A journal of healing

Archive for the ‘Renal diet’ Category

Why, oh why…Questions I have.

My questions for today are: Is it possible for women to have a conversation and not talk about diets? Would it be possible for restaurants to consider that not everyone eats meat or tomato sauce? Why is it so hard to stay on your diet when away?

We just came back from vacation. It was a lovely trip to our favorite place in the 1000 Islands. We go every year at least twice. We do not really have cooking facilities in the room we are in. So we are required to either get take out or eat out. Actually, that is part of the beauty of the trip. Usually, we buy snacks for the room also. Now that I am required to watch what I eat, we limited the snacks. But I did buy a bag of Fritos and I had my favorite River Rat cheese. (I did end up feeding the Fritos to the geese and other animals there.) We ate cold cereal for breakfast in the room every morning. I don’t normally eat cold cereal. In the past I have brought an electric kettle so I could make oatmeal, but that is now only allowed on a limited amount on my renal diet. Cold cereal was the only option for this trip. Not a good thing.

Every morning, people around the world pour a bowl of sugary carbs and cover it with milk. For me, the carbs in the morning are really bad. My sugar elevates at the middle of the night, instead of coming down like most people and then by mid-day, it is in a normal range. I use long acting insulin with a bigger dose at night and a smaller one first thing in the am. I do not take insulin the rest of the day. When I ate cereal, my reading never came down and my overall sugar stayed pretty high. On top of that, milk has sugar as well as phosphorous and potassium which is not good for the kidneys.

When we were shopping at the store, it was hard to find any for breakfast that would have been a good substitute. We did buy some dark homemade bread at a shop and lite butter Again, bread is high in carbs. Forget about croissants, or god-for-bid donuts. I do not ever eat donuts.

I wonder if eating cereal as kids is a contributor to having diabetes as an adult. At home, I never eat cereal. I scramble two egg whites and one whole egg and sometimes add pre-cooked veggies. I have very low cholesterol so this is not an issue. My solution for our next trip was to buy a small egg cooker.

The other big problem was eating out. The place we stay has a wonderful restaurant with a fabulous salad bar. The first two nights they had a buffet. BIG MISTAKE. Even though I thought I was being judicious, I over ate. I skipped the buffet the rest of the trip. Two nights they had all you could eat pasta. It was cheaper to buy that dinner than the salad bar alone. I had pasta with alfredo sauce on the side. Yummy…but terrible for me. But, I was on vacation and in my head I justified it. We had other meals when the restaurant was closed and I tried to pick something with no red sauce and only chicken. I ate more chicken that week than I did all summer. A couple of times I only ordered salad but they came with chicken. It is almost impossible to find renal friendly meals in restaurants. If it doesn’t have pasta it has potatoes. Ordering a side of let’s say just broccoli is not a good option often because the broccoli is usually frozen and mush.

I had labs done the week we came back and my numbers were terrible….. well, I thought they were. My nephrologist said they were not that awful and to stop worrying. I already lost the five pounds I gained, and my glucose readings have come back down. But it did frighten me when I saw my GFR dropped two points. My goal is to get that back up.

Last night we went to a function at a restaurant. Again, it was a buffet. But they had big bowls of salad on the table. I was planning on having salad since they buffet was not renal friendly at all. I did pick though the broccoli and pasta and took just broccoli and had a small piece of really bad chicken French. The rest of the buffet was pasta in red sauce, veal parmesan, and roast beef. I filled my salad plate when I went up to the buffet and when I got back to the table; they had taken the big bowl of salad away. I was really mad. So for $40.00, I had the worse meal.

The function was for my hubby’s 50th school reunion. I knew no one there at all. I went to support him. After dinner, people were milling around and several people came and chatted with us….him. One other wife and I struck up a conversation as the men were chatting. We talked about what we were doing in our resent retirements. The topic never came close to diets until I mentioned cleaning out closets. Then she somehow got on a track about weight.

I don’t know if it is a female thing or because I am a large woman that people feel that have to talk about weight and diets with me. She started down a path of how as she aged she put weight on….. Truthfully, I don’t remember all that she was saying in detail as I tuned her out. I finally looked at her said, “I have been large all my life. Now excuse me, I need to go to the ladies room.”

Why do women NEED to justify their bodies? Also, why do women have to explain when they are at a dinner why they are eating what they are eating? My thinking is, “shut up and enjoy yourself. I don’t care what you eat and I certainly do not want your guilt or judgement.

No one ever said to my rather large husband, “gee… I put on weight as I got older.” If anything a male conversation last night would have been would be more about lamenting about hair loss. I did hear that once with one guy who was talking to my husband. His hair was almost gone but my hubby has a full head of hair. Both of them just laughed.

 

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A Pissy Situation, Part Five. You scream, I scream for Ice Cream

As I lay in bed this morning, I could feel my heart pounding and hear it in my ears. I know that means I had too much potassium. It used to be so bad that it was hard to think with the loudness in my ears. Now I don’t hear it very often because I am watching what I eat. But yesterday was a holiday, and in my family we celebrate with food. I allowed myself a free day. I did not go crazy, but after all the changes I made in the last month, it really impacted how I feel today. Was it worth it? Well, maybe.

The other thing is that I am guilt ridden. I am so food conscious because of my size. I often get peoples’ stares at restaurants as they feel entitled to judge my food consumption. I normally make a face right back if I catch someone glaring at me. It also amazes me that they think they have the right to judge.

