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 medical 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’m fortunate that my insurance from mt job covers mental health. Everyone says talk to your social worker but she is only at the center I go to once a week. My insurance provides a nurse who calls or I can call and talk to.
The stigma of appearing “weak” is real. As is the suicide rate. I’ve seen multiple people on dialysis give up and stop treatment. If I was told I couldn’t get a transplant and had to spend the rest of my life on dialysis I might consider it. Thankfully I’m stubborn .
My center is very small and independent so there a lot of amenities but I do what I can to be cheerful and talk to people . I’d like to do a peer thing when I retire as right now my job takes up most of my time.
Thank you Bassetmommer for posting this wrenching memo from your heart. So many of your posts have touched me deeply - you say things that need to be said but so few of us have the courage to say them.
In this post you say ” 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.” How can we know how long we can go before we must start Dialysis? Who can/will give us that information? Is there a point of no return when we have waited too long and it is no longer an option - or our body can no longer function with the minimal filtering that our failing kidneys are able to provide? It takes a fierce determination to live with ESRD, not all of us have your courage.
Thank you CKDnomore for your kind words. Sharing is a big part of my own healing. So, to answer your questions, yes there are indicators. One big one is urea nitrogen often noted as BUN or UN. It is a level that if too high will make you toxic and will affect your ability to reasonably think. In other words, gives you massive brain fog. Of course, creatinine and GFR are big indicators and how fast your GFR is declining is an indicator. My Med center uses Cystatin C levels also which is a measurement for protein in the blood. But the biggest indicator is how you, the patient, feel. I felt fine. For jeepers sake, I went to water aerobics class twice the week before I started. But keep this in mind; how one person feels with certain numbers may really bother someone else. Now I know that my BUN level was not off the chart or critically rising. Matter of fact it has remain about the same for the last year even on dialysis. Also, my other levels, although not great were also not critical. But my Nephrologist kept insisting that at any time that could change, and I could crash and need a chest catheter. I did not want that. I also did not want to have to travel in the winter to the center for training four days a week as we get hit with bad snow. And of course, we had an extremely mild winter. My main complaint about all this was the lack of preparation prior to being hooked up. I have never seen a regular dialysis in-center. The center I use is only for home patients and training. The first month home by ourselves was terrifying. All the training in the world did not help. I would not have changed my mind, but it would have made it so much better if I knew what to expect. Talking with other patients, I found out that this is what they do. Partially because there are so many things that cause alarms, they cannot cover them all and ...this is the big reason...they do not want to scare the patient off and have them go to an in-center. If I knew that before, it would have been easier.
Thanks. I couldn't said it better. BTW many mental health workers don't get involved with Medicare or other insurance for payment because the paperwork and especially the auditing of their work can be outrageous.
That's so wrong in so many ways. The LMHC person I am working with is applying to be able to accept Medicare. I want to hear why and how hard they make it. When you see what the dialysis people are charging for treatments, and I am doing the work, cut out some of that to pay for mental health.
It's very unfair. I was never personally involved with Medicare as a payer because i worked at a hospital and then for the State. However, I hear from colleagues as to how they have to justify the number of sessions, , justify the diagnosis, justify the treatment method and go thru periotic audits. And, you know, this kind of information is difficult to define sometimes when you're dealing with someone in crisis.
I think some of the problems crop up because of the number if sessions needed. But, it's the nature of the problem treated. Medical doctors may get away from some of this because they say "see you in three months" while the mental health therapist says "see you next week."
It should be part of the renal package and everyone should be offered this and paid for like most ESRD costs for people on Medicare. I paid for this my whole life. And it is a lot of work but we know why.... people have done such egregious Medicare/Medicaid fraud.
One can actually say that it should be part of a package for any serious, severe, and/or chronic medical condition. Who doesn't need mental health support when they find out they have cancer or are undergoing chemotherapy or are scheduled for open heart surgery, etc. etc. Hopefully, it can happen some day. Many, many years ago when I was a young psychologist working at a VA Hospital, I started what was called them a "health psychology" program where I along with my interns and residents would visit patients with life-threatening illnesses. It was well received by the patients as well as the medical staff. This all happened at the start at what is now called Medical Psychology, programs that flourish in many large hospitals now. I'm not sure whether or not medical psychologists do well in private practice.
Please note, Medicare and Medicaid fraud is most always provider fraud. Patient or enrollee fraud is so rare it's considered non existent. I work in Medicaid policy and program integrity in my state.
You are amazing! Such a gift to the CKD community. Your advocacy and courage is targeted exactly to the needs we all have. Your comments brought tears down my face. Thank you!
You have made me cry with laughter, tears running down my cheeks (which is no mean feat, since I have very dry eyes and have trouble producing tears) every time I think of your post about being stuck in your compression stockings. You often speak what many of us are feeling, but cannot sort out. In addition to CKD, I have autoimmune issues, and that, too, is an area where not much mental support is provided. My PCP has been a life-saver in the mental health aspects, has gotten me through some tough times, but she is leaving practice (at a fairly young age) to accept a teaching position at a medical school . I try to look at this as advantageous to many people down the line, if she can impart her methods of treating the whole patient and not just the disease to more doctors of the future. But it's leaving me with no idea where to turn. Your ability to get right to the heart of an issue, and let us all know that we are not alone is greatly appreciated. When you write something like this piece that makes tears fall, I can say from my experience they are tears of gratitude. I am so thankful for you.
The national association for mental illness and other organizations fight every day for mental health patient. The ACA helped mandate some coverage for plans sold on health care exchanges. They desperately need parity and coverage improvements in Medicare. Our minds and bodies are connected. We also need dental, eyes and hearing coverage. We are the only industrial country without universal health care. It's sad and wrong.
Thank you Bassetmommer for this post.I sometimes feel overwhelmed and just need someone to talk to, and I am only at Stage 2, but it has definitely changed my life. The anxiety is sometimes tremendous. My husband tries to help and he does, but I also see fear in his eyes because he feels helpless.
Mental Health support should definitely be offered to ckd patients.
Remember one thing Dana, at Stage 2, you have a lot of control over this disease. Let that empower you, instead of scaring you. With all the new innovations and drugs they are coming out with, you may be stage 2 for a very, very long time.
I haven't yet addressed any new drug treatment yet with my Neph. I've seen rx Farxiga is used to treat non-diabetic patients with ckd at a function of 40+ or higher. Don't know of any other rxs for ckd, other than rx's to control bp. Will address w/Neph at next appt.The anxiety came from all the htn episodes, palpitations, arrythmias, and having Sjogren's Syndrome flare-ups. These may be responsible in my case, for the yearly UTI's I've had in past four years. IDK if my symptoms at stage 2 ckd have been typical for most at this stage, but it's sure been life altering. Didn't have any of these health issues before age 55. Anyway, I will try not to whine & complain anymore & find something to occupy my time with. Thanks to all
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Successful diet to manage CKD
Dialysis or supportive care
Kind of personal question
Newbie and overwhelmed. Waiting on referrals to be finished to see a nephrologist. 
Switch diet to Vegetarian - save your kidneys
