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how bad can chf get?
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how bad can chf get?

Hello. I have a few questions if you don't mind. my husband has CHF (is a dialysis patient also). The last 6 months or so he spends most of it on the sofa becuase he is just so tired all the time. Simple taks cause some heavy breathing and he gets worn down quickly. We do have some "good" days, don't get me wrong. The last couple weeks he's been feeling some mild pressure in his chest and a very low grade fever. I also understand he has some type of valve problem. (I KNOW he should go the DR. but that is another story) Anyway,... what is the natrual progression of CHF and how bad can it get. he is 59. uses lasix for fluid. Sometimes still fills in the feet and legs enough to get some degree of pitting but dialysis takes that fluid off for a day. Uggh... I'm sooo tired myself. The mental part of the worrying has been so draining. Need some advice and understanding. Thank you!
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Does your husband do hemodialysis in a clinic? The nurses there should do a head's up to the dr . They see him 3 times a week and if temp is up, dr should be told. Dialysis alone is enough to make some people very tired. How long has he been a dialysis patient? Renal problems are often a consequence of CHF. When was your husband diagnosed with CHF? Do you know his EF? He should be seen by a cardiologist who treats CHF patients. I am sorry, lot of questions. I am  CHF patient who has experience working with both hemodialysis and peritoneal dialysis patients and they see several doctors.
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Read your post again. Please do not ignor slight pressure in chest...heart attack symptom. If he doesn't want to go to the emergency room, get a dr visit first thing tomorrow. If he is still having chest pressure when you readcthis post, call 911. Don't take chances. annette
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I just wrote thins really long thing and I acidently erased it or something lol. Geez... Anyway. In center 2x a week. (want him to do 3) recent stress test where they gave him medication instead of the physcial test. Hasn't called to make appt. for review of results with Dr. (3 months ago) I don't know his EF BUT, I do know he is always winded after moderate exeration, sometimes just sitting there on the sofa. I beleieve it is getting worse in my opinon. It's horrible to watch and more horrible he does not take care of himself. It's like he doesn't care, or is denial, or fear of something worse.There has got to be something that can help this I hope. On dialysis near 4 years. DX with CHF and stage 4 renal disease. 1 year later on dialysis after being put in ER for heart failure. When his chest was bubbling, he intially saw the dr.. I know crazy!!! Our family has many issues trying to get him to help himself. Everyone says 'make him go", but you just can't. It's hard to explain unless you were in my shoes. I am trying to learn all I can so I can at least help with my knowledge. I don know to sit up when having a hard time breathing and even lean over a pillow. Sometimes he comes out of that type situation. If you actually go into heart failure, can it subside onit's own after while or what it maybe not heart failure as I know full of fluid around the heart. Hhmm... so may questions,. Thanks you very much. PS, you don't need to sugar coat anything you ever say to me.I know the potential of seriousesness. It just seems so "normal" anymore. *sigh*
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I understand the difficulty in getting him to the dr. Been there with members of my family. With renal failure, people find it hard to stick to the diet and take the meds involved. They usually go 3times a week for 2-4 hours. He may be filling up with fluid for any of those reasons. CHF has another set of rules to follow too. CHF is managed but won't go away.  I am sure your husband is depressed and tired. His illnesses take a lot of his time and energy. He has little control of his life right now. And, of course, this all weighs heavily on you. Since he really has to have dialysis, it is important he has a doctor he feels he can really talk to. Some times you have to seek out the right match of doctor and patient. A nephrologist can handle the CHF too. Your husband needs to find the right one. Is there a nurse or tech at clinic you are close to? They know who gets the best results and who really cares for their patients. Good luck. annette
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He's been disaappointed with his Dr. and has asked for a new one from the group. He says the Dr. only comes to the unit about 1x a month, but a nurse practioneer is always there. With dialysis removing fluids, would that help with the CHF fluid back up. W/ CHF the fluid is in the sac around the heart I understand, but how much water goes into the lungs from it? Thanks again for your help.
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I am going to suggest you go to the Mayo Clinic web page or the Cleveland Clinic web page. Both sites have disease and medication data that explain things well. CHF is not always about fluid. I have never had a fluid problem. My heart is stretched and doesn't pump blood well. CHF means a heart that is damaged to some degree. Shortness of breath, tired.....you really need to read about it. This site is associated with Cleveland Clinic; start here.  annette
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I am stage 5 renal and stage 4 heart failure.  I've had CHF for about 4 1/2 years, and from my own experience, I can tell you that it is possible to drown in your own body fluids if you do nothing.  I've been in total whiteout, twice, which means my lungs were completely filled with fluid, and it was almost impossible to get any air.  It's a very scary situation to be in.

I understand that CHF, itself, isn't usually what kills a person, but the symptoms it causes can.

