I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Black on July 07, 2006, 01:49:08 PM
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Mike had his fistula done the end of Jan -- hasn't used it yet. He worked on the bathroom floor yesterday afternoon, cutting and pulling up wet carpet -- he leaned on that arm, bent at the wrist, palm down on the floor as he worked -- off and on for about 20 minutes, and put in the toilet. He just got up from a nap at 4 PM today, so he may have had his arm bent or conpressed as he napped. Anyway, his arm up to his elbow is very swollen and is very warm, but there is no pain.
I called the Nephs office, spoke w/ his nurse. She advised to elevate the arm and apply ice 'til swelling goes down. If swelling does not go down, then call the Doc on call this weekend. If it continues to swell, go to ER.
Based on previous experience with medical personnel, I do not trust her advice, and I am asking for opinions from you.
Also, it may be relevant that he lost the "buzz" in the upper two inches of his fistula several weeks ago -- Neph checked it a couple of weeks ago on routine visit and said it is fine.
Thanks,
Lorelle
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I personally would go with the ER visit.
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my husband just had his Fistula put in in may, we are not sure how much he can do with the arm or exercise it, we live not to far from you in Spartanburg Co. He is not on dialysis yet, last check he had a 5.4 Cretin reading. and is at 17% function .we are leaning towards PD dialysis are you?. but he is getting to have more bad days then good, we are moving into a new house and I'm worried about the arm , should I just not have him do anything? rather tan take a chance of him injuring the arm. hope your husband is doing OK, This whole thing is confusing to me ,the diet is confusing any suggestions , Joe hates rice,pasta etc. likes meat and potatoes. and hates the twice boiled ones no taste to hem he says..Frida Byers
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I personally would go with the ER visit.
Thanks for the suggestion and I agreed, but he wouldn't go! :( >:( He kept ice on it for about an hour, kept it elevated off and on rest of the evening. Would probably have done more but his uncle died a few days ago and he went to the funeral home for about an hour. Much of the swelling had gone down by this morning but it's still swollen and still a little warmer than the other one. He went to the funeral earlier today. I'm hoping it's better when he gets back tonight but I suspect having his arm hanging down so much may have made it more swollen. So far he has had no pain so he is not that concerned. GRrrrrr, stubborn man. >:( If it's not back to normal by Monday I'm going to insist that he go see a Doc.
If it's necessary on Monday, I can't decide who he should see -- the vascular surgeon who did the surgery in Jan, or the Neph, or go to the Hosp ER so they can draw blood and/or send him upstairs for an ultrasound?? ???
He said last night that the neuropathy is more noticeable in the fingertips on both hands. I don't quiz him about his diet -- that's his responsibility -- but I suspect he may not have been as careful w/ his diet in the last few days and may have had too much phos. Southerners have quite a spread when there is a death in the family and it may have been too much temptation. That doesn't concern me as much as a possible problem w/ his fistula arm.
Thanks again,
Lorelle
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I don't quiz him about his diet -- that's his responsibility -- but I suspect he may not have been as careful w/ his diet in the last few days and may have had too much phos. Southerners have quite a spread when there is a death in the family and it may have been too much temptation. That doesn't concern me as much as a possible problem w/ his fistula arm.
Don't quiz him, but you should be vigilant. Both his diet and care of the fistula are two of the most important things at this time.
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I don't quiz him about his diet -- that's his responsibility -- but I suspect he may not have been as careful w/ his diet in the last few days and may have had too much phos. Southerners have quite a spread when there is a death in the family and it may have been too much temptation. That doesn't concern me as much as a possible problem w/ his fistula arm.
Don't quiz him, but you should be vigilant. Both his diet and care of the fistula are two of the most important things at this time.
I know and I agree -- guess I should have made that more plain. When we first started on this journey toward dialysis, we discussed it and divided the duties. We worked together in his business for almost 20 years so we work together well and know where our strengths and weakness lie.
