I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: zona on October 11, 2009, 04:58:27 PM
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I was on my feet yesterday a little more than usual and went to bed with them swollen. Today my feet and ankels are unrecognizable. I can't breath when I lie down and I hear gurgling sound in my chest. I am going to call neph.In the morning. This is miserable.I can't bend my feet to walk. At this point I would welco
me dialysis!
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zona, call your neph asap!!! If you have a lot of difficulty breathing go to the emergency department. Fluid on your lungs is dangerous!!! You do have the symptoms of fluid overload. When PD stopped working for hubby he had trouble lying down and when he did you could hear a gurgling sound just like when you open a can of pop. My advice to you is to call your neph NOW if you can if not get yourself to emerg!!!
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Zona, please go to the ER. Very serious situation you describe and a doctor ought to check you out.
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I was like this for about about a week before I went to my neph and I am quite lucky I am okay. They are right - this is a dangerous situation. Don't wait!
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I agree. DO NOT WAIT. DO NOT PASS GO. DO NOT COLLECT $200. GO STRAIGHT TO THE ER.
This is potentially very serious for you and it must be checked. You had the warning signs last night with your ankles swelling up. Clearly you are fluid loaded.
Please - get checked!
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PLEASE GO TO THE ER. Look up congestive heart failure.
What are the symptoms of congestive heart failure?
The symptoms of congestive heart failure vary among individuals according to the particular organ systems involved and depending on the degree to which the rest of the body has "compensated" for the heart muscle weakness.
* An early symptom of congestive heart failure is fatigue. While fatigue is a sensitive indicator of possible underlying congestive heart failure, it is obviously a nonspecific symptom that may be caused by many other conditions. The person's ability to exercise may also diminish. Patients may not even sense this decrease and they may subconsciously reduce their activities to accommodate this limitation.
* As the body becomes overloaded with fluid from congestive heart failure, swelling (edema) of the ankles and legs or abdomen may be noticed.
* In addition, fluid may accumulate in the lungs, thereby causing shortness of breath, particularly during exercise and when lying flat. In some instances, patients are awakened at night, gasping for air.
* Some may be unable to sleep unless sitting upright.
* The extra fluid in the body may cause increased urination, particularly at night.
* Accumulation of fluid in the liver and intestines may cause nausea, abdominal pain, and decreased appetite.
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Sharon had the same symptoms, ended up in the ER, was admitted to the hospital and they used a needle to pull out 2 liters of fluid from her lungs. Don't mean to scare you, but this is extremely serious......
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Hey everyone, thank you for your concern! I fell asleep last night sitting straight up in bed with pillows behind my back. I was so exhausted. This morning I woke up in a sweat,kinda like when you have a fever and it breaks. The puffiness has gone down, I can see my ankles and am breathing a little easier. Still, I will call my neph. today. This happens everytime I try to do normal activity. I think I can do more than I can and I get into trouble. Today is going to be a stay in bed day! :thx;
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Dear Zona , dont be afraid but now is the time your are going to have to start dialysis. The fact that you slept sitting up last night and can breathe easier today is only fooling you. When you are upright the fluid just moves places. Please insist on seeing someone today. I had this problem , not through ignorance but through PD not doing its job. I ended up in ER , no visible signs of fluid , no swelling of feet or legs , just breathless. The fluid was invisible but it was all around my heart and on my lungs and i had a heart attack (only a mild one) It might shift around your body but the fluid is there now and wont go away.
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Zona, what I posted above was not the complete picture of Sharon's situation, She had her first incidence of these symptoms about 6 month's ago, last Thursday I had to take her back to the hospital with related symptoms, the outcome is that to much damage from the related effects has been done and today I will bring her home, we will continue with her dialysis for the time being, but we will be bringing in Hospice care, she needs surgery to correct problems that this caused, but the Surgeons will not do it because they all agree she would not survive it. She and I have come to terms with this, we believe. I cannot help to question what we could have done to prevent this from shortening her life so much, but everyone in the medical community is just as puzzled because nothing has changed in her blood work even now, but she has very large pockets of encapsulated infection around her lungs that is reducing her breathing capacity.
So please get attention for your condition NOW.......
