I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: hurlock1 on April 19, 2009, 12:05:55 PM
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What it is, is that I don't know how I'm supposed to feel. I read in here that there are people that feel good on dialysis. That the food tastes better. I don't know how food tastes better. I weigh 314 lbs, have weighed that much for what seems like to me like a long time. I know that I have to be consuming a number of calories to maintain the amount of weight. I have read in here that people's caregivers didn't challenge the patients dry weight enough and they died of congestive heart failure. The nurse practitioner lowered my dry weight and I started ending dialysis with 85/46 Bps and having to wait for 30-45 min before coming home I had other problems with that nurse Practitioner, she was let go to make people in other places miserable. Now there is a new NP and she raised my dry weight and I feel a little bit better after dialysis.
I don't eat bananas, tomatoes, potatoes, nuts, broccoli, or many other foods that I shouldn't eat. I don't eat processed meat, TV dinners, or frozen processed dinners that contain too much salt. I don't add salt to anything at the table. My numbers are fair other than a 5.9 occasionally on my phosphors. I'm a diabetic and the highest number in the last 6 mo was at 145 and usually around 114. I seem to have arthritis in my knees (I walk with a stick) and my hips. and I seem to be weaker than I used to be. So, if you ask me how I'm feeling, I usually say "Not Horrible"
There's all of these commercials on TV that are selling medicines for depression and I think that if I lived in Iraq and half of my family had been blown to bits I'd have reason to be depressed, but basically I'm a happy person.
IT doesn't seem to me that I feel as good as many here on dialysis. I don't feel horrible. When I was in my twenties I had a bad hack because I smoked weed and I felt that I would just die if I couldn't smoke weed. In my thirties I became an alcoholic. (not by choice) and I felt as though if I could drink my normal 12 pack+ or two or a whole bottle of whiskey I would die, When I was in my 40s I got cleaned up with AA and quit smoking cigarettes (anything) and now I'm 60, on dialysis, and can't drink water! I do drink some water, but I take a swig and spit it out into the sink. I really enjoy taking medicine because I can swallow the water I use to take my medicine with. I still have to remove from 3 to 5 KG fluid every dialysis :oops;
What am I doing wrong? :o
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I heard a couple things in that hurlock, and while I am not you, and I can't tell you how you feel, I can speak form my experience.
I see someone who has had compulsive issues (or addictive behaviors) with weed, then alcohol, then food (getting up to 314 takes effort- I've been there).
Now, I hear "I don't know how to feel" That can be a sign of someone who has been used to regulating their moods with substances, and now that they are getting "clean" they are not able to understand or process their natural emotional state.
I would look to counseling. You may or may not be depressed (btw, dialysis is not as bad as losing your entire family, but its bad enough to qualify for a traumatic event) but I hear someone who is still dealing with underlying addictive/ compulsive behaviors.
With mild depression and recovery, finding a way to exercise is important. It's also a part of a long term dialysis plan as well.
Addiction and depression are diseases of isolation. Dialysis can increase your isolation. I would make an effort to connect, re-connect , and to open up with the people around you. Find a way to serve somebody else regularly.
Prayers. PM if you want to talk more.
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I really like wallyz's post and his compassion to try and help.
I have another thought also - after your experience with the nurse lowering your dry weight, then another one upping it (a good response to low BP, incidently) that perhaps you also feel a bit of lack of self control over what is happening to you. While you are doing all the right things in terms of your diet and really trying hard with the fluid you're still putting on a bit too much between treatments - but that can be dealt with I am sure - the main thing is that you ARE trying your best to live with the restrictions.. but sounds like you feel it's out of your control quite a bit.
One thing I would suggest is that YOU take more control of your dialysis by being proactive about your dry weight!! If you feel you've put on weight, or you come off with BP too low or start to cramp and so on then you tell THEM to raise it. Remember it's your body and you can usually tell when things aren't right. I also like to be involved in my treatment settings in terms of the machine settings, how much is being taken off (UF target), the rate (UFR) - I like to use a profile and some nurses don't believe in it.. so now I just set it myself (I'm so cheeky :) )...
I find stuff like that REALLY helps me feel like I am taking some ownership and hence some control of my own treatment rather than just sitting there and accepting what some nurse tells me to do. For instance if I had low BP and some idiot wanted to LOWER my dry weight I'd tell them NO!!
Luckily the staff in my unit mostly recognise that I have enough experience now with dialysis and have enough brain cells left (ie: 1) to make an informed and reasonable decision about my treatment, so we work as a team together and they don't talk down to me or expect me to take their word as gospel which is good.. ie: I feel like I have some respect from the staff.
The other thing is and I really want to be careful here and not be offensive to you but I think you really should try to work hard on taking some of that extra weight off. The weight added with excess fluid can't be good for your lungs and cardio system, which in turn puts extra pressure on your other bodily systems and may be, in part, causing you to feel worse.
By the way in my experience I wouldn't say dialysis makes me feel better as in superman or anything but it DOES make me feel stable at a level I can live and work with. By no means do I feel super (right now I feel mildly in my stomach for example) but I know if I wasn't doing dialysis I'd feel a whole lot worse (or not at all). Don't think it's an instant "pick me up" because I don't see that dialysis works that way.
Just something to think about.
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I don't think you are doing anything wrong.
It's not that I feel good all the time - it's that I try to focus on the moments when I do feel good. There are plenty of moments when I think "Why the hell am I still doing this?" (Those occur almost every MWF when the frickin' alarm goes off at 4:15.) It is a struggle sometimes to be positive, and I'm firmly of the opinion that anyone who is chronically ill is not going to be upbeat all the time without seriously large doses of mood-altering chemicals. When I've had to, I've even taken some of them.
