I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: paddbear0000 on October 22, 2007, 09:55:26 AM
-
Over the last 2 or so months, my appetite has been diminishing gradually. I'm now to the point where I find it hard to even eat once a day. Some days are better than others, my appetite definitely fluctuates. I just look at food and it turns my stomach sometimes. I have absolutely no interest in meat either. I suspect it has to do with my kidneys. Did anyone else experience this before starting dialysis?
-
All a part of the deal--no appetite, don't want meat of any kind, nausea and constant vomiting. Fun! I eat mini-meals: a cup of soup, or toast, sometimes a slice of cheese. But it can be 4 in the afternoon before I realize I haven't eaten anything since the night before. I try to get some protein in; somedays are harder than others.
-
Yes, yes, and yes, who would believe it huh? me? no appetite? puhlease, lol, but dammit, that is when i lost most of my weight, dont worry, it will be back, (as mine did with a vengeance) :P :2thumbsup;
-
The only thing I wanted in the last couple weeks before I started was sweet stuff - fruit or anything sugary, because the protein all tasted like metal. After a few weeks on dialysis, when I still had no appetite, it finally came back and I actually started regaining weight for a bit.
-
Oh yeah. I could not eat. I had such a metallic taste in my mouth, nothing tasted good. Now here I am. 40 pounds heavier. In one year. urrrrgggh. I even EAT less. But all the bags add calories as well as bulk which I am trying to walk off.
-
I haven't started dialysis yet and I just recently started losing my appetite. I had my fistula done on 09/27 and it's really been since around then. I told my dietitian at my transplant evaluation that I felt it was all psychological, you know just starting this long journey and all. She looked at my labs and said that my appetite should be declining.
It's hard to tell with me because I've always been an "eat when it's TIME and NOT when I'm hungry" type of person (I got that from my Dad). I can convince myself I'm hungry just by watching food commercials. But lately that's not the case. Nothing looks or sounds good. And when I do eat something it doesn't taste as good as I remember. No weight loss yet, though. ??? ???
-
Yes, Paddbear. Although, I'm pre- dialysis I have very little appetite. It has become increasingly worse. I made a roast the other night. Most of it ended up in the disposal. I thought I was just becoming vegan. I hope your appetite improves. Take care.
-
Well, I just got back from my appointment with my GP. What a waste! He thought it was just for my thyroid follow-up and apparently that all th etime they scheduled me for. Well, I was not about to let that stop me from complaining about my nephro! I told him i wasn't happy with the nephro and I wanted a referral to someone else. I explained that he was doing nothing for me too. All my doc said was, he never went into nephrology because of the ups and downs. Huh? He went on to explain how there are no other renal groups in the area and that if you don't get along with one in the group, you won't get along with any since they all practice the same way. I had already explained to him that I wanted to be referred to a nephro at the hospital that I'm looking at for my transplant, but he seemed less than thrilled. We didn't even go over any of my other issues (anemia, anti-depressant, RLS, no appetite, etc.). I feel like I'm going down hill and no one is listening to me or even cares!!!! :rant; :banghead;
-
We care! :grouphug; Sorry about not liking your neph. I love my neph. I trust him whole heartedly.
Good Luck on finding a new and improved nephrologist!
-
I haven't started dialysis yet and I just recently started losing my appetite. I had my fistula done on 09/27 and it's really been since around then. I told my dietitian at my transplant evaluation that I felt it was all psychological, you know just starting this long journey and all. She looked at my labs and said that my appetite should be declining.
It's hard to tell with me because I've always been an "eat when it's TIME and NOT when I'm hungry" type of person (I got that from my Dad). I can convince myself I'm hungry just by watching food commercials. But lately that's not the case. Nothing looks or sounds good. And when I do eat something it doesn't taste as good as I remember. No weight loss yet, though. ??? ???