Tom
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Zona, please listen to what your IHD familly members are saying. Please be examined ASAP. :cuddle;
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:grouphug; Ok everyone, You have convinced me,I am waiting on a call from my neph. I don't want to take any chances.Everyone here certainally knows better than I when it is time for dialysis. Thank you,and I will keep you posted.
Edited:Fixed smiley error - paris, Moderator
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Good Luck, Zona....
My mum was VERY breathless in the few days before she began dialysis.... I REALLY thought I was going to lose her....
The sooner you're treated, the better!....
May God bless and protect you....
Darth...
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Glad to hear this Zona. I've been worrying.
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Thank you and of course post after you see the doctor. I was really worried last night. If by chance the doctor recommends that you go into the hospital please have someone post here for you so we can keep updated and not worry too much.
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Hello friends, I am happy to report that I am feeling much better today. My neph. put me back on lasix and yesterday after taking the first dose 80.mg. I peed. And continued to do so all day.The weezing is gone,but he warned me if it happens again to go straight to the e.r. My bun is 72 and creatine 3.75 gfr 15. My blood pressure was up at 180/95. I am just thankful I can take deep breaths today,but I am wondering how many uremic symptoms it takes before the Dr. says enough.
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Demand that you start now. If he won't call another nephrologist and ask them to start you.
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don't call Neph, go to emergency. This is what happened to my mom. Within a couple of hours like 2, she went from not being swollen, just feeling not so good, to not being able to breathe. GO NOW!
Let us know you are ok
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I dont agree..... I think that you should take your lasix and try to get lots of exercise..... I too get water build up and swollen ankles and sometimes fluid in my lungs..... but not bad.... When I take the lasix this allows alot of the fluid to me removed.....as long as the lasix is working and you are going to the bathroom then you will be removing water..... I dont take my lasix every day..but watch my weight and the swelling and take some when I need to..... I have done very well in controlling my water and swelling with the lasix...... Dont panic...... keep your salt down to nothing and doing more exericise really does help with the water too..... sometime if I find my self sitting too much for too long my feet ,ankles will swell more than if I am up and about.....so give a few days and I bet you will have better water control.... The down side of the water removal is I often would get leg cramps at night .... but when I do I know that my water is really low..... Thats my two cents worth....
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I too get leg cramps on lasix. At one time I was on 120mg.twice a day. So far this dosage is working. I do sit a lot so I will try to move around more. I don't feel there's any danger right now but I am not taking this lightly.
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My numbers are close to yours Zona. They have been for quite some time. I did get my BUN level in a good area. The lasix gives me leg cramps when it is working hard at getting rid of the water. I have elephant legs some days! Not a pretty sight is it? LOL Put your legs up when you can. But, do move around. I use a stationery bike to move my legs more. The less fluid I carry, the lower my BP is. And the flip side is, I can tell when I need to drink something, I get faint and know my BP is down. It is a very hard tightrope to walk. I trust my neph so we are working together on all of this. If you like your doctor, then the two of you will know when the right time to start is. Sounds like you are both on top of things. Take care--we worry. :cuddle;
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I dont agree..... I think that you should take your lasix and try to get lots of exercise..... I too get water build up and swollen ankles and sometimes fluid in my lungs..... but not bad.... When I take the lasix this allows alot of the fluid to me removed.....as long as the lasix is working and you are going to the bathroom then you will be removing water..... I dont take my lasix every day..but watch my weight and the swelling and take some when I need to..... I have done very well in controlling my water and swelling with the lasix...... Dont panic...... keep your salt down to nothing and doing more exericise really does help with the water too..... sometime if I find my self sitting too much for too long my feet ,ankles will swell more than if I am up and about.....so give a few days and I bet you will have better water control.... The down side of the water removal is I often would get leg cramps at night .... but when I do I know that my water is really low..... Thats my two cents worth....
I agree about taking 'water tablets' but i dont really agree with the exercise bit , as all you are doing is circulating the fluid round your body ! Fluid when it builds up will always find the point of gravity , which is why its always your feet and legs that swell first , by moving around you are just sending it to other parts of your body , its not actually leaving it !