Five years ago I was healthy, then I caught a super virus and now my EF is 20%, I have a brand new ICD unit(just got it on Tuesday of this week), and my GFR is 8%.  My heart is enlarged and weak, and my kidney's barely function, but with proper medical care, I'm doing fine.

Is your husband overweight, or does he smoke or drink, and he's not wanting to give anything up?  I totally understand if this is the case, but he needs to know that the alternative is sudden death, and he needs to do something, now.  

Your husband needs to know that it doesn't have to be the end of the road for him, but he does NEED to see a cardiologist, along with his kidney team.  If he does, his quality of life will be better than he ever thought possible.

I hope the best for both of you.
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487070_tn?1313669552
as of midnight last night my husband was taken into ER and admitted. VERY weak with those chest pains all day. He said into the evening they were starting to feel like stabbing pains. They said there is a little bit of fluid on the heart, but he has very high potassium level due to his kidney failure. It is so hard to tell what symptom is from what condition. First time having this issue. For those who are not familair, potassium is like the "battery charge" to the heart. To high of a level can cause sudden cardiac arrest. It also effects the nerves so it can be very dangerous. They started him on some meds to help bind and excrete this build up. Put in the IV with a gozilla sized syringe lol. I got the impression he'll be getting more of it becuase the nurse said they gave him one 'for now". Of course they will do dialysis this morning. I would also have to guess that Lasix(?) in a large dose would be given to help rid the water around the heart even if it's a small amount. Hmm.. he is not over weight but of course does hold some fluid retention. I hope this is a "wake up" call to him. it sure is to me! lol I am going to check out the mayo website. Thanks for that info. I'm very tired right now but I know I won't get back to sleep. Getting him back to his cardiologist is going to be another priority around here! Thanks again and everyone have a good day.
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His cardiologist should be consulted to see him in the hospital while he is there. They will be ruling out a heart attack from the description of his pain. Good luck and God Bless.  annette
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The high potassium is probably connected to his kidney problems, but I doubt dialysis will take care of the problem.  I have dialysis 6 days a week and I still have to give up foods high in potassium, such as potatoes, bananas, and several other types of fruits and vegetables.  Potassium is found in many foods, and reading labels is the only way to find it, except for the raw fruits and vegetables.  For a chart of high potassium foods, go into a search engine and type "list of high potassium foods"....it should bring up several pages of information.  

The  Lasix will help towards ridding the body of potassium, but there is another medication, given in the hospital, that is supposed to work even better.  However, it's a "stiff" laxative, and is only given in severe cases.

Potassium is a good thing in the right amounts, but if it's too high, or too low, it can cause heart problems, as well as terrible bouts of vomiting, along with extreme weakness.

I'm glad your husband is in the hospital and getting the help he needs.  They will most likely do a blood test to rule out a heart attack, but there many other tests they will be wanting to run on him as well.  His hospital stay will probably be at least 3 days.

I hope the best for you both, and please keep us posted.
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487070_tn?1313669552
he was taken to emergency heart surgery yesterday afternoon. The still couldn't get his BP up and couldn't breathe. Diagnosed with pericartidal effesuin with tamponde. The surgeron drain off 2 liters from around his heart. Yes, I said 2 liters. The pressure made his lungs collapse. The Dr. said that is almost double the amount he's ever taken off. His BP went from 45/? to 195 in like, 1 second when they put the drain tube in. Shortly after it was fianlly stabiliziing. he is on a ventaltor for overnight/day  to give him a break. Heavily sedated. he was just agony from not being able to breath. All this could've have been prevented by seeking attn very early on , and not refuding the 3rd day of dialysis. I have such concerns now as to how reccurrent this could be. I would have to guess he's damaged the heart even more. The  suregeon called it "blood" around the heart but I guess it's more like some blood with lots of fluid. A little confusing but I thnk I get it. He also said had not come to ER to start getting treatment when he did, he absloutely would not make it through last night. I soooooo understand why. I was horrible to watch someone like that. I woke up this morning normally for a brief second, then it hit me. Hy husband is on a ventalator right now. If anything comes of this from anyone reading it, this is a perfect example of reasons to get medical attn as the first sign of any kind of chest pain. It's so much better to be safe than sorry. I would not want anything like this happening to anyone else.
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Reoccurrence of what your husband is experiencing can happen as many times as he blows off treatments.

I know how hard it is to lose the freedom to do what you want, because of medical problems, but for me, the alternative isn't acceptable.  I have too much to live for, to just let nature take it's course.

I don't enjoy having to follow a strict diet, or sit on a dialysis machine 6 days a week, or to have a big lump on my chest where a CRT-D has been implanted to help keep my heart going.  The same device will shock my socks off if my heart tries to quit, but, again, the alternative is unacceptable.  What is the alternative?  Death.