Exactly! I've been like this for 2 months and no weight loss! What is your creatinine kellyt? 2 months ago, mine was only 3.1. My doctor said to me today that he didn't see my labs as being bad enough to cause problems--but that was 2 months ago! He said to just wait to here from the transplant center (my nephro referred me to see them to discuss options). I haven't heard anything and it's been 2 months. I just don't know what to do anymore! :'(
-
Ooh man, honey! Not only do you need to find another neph, you need another gp, you don't need someone like that right now!! Your GP should be in your corner, fighting for you, darn it. We can't do anything, but we DO care. :grouphug;
-
I see my neph. every three months and have my labs drawn at that time and I think my creatinine has been at 4.2 since at least May 2007, maybe longer. When I went for my evaluation on Thursday the dietitian mentioned my GFR being at 12. Now, I'm not sure what that is, but that is why she said my appetite should be declining. Can you tell me what GFR is and why it effects appetite?
-
GFR is Glomular Filtration Rate and it is the measure of how well the glomerulus in the kidney are filtering your blood. Basically, it's how well your kidneys are working. That's how they determine what stage you are in. As far as what it has to do with appetite, I have no idea. I'm actually in the process of designing a website on kidney failure for a class project, and have done tons of research, but never came across anything like that (or even about loss of appetite).
-
That's funny, because when my transplant coordinator called me the next day to instruct me on my 24-hr urine (like I've never done one before - duh!) :banghead; I told her what the dietitian said and she had no clue as to why my dietitian even looked at my labs. And although she didn't tell me what GFR was, she did say it had nothing to do with my appetite. That's why I'm confused. But I guess I can conclude from what you were saying and from what I read in a thread further down my kidney function must be at 12%. Or there abouts....
My neph. thinks he can keep me off dialysis for another year (he told me this in August), but we're starting the transplant work-up now in hopes to transplant before needing dialysis. How long have you been doing dialysis? Have you ever had a transplant? Are you on "the list"? I'm getting my 2nd fistula on the 31st. My wrist one isn't working at all. Never has. I'm not looking forward to having it in my elbow! That seems painful!
-
I'm not on dialysis yet, nor am I on the list. My nephro does nothing! He hasn't put me on anything, he hasn't said anything about diet, nothing. He has mentioned that I should start talking to transplant centers. I filled out an application to go visit the Ohio State U. Medical Center (they do kidney/pancreas transplants), but that was 2 months ago and I haven't heard anything. Everything I have done as far as diet, has been self-imposed from learning about it on IHD. I'm in the process of trying to find a new nephro. The only problem is, we live in Dayton, OH, and there really isn't much choice here. I have to go to Columbus (1 1/2 hours away) to see a good nephro.
-
Paddbear, have you followed up on your application? You need to call these people almost on a daily basis and get your name heard, dont wait for them to call you, you will be waiting forever, good luck :waving;
-
I haven't yet been placed on any sort of special diet. The only thing he's mentioned is to watch my protein intake and stop or extremely reduce my sodas. I don't second salt anything and I don't put cheese on burgers or sandwiches, but I do eat dishes that have cheese in them. I've never been told to restrict fluid, tomatoes or anything like that. But I know it's coming. I pray that I'm one of the lucky ones that can drink more than 1 liter of fluid a day. Fluid will be my downfall!
Good Luck to you. If I had a bad nephrologist I would be living life all wrong. Up until August I was really living in denial. If anyone asked I would just say that I had a "kidney disorder". I didn't accept "disease". I ate whatever, whenever, however I wished. I've never been a alcohol lover, so no problems there. But I definitely didn't feel "sick", even though I was getting more and more weak and tired everyday. That's my only physical symptom, really.
-
People don't usually begin dialysis until they have a creatinine of between 800 and 1100 (8.0 and 11.0), depending on symptoms, so in the 3.0 to 4.0 range there should not yet be serious subjective symptoms of the disease, though diabetes can make all renal symptoms seem worse than they do for non-diabetic patients.
Going to a GP when you are a renal patient only has the amusement value of proving to yourself how much more you know about your disease than the doctor -- and that's even if you know nothing more about it than what you read in a Reader's Digest article once a few years ago.
