A journal of healing

Posts tagged ‘Diet’

A Pissy Situation: Is it really only about weight loss?

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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Pissy Situation: Diet or lifestyle change

“Just go on a diet and lose some weight.” I do not know how many times I have heard this in my life. It has been said from well-meaning and not so well-meaning friends, medical people and people I do not even know. What right does anyone have to even propose such a life sentence? I supposed doctors think that if they say this, they will be absolved from better educated suggestions. But only someone who has lived a life of diets knows how really hard and almost impossible it is to be successful losing any real weight and keeping it off.

I am a large person from birth. I was my mother’s largest baby and also the largest female in my whole family by the time I was 11. I am not just talking about weight because in hindsight, I was not that overweight as I was told. But I was six or more inches taller and took a bigger size in my clothes than anyone else. I did not get the petite gene like my aunts, grandmothers or sister did. Matter of fact, my mother was 4 feet 9 inches and never weighed over 100 pounds accept when she was pregnant. How could she possibly relate to the mammoth she-child she had. Even my brothers were not large in size accept my one brother who was husky. But he played football and so that was ok.

I grew up in a world of carbs and candy. Sweets were ever where and the dinner table was heavy with fatty meat and starchy vegetables. It was not big deal for anyone else in my family. My parents also insisted on clean plates.

But somewhere around 14, my mother put me on my first real diet. Green beans and Jell-O. While others were indulging in spaghetti and desserts, I had green beans for my meal, and Jell-O for dessert. Not a recipe for success. This only left a bitter taste in my mouth about dieting.

As an adult, I made several attempts at diets. I did Weight Watchers a couple of times only to gain weight one time. One time I did lose weight only to gain it and some more back once I stopped.

Sustaining dieting is very difficult. Anyone who has tried to change any type of habit will tell you how hard it is. I find there is less empathy for someone who is dieting than someone who is quitting smoking. Why is that? It is just as difficult.

Our culture is mean. We demand that our females be slender and sleek. Yet we are bombarded with food ads. What a rotten tease. Does anyone else not see how unfair this is? I have yet to see a good ad for salads. But open any magazine and they are filled with baked yummies and cheese covered dishes. I stopped watching TV because of the ads a long time ago. But now, I won’t read a magazine either. And I have a subscription to a cheese magazine.  “Oh,  the irony.”

There are many fine folks out there who are raging a war on fat shamming. I believe in their work. I also belong to an organization that supports Health at Every Size. I don’t believe in diets to lose weight.

But I have to diet now. Have to. And it is not to lose weight. It is to save my kidneys. This is a fight for my life, not for being accepted for the way I look. I do not give a rat’s ass what people think about that and have not for a very long time.

Less than three months ago I went on a renal diet. It is not about calories. It is about protein, potassium and phosphorous consumption. My primary concern is protein. I gave up red meat in 1986. But I did consume large quantities of chicken, turkey and some fish. I gave up turkey completely as it also has high purines which are not good for kidneys. I will eat a little haddock once in a while. But giving up chicken has been very difficult.

Next time you are at a restaurant, try finding a low protein meal. EVERYTHING has some form of meat or fowl in it. Even salads are covered in either chicken or cold cuts. Not good. Mushrooms also are not good on a renal diet and I don’t like them much either. The next thing is look at the side dishes. Potatoes forever. Potatoes are a definite no-no. NO chips, no fries, no bakers with sour crème. Pasta has tomato sauce which is not allowed. Tomatoes are also everywhere.  Other choices like cottage cheese are not good due to the salt and potassium. Most other offerings are smothered with mayo, which is ok in small amounts.  Pasta is good on a renal diet but not good for weight and glucose. These are things I have to be concerned with too.

I do manage most times going out. But my husband and I have cut way down on going out to eat. It has really changed our habits. He has been supportive but is not as restrictive in what he eats.

Every once in a while I get very cranky. Then I know, it is time to have a free day. I know this is the only way I am going to be able to sustain this new eating lifestyle. It is not just a diet; it is a whole change in attitude and life. I don’t like being forced into things, but I have to let that go because I will never win on this. My not being careful will only harm me. And once my kidneys slip further in function, there is no going back.

Free days are not days I eat everything I can get my hands on. They are days when I know we are going out to eat. I track everything I put in mouth. Most days, I limit my calories to less than 1200 calories. That is fairly easy to do when I am home. I have eliminated most of the crap in the house. I keep the fridge full of fruit and salad makings. I have high quality things like homemade breads which I buy and freeze. I slice the bread and wrap each slice individually so I can only take out one at a time. Any snacks I have are very low calorie like rice rollers or popcorn.

