I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: houndawg on January 22, 2012, 03:21:08 PM
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My hubby who went back on hemo dialysis this past July from PD is having a really hard time. He has become disoriented, confused, weak, and can't seem to manage by himself. He has gone from a size 46-48 pants to a 42 just since July. He weights less that he ever has - 186 from 226. He does not drink a lot and spends most of his time sleeping. I'm really concerned that he may be having too much taken off. He gets 4 hours dialysis three times weekly. How do I know if too much is taken off? Are there any symptoms? Please help as soon as possible. Thanks
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Tell them to back off on what they are removing. He doesnt drink alot but does he eat alot? Probably not if his weight is that low. If they won't back off, then go to his neph and tell him/her that they are removing too much fluid.
Or inform your husband that when he is feeling that way to knock the UF down to -0- if he is feeling the "washed out" feeling. Find out what Blood Flow Rate they are running him also. If he is on there for 4hrs each session, then hopefully, they are doing this at a slow BFR.
If they are not willing to help in some way, then find another clinic. This is another reason I do my husband at home! They do not care like they should. Your husband is just a number to most of them. So Sorry, I hope this helps!
Let us know & good luck. Will be praying that they get it straightened out.
lmunchkin
P.S. You may be your husbands best advocate. He may not feel well enough to defend himself, which leaves the ball in your hands. We are here if you need anything.
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Tobe honest, I would have thought not, because this would be imediately apparent as his blood pressure would be too low especially immediately after dialysis, and would manifest as him passing out or getting cramps. I have recently stoppedPD and gone to HD, and have lost a lot of weight obviuslyas a result of losing excess fluid. Maybe this is what has happened to him and he is now at his real dry weight. I am not saying that there is nothing wrong beca use he shouldn'tbe sleeping all the time but maybe. You need to look somewhere else for thecause. What is his haemoglobin like? I tend to sleep a lot if mine is low. Has he had his thyroid function checked?
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Two easy ways to check hydration:
- look at the neck veins. When lying down the neck veins should be visible. When standing up they should not be visible. If when lying down they are not visible, you can not see a bulge and the pulse twitch the skin then that suggests that too much fluid was removed.
- look for a lack of elasticity in the skin tissues. When you pinch normal skin, it immediately goes back to its usual position. If the dialyzor is dehydrated, the skin will go back to its flat position more slowly. The best places to test are the forehead, sternum and inner thigh.
Here is a PDF with a longer more technical discussion: http://www.uphs.upenn.edu/renal/important%20pdf%20ii/hd_flluid%20balance%20and%20dry%20weight.pdf
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His doctor visits every evening at the clinic. He is the one who sets the dialysis time. According to him he is on that long because of his blood pressure. I also know from all the nurses there that almost all his patients are on 4 hours. Dick's is always anemic and takes epogyn. I'm really concerned about his confusion and weakness. In the past three weeks he has gotten to the point he cannot take his meds, blood sugars, nor insulin unless I tell him several times. He is having a hard time remembering what he just did, how do do simple things until I get him started. Yesterday he started diarrhea and has gone thru the night.
I know very well about bad Dialysis places. The only place around here is Wellspan dialysis - my advise to anyone is run the other way. The story is very long so I won't go into it.
Dick is on the top of the transplant list at Hershey. I'm afraid he is getting so sick that when they call he won't be in condition to get one.
Every couple of weeks there is a white basket of flowers put out to commemorate the passing of another patient. This is very depressing and scarey
Thanks for your help. Liz
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Ishe on any meds. That may be causing this? I woulddefinately to my doctor about this. Maybe the high blood pressure is high because it isnot adequately controlled, rather than it being a fluid issue?
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Hi,
We have dialysis today. I'm going to speak with the doctor again. I'm going to ask about the blood pressure again. I have decided to get a second opinion about his treatment, even though it means traveling. He had an MRI of the brain yesterday. We should get results from that tomorrow. Thanks for all your help. I'll let you know.
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how are his labs? high values can cause some of the things you mentioned.
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I haven't been receiving copies of his labs. You better bet your "bippie" that I'll get them from now on. Yesterday afternoon when I came home to take Dick to dialysis he was so confused he didn't even remember we had dialysis. We had dinner as we usually do then went to the center. Just as he got out of the car he had a bout of diarrhea and was in the restroom for about an hour while I cleaned him up. I spoke with the charge nurse and explained everything. I stressed that they not take too much off him last night because he was dehydrated. She said the doctor was not available but he would come out and talk with me later. They got Dick on the machine and I never saw anyone. This morning he was rushed to the ER with blood sugar of 27 and complete dehydration!!!! Last night I suggested that he needed to go to the ER. I've gone over everything at ER and again to the hospital doctor in charge of his case. She suggested that since his MRI taken on Monday showed no brain changes since last spring that he must be suffering from dementia - after all he's 72!!!! Well now I'm really on my high horse. You should have seen the look on her face when I said no way. Rule out the fluid issue then prove to me the dementia. I also let them know that as soon as Richard was out of the hospital I would be consulting another kidney specialist. That really got her attention when I told her it was recommended by the Hershey transplant team that knows Richard quiet well. I'll keep you informed.