We decided it would be counter productive for both of us to try to keep up everything, especially both watch his diet and monitor everything he eats. I did all of the research and gave him a synopsis of the guidelines and websites where he can find good dietary info. He does most of his own cooking and monitors his own diet, including what he drinks. He gets his own prescriptions and keeps track of his meds entirely. He monitors his fistula and keeps track of how much he is exercising. He monitors his BP. He buys his own clothes, does his own laundry, and cleans up after himself, including his bathroom. He takes care of his dog. He keeps his own family up to date on his health, has his own checkbook and keeps up with the bills for which he is responsible. He either keeps up the yard or hires someone to do it.
I make his Doc appointments so I can schedule around my work. I schedule his blood draws. I remind him of the appointments the day before. I do all of the on-line research. I made the calls and did the research on the local dialysis clinics, found the NxStage machine and contacted NxStage. I keep in touch w/ the dialysis clinic in Atlanta, make sure they get copies of all of his blood tests, and make all of the calls to the Doc's offices. I keep up w/ all of my business related stuff, the rest of the house, all of my personal stuff, most of the grocery shopping, and my three dogs.
When we go to see the Neph we all three discuss any new information I've found on line, his blood tests, his diet, his latest symptoms, etc., then he decides what he wants to do until the next visit. I don't make any decisions for him but I am insistant that he weigh all of the info and get feedback from the Neph.
After we train on the NxStage we'll discuss everything again and probably realign duties. My business will still be my full time job and his dialysis and his health care will primarily be his full time job. I will probably still be the one making appointments and calls and still be the one on-line. But, if he is able to return to work, we'll have to realign duties again.
We found out many years ago that both of us trying to do everything didn't work. Besides, there are areas where we just had to agree to disagree, and that's also how we wound up w/ our own checkbooks and divided the bills. We decided we had weathered enough in our marriage in the early years that we are well prepared to cope w/ anything, and that includes kidney failure. Yes, we still have rough spots, but usually not at the same time and we support each other pretty well.
Wow! Way more than you wanted to know, but feels good to put it in writing and remind myself that we are coping.
Thanks Epoman for giving me a place to do it.
Lorelle
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Lorelle,
My hubby and I keep separate accounts. He pays household bills and I take of children and my own bills. We both are caring for our own health problems, but we both sometimes need help from each other. He has had a recent injury so he is not working right now. I will go back to teaching full time July 26. So it does work if you let it work out. We tease each other about what we should or should not be eating. But we are both adults and know the consequences of not eating right. Sounds like you guys are doing okay.
I would have he vascular surgeon who did his arm look at it. They can make a better decision or take him to emergency room and let them call the vascular surgeon on call for the night. I hope all goes better.
Katherine
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Lorelle,
My hubby and I keep separate accounts. He pays household bills and I take of children and my own bills. We both are caring for our own health problems, but we both sometimes need help from each other. He has had a recent injury so he is not working right now. I will go back to teaching full time July 26. So it does work if you let it work out. We tease each other about what we should or should not be eating. But we are both adults and know the consequences of not eating right. Sounds like you guys are doing okay.
I would have to vascular surgeon who did his arm look at it. They can make a better decision or take him to emergency room and let them call the vascular surgeon on call for the night. I hope all goes better.
Katherine
Thanks, Katherine. I really appreciate your comments regarding division of duties. I have a friend who thinks we're both nuts ;D
Hope your husband is doing well and you're enjoying the few weeks you have off.
If his arm is not better by Monday, or gets worse, we'll do one or the other.
Thanks again.
Lorelle
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I would go with the surgeon. I find they are better to ask about the fistula than any Neph!
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Hi Black,, Did your neph give you a rubber ball for your hubby to exercise his arm?
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You are not nuts. I figured if anything happens to him I have my own accounts set up already. When my mother divorced my father she was making twice as much money as he was, but credit companies would not give her credit. She had a heck of a time. I figured I better have my own credit rating,
My friends think we are nuts,too.
I am not really enjoying my time off right now. Hubby is recovering from his accident and we are tired and having to adjust to new stuff in our lives. Like a wheelchair, a vacuum pump on his leg, a stump for a left leg, antibiotics every six hours. He is depressed and so am I, but we are going to make it!
Katherine
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Go to the Vascular Surgeon. He will send you to the ER if he wants an ultra sound. Ask him to call a head so you don't have so much red tape when you get there. That is if he will go! Sometimes it is not stubbornness, but we get fed up with the whole business of dialysis.
