Choices for dialysis

[Zephyr22]

I'm new here. Recently diagnosed with stage 5 kidney failure so trying to decide on which type of dialysis will be best for me. I live on an island 15 miles off the Maine coast. No dialysis clinics or facilities on the island which is only accessible by an hour and 15 minutes ferry ride. Closest facilities on the mainland are 1 to 1.5 hours travel by car.

[Ziggydoodah]

Don't really have any advice to offer as only you can weigh up the pros and cons of the right dialysis for you. I will soon be starting dialysis myself. Its a very daunting and confusing time. Just wanted to wish you all the best, whatever decision you make x

[Zephyr22 in reply to Ziggydoodah]

Thank you for the response. Yes it is very daunting, my head is spinning. Good luck and let me know how its going for you.

[RhenDutchess123]

You need to ask the Doctor who diagnosed you if you can even get shipments of supplies for home PD or HD...You may have to move in-land

[Zephyr22 in reply to RhenDutchess123]

Thank you for responding but moving in-land is not a choice.

[barbara55109]

There are several books and websites that explain the options. I have had several abdominal surgeries and have an ileostomy so I am unable to do PD. I will have to do in center hemo. I wish I could do PD because it isn't as hard on your body and I could do it at night and no disrupt my full time job.

[Zephyr22 in reply to barbara55109]

Thank you for your response. I find more pros for nocturnal PD than cons, so that is the way I'm leaning at this point. Please let me know how things are going for you.

[KidneyCoach NKF Ambassador]

You may consider home dialysis! PD or HEMO could both be good choices for you. Check out Home Dialysis Central. They have great tools to use in making choices. Blessings

[Zephyr22 in reply to KidneyCoach]

Thank you for your response. At this point that is the way I'm leaning. Thank you for the suggestion about Home Dialysis Central, I will definitely check it out. Take care

[Blackknight1989]

KidneyCoach in the clutch with the great information as per usual. My research indicates, which is not dialysis specific at this time thank goodness, at home PD is the wave of the future, if you will. Meaning on website like KidneyX and others that are part of the big push on modernizing and improving treatments for CKD and ERSD are looking to improve the at home options. Reasons are many, but the recent pandemic really put the spotlight on the health issues associated with putting a big group of mostly immunocompromised folks in a room for 6/8 hours 3/5 times a week. Also, you and I do better hen we don’t have to add 2 plus hours of travel time one way to get the treatment. As you know there is enough stress on us as patients and enough challenges health wise in the first 6 months of dialysis. Those of us who face this choice eventually know the stats associated with a bad CVD incident with a bad outcome in the first 6 months. The morality rates are tremendously increased in the first 6 months.

The research done in the last 2/5 years shows the biggest impact docs can have the quickest and most beneficial impact on helping ERSD patients (especially in the US where many of us face the issues like you do with the 3/4 hours of additional time needed to get to a center) improve outcomes is in the at home method. ASN, which has the KidneyX site and is responsible for leading the national health research push coordinating the government financing, corporate money and pharma/device makers, AAKP which has probably the largest impact as a government lobby group, NKF and others are really pushing government/device makers to update the 40 year old technology of dialysis and do it first to offer in-home options because research shows it is the better option. However, they face push back from the large dialysis centers and those who run them. The money put into CKD/ERSD treatment and options improvement since the declared “decade of the kidney” in 2010, or most of it, went initially to helping improve the centers. It was really embarrassing as well as (and worse) it was sad the way many centers especially in major metropolitan areas had been forgotten and were left dangerously lacking in both a sterile environment and having the proper supplies. Also, when Obama changed the landscape and the way GPs and many other docs were reimbursed, dialysis center were unaffected so the money continued to roll in. A friend who I graduated with owned a local center with a couple of locations, in 2010 who was doing well himself and ran good clinics, has expanded now to over 50 centers in a 17 state area and owns 10 plus G5 aircraft both to run the business and to use for personal family fun. They got stinking rich, absurdly rich, over the last 10years and they don’t want to lose that easy street income source. So they are fighting the at home option with some CDC/FDA tactics of misleading information being used to help their case in Congress.

Here is the AAKP dialysis front page for their dialysis research site:

aakp.org/center-for-patient...

At the bottom are the links to both My Dialysis Choice which addresses the issues of dialysis is not just a medical treatment. It can also affect every aspect of your lifestyle. This online tool will help you choose the right treatment for you, so you feel your best and live the way you want to. Also there is the link to the iChoose Kidney risk calculator is a tool that educates patients about the risk of available treatment options for kidney disease. This tool shows estimated risks of patient survival (probability of staying alive) and mortality (probability of dying) with different treatment options (dialysis or transplant) given the patient's demographic and clinical history at dialysis start. These are both new in the last couple of years and

are supposed to be objective. They are certainly set up that way financially as this information is at the bottom of the AAKP page I provided the link to:

iChoose Kidney Risk Calculator is an online application tool created by a team of researchers at Emory University, funded by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number ULl TR000454 and KL2TR000455, and further supported through a grant from the Carlos and Marguerite Mason Trust Foundation (Emory University).

*My Dialysis Choice is an online application tool created by the non-profit Medical Education Institute.

Lots of good info here on the AAKP site and links to others. Take a look and I hope this helps if still trying to decide. My bets in the decision process and your continued journey with CKD/ERSD.

[Zephyr22 in reply to Blackknight1989]

Thank you so much for your response which includes an abundance of information to help with my decision. Truthfully I have been leaning toward the at home option from the information that I have already studied.

[Blackknight1989 in reply to Zephyr22]

I knew I was late with the information for your decision. However, maybe some will help validate your decision. Best of luck!