My own onset of renal failure was so sudden, going from perfect renal function to total kidney failure in less than two weeks, that I did not have a chance to notice any decline in appetite before starting dialysis. However, while on dialysis I had little appetite and would often skip a day or two of eating. On occasion I would go as long as four days without eating and it did not seem to bother me. Now, even two years after my transplant, I still have absolutely no appetite, and I have to force myself to eat food, which I regard merely as 'anti-starvation medicine.'
-
I agree with stauffenberg... your creatnine's are both pretty low to be going through the 'renal failure symptoms'. At least for me anyways, I didn't go through them until mine was up to 6.0+.
-
No, I've always had a good appetite. I was advised to limit protein,whole grains, phosphorous, potassium and salt. I was pretty good from first diagnosis 2001 to now. Except for two ocean cruises, when the food was plentiful and I made darn sure I got my money's worth. I had some nausea when I first started dialysis, when they were taking out too much fluid and they were trying to determine my dry weight. But now I'm back to normal and pretty much eating everything I like! I never lost any weight. My husband would like me to lose ten pounds, but I'd Rather do it with exercise than by denying myself food! I love to cook and I love to eat!
-
The first few months of Dialysis as my body was adjusting to the treatment, I was throwing up almost every day and wasn't very hungry. I eventually fell to 52kg (about 114lbs.). I'm only 5'7", but I looked pretty frail. Slowly my appetite returned and the vomiting subsided. Today 3 1/2 years later I'm back up to 60kg (about 132lbs.) and feel much better.
If you go for a time without eating regularly you're going to feel even worse. Some days I still have trouble with appetite, so occasionally I have to force myself to eat to keep my strength up. Give it time and it'll return.
-
It is a combination of all the lab values that helps the neph determine when dialysis begins. Many start at 5 or 6 because of other things going on. Bottom line is you have to trust your neph- thank God I like mine.
About the transplant center--you need to keep contacting them. Don't wait for them to call you. My neph sent them a letter, then I called them to get the ball rolling. You need to be very pro-active. It is a slow process and can be very frustrating at times.
-
Think I had Paddlebear's neph for a while. No advice on diet, no advice on anything. At one point I asked for a scrip for an anti-depressant that would be compatible with my kidney situation. He replied: "see a doctor about that, he can look in his PDR just like I would." I waited a day, then wrote him a letter "firing" him. I told him I could not imagine that a neph with patients on dialysis was not conversant with meds to fight depression that would be kidney compatible. He wrote a hand written letter of apology (didn't have to go in my file, I'm sure) but he stayed fired. This at a major medical center./bobt
-
I lost my appetite for about 5 weeks after pd catheter surgery but it returned with a vengeance soon after starting dialysis. I am dry during the day so no bloated feeling.
-
i dont have much of an appetite either i eat once a day, maybe twice, but thats not often...i do however get cravings for sour things like lemonade limade iced tea and sour candies
-
i dont have much of an appetite either i eat once a day, maybe twice, but thats not often...i do however get cravings for sour things like lemonade limade iced tea and sour candies
I have been doing PD for about a year and 1/2 now and i just started on this lemon kick too, i wonder what that is all about? I dont crave food, i crave lemonade :urcrazy;
-
Yes. Definitely. I lost about 20 pounds over the last 5 months. The first couple of days of PD were rough too since that full feeling was sooooo uncomfortable. Now, over two weeks after starting I am absolutely ravenous. It will be good for me to put a little weight back on (I went from 105 to under 85!) so I have welcomed being hungry again.
-
Very good question. In about the 9 or 10 months before I started I did lose most of my appetite. I was telling myself that I was on a diet and only eating one meal a day (lunch). It is amazing how we can convince ourselves of something as silly as that and actually believe it. I lost around 45 lbs. during those months. I never threw up but after every meal I did experience intestinal discomfort.
All of this changed after I started dialysis. My appetite was back and the problem I mentioned before completely went away.
-
Yep! I weighed 90 lbs when I started dialysis in Oct. 2002.
-
I never threw up but after every meal I did experience intestinal discomfort.