Thanks, Liz
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Suggest that you look into changing dialysis units too, since they are quitemhappy to pull off too much fluid even when you have explained the circumstances.
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Today a neurologist came in to examine Dick. He said given the fact that a MRI was done on Monday with no real changes he agreed with me that probably something was wrong with dialysis and his being diabetic. He said a vitamin, I believe K, could very well be out of balance and also electro lights also out of balance. He is going to start treatment for that and then Monday (of course nobody works on the weekend) he would do an EEG and go from there. He also said he would talk with the dialysis team. He said just the amount of glucose given at the ER was enough to throw everything off balance.
Thanks for being there. It helps to talk with someone who understands what I'm talking about.
Liz
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Houndawg:
I am going to say some harsh words here, and because you are the caregiver here, you should at least listen.
Your story reads like a biography. Your duty is to be dangerously assertive in demanding the proper care for your husband. I am 73 and I strongly resent people who write off health problems to age. If you cannot get any better immediate solutions, demand that your dialysis center stop removing any water. Get your Nephrologist by the short-hairs and demand a solution, not advise, a SOLUTION.
I weighed 256 of well muscled body when this all began for me and I lost 40 lbs in six months. I am a slob now but I got the dialysis center’s attention by shouting and demanding, threatening, and writing letters. I was a champion powerlifter holding four California records for 65-70 males in my weight class when this all started. I could afford to lose a few pounds. Your husband may not be able to afford such weight loss.
This is serious, in my opinion, be assertive.
The problem may not be water; it could be a combination of things. Get somebody on the case. Hell, where do you live, I’ll do the job for you. You guessed it, this makes me angry.
Gerald Lively
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I am a strong advocate for my hubby otherwise he would be dead - a long time ago. I am rantng and raging LOUD and STRONG. I am also trying to get him proper attention and get some of the issues resolved. That's why I'm asking questions of you guys who have been there; otherwise, I'd be out riding my horse, going to work, or some other such entertainment i desired. I am fully aware that I need to get him somewhere else but in Gettysburg, PA and York, PA Wellspan is my only choice. We have been going back and forth to Hershey and am on the transplant list. Thier advise is to get another opinion also - but -they will not recommend any place. We cannot go to Hershey for dialysis because it is too far three times a week and they will not do a dialysis eval unless we also do dialysis there. As soon as he is out of the hospital I plan to consult with doctors in Chambersburg, PA, the next nearest town. If not there then Frederick, MD. I just don't want to take him to another dialysis center and go through the same thing. There is no use in moving him unless he gets better care.
you said that this reads like a biography - I assume of yourself - give me suggestions who to seek out. As you are I'm angry and I'm trying to find answers. I'm sure the problem is a combination of things. Now a neurologist is also looking at him. He also said it might be due to dialysis to a degree. He was started on vitiman B1 today to help brain function. Monday (nobody does anything on the weekend) he will have an EEG. Once that is finished I will be bringing him home. Any suggestiions you have would be Greatly appreciated.
I too am tired of everybody assuming he is just old. Heck, I'm right there behind him - I'm not old.
thanbks, Liz
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Dear Liz, I wish I could say more than just that you are doing a great job for your husband, and I hope they find the cauze of all his problems soon. Its a disgrace that as the 'carer' it should be your 'duty' to be assertive, but it is. I am sooo lucky to have my husband, and to have had the opportunity to 'educate' him in the system which is called 'healthcare'. I'm sorry for all of us that it is like this. Keep strong Liz, also don't forget to take care of yourself. Good luck Cas
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I just got word that my chemotherapy will begin again in March. No problem. And, I just returned from dialysis – changed my schedule from Tues, thurs . . . . to Mionday etc.
Well, Houndawg; at first I had to educate myself on renal failure. It was during that research that I discovered a few errors. To avoid this, get a copy of every blood work report, question everything on it, then go find the Dietician at your center. Get a his/her diet report and, again question everything. Find out what your husband’s real dry weight is, then ask the dialysis center how they arrived at the figure they use. Then disregard their version.
