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.