But some days, it is not going to happen. I crave something more substantial for dinner than a salad.  We have gone out for ice crème four times this summer. I had birthday cake for my birthday. I have not had potatoes but I will have chicken once in a while. We enjoy pasta once in a while and are now going to try homemade gourmet pastas. Better ingredients and fewer additives. The first couple of times I slipped off the diet wagon, the guilt was terrible. But then it really is no one else’s problem so I have learned to cut myself some slack.

I discovered that even with my free days, I still have lost weight. After I have a free day, I come back the next day with more determination to follow my diet. And it easier to do because I am satisfied and not as bereft of whatever it was I wanted to eat. My labs have been fantastic and have steadied my kidney function. My doctors are very pleased.

And I hopefully can keep this lifestyle up for ever.

A Pissy Situation: Part two A Big Fat shame

    So in my last blog I wrote how and why I am now facing a life altering situation. I have stage four kidney disease and it WILL progress to end stage renal disease and death. The solution is dialysis and a major change in the diet. After I met with the nephrologist, the next steps were a dialysis class to learn about options and what is entailed and then a meeting with a renal dietician. I was not looking forward to either.

The day of the class, I got there early. There is one thing I am seeing and that is there is a lot of money to be made in kidney disease. Fresenius is an organization around here and all over the world actually that has dialysis centers. They just opened a center very near to my house which is amazing and telling. They have lots of money. The class was in a Fresenius office suit that was beautiful and had all the wow factor of furniture and decorating. It was, however, lacking anyone at the main desk and no one showed up until I had sat there for a half hour. The “class” was just me and one other poor woman and the nurse. She was very polite on the phone but she took one look at me and that was it. I disappeared as fat people do.

She went over the different way you can get dialysis. She explained how you have to have surgery to have a place constructed for the hook up. Hemodialysis is where you hook up to a filtering machine and your blood is basically washed of toxins. They normally hook you up in your arm after you have had a fistula placed where they have combined your vein and artery and make it stronger for the constant needle placements. Sometime they have to put in a fake vein and artery connection. Once you start this, it is for life. You go to a center three times a week. If you can, you can do it at home and you can do it four times a week.

Then there is also times when they connect you for dialysis by placing a tube in your heart and you wear a port on the outside of your chest. This is done mostly in emergencies and is meant to be temporary. You cannot shower or get or it wet. It is not sustainable.

Then there is peritoneal dialysis. This is what the other woman is going to get. She is thin. I am not. The perinatal dialysis is not for fat people and the nurse made that very clear to me. They put a tube in your peritoneal cavity and you simple put solution in and then wait. And then drain the solution out. You can do this why you are sleeping if you sleep for 10 hours. That’s how long it takes. You have to wait hours in between putting the stuff in and then draining. And you have to do this every day for ever.

All of these are life sustaining with different projections of mortality. In the end, they fail… or should I say in most cases, your heart fails. All of these really stress the heart and cardiac issues are the primary cause of death. Whoopee… are we having fun yet?

The ultimate solution is a transplant. She did not go into great detail about that other than to suggest we register with the local transplant group associated with our medical providers. I had already discussed it with my doctor. Bottom line…. Forget-about-it. They do not do transplants on fat people. There is one place she said she knew of in Cleveland that will do the surgery but that’s it. And that is when they would even offer you the kidney, which is slim… no pun intended.

The nurse instructor started the class by telling us she was the ultimate authority on renal dialysis and I quote” I am the Guru.” The arrogance of clinicians is something I abhor as I had to put up with it constantly at my job. However, being the shit I am, I threw something at her using my very limited medical knowledge and she had no clue. Scary. At that point, I was so done with being ignored and dismissed. She started to go into diets and what you can eat on dialysis as the other lady asked her. But when she started in on telling me about how she just lost sixty pounds and the fight she had to do it…. I was done. I left the class. There was more to come but I was either going to cry or smack her. I went to the car and cried.

The point of me taking the class was to become informed. My doctor said I had time to take it when we got closer to dialysis, but since I am a worry-wort and need information, she said to go now. All it did really was make things worse. The images of the needles being jammed into my arm and drowning now were becoming constant visitors in my attempt to sleep at night.

