A journal of healing

It has been four months now since I heard the news that I was stage four chronic kidney disease (CKD) and was facing a future of dialysis. The news was devastating and put me in a funk for many weeks. My reaction was to be expected and should have had better support than it did. I have discovered some very sad things about the support system out there for people with kidney disease.

The first thing I discovered was there was no local support group. I asked at the local Kidney Foundation and they said no, they did not have any physical support groups in the area. They said they offer on-line support. And there is peer mentor support through phone conversations. So I signed up for both.

The phone support was nice, as the lady I was paired with was very understanding. Her situation is nothing like mine as far as the kidney situation, but we did have other things to chat about. We did five calls and both decided that we were not going to continue them because there was not much more she could do for me. She agreed that she really was not a good choice for my situation. She is a two time transplant patient and was never overweight or diabetic. She was also born with kidney issues and had her first transplant at 17. I found that the person from the Kidney Foundation who paired us never listened to my diagnosis or my background when I was interviewed for the mentorship.

The on-line support group is also very limited. There is one person on the site who thinks he knows everything in the world about kidney disease and is as pompous as they come. Now it seems there are only about four of us who use the site regularly and it is not really helpful to me.

One of the things I posted was about trying to get some support about my diet. As expected, Mr. Kidney (his user name for the site…really) came back with a lecture about how successful he has been losing weight and not much advice for me. This is basically what I wrote:

I have a situation where I could use some help. I have the following medical issues. I am diabetic. I have psoriatic arthritis which causes me to have high uric acid. I have diverticulitis (also from the PsA). I have Stage 4 CKD with a GFR of 24 and creatinine of 2.09. I had high protein but have brought that completely down into a normal range. And I need to lose a significant amount of weight.

Here is my dilemma: I do not eat red meat at all (since 1986) and I have stopped eating for the most part chicken, turkey or fish. I do not eat tomatoes, potatoes or other CKD no-no fruits at all. My main consumption is salad and fresh vegetables. However, much to my dismay, I am having now issues with the large amount of lettuce because of the diverticulitis. I have limited bread, rice and pasta because of the carbs. I am not into lentils and do not eat beans. I stopped eating cheese for the most part because of the calories and no sugary desserts or baked goods at all. I was substituting zucchini noodles, but found out they are very high in potassium which I have to limit along with phosphorous.

I was eating a lot of cauliflower which now I have discovered is high in purines, which causes high uric acid. I limited broccoli for the potassium and also other high potassium vegetables such as any squash. I do eat eggs, but I am trying not to eat them more than three times a week and when I do, it is mostly egg whites (which is not very satisfying)

 I do count my calories and try to consume at least 900 to 1000 calories a day. I have had to add more pasta for calories which of course is counterproductive to weight loss and carb counting. I have lost 21 pounds since May and I am glad with that, but believe me, it is just a drop in a very large bucket.

Anyone have suggestions as to safe choices for food for me?

Of the four people who responded, they had nothing new to tell me. One person came back with a list of foods that are totally not acceptable for kidney disease and were high in fat and potassium. Most responses were about exercise. Hello…..this was about what I could eat.

Does anyone read?????

I am pretty frustrated with this whole process. From the first class I took with the arrogant nurse who spent her lecture time telling me about her personal diet journey to the lack of true support for newly diagnosed CKD patients.

The world is focused on diet and weight loss. And when you enter the clinical world, it becomes extremely myopic. Just recently, I read an article on a lovely lady who just died at the age of 64 from cancer. It seems that she had been seeking help for years with her symptoms and was only told about her weight issues. “Lose weight” was the only help they gave her. They did not run the proper tests on her until she pushed extremely hard and someone listened. Unfortunately, at that point, the cancer was inoperable and she was doomed.

The other thing that does come up in my reading and research is that doctors do not consider someone having kidney issues until they are in late stage or 3b kidney disease. That too was what happened to me. I should have seen a nephrologist and a renal dietician earlier. I was actually in stage 3a in 2013. My PCP doctor was also more focused on the weight and the diabetes, which is actually painfully ironic. He changed my medication for the diabetes last year and it did not work. My glucose kept climbing and he kept telling me to wait. Finally when I was having readings often over 300, I put myself back on the medication (I had saved the previous left over medicine) I was on before. But the damage had been done and my GFR reading went down to put me in Stage 4 CKD. I also put on more weight, again counter- productive. But then he gave me the referral to the nephrologist. She then gave me the referral to the renal dietician. Again, ironically, the foods that I had been eating to try to lose weight were not good for the kidney.

I will wonder for the rest of my life wonder if I had seen someone earlier if I could have saved my kidneys. Probably not since the reason for the damage is from medications for the psoriatic arthritis. Nothing like being held hostage to a bad situation either way.

But in spite of this all, I am doing better. My kidney function has stabilized for now. I am having more normal readings on my labs and actually brought my GFR up a point (which is rare). I have lost weight which make me happy but not because of appearance issues, but because I feel better. I don’t give a rat’s ass about what people think about my size.

Kidney disease is a frightening disease that affects millions of people. I feel so bad for the people who are newly diagnosed and are not computer savvy or do not like to use chat boards. I am so sorry the one they offer is so limited. The social network sites are terrible and not populated well with good information. There is an abundance of terrible and inaccurate information on foods and diet which can be potentially damaging. There is, of course, a plethora of snake oil sites which offer immediate miracle cures. There are many, many organizations out there that are reaping big bucks off of donations. I do not see it coming back to the patients however, at least not locally.

I have taken classes to be a certified Kidney Coach. I offered on the chat site to become an ambassador but was told I needed to participate longer. I am going to become a phone peer this fall and will probably seek other ways I can use my teaching background to help others. I see my nephrologist in a week and she is going to get an earful.

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Comments on: "A Pissy Situation: Is it really only about weight loss?" (3)

  1. That is overwhelmingly discouraging. I am glad you have the motivation to help others, it can provide some purpose, even from a situation like yours. Congratulations on doing better! I personally feel that BMI is not the cause or foundation of health issues. A symptom, maybe, that can be a compounding influence – just as my fibromyalgia symptoms can trigger PTSD issues. But doing better is what really counts!

    Liked by 1 person

  2. god! that’s awful for you hun! Really awful! Im sorry that your in stage four kidney failure. I hope you do give that doc an earful! xxx

    Liked by 1 person

  3. wow very honest good post

    Liked by 1 person

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