Since this is Mental Health Month….. makes me laugh, I thought I would utter my opinion on the lack of support for mental health through the process of Chronic Kidney Disease. This illness affects 14% of US adults, or 35 million people. You would think there would be a better mental health presence for support for people with this disease. There was a post by HealthUnlocked (32) May is Mental Health Awareness Month - Kidney Disease (healthunlocked.com) which offered great suggestions. I responded with a cryptic comment that it is not enough…. And it isn’t. When I was told that I had Stage 3b CKD, it was like someone gut punched me. There was no support back then, no forums that I knew of and no local support at all. I got mad and then I fought. And then I became an advocate. That helped me mentally so much.
I also used the Peer Mentor program through the National Kidney Foundation. NKF PEERs | National Kidney Foundation. At first, I was embarrassed and I thought how weak I was that I needed to talk to someone. I am a very tough broad and not used to needing help. But I had such a good experience, I paid it back and became a mentor myself once I was educated on my condition. Six years passed and I talked with many wonderful people. Each conversation gave me strength as I often learned from others information that was not forth coming from my medical team. The comfort of talking with someone who has walked the walk cannot be denied.
As my disease progressed, my preparation for dialysis did not. I was not ready. It took me over, slapped me down and put me in a position of feeling trapped. If anyone has studied trauma response or PTSD, I was experiencing all of it. The response from my clinic was to lecture me on attitude. They failed my pre-dialysis education by not offering it. I had slipped through the cracks on their transition of personnel. They screwed up. They were in a big hurry to get me in and then a big hurry to get me out on our own. I wasn’t ready for any of it. My direct team was great, but the administration is all about the money.
Sitting in the chair for the first time with no idea what was going to happen and then being hooked up was in no short term traumatic. Then, within three treatments, I was to start doing the hook ups with supervision. Are you kidding me? I won’t lie, I was pissed. I was mad about everything. I was mad I was not being prepared. I was mad that I started too early. I could have gone much longer without treatment, but did not know that at the time. I felt coerced yet, there I was. I was mad that my kidneys were giving out even though I did EVERYTHING I was supposed to do to stop the decline.
So here I am seven months in. I am home, with my hubby getting through each HHD treatment, one day at a time. We have some had real disasters and some treatments with no alarms, although only four in all this time. I am no longer as angry. I am sad, and I admit it. I knew that I needed mental health support to get through this. I contacted NKF and got the BEST mentor in the world. She has helped so much. We are sisters from different mothers. We both look forward to our chats. I also just started working with a LMHC. I am going to have to pay for this directly but feel it is money well spent. This process of dealing with a chronic illness, especially ESRD is hard. We should not be left without mental health support. “There is no money for it.” Some insurances won’t cover it. Many, as I found out directly, mental counselors and psychiatrists do not accept Medicare. Lack of coverage puts many people who need this support unable to get it.
My newest “platform for reform” is to demand better mental health counseling for all. There is money. It just has to be demanded by patients. We need to change mental health stigma as something for only the weak. Everyone should have this support automatically. Peer mentors should be assigned to all patients when they start any dialysis. NO one knows better how it is than someone who sits in the chair. Patient support groups need to be developed locally so patients can physically get together to talk. This is especially needed for home dialysis patients. Currently I am working with my local center to get this going. Transplanted patients also need mental health counseling to deal with the aftereffects such as survivor guilt.
I’ll close with this fact: A US study showed that there were 24.2 suicides per 100,000 in dialysis patients, corresponding to an 84% increase in suicide risk compared to the general population; one fourth of suicides occurred within the first 3 months after beginning dialysis, while half occurred within the first year (Kurella et al., 2005). Mental health counseling is not a luxury. It is a necessity.
I cannot agree with you more. Mental Health support is needed as soon as a person is told they need to go on dialysis. My Nephrologist helped me with diet counseling for years to stay off dialysis but when I was told I need to start on dialysis mental health support was unavailable to me. I requested a referral every time I met with the Nephrologist after I was told dialysis needed to start, but was offered no support or referral. I felt I needed a Social Worker with knowledge of dialysis options but could not find such a person. A friend contacted a hospice nurse and she talked me off the cliff edge and I calmed down for a short time. Finally, with a routine depression survey, I answered the question about suicide by admitting that I thought of suicide 10-12 times a day. The social worker called me before I returned home from my visit to the Dr. She has called me every two weeks since then. I am now on Computer Assisted PD each night and have a team assigned to me by Davita of a Nurse, Dietician and Social Worker. This team approach has helped me. I'm feeling better, have been on CAPD for two months with decreased side effects, so my life has improved. However, it is not easy and it is one day at a time, sometimes one moment at a time. Thank you for your post as this is an over-looked problem associated with ESRD.
HI Magic, Thank you for sharing your personal journey. It helps others to know they are not alone. I am so glad you found some help and support. It is almost harder for folks like you and I who worked so hard to stay off dialysis and still end up there. We know in our mind that is the journey, but it is still very hard to accept. And if you are like me, it felt like failure, which of course it wasn't. I do not like to fail. And thinking about suicide is so very common, and of course, no one mentions it. I would be lying if I said it never crossed my mind. Keep strong and keep us in the loop of your journey. You are very brave.
