A journal of healing

Archive for the ‘CKD’ 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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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 six: Selective survival

“There is only one possibility for survival for you and that will be dialysis.”  When I heard that from the nephrologist, I could not believe my ears. Matter of fact, I sort of denied it for a while. Now it has been brewing in my head for many weeks. The whole visit was so overwhelming that I thought at first I misunderstood her, but I did not. But my advice is to take someone along with you when you go to the doctor. Someone you trust and who will remember what was said.

But I did hear her correctly because my next thing to do was take a class on kidney care and dialysis. Unfortunately, the nurse who taught it was terrible and self-centered. But she too said the same thing. And she also stated that there would be only one type of dialysis for me to choose.

And this sentence, this proclamation of my mortality is based solely on my size. No one looked at any medical chart. No one did an evaluation or in-depth study of my health history. One look at my physical shape and the decision was made.

I get this all the time with medical people. I was going to use medical professionals but there is nothing professional about the instant judgement based on the bias and discrimination inflicted on people of size.

Most of my adult life, before I became sick from a hereditary malady with my blood, I was healthy as an ox. I had normal blood pressure, normal everything including not being diabetic. I was very physical and active. I was just fat. I have been so my whole entire life from birth. I was a pudgy baby. Then it was cute. Doctors used to get so frustrated with the fact my glucose was below normal and it was like they were trying to make me diabetic. I did become diabetic but that was  because of the reaction to medication for the psoriatic arthritis. Matter of fact, ever thing cascaded downward after I had to go on very strong medications. I often wonder what would be if I never needed to take those drugs. How different my life would be?

But this is the cards I was dealt, so I have to deal with it. But I do not have to accept being told that I do not have options because I am fat. No one should. If they had said I could only have this one type of dialysis because of my blood condition, I would understand it. But to tell me that a transplant is out of the question without delving into a complete work up is wrong. To tell me that there is only one kind of dialysis that I will be able to use without knowing my history and for that fact, not being a doctor, was unethical of that nurse.

You cannot imagine how this feels. I know so many large people who face this every day. The declared sentences, the judgments, the uniformed decisions based on prejudice and bias are rampant. Our health care system is not accepting and it is not just for people of size. It is for anyone who does not fit the mold of the desired patient. I won’t even go into poverty and how the poor get treated. That is not this fight.

People think that people of size choose to be fat. The word FAT has such a horrible connotation to it, unlike any other word to describe a human. We don’t cringe when say someone is tall or short. We have learned not to designate a person by their skin in a derogatory manner anymore. (Well some still do) We are offended if someone calls someone by their disability. Why is it an insult to call someone fat? Because our country has been fed bullshit by the medical world and by the media that being fat is the worst thing in the world to be. It is preached by certain religions that gluttony is a sin. Someone who is large is not automatically a “glutton”. Even small children know fat is a “bad” thing.

This is not just about whether or not I can have a transplant. It is about treating people equally. This is just my personal example of a death sentence handed unjustified and without full discovery. It a court of law, it would be thrown out. This is just one small example of how discrimination kills. This is a form of annihilation. “We let the fat people die and they will go away.” Fat people live in a ghetto of isolation all over this country.

As I approach the celebration of another birthday this Friday, I cannot sit back and let this continue. I am becoming a warrior. I am powering up with education. I am gathering information and arming myself with facts. And I will fight this fight as much as I can. I know there are many of us now who will not sit back and let this discrimination continue.

 

 

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.

 

 

What would Mom think?

Today is Mother’s Day. I have been thinking a lot about my Mom the last weeks. She died when I was 23. My relationship with her was not very good most of my life. I often wonder what her take was on our relationship. I also wonder why she was the way she was. Through pictures and letters I discovered a different history and that has helped me to understand a bit where she was coming from and with the way she was.

Mom was the older of two girls. I know so little about my Grandparents. We were told my Grandfather died when Mom was very young. This turned out to be not true. After my Mom died, I got her steamer truck full of things from her life. In it was a box of letters from her father to her. He left the family when she was 15 and moved back to the family homestead in West Virginia. Mom told us that he died from being gassed in WWI. Well, he was gassed, but he died in a sanitarium from chronic alcohol abuse.

My mother must have been so embarrassed that she hid all this from everyone. I wonder if my father knew. I can understand why she did.