If your husband smokes, he needs to quit, and the same goes for drinking alcohol.  His diet needs to be low salt, low fat, and he needs to learn what he can and cannot have on a renal diet.  For instance, a renal patient is better off with white bread, than wheat or whole grain bread.  The renal diet also is low in pottassium and phosporous.  In fact everything they ever tell you about a healthy diet, goes out the window when you're on a renal diet, but it can be managed IF he will just do it.

Congestive Heart Failure, in itself, doesn't necessarily cause death, but the symptoms can, and drowning in your own body fluid would a terrible way to go.  I've been to that point 4 times, and it's terrifying.  So please insist that he keeps his appointments, and follows the regimine he'll be given.  If you really want to help him, the Cardiac/Renal diet won't hurt you, and it might help him, especially if the entire house is setup for doing what he is supposed to do.  It's hard for me when I'm around people who are eating and drinking and having a good time, and I can't be part of it.  So the key might be to help him by doing it yourself.

I hope the best for the two of you.
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Working, just read your latest post. Hope your husband is breathing easier and on his own. As gmachris has stated, your husband has to make a decision. Once you start dialysis, it is necessary to stick to the schedule. Missing a day is not an option. Some people just can't do it and that will
lead to death. Dialysis is his lifeline. But, he is the only one that can make the decision to follow the plan of care. gmachris knows how hard it is and he has chosen life. It is a lot of work and  bravery that goes into that decision. I pray your husband decides he wants to live enough to fight. And, I agree, that if everyone could follow a similar diet at home, that may help him. There are cook books out there for every medical diet. Best of luck to both of you.  annette
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I'm a couple days behind on this and was reading your posts...so glad to see that he is in the hospital getting treated!!  My husband also has CHF (when they last measured his EF in the hospital it was 10% - that's about as bad as it can get).  No chest pain, but could hardly breathe just like you described with your husband.

I have no experience with the dialysis aspect, but it's true that if he does not control his diet this WILL keep happening.  The Mayo Clinic and Cleveland Clinic are GREAT sources of information.  And the best book I've read on the subject is Success with Heart Failure (really a fantastic book)

Good luck!
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Tahnk you everyone for your responses. The support alone means alone. I just found out that during the surgery they put a "window" in to stop this fluid from doing this again. I'm not sure what the actual surgery was called. I stil though, am going to be in fear it will creeoccur. I guess that's heart disease. Urgg... We're making baby steps each day, still in ICU.
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For now, ICU is a good place to be.  It means he is being taken care of and getting lots of attention....and hopefully they are helping him to know what he needs to do to stay around for a very long time.

I'm wonder what a "window" is.  I know CHF doesn't just cause fluid around the heart, it fills every part of the body, especially untreated.  Again, I can't stress enough that his diet, taking his meds, and stopping any detrimental habits are key to his success.  It doesn't have to happen overnight, but every small change he makes will help him to feel better and spend less time down with the symptoms of CHF.

I hope the best for both of you.
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Appparently the "window" is a pericardial window. I'm envisioning a beautiful Bay style window that I'm going to have to get some attratcive curtains for now lol. And oh, it'll look so prettty when it's all decorated with lights at Christmas time lol. All kidding aside, I believe it has to with putting some kind of hole, or a flap in the heart which is to help stop a reoccurence of this. Something where the blood can flow back into the heart chamber instead of coming out. I'm a little confused onit. Never had heard of it. Supposedly the pressure from the sac was so great, the heart had no room to pump. Blood not getting in, or exiting properly. The pressure was so great it caused a atrauma to the heart causing the blood to burst out of it. pretty scray stuff.. I'm going to learn all I can about CHF and the renal diet. And that gonna be a lot lol. Have a great day!
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Hello, I'm hoping things are looking better, by now.

I'm wondering why your husband doesn't have a dietician.  If he is on dialysis, he should also have a dietician.

Does he do "Center", or home dialysis?  It doesn't matter, really.  I was "in Center", and my husband and I trained and are now "in home" dialysis.  I still have blood work, and I get a report from the dietician where were we trained, once a month.  She uses the bloodwork to let me know what I need to work on, and how I'm doing with everything else.  For the last two months my numbers have been great, and she only tells me to have my kidney specialist give me a non-calcium based phosphate binder, and then keep doing what I'm doing.

Anyway, my point is, your husband should have a team who work with him to find his healthiest regimine, and it all goes along with the dialysis, so he might as well benefit from it.  If he isn't receiving all of the care he needs, then the two of you should be asking some questions, and don't give up until you get a answer that you can work with.

The dialysis, diet, and medication, can all go a long way in helping with his CHF, so I would be chewing on somebody until they give the care that your husband needs.

There is also a device called a BiVi-ICD, that is used for people who have an EF of 35% or less, so it's important to know his EF.  He might benefit fome the implant of this device.

I hope the best for both of you.
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