Rerun posted on here somewhere that fluid gains should be no more than 3% of your body weight. At 314, that's 4.2 K, so I wouldn't beat yourself up too much on the 3 to 5. Is it great for your health? - no. Is it a really horrible amount for someone your size? - not really. There's a post on here somewhere about the worst fluid gains, and there are plenty of us who have done some really horrible numbers! It's a hard thing to accomplish - I struggle every time now that I'm back on in-center, and no longer have dialysis 5 days a week to pull off my gains as fast as I put them on.
Feeling weaker can be helped by more exercise and losing weight. It's hard to do when you are on dialysis, but it can be done. I've spent the 2+ years I've been on D fighting with my own food issues, and it's been a long, hard fight. Increasing my exercise and cutting down on my weight has helped with a lot of things, though. After a year and half on home hemo, I had to go back to in-center. I was surprised to find I had more energy on in-center this time than I did previously. Then it occurred to me that I was about 25 pounds lighter than I had been the last time I was in-center, and I was on the same amount of dialysis. The less there is of me, the better the dialysis I am getting can work. I know exercise seems hard to accomplish when you are dealing with bad knees and hips, but even using your upper body to work out will help you burn calories. (I had bad knees, too. I thought it was permanent. Then I lost the first 25 pounds and found out it was the weight, not the knees.)
Weight issues are never easy to solve, and you already know you have an addictive personality, so that just makes things tougher. Pick something small to change, and start there. Tell your doc you want to feel better and have more energy, and see if he has any good suggestions. Can you work with the dietitian to help you lose weight? When mine realized I was serious about it, she helped me with all kinds of things. Sometimes, I think they hate to feel like they are nagging, so they don't put much effort into it until they see you looking for help.
Don't beat yourself up! You're on IHD, looking for answers, and looking for info is always a good first step to making things better.
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I want to thank everyone for their support and help. I was going to mention everybody by name, but I can only remember, Wallys, RichardMEL, Ibeana?. If there were more names, it's because of my poor memory. I am thinking that my apetite has been lower lately. I AM an addict. I WAS A member of AA & NA for 10 years (I quit when I Moved from Houston to Albuquerque because in the meetings, the sponsers kept taking total responsibilty for "Getting their sponees cliean "Oh if it wasn't for me. . .") I have quit taking drugs and alcohol in 1991 l, and quit smoking in 2000. I put the weight on in 1988, having had a motorcycle accident and broke both bones in one leg and separated my hip in the other. I was in a wheel chair for a year and all I did was watch TV and eat. I never have been able to lose the weight. I have gotten below 300 lb a couple of times, being HUNGRY ALL THE TIME! I think that, maybe, after a year on dialysis, with my appetite being lower than what it has been, I can make another effort. gonna' give it a try.
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the key is you have to know your own body. it took me a long time. i'm 5' 4'' and used to weigh 230 pounds. i'd rather eat pasta, lots of pasta, potatoes with butter and sour cream , and sandwiches made with thick slabs of honey wheat bread. all of them no, nos, and not because of dialysis. because my body reacts to the carbs like you wouldn't believe. i can gain weight just thinking about baking a cake. i learned is isn't really what you eat, but how much you eat of it/! PORTION CONTROL. anyone who says it's going to be easy is delusional! it isn't easy, but definitely worth it. start by making sure you get protine at every meal. now that the weather is nicer, take a walk at least 5 times a week. start out slow, each time you walk, go just a bit further, one or two houses. it won't be long before you're walking farther than you ever thought you could. then insist that the nurses and techs do it your way. keep track of your weight coming and going from dialysis. if you gain 2 kg between treatments have them take off 3. your dry weight is really just a wild guess. i ignore mine. i've gotten to the point where i know if my gain is fluid or weight. if i've been watching what i eat, i can pretty much figure it's fluid, if i had spaghetti, french bread/butter and desert for dinner the night before, it's weight. you will probably get static from the dialysis staff, but stand your ground. it's your life and they can do it your way, or not at all. remember average just means some are less, some are more. not everyone is the same. if your blood pressure keeps dropping low, they're taking too much fluid, no matter what your dry weight is set at and is a very good indication that it's set wrong.
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Uggh, I've done the hungry all the time diet. It works, but it doesn't last. The minute you start eating until you are not hungry again, all the weight comes back on. This time, I've done the lifestyle change instead of the diet. I'm eating a lot more fruits, veggies, and fiber, and cutting out the junk as much as I can without losing my mind. I'm making sure I watch my portions, and try to pay more attention to when I'm full. (One of my big issues - the clean plate club crap my parents insisted on.) It's slow, but it's working. I switched to in-center from home hemo, and my appetite isn't as good as it was on home. Like you, I'm looking at that as a plus. I upped my exercise lately, so I'm losing weight faster now, but I average only about 2 or 3 pounds off a month. I figure slow is fine - as long as I'm slowly losing and not gaining!
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If any of you are trying to lose weight may I also suggest that you eat slowly and chew your food really well. That may sound daft but it takes time for our stomachs to signal to our brain that they are full and if you are eating quickly or without paying attention you will have already overeaten by the time you get that signal. Try to set aside time for your food, don't eat and watch TV, pay attention to every mouthful and enjoy it slowly. There are many diets and wonder pills on the market but the only real way to lose weight and keep it off is to eat less calories than you burn up - so eat a little less and move around more is the key. jbeany is right, slow is fine - no one puts on massive amounts of weight overnight so we cannot expect to lose it overnight. Good luck with it all.