My father’s family was very wealthy and upper class living on Long Island. His father was an ambassador from Spain and I am not sure what else he did. He died when my father was three in a tragic accident. He was crossing a rail road and was stuck and got hit by a train. My uncle was also in the car and died. My father’s mother was pregnant with my aunt. Again, not much was ever shared with us about the past. My aunt wrote us all a lovely little book when my father died about growing up. They were well to do and privileged.

My mother married into a dream. She came from Detroit and I am sure there was not much money as her mother worked. The only proof I have the early years of their marriage are pictures of Mom in very lovely evening dresses and at dinner on cruise ships. They had a nice house with domestic help and my brothers and sister grew up attending sailing classes at the Yacht club where my parents were members. Being the youngest, I had a much different upbringing as by the time I came along, the money was gone and my father lost his business.

My Mom kept up pretenses all my life. My Nana, her mother-in-law, was a lovely woman but the truest snob I have ever met. We were not close. I am sure my mother was worried her whole life that she, the little girl from Detroit with hillbilly relatives, would not measure up. I am sure she worried about her pedigree. Hence, she did not speak about it. But she played the role of the grand dame right up to the end of her life.

Her gift to me was to give me some class. I grew up learning about etiquette and an appreciation for the finer things. Our house growing up was filled with silver, crystal and fine linens. We always had a proper dinner and I learned the use and procedures for setting a formal table. All this of course is now useless, which I think is sad. And now, I have what remains of the silver and crystal and never use it. I think my mother would be disappointed if she was still alive. She gave me traditions, some I still hold on to. But my sibling’s relationships are disconnected so the traditions have morphed into my family’s own.

My Mom was diagnosed with terminal lung cancer in July of 1978 and was gone the next January. She did not want to talk about her illness. I think about that time and I wonder how she felt when she heard the diagnosis. Knowing my Father, I am sure she held back her feelings even from him. I was newly married but I spent the last two weeks of her life with her. She was in the hospital dying. They did not have hospice services like they do now. Even then, she did not share much. She did not complain about her pain other than to ask me to rub her back. As she slipped further and further away, we would sit in silence. She was the first person in my life to die and I had no concept of death.

I was the one who received the call that she had passed away. I now wish I had been there with her, but I was unaware that she was that close to death when I left that afternoon. I had to tell my father she was gone and that was only the second time I ever saw him cry. Emotional demonstrations were not allowed in my family. This is a remnant of their upper class behavior. “Stiff upper lip and all.” I never fit in that category and was constantly chided for being so emotional.

It has been almost forty years since she passed. I do not remember the sound of her voice. I only remember her face by pictures. She was the rock and glue of the family and when she passed, the family broke apart. I ended up having to take care of my father for 13 years, which was a huge strain on me. I am still close to my oldest brother, but he practices the same emotional restraint my mother had.

I look around my house and see pieces of her in my decorating. She loved flowers and taught me well about gardening. I have multitude of houseplants, much like she did. I have her love for sterling even though I hate to polish it. There is not much left compared to what we had growing up. My father sold off a lot of it and I remember being furious when he did. I felt like he was selling of pieces of my Mom.

I do not use all the china I have and now I am looking to get rid of it. I know that sounds callous but my nephews have their own or they don’t want it. There is no one to pass it on to. I have Waterford crystal that sits in boxes and other stem wear in a china cabinet. I have linens boxed and collecting dust and mold. No one wants these things anymore. My husband is content with paper plates and vinyl tablecloths.

There are other reminders of my Mom every day. She loved cardinals. I always have had a cardinal family living in my back yard. One time or another they have flown into the house. I took it as a symbol of my mother’s approval of this house.

Even being as old as I am, I do miss her, especially now. I want to ask her how she felt when she was diagnosed. I am facing my own diagnosis of Chronic Kidney Disease, Stage four, which has its own path to death. I want to know her truth. I want to know about her early years. She was only 58 when she passed. I would have liked to share old age with her. I wish she had shared more about who she was instead fulfilling some role she felt obligated to be. There were a few  glimpses of the real Mom in my late teens when my father was traveling and she would literally let her hair down.

But most of all, I would like to know what she thinks of how I turned out. And did she love me.

 

 

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.