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I believe exercise is something that everyone should try to do, no matter if you have CKD or if you are just a normal healthy person.... Exercise will help so many areas including your lungs which will help clear out fluid..... your circulation and most of all you feel better when you are up and moving..... I know that when I sit too long I don't feel my best.... and now with CKD I find that sitting hurts me more now than ever before..... I use to drive long haul in a truck and put in many hours sitting and driving.... sometimes 10 to 14 hours per day..... that can take a real toll on the body..... just walking and staying busy will help with water retention for me.... I see a big difference now that I am out of the truck...... So for me exercise is a key player with CKD and my water retention control.....
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I agree about taking 'water tablets' but i dont really agree with the exercise bit , as all you are doing is circulating the fluid round your body !
If you exercise you perspire. You can lose almost a kilo in water weight when exercising.
And then there are all the other benefits of exercising when you are a person with kidney failure: Stronger bones, increased strength and endurance, lowering blood pressure, and a longer life.
8)
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Paris, I know what you mean about 'elephant legs'. Mine get so bad I can't bend my feet to walk. I do trust my neph. and have the same one for 16 years when I was first diagnosed. I have been at stage 4 for almost a year now.Since Im anemic and I understand most cdk patients are,I have been to tired to do anything.I have put on a lot of weight since having to quit work and I know the extra pounds are are not helping my situation.But how do I motivate myself when I get tired just by walking through the house.I used to be very active.I've tried the iron pills but they made me so sick! I have had 2 iron infusions in the past few months but can't tell a difference in how I feel. I miss the old me,I used to run circles around everyone!
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Firstly im not saying dont exercise !! All i am saying is if you sit or lie down then fluid goes to those parts of the body eg; legs and lungs ! So of course if you move about your lungs feel clearer. You would also have to do a mighty lot of exercise to lose a kilo in sweat ! Have you never noticed that people have a problem with breathing when they lie down for longish amounts of time when they are fluid overloaded ? Yet when they get up in the morning (in most cases) they find breathing easier because they are moving around and the fluid goes to the lowest point ..the feet and legs ! It doesnt mean because they are breathing easier they have got rid of the fluid.
Zona , do you know what your hemoglobin is ? If its low, 2 infusions in the past few months isnt going to make any difference. We have one a week to bring our levels up ! (Ive had 6 just since starting hemo and i used to get it regular on pd ) You will also start to have Epogen injections (Aranesp) to help raise your blood count if its low.
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Kickstart, I m not sure what my hemoglobin is. My neph. said my iron levels are in {the toilet}.Now I am wondering why I have had only 2 infusions and no epogen shots. Hasnt even been mentioned. But you better believe Im gonna find out! :banghead;
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Hi Zona, there are two factors with anemia. If your iron reserves are low (ferritin is the lab they check for this) then the body needs more iron. If your hemoglobin is low (which is common with kidney failure--your kidneys send the hormone to produce more red blood cells) then you will get a shot of Epogen or some form of it. But, you can't "feed" those red cells if you are low on iron. Your neph would certainly tell you if your hemoglobin was low. Especially since he is checking your iron levels. Just call his office and ask the nurse or see if they can send you a copy of your last labs. I keep a copy of my labs to track everything. Sounds like you are aware and know your body. How is your appetite? Hope you are finding answers here to some of your questions. :2thumbsup;
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Just looked at my labs hemoglobin is 10. Iron levels are 40. Is this bad? Appetite,not so good. I usually eat one meal a day.
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Zona, my hemoglobin stays around 10-11. I have had epo when it was down to 7-8 and also had iron infusions. A "normal" woman is usually 12-16. I don't think you will find any kidney patient with those numbers! And they have found that epogen can cause clots in some cases, so some doctors aren't as quick to use it. But, I am sure you neph is watching all of this. Next time you see him, ask him to go over all the numbers with you. My first neph liked to be in control, so I changed doctors (same group though). Now my neph pulls up a chair and goes over every single one so we both know what is going on. Our favorite saying at IHD is "knowledge is power". And everyone of us is different, even though we have the same disease, so everyone will have different treatments. That sounded like a disclaimer :rofl;
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My husband neglected himself from diabetes to the point of kidney & heart failure. Believe that? Neglected, it's true. It's was horrible. Anyway the thing that made come him into the hosp. in an ambulance was he was in heart failure. Congestive heart failure is not when the heart stops beating, but the heart often becomes enlarged from hypotension and lacks the inability to pump blood properly. This can be assoc. with renal failure too. The fluid builds up in the periocartal (sp?) sac around the heart and the heart struggles to pump blood. When you start heart "popping" or "gurgling" noises this is very very serious. I hate to say that but I want you to be most careful. Another sign it's very serious is having to sit upright to breath properly. When caught early things like Lasix can help or others treatments your dr. may reccommend, but the thing is getting it diagnosed RIGHT AWAY. You want to see a Cardiologist.