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Hi Black,, Did your neph give you a rubber ball for your hubby to exercise his arm?
No, and no one we saw even mentioned exercises -- BUT I found out about exercises and the hand ball on-line months before he had the fistula surgery. He was determined that the fistula not be in his dominant arm (read about that on-line as well) so he exercised diligently for many weeks prior to the first surgeons visit. When he went for the Doppler he refused to allow them to do his dominant arm. He began gently exercising again just a few days after the surgery. He still uses the ball several times a day. BTW, he has NO scar from the surgery -- doc did good!
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No offense but if theres ever a problem with your fistula then you shouldn't be asking about it online instead of getting it looked at. Get to the ER or doctor straight away. It could mean the difference between saving it and losing it. If the buzz has gone in part of it and its swollen, there may be a clot forming. My first fistula clotted and even surgery couldn't save it, so I had to get another one on the other arm. Your vessels are your lifeline, if you lose a fistula then that is possibly one less potential spot for use in the future if you need another fistula created. If theres nothing wrong then thats great, at least you can say you had it looked at.
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my husband just had his Fistula put in in may, we are not sure how much he can do with the arm or exercise it, we live not to far from you in Spartanburg Co. He is not on dialysis yet, last check he had a 5.4 Cretin reading. and is at 17% function .we are leaning towards PD dialysis are you?. but he is getting to have more bad days then good, we are moving into a new house and I'm worried about the arm , should I just not have him do anything? rather tan take a chance of him injuring the arm. hope your husband is doing OK, This whole thing is confusing to me ,the diet is confusing any suggestions , Joe hates rice,pasta etc. likes meat and potatoes. and hates the twice boiled ones no taste to hem he says..Frida Byers
Have you seen a dietition? Its probly a good thing that he doesnt like rice or pasta, as they both contain alot of fluid, which you need to count as part of the restriction. The diet is awful, and sometimes you feel like there is nothing you can eat. Its important to know how much of certain foods you can have and that you follow the diet as best you can. Everyone allows themselves the occaisional treat which is ok as long as you dont over do it, its all about common sense. Diet is even more important when you are on hemo. If your husband hasnt started dialysis yet, then he is probly allowed to be a bit more free with what he can eat. It all depends on his blood results. Things like potatoes, bananas, stone fruit, tomatoes, chocolate, and coffee, are all high in potassium (K) so are best eaten in small amounts. Everyone is different, some are more sensitive than otheres with regards to what they can eat. Its best to choose foods with a K content of less than 200mg per serving. But hardly anything has K as part of the nutritional content so that makes it hard when eating packaged foods. The general rule here is, you can have 1mmol of K per kg of body weight. 1mmol = 39mg. If you think of the "mmol" as points, it makes it a bit easier. Your dietition will let you know how much you can have if you ask, and can tell you of the side effects of not following the diet. I was the only patient who asked for a detailed list of how much K foods contained. It was a great help as most of the things you thought were ok, werent. A tip to help reduce potassium in vegetables is to cut them up small, remove peel, and soak in water for 1/2hr-1hr before cooking. Tip out the soaking water and replace with fresh water and boil veges for as long as you can and discard cooking water. This doesnt eliminate all K from vegetables though.
Heres a couple of examples...
1 glass milk or 1 cup yoghurt 10mmol (10 points) or 390mg
1 medium tomato, potato or banana 10mmol (10 points) or 390mg
5 strawberries 5mmol (5 points) or 195mg
40 slices cucumber 5mmol (5 points) or 195mg
20 grapes 5mmol (5 points) or 195mg
1 cup orange juice 18mmol (18 points) or 702mg
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Hi Black,, Did your neph give you a rubber ball for your hubby to exercise his arm?
No, and no one we saw even mentioned exercises -- BUT I found out about exercises and the hand ball on-line months before he had the fistula surgery. He was determined that the fistula not be in his dominant arm (read about that on-line as well) so he exercised diligently for many weeks prior to the first surgeons visit. When he went for the Doppler he refused to allow them to do his dominant arm. He began gently exercising again just a few days after the surgery. He still uses the ball several times a day. BTW, he has NO scar from the surgery -- doc did good!