Then, never allow a water extraction to beneath the dry weight. Make certain his diet is correct, make sure he has sufficient protein. During all of this, talk, shout, rant to your Nephrologist and demand improvement. Something is wrong and you know it, they should too. After each meeting with your Nephrologist, write up what was said, what happened and send the Doctor a copy. It should read; “We met on (date). So, and so was present. This is my understanding of what happened in our meeting . . . . . . “
Follow up on promise, results and references. Make them perform. I had to cuss and shout in front of twenty patients to get results. Review any and all papers you may have signed; it may be informative. Ask questions here on “I Hate Dialysis”. Get ahead of the game. Be informed. Protect those you love.
In the long run, try home dialysis.
Gerald
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How do I know dry weight - especially if I disregard thier answer? Is there a formula that I should know? Medicine for thiamin (B1) was started yesterday. Dick seemed less confused last night. I know it's too soon for that to have an effect. I intend to ask the nurse if they checked for the thiamin levels before starting med. I also learned that no blood sugar is taken at dialysis unless the patient is "symptomatic"
Does anyone know anyother things I need to look for that would cause his confusion? I can relate the symptoms to dialysis. Richard was taken off PD last summer after our family doctor insisted that Dick's then confusion and weakness was due to PD. After a big fight with the dialysis, "his numbers look great", team he was moved to the hemo team. Dick showed great improvement and was normal again until just recently. I have watched the weight come off from 229 to 190 since July. I have questioned it repeatedly but eveyone insists this is not too much. i am now seeing the same confusion only worse and weakness. If it's not dialysis related it seems strange that the smyptoms come and go.
I'm scared as all get out. Not a month goes by that there is not a memorial bouquet commemorating the passing of someone at the clinic. Of course there is always an excuse never related to dialysis. How do I find out what the mortality rate is for a clinic?
Thanks, Liz :Kit n Stik;
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I'm confused (sorry, I'm pre-D) .... with the large weight loss he's had since July, wouldn't they continue to adjust his dry weight accordingly ? Do they continue to take fluid off when someone is losing weight as they're going through dialysis (and not gaining weight) ? I thought removing fluid occurred when the patient's weight increased between sessions. If he is losing weight like that I would think they wouldn't remove any fluids at all. Sorry for my confusion. I really hope you figure this all out quickly. GOOD LUCK.
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Apparently they keep adjusting the weight down. They are taking off six to seven pounds each time. I'm not sure I understand this. I know he doesn't eat nor drink that much. I'm not sure he even drinks enough to keep from being dehydrated. I do know when I go without the proper amount of fluid for a while I get dizzy, weak feeling and have a hard time thinking. This is exactly what I see in Richard.
Today he was very tired and just not himself. He did manage to get up for a walk but otherwise he just sat in the chair and napped. We played a game of Gin Rummy (one hand) and he played well but as if in slow motion. i am waiting for tomorrow when the EEG will be done. I also plan on calling Hershey again and explain what is going on. If they feel they can help I'll take him right up.
At this point I'm very worried and scared.
Thanks, Liz
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If he is not urinating, get him 32 oz’s per day. If he does urinate, between 32 oz and 50 oz. More advise than that will require a physician.
Check his ankles for swelling. That would be an indication of holding water – he would be drinking too much. If there is no evidence of swelling anywhere, you are okay for now.
Call a doctor.
gerald
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My mom is a diabetic and young in her 50's but she suffered from memory lose due to high and low blood sugars.
We got her some rest in al ong term care facility for a month until her sugars improved and in turn so did her memory. She was bad to the point, she would forget i spent a week visiting or talked to her on the phone etc.
My dad now has her on strict schedule so we can catch the highs and lows before they become a problem.
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Thank you for your advise. He NEVER has swollen ankles. I also don't thing he even drinks 32oz. of water daily, even though he does urinate. I do plan on calling Hershey today. He has an appointment scheduled for Feb2nd. After his EEg and neurological workup I hope to bring him home. Then I will get a second opinion.
Rain - I'm so glad for your post. I agree that Dick would probably do well from being in a nursing home for awhile to stabilize him. From there we could better access him.
Gerald, You are a wonderful poster. It gets hard to yell, scream, ask questions when everyone around acts like you are just a hysterical woman. Thanks for your words. If I may ask why the chemo? Dick's sister os going thru a battle with breast cancer. She had surgery , after under going chemo for three months, the same day Dick went into the hospital. My prayers are very much with you. Stay strong. :bestwishes;
Thanks you guys for being here. Your support helps very much.
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HD, the symptoms of weight loss, confusion, weakness, extreme fatigue, diarhhea, etc. could be signs of inadequate dialysis. Not fluid removal but the cleaning function. How's his clearance level? Kt/v, URR etc. Even though his run time is 4 hours, it may be that he needs more cleaing and less fluid removal. Just a thought.
