alone, etc )

19 THRIVING, NOT SURVIVING

20 RESOURCES Kidney School A Complete List of Resources by Category Home Dialyzors United