Emotional toll of patients with CKD

This appeared in my inbox this morning when I came back from a hike and thought I'd pass it along for many of us dealing with similar issues. There are a lot of links to follow after reading the article for continuing information. Hope it helps and generates some conversation.

healio.com/nephrology/chron...

[rabbit01]

Thanks for posting. I can certainly relate to those feelings and emotions of abandonment by the medical profession and self blame for having CKD.

[Charlene_Coxhead in reply to rabbit01]

Don't blame yourself it's not your fault. Your doing the right thing now and doing all to look after yourself and delay the progression. Stay strong don't let this disease win

[Bassetmommer NKF Ambassador]

I just retired as a Director in an Home Care Agency. One of my many responsibilities was working with the clinicians on their customer care skills with patients. In all the years I have worked in the medical field, there is a real challenge to encourage and teach clinicians and providers how to be more empathetic with their patients. Some providers nail it, others not so much. Part of the issues is they are not often taught these skills. The competition of medical school and their education process, which can be so cut throat, can leave them less than nurturing. The amount of patients they see does not allow them to be able to build relationships with their patients. Depending on the medical association they have, they can be part of a system that pushes a quota and a quantity they have to process. It is a dichotomy of what they are told to do and what they actually can do.

Patients need to be more prepared and learn to advocate for better care. Many large medical centers, like the one I worked for, have organizations that are set up to work with patients on non-medical issues. The one I chaired was called Patient-Family Centered Care. We worked with patients to make sure they had the care they needed and often set them up with an other patient who had similar experiences. Many providers now are setting up a person within their practice whose responsibilities are to work with patient issues such as insurance and making sure they are connected to the right services. Unfortunately, doctors do not have the time to hand hold as much as some patients want.

The article refers to only 27 patients, which is not a large sample. I take fault with the article statement that "Not only do they struggle to make meaning of their illness, but must contend with providers and health systems that are largely oblivious to their challenges." Providers and health systems are not oblivious, they are just swamped. Also, the bottom line is that they don't get paid for rendering hand holding. That's the insurance systems fault. They dictate how much a service is going to get paid and how long you can spend with the patient. If anything needs to change in healthcare, it is the insurance system.

When I was diagnosed and found out my prognosis, they first thing I did was look for an advocacy group. That is how I found this site.

[Bet117 NKF Ambassador in reply to Bassetmommer]

Well stated and very true!

[Bet117 NKF Ambassador]

Excellent article. Touches upon many emotions felt by folks when they are first told that they have a kidney disorder.

Well worth reading!

[Cathy12156dsrjad]

Thank u for this article. Some people who r only trying to help will say “just pray, trust God, be positive, on and on, and we need all of that for sure but there are times when we are down and for those of us that already have chronic depression (35 years fighting a WINNING battle) it is tough at times and we want a hug, a smile, just understanding. That’s all! For everyone who has tough days. HAVE THEM then I get up off my knees (prayer) and start again. Life can be “not so great “ but God is greater🙏🏻❤️