Just a question, what is computer assisted PD. Do you have an iPad that walks you through the set up of the cycler? I have an iPad for my hemo. It does not help me set up, but it does yell at me when there is an alarm. I turned the volume off as the alarm on the machine is enough. I have named the cycler Vampira. (see I do have some humor left).
Computer assisted to me is my cycler. I call her Chortles as she chucks at me for 8 hours every night. You are so right when I get an alarm, I plead with her to just stop. Set up is on the screen for me and I need to be in my full capacity to set it up every night as any wrong button push and I'm on the phone to Baxter. Their assistance is the most patient and kind as I'm usually half asleep and/or hysterical when I need their assistance. You are so correct when you say it's a journey that we all walk at our own pace. Keep strong and be well. Dialysis is not a cure, but it is a treatment that helps. This site has helped me to answered questions and it reduced my anxiety about the unknown. I appreciate all the feedback and information about the problems with dialysis. Unless you are walking the path, you just don't know what our reality is like. No one can really understand, unless they are trying to walk this onerous path. It really helps to know how others deal with the ongoing, unrelenting, constant pressure of dialysis and we are not alone. We need to keep our sense of humor as it's so necessary to stay on the path, not get depressed and keep on treating.
Mental health assistance is beyond important for the patient and the families. That said PLEASE don’t assume all mental health care providers are interested and compassionate and conscientious. My husband was referred to a psychiatrist/drug dealer who saw him as a box to check off. Her counseling involved recommending he read a book she recommended to all her patients (regardless of any understanding of his issues) and when he didn’t really connect to it she said well you need to count the blessings you have. He checked in monthly for 15 minutes to renew his antidepressants or maybe get an additional prescription for sleeping and another for anxiety etc. None worked but my husband didn’t feel he had any other options and so he just added them to the fistful of drugs he was already on. Eventually he gave up on them and started smoking weed which worked for a while. And he just stopped the meds and the visits and the psychiatrist never even followed up until she sent a nasty form letter from her office saying she was cutting off contact because he had missed too many appointments. This arrived 3 months after he passed away. I didn’t know a lot of this at the time because my husband tried to cover and stay strong for the family. But we could all see he was suffering and withdrawing from us but when we tried to connect he deflected. I believe this “mental health support “ hastened his decline hopelessness and decision to end dialysis. Please get help but please be careful with your trust. Prayers for all of you facing this crisis.
Sorry for all this and for your loss. It is important to have good relationships with all your providers. I have fired doctors, and I will argue with them. But I also know a good one and when one is a bad one... So sorry, what a tragedy and loss.
my experience has been very different. I have been doing PD for over a year now and have had nothing but kindness and support from the dialysis team. They welcome my daughter to attend training, appointments etc. I have an Amia machine and was trained well. Setting it up is easy with the little touchscreen. I set it up in the late afternoon and hook into it around 11:30 at night.
I do get alarms and some drain pain, but it is manageable. I am able to go back to sleep after the machine shuts down in the morning.
The clinic was very helpful with Baxter who wanted to unload a months worth of supplies at a time and I did not have room for that.l..so they intervened and it is every two weeks,
I am told that due to age and health concerns….im 78…that a transplant is not going to happen, so I guess this is the rest of my life. So far, I live alone and manage all right.
I agree that mental health support is a necessity, a,though I have not asked for any. I do get tired and pretty down sometimes. However, if I ever have a question or a concern, it doesn’t take more than an hour or so for the clinic to respond. Or their weekend and night back ups. Although they don’t know me personally like they do at the clinic
So far, I have paid for nothing. Canada has a different system in place and I’m not sure who pays for stuff…..the Kidney Foundation, the province or the federal government, but it isn’t me. The most I pay is the parking at the clinic.
I can be referred for counselling but have not requested that. There are home care services available to help set up the machine etc, but I don’t need that at this point. The clinic is very supportive and responsive.
All the same, this is difficult to deal with at times. Sitting alone at 2 am with a squawking machine makes me wonder why I do this sometimes. It’s a rough journey….
I'll preface this, I'm 52. I'm gonna be Debbie Downer. To be straight up, I'm not sure how I handle End Stage, I just roll with the punches and give the same. Good days, bad days, Massive weight gain days (yep was doing the fun stuff), which after, equates to sleeping for 20 hours (after pull and clean). I lived my life (albeit a beautiful disaster), but I did what I wished. At some point, one can give up, but there is a point, where one says I've done all I can in this life, experienced more than way more than most. Let's live, really live (You and all). Sometimes I ponder, just live the best life one can and chuckle, knowing that time isn't on our side. Most never know the journey, they only know the destination. I'm gonna ride this one out long as I can, just like an old car. Wish you the best.
I'm one of the lucky ones in that my insurance and my husbands thinks mental health is important. I get phone calls regularly from the insurance nurse who checks on me. The social worker at the dialysis center checks weekly. The insurance sends out tip and techniques and I have an 800 number I can call.
I think the fact that I work and thus have social contact there, I have a couple of people at the dialysis center whom I talk to when I'm there. I have dogs whom I can talk to...they don't respond but they sure are good listeners. And after almost dying I talk to God.
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Spousal support during dialysis 
So sad