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I went in 14 kilos up in water today. I spent last night sleeping sitting up, could not breathe lying down, Miserable. For some reason all that fluid made my moscles so weak I could barely walk.
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I agree with every one, please seek help. This is a dangerous situation.
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Bub,I am so sorry to hear about that. I know you must be miserable.You are in my thoughts and prayers today.
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Definately go to the emergency room a.s.a.p. I had the same symptoms a couple years ago and I went to the emergency room when I could no longer hardly walk and I started coughing up blood. It turned out that I was in fluid overload and my lungs were filling up with blood. I had to have blood transfusion and when I first got to the emergency room they called all of my family and told them to come becuase they thought I maight not make it. This is a very serious situation, the longer you wait the worse it will get.
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Hey everyone, thank you for your concern! I fell asleep last night sitting straight up in bed with pillows behind my back. I was so exhausted. This morning I woke up in a sweat,kinda like when you have a fever and it breaks. The puffiness has gone down, I can see my ankles and am breathing a little easier. Still, I will call my neph. today. This happens everytime I try to do normal activity. I think I can do more than I can and I get into trouble. Today is going to be a stay in bed day! :thx;
Dialysis is a hard pill to swallow, but it's a lot better than what you've been going through. I can't tell by by your posts, but it sounds like you have ESRD, but you haven't started dialysis. It would seem that the neph would get you started. My ankles got a little swollen before I started and I did lose 50 lb. almost immediately after starting dialysis, but I never noticed difficulty breathing. "noticed" I'm not the doc but it seems like maybe he ought to start you on the big D. Don't worry. It'll be much better when you do. Don't resist! Living with dialysis is much better than being dead.
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I went in 14 kilos up in water today. I spent last night sleeping sitting up, could not breathe lying down, Miserable. For some reason all that fluid made my moscles so weak I could barely walk.
Bub, 14 KILOS? Are you a beer drinker Bub? I remember a post about Koolaid. I try to not drink anything. I get my water from the kitchen sink (i live in New Mexico and the water's cool and tastes good right out of the tap) and spit it out except for a little that goes down my throat. I remember when I drank beer, I had to go every 5 to 7 minutes. When i went to the VA, to the alcohol ward, there was a doc that said, "The easiest way to quit drinking is just not drink" I remember thinking, 'Easy for you to say'. It took me a while and help from a bunch of recovering alcoholics, but I quit. 20 years ago. I'd be dead if I hadn't quit drinking beer. That may not be true in your case. But putting on 14 kilos between treatments is just silly otherwise. 14 kilos is almost 31 lb. It seems to me that you gotta be drinking a hell of a lot of koolaid. If I go over 4 kilos, I can barely walk when I leave dialysis. On friday I have to take off extra to allow for the weekend.
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Zona,
You have received a lot of good advice here already. I just wanted to encourage you also to go to the ER if it ever gets this bad again. I do cardiac ultrasounds and believe me, if you get fluid around your heart and lungs like that, it is a very serious situation. You have a chronic conditions so you will build up fluid slowly and adapt to it easier then someone with an acute problem. The disadvantage to this is by the time you start having severe symptoms you might be near death. Nothing to mess around with!!!! I know how difficult it is to go to the ER, but you have to to save your life. You were lucky this time, but if it happens again you might have 1 cup more of fluid and that might be the end.
This is to Bud,
Man, you have got to get that fluid under control ! Do you know what this is doing to your heart? :Kit n Stik;
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Extra fluid in the system is never good. It can cause un-revisable damage to the body. Go to the emergency room and get tests done. I would guess your dialysis treatment isn't quite right. Please don't play games with your life. You have to be in control of your dialysis treatment because sometimes the Dr's are so overwhelmed by patients and they don't catch everything. Not to sound like I am lecturing you but I know from experince.