The next thing I needed to do was visit a renal dietician. The word diet makes my back stiffen. The information out there is so confusing on what to eat and so forth, especially for kidney patients. From what I had read, I was pretty much poisoning myself with my dinners of chicken and Brussels sprouts. I had eaten that at least three times a week all winter. I do not eat read meat and haven’t since 1986. Since all this mess has also made me a diabetic, I am extremely limited on what I can eat. Kidney disease had new limits such as potassium and phosphorous intake. Who knew that vegetables and chicken have large quantities of potassium? I did not. So I was looking forward in a way to meet with this nurse.

She was lovely. At no time did she shame me in any manner. I will say I started out being defensive but she totally disarmed me. The bottom line is there is a lot of conflicting information out there and it is also outdated. Anyone who is facing a need to alter their diet should meet with a certified dietician.

I had to provide her with a food journal for three days. We also talked about what I eat. The bottom line is that I was actually eating a good diet for the most part. She feels, and I have to agree, that the elevated potassium is from the medications I am on and not from what I eat. She also said something I have NEVER had anyone tell me. I do not eat enough.

I am going to do more on the topic of diet after I have done more research, but this is what I have learned so far. Since I can remember, I have been on a diet of some kind. When I was a child, my mother forced me on a diet of green beans and Jello. Seriously! Now-a-days, that would be child abuse. Every time I went on a diet, I messed up my metabolism. The Dietician explained it as the “Tea and Toast” syndrome that old ladies employ. Once you restrict your body to a modified intake, the body adjusts and lives on it. The body holds on to fat as storage because it thinks you are trying to starve it. We all have a set-point of weight where our body wants us to be. Once we start to lose weight, it will shut down the furnaces so to speak, and not burn fuel so much in order to preserve our body weight. We keep feeding ourselves less and less and the body says, “oh hell no,” and shuts down. That is why you plateau when you go on a diet.

And what do you do? You cut out even more and the body again shuts down. Now you are running on 1000 calories a day and guess what…. You are doing more harm than good. Your poor body does not have enough fuel to run. You are cold and crabby and irritable. Now, because living like that is not sustainable for most people, you go off the diet. But your body used to running on 1000 calories and you are now consuming 2000, which is more normal. But your body says “over load” and you gain the weight back and then some. And when you gain the weight back, it comes back as fat. And we do this over and over.

Well, I am a perfect picture of what happens. Once when I was on Weight Watchers I gained weight. I took my WW food journal to a dietician and she said there was no way I should not be losing weight on this food intake. Weight Watchers and all the diet industry know that the cycle of losing weight and gaining weight is big business because of the constant failure rate. If it was successful we all would be thin and they would cease to exist.

The other factor that many people face who have kidney disease is that you become diabetic. And once you are diagnosed, you are then put on huge doses of insulin to bring down your glucose levels. Insulin is a growth hormone. Can you guess what happens? You gain weight….. Copious amounts and it gets worse and worse because the more insulin you take the more you become resistant to it. I will have more on this as I am doing a lot of research.

The Renal dietician gave me some great information on what to eat and what to watch out for. She recommended that I go to as much of a plant based diet as I could. That will not be hard for me as I already do not eat meat or much fish. I have already switched to a Faceless Diet. If the food at one time had a face, I am not eating it. She then told me according to what I am eating, I am not eating enough. Wow, I was shocked. She said I needed to add more to my diet but to be careful because I will gain because I have restricted myself for so long. There is a lot of research out there in this very topic of resetting your baseline metabolism set point.  I need to do more reading and I will probably set up another appointment with her. As it was, we had talked for two hours and I was exhausted.

The bottom line is to preserve the kidney function for as long as I can. I am at about 23 % function. If can sustain that, I will be ok. I am not going to run any marathons and I will have to be careful not to stress them anymore. The research I have read is not that hopeful. Basically the kidney is operating at a huge loss. There are only 23 of the “workers” doing the job that 100 were doing. Eventually, they give out and go on strike and QUIT.

There is good news in all of this. I am feeling a lot better. In the beginning of the year, I was getting so short of breath that it was awful. I could not do anything without panting. After climbing the stairs I would need to sit down. Once the weather broke, doing anything outside would have me coming up short of breath and I would need to sit. My blood pressure would go up and I could hear my heart beating in my ears. Now, I do not need to sit coming up the stairs. I can work in the yard and have been doing so. I am not so constantly exhausted. The supplements are helping, the less stress is helping and just the small modification in my diet is helping. At least I think so. The next labs will tell.

Until next week.