My indulgence yesterday was to go to our favorite ice cream stand and get a dish of the best soft serve ever. Their small is huge. I had forgotten how huge. As we approached the stand, this old crow was sitting with a bunch of other folks and glared at us. I just looked at her and made a snarl face. She looked away but then I saw her return to her glare. The other people she was eating with were enjoying their food but not her. I do not think she enjoys much. We got our ice cream and came back out to eat it and there was sour puss staring again. I just ignored her. People do not realize what harm they cause when they look at people with judgment and disgust. We polished off our dishes of delightful twist and we left.

For dinner, we were doing a cookout and I had planned to have a ground chicken burger, mac salad and cole slaw in my daily planning for the day. I decided because we had mowed the lawn and taken a small walk in the park we visited that I had burned enough calories to have one of the freshly baked rolls my husband bought. I have not eaten much bread at all and this was a treat. The burger also was huge. I did share some of it with the dogs, but I ate most of it. It was a good 6 or 7 ounces.

The daily totals were almost double what I normally eat. The protein was at my limit but I usually am way under. Protein and potassium are the two things I am most concerned about in my consumption. Sugar and fat is secondary.

My glucose reading this morning was just fine and not elevated at all. I was worried it was. But I drank a ton of water to help flush out the sugar. That made me realize that I had planned carefully and I was ok with the slight indulgence.

But as I lay there this morning I thought what if all that protein was too much? What if I damaged my kidneys and pushed it to the next level? There is no going backwards for the most part. Once they say its dialysis, that’s it. No one comes off dialysis unless they have a transplant, so I am told.

No one really understands how totally terrified I am of having dialysis. When I first was told, I felt like someone had stabbed me in the heart and kicked me in the gut. There are times now when I am alone that I will weep silently. I feel I am facing a torturous death sentence. Dramatic, I know, but it is how I feel. I am not all that brave and this is too much at times for me to handle. I can’t share this in conversation because unless you are in the same boat, people cannot grasp the fear.

I am my own worst enemy. I worry too much. But being cautious about what I eat is a serious decision. I know too many people who are cavalier about what they eat and then when they end up with a diagnosis, they continue with their bad habits and only get sicker. Then they ask why.

Today I get back on the wagon, so to speak. There is some feeling of success when I am in control. I just hope no damage was done. I will not know for a week until I have labs. I am sure I will perseverate about it the whole time.

 

A Pissy Situation part four: You are what you eat.

     Every month for the rest of my life I will have to have labs done. This is in order to see if there are any changes in my values and if there is a decline in my kidney function. It is like spinning a roulette wheel. The anticipation before going for the labs is tough. But waiting for the results is worse. Two labs ago, I was headed for dialysis in a rapid way.

But I took control of what I could and that was what I eat. I was so gung ho at first but the daily necessity of it does make it weary. I am keeping a food journal using an app called https://www.myfitnesspal.com. I track everything that goes into my mouth. I plan every meal and bargain with myself. If I eat this, I don’t eat that. I find it very helpful to know exactly what the calories are and other components of food that I need to keep track of like potassium and protein.

It also tracks my exercise. And when I say exercise, I mean what I do. I don’t go to a gym. I track what I do around the house and garden. The data base is pretty extensive but you can also find other calculators to measure how much output you do daily. I have been cleaning out and packing up old clothes and items around the house. I have been working on the garden and reseeding the lawn. You would be surprised to find that you can burn over 300 calories an hour just doing work around the house.

For the last years, I have been extremely sedentary due to my job. The only movement I had for the course of the day was to go from one meeting to another. I sat all day. When I retired in January, I was extremely short of breath and tired just standing. Sometimes, going shopping required that I use a motorized cart to get through a large store.

Almost every day I plan an activity that will use mobility. Yesterday for example, we went to BJ’s. It is a huge store and I usually have to ride a cart. Yesterday, I walked it and very rapidly. I haven’t been able to do that for at least two years.

This is a long haul process. I have to admit, it’s horribly hard. My husband and I love to go out to eat. We spend our weekends trying new places or revisiting old. Yesterday we went to one favorite places that has a bakery in the place. Their sandwiches are on fresh baked bread. They also usually have fabulous salads, but when their homegrown stuff is in, which it is not yet. So I splurged and had a sandwich. It was fabulous. But then the temptation was on to have more “forbidden” items, which was hard to pass by. But I did. When I got home, I actually calculated the sandwich into my daily calories, and was not that far over that I could also have an enjoyable dinner. I have to learn to cut myself some slack.

This experience makes me very aware of how easy it is to overeat. People who can eat whatever they want are truly blessed. I watched what other people were eating. They have no idea how lucky they are when they are chowing down without worry. This new concern for me has nothing to do with losing weight to look acceptable. It is all about putting the right things in my body to help my kidneys. My bigger concerns are keeping my sugar low so that doesn’t impact the kidney and low protein and potassium which is hard for the kidney. That means no meats or sweets. The American diet is so based on meat that it’s hard to go out and find places that offer plant based meals. Even salad offerings have chicken or cold cuts (terrible for you).

The information out there on the Internet is so convoluted that people with kidney disease have a real struggle. I am finding that recipes that are supposed to be kidney friendly are anything but. I hope in time to be able to become very knowledgeable so that I can help others who find themselves in the same position.

My labs from May 8th showed some real improvement in my numbers. It was good news after such a plethora of bad in the past few months. It gives me hope that I can hold off dialysis.

 

 

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.