Well I don't understand why he had to refuse his dominant arm, they usually put the fistula in the non-dominant arm. :-\
- Epoman
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Well I don't understand why he had to refuse his dominant arm, they usually put the fistula in the non-dominant arm. :-\
- Epoman
Because the first surgeon he saw said there was probably less than 15% chance of getting a working fistula in the left, non-dominant arm and said the right, dominant arm looked better. That's what has happened to several people I have spoken to on-line and that's why we went to another surgeon. The new surgeon ordered Doppler done on BOTH arms and Mike was afraid that if he thought the dominant arm looked much easier the he would use it.
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my husband just had his Fistula put in in may, we are not sure how much he can do with the arm or exercise it, we live not to far from you in Spartanburg Co. He is not on dialysis yet, last check he had a 5.4 Cretin reading. and is at 17% function .we are leaning towards PD dialysis are you?. but he is getting to have more bad days then good, we are moving into a new house and I'm worried about the arm , should I just not have him do anything? rather tan take a chance of him injuring the arm. hope your husband is doing OK, This whole thing is confusing to me ,the diet is confusing any suggestions , Joe hates rice,pasta etc. likes meat and potatoes. and hates the twice boiled ones no taste to hem he says..Frida Byers
Have you seen a dietition? Its probly a good thing that he doesnt like rice or pasta, as they both contain alot of fluid, which you need to count as part of the restriction. The diet is awful, and sometimes you feel like there is nothing you can eat. Its important to know how much of certain foods you can have and that you follow the diet as best you can. Everyone allows themselves the occaisional treat which is ok as long as you dont over do it, its all about common sense. Diet is even more important when you are on hemo. If your husband hasnt started dialysis yet, then he is probly allowed to be a bit more free with what he can eat. It all depends on his blood results. Things like potatoes, bananas, stone fruit, tomatoes, chocolate, and coffee, are all high in potassium (K) so are best eaten in small amounts. Everyone is different, some are more sensitive than otheres with regards to what they can eat. Its best to choose foods with a K content of less than 200mg per serving. But hardly anything has K as part of the nutritional content so that makes it hard when eating packaged foods. The general rule here is, you can have 1mmol of K per kg of body weight. 1mmol = 39mg. If you think of the "mmol" as points, it makes it a bit easier. Your dietition will let you know how much you can have if you ask, and can tell you of the side effects of not following the diet. I was the only patient who asked for a detailed list of how much K foods contained. It was a great help as most of the things you thought were ok, werent. A tip to help reduce potassium in vegetables is to cut them up small, remove peel, and soak in water for 1/2hr-1hr before cooking. Tip out the soaking water and replace with fresh water and boil veges for as long as you can and discard cooking water. This doesnt eliminate all K from vegetables though.
Heres a couple of examples...
1 glass milk or 1 cup yoghurt 10mmol (10 points) or 390mg
1 medium tomato, potato or banana 10mmol (10 points) or 390mg
5 strawberries 5mmol (5 points) or 195mg
40 slices cucumber 5mmol (5 points) or 195mg
20 grapes 5mmol (5 points) or 195mg
1 cup orange juice 18mmol (18 points) or 702mg
That is very good! Thanks for that info :)
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No worries angieskidney, if you or anyone need any more help feel free to ask. I did have a big list but I gave it to another patient and they lost it :-\ I remember bits of it, it was very handy to have. Perhaps we could start a nutrition support thread for those who dont know what to do about diet. I find alot of people havent got a clue and have only been given minimal information, which I think is rediculous.
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No worries angieskidney, if you or anyone need any more help feel free to ask. I did have a big list but I gave it to another patient and they lost it :-\ I remember bits of it, it was very handy to have. Perhaps we could start a nutrition support thread for those who dont know what to do about diet. I find alot of people havent got a clue and have only been given minimal information, which I think is rediculous.
I think that would be a GREAT idea! And have it stickied so that it is easy to find! A whole new section dedicated to diet! I mean it would be suitable for a place such as this which is in demand for patients who want the facts and want it straight and not sugar coated like some medical staff give it. Also patients can give you better tips than any dietician can sometimes!
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Thanks angie. I get sick of seeing so many renal patients that have absolutely no idea about the diet and how important it is and what can happen if you dont follow it. Im more than happy to post anything I know, and if I can ill see if I can get another detailed list. I did have one but I gave it to another patient when I started nocturnal and they lost it.