I have the exact same problem!
-
I lost a bunch of weight before starting dialysis...but mostly because two surgeries took out my big ol' diseased kidneys! I have regained my appetitie and have put back on a couple of pounds, but mostly seem to have found a good weight for me to handle daily home hemo and still have energy and strength to work fulltime as well.
-
;D dont worry about it Goofynina, i believe the whole world should bow to the awesomeness that is lemonade. even though it has the unfortunate side effect of killing tooth enamel :p
-
I threw up during and after dialysis for the first couple weeks. I had waited longer than my doctor wanted me to so, vomiting was my body's way of ridding toxins! I have intestinal problems but that's because I'm missing a large chuck of my sm. intestine. I just have to eat smaller portions and eat more times a day. So instead of eating 3 regular meals I eat 4 or 5 smaller meals. I make sure that I get lots of protein. Also for the ones who get nausea, try crackers with unsalted tops or get salt free corn chips from you local health food store! Ginger ale works well for me too! I use the Thomas Kemper Ginger Ale. It's made with real Ginger. I used to have nausea on a daily basis and my nephrologist prescribed something for me so that I could eat.
-
i also crave lemonade. After I finish my hemo, I walk to the hospital cafeteria and buy a large bottle of lemonade and chug it down. I love lemonade.Ii even eat it frozen out of the can, I believe the early romans treated kidney disease by eating lemons. Something about lemons being an alkali-forming food. Even tho they taste sour and acidic.
-
That's interesting, about the lemonade. That's my drink of choice when I go out to eat...and I add lemons when I drink tea. Interesting.
-
thats pretty cool. maybe theres somethign special about lemons, we should do a survey or something
-
You know what a nephrologist told me about the no hunger thing.... I've seen many nephs because I'm such a "problem" child. Everything that can go wrong with a renal patient, I've gone through.... You name it, I've had it....and ALL of the nephs agree that the reason why I'm not hungry is due to the failing kidney. I've just been told that it's normal to not have any hunger when your kidneys are failing. It's a sure sign of needing to start dialysis. Since I've been dialyzing, I've realized that the first sign of inadequate dialysis is the lack of hunger. They say that it's just your body telling you that something isn't right with the system.
-
That makes sense to me, but how come my neph didnt tell me that :banghead;
-
The more I read about others nephs, the more I realize how lucky I am. He warned me that I may start throwing up long before it began. It does help when you know others are going through the same thing. As always, knowledge is power.
-
the funny thing about some doctors is that they can be oddly self centered "if i know this the patient should know it too' so i look stuff up before asking them just to see if i can throw them off
-
Fluffy,
I CRAVE lemons and have the whole time I've been on dialysis. Here in the south (NC) when you go out to eat at a restaurant, they put lemon slices on your glass of iced tea when they bring it to you. All of my friends/family pass their lemon slices to me to eat, and I eat the whole thing -- and sometimes ask the waitress to bring me more lemon slices on a saucer!
As for weight loss, my ESRD came on quickly, so I didn't notice it too much. I was 375 pounds when I started hemo (almost 13 years ago). Six months later, I weighed 225 pounds -- and I wasn't even trying to lose it! When I got my transplant (5 1/2 years later), I put on the pounds again, and got up to 275. When I went back on dialysis (3 years after that), I started losing again and got down to 200 pounds. When I started Home Hemo (three months ago), my appetite picked back up. I'm now around 250. When I lost the original 150 pounds, I gave away my "fat" clothes, but I don't do that anymore. I have "skinny" and "fat" wardrobes in my closet.
-
I found out at my most recent neph appt on Thursday that my GFR is 18. My creatinine is 4.6. My appetite is definitely changing, but not severely. I find myself eating smaller portions - that's once I can finally decide on what to eat. Nothing sounds good anymore. Also, my taste is changing as well. Things I used to love just don't taste the same.
-
Some transplant Center have long waiting lists to get in for evaluations. My center had a one year wait time. Because I had additional injury to my one functional kidney (botched procedure) I was evaluated 5 months later.