I sure hope it gets straightened out soon for you both. :grouphug;
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Loonytunes has a point. My Kt/V has been low over the last few months and I've felt the memory lost, being tired, etc. It is not the same as dehydrated. I'm normally at or near dehydration because I get tired of drinking water. After a couple glasses, it begins to taste yucky. Yes dehydration can cause these symptoms, but the cleaning level seems to have more to do with it than dehydration.
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Get that boy some water, at least 32 oz. Yes, It may be something else but he needs water. Since he can urinate, more than 32 oz.
I do chemotherapy because I also have cancer. Yep, cancer and renal failure, cancer caused the failure of my kidneys.
gerald
Still above the grass.
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don't let the techs set how much to take off. you tell them. if they argue with you, argue back. i set mine based on how much i have gained and where i want to end up, not by my dry weight. dry weight is just a wild guess. no one, dialysis or not weighs the same all the time. if he isn't eating well, he's loosing weight and his dry weight will be different from week to week. you have to fiddle with the amount slowly, till you find what works. they should have known better than to take any fluid off when he came in with diarrhea. the machine automatically takes off 1.2 even if set for 0. you solve that by giving saline during treatment or having something to drink. good luck and keep "squeaking"
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Hi, It's been a while since I posted. Dick came home from the hospital and i came down with pneumonia at the same time. Life has been "fun". Right now I am monitoring blood sugar levels and all medications. Dick is not near as confused as he was and he seems to be feeling better. He was released last Wednesday evening so we could make the Hershey appointment on Thursday. The surgeon at Hershey asked how much Dick's insulin had been reduced when he went off PD. Answer - none. That is part of the problem, he thinks. Insulin has been reduced. The confusion is almost gone but it does seem greater after dialysis. This past Tuesday being the greatest. He told me that the nurse had a hard time keeping his BP up. When we got home I checked it and found 78/54. Next morning it was 154/63. I called the center and asked about his BP during dialysis and told them he had commented about it and seemed to be confused after the treatment. After his record was "pulled" I was told that the nurse noted Dick was confused when he came in. That's not so. I was with him all day and at no time did he show confusion. We had a great dinner and even joked with our daughter. I was also told that the nurse had only normal reading for BP. I'm sorry I believe Dick. I have asked for beginning and ending BP, and how much weight was taken off each time he comes in. Tonight I will ask about the Kt/V and URR. What is normal? I really think Wellspan is trying to cover thier butts but I'm not going to stop. I can hardly wait for the kidney.
Gerald you are very much in my prayers.
Liz
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Thank you!
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I am still pre-D for now. Once I sart in center nocturnal dialysis, I will be including a thermometer, my One Step Ultra glucose monitor and the blood pressure montinor I use at home in my dialysis 'goody bag'. I'll be using all three before and after my dialysis. They can take their readings too ....but I'll have my own as well. Do you have a blood pressure monitor you use at home ? Maybe you can take your hubby's BP yourself before he starts dialysis as well. Good Luck
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Thanks, I am monitoring his BP also. Tonight another patient was taken by ambulance to the hospital. of course if you ask the nurses they won't tell you anything. I asked for the KT/V and URR reading from his last monthly blood test. That seemed to raise questions on their part. They said the results were sent to my family doctor and I should call her. When I said I should be able to access his records the said they could tell me what the readings were but could not give me a copy of his blood work up. I let that drop for right now - battle another day. When I asked them to tell me they said his blood was drawn late this month and they would not have his reading until maybe Saturday. Blood was drawn late due his being in the hospital. Strange they couldn't tell me that in the beginning instead of running around the block before saying we don't have it. Is this test done monthly or is checked at every dialysis. I also asked his nurse if his BP is recorded straight off the machine into the computer. He said it was. I asked how Dick's BP was and was told it good. When asked what do they consider low I was told anything below 100 on top. Bottom number does not play into the low reading. Is that accurate? Looking at the machine I saw several drops below 100 but back up in the next reading. The nurse explained that when they speak of blood being low it refers to the beginning and ending numbers. My question - doesn't what happens between matter? Tonight, his begining wgt was 91.5 - ending 88.1. Even this info is given reluctantly.
Thanks guys for being there. I'd be totally lost without you.
Liz
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keep asking for the lab results. you are legally entitled to them and don't have to wait till the dietitian gets around to getting the limited results the center provides you with to you. i get the exact same report the doctor gets whenever i ask for it. don't let them use the excuse you won't understand it. your doctor should explain anything you don't understand. you and your husband have a right to participate in his care. keep pushing and push hard. keep researching everything. the better informed you are the harder it will be for the center to ignore your concerns.