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Hi Amber, I am sure alot of us are pretty well aware of the renal diet, i personally choose what i eat but in moderation, as i am sure alot of us do. I dont think it is bad to endulge every once in awhile, such as you and your cocoa pops, Rerun and her milk or me and my 6 oz of tomatoe juice, its not like we do it all the time. Or maybe some of us just cant afford to buy what is on the renal diet and we try to make do with what we have. I know it would hard for me to buy seperately for me and for my hubby, so, i just try and eat a little of what he is eating and be done with it. I think it is great that you will post the renal diet, i would love to see it, but dont think we dont know about it already. God, with the dieticians on our ass, how could we ever forget, lol....Looking forward to it though. Thanks
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Hi Amber, I am sure alot of us are pretty well aware of the renal diet, i personally choose what i eat but in moderation, as i am sure alot of us do. I dont think it is bad to endulge every once in awhile, such as you and your cocoa pops, Rerun and her milk or me and my 6 oz of tomatoe juice, its not like we do it all the time. Or maybe some of us just cant afford to buy what is on the renal diet and we try to make do with what we have. I know it would hard for me to buy seperately for me and for my hubby, so, i just try and eat a little of what he is eating and be done with it. I think it is great that you will post the renal diet, i would love to see it, but dont think we dont know about it already. God, with the dieticians on our ass, how could we ever forget, lol....Looking forward to it though. Thanks
True and all our diets are NOT the same ;)
I was told by my dietician that I can only be bad right after blood work (opps I wasn't supposed to say that) but I mean .. only a little bad .. not very bad. You have to be in control of your own health so that you can prevent worse things from happening like calciphylaxis and hyperphosphatemia!! :)
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My dietitian tells me I can cheat the mornings just before I have dialysis. AND I DO!!
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My dietitian tells me I can cheat the mornings just before I have dialysis. AND I DO!!
Ya I never have been told that but I HAVE noticed patients bringing in "no no foods" to dialysis. I guess dialysis takes a lot out? But I don't know what exactly dialysis takes out and I was always afraid of the dirty looks from staff since the one time I brought in a donut the one nurse said I should not eat that but said, "it's your body" like I was being so reckless. She is bigger than I and my dietician said that I have the best blood results of anyone in my shift on dialysis when it comes to eating habits. But still .. the looks the nurses give me .. is enough to make me not bring in the "no no foods"...
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Im not at all saying everyone doesnt know about it. I'm pretty much talking about the people I have talked to who really dont have a clue what to eat and what not to eat. For me, cocopops isnt indulging, as I can eat whatever I want as I am not on conventional dialysis (I am tommorow though!). If you want something a little bit naughty I would say the best time to eat it would be while you are on the machine, preferably within the first few hours. But still, I wouldnt go overboard. Tommorow I am going in-centre for the day and Im taking some avocado to eat while Im on the machine. I am having pre and post bloods so that will be interesting.
6oz of juice I would say is fine, as its only a small amount. We get 150ml juice cups in hospital on the renal diet, so if you are having it in moderation then its ok.
When you are on PD, you can be more free with your diet. Its harder on hemo. But as we have all said, everyone is different, so different people might be more sensitive to some foods than others. I for one had to be extremely careful while I was on conventional dialysis, as it didnt take much to put my potassium up. It was at the point where there wasnt much I could eat.
I dont see anything wrong with donuts that would make them a renal no no, unless you are trying to lose weight.
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I dont see anything wrong with donuts that would make them a renal no no, unless you are trying to lose weight.
I think because the nurse was on a diet (I am guessing) she looked at me and felt I should be too .. who knows ... like my dietician said .. I have the best lab results ... mine were just done last week (always the first wed on the month for me).
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Cake Donuts are high in phosphorus. This tread is making me hungry! :'(
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Oh I didnt realise, what makes them high in phosphate? Milk?
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Oh I didnt realise, what makes them high in phosphate? Milk?
yes, and eggs (yolks) but my results are always good and I DO take my binders even while on dialysis.
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Oh I see. I didnt think there was that much milk in a donut. I think just having one donut wouldnt break the phosphate bank. Didnt know eggs were either!