Refractory CHF?

[fanofhawks]

I've been a poster on and off for a while.  I write today with a question about congestive heart failure with end stage cirrhosis.  My sister has now been diagnosed with CHF.  She was admitted to the hospital with peripheral edema and ascites.  She was having a hard time breathing, and hadn't walked in 2 months due to the severe edema in her legs.  After some extensive testing, she admitted she has CHF now.  At her stage of cirrhosis, could this considered refractory chf?  Diuretics no longer handle her fluid retention, and she has been to the hospital 3 or 4 times in the past 6 months to have the fluids drained.  (But she said she did not have paracentesis done this time.)  I'm not sure how they are draining the fluids if they are not doing it with paracentesis.    Anyway, is this new diagnosis considered a co-morbidity?  Would this disqualify her from a liver transplant?  

[fntn]

You maybe already aware that end-stage cirrhosis can cause heart problems as well. A search on: Heart failure in patients with liver cirrhosis ... will provide additional data. Sorry to hear that there is some much difficults in her case. Hoping things turn around.

[fanofhawks]

I do thank you for ALL your important advice.  Unfortunetly, I am 1500 miles away, and she has never been forth-coming with her health.  We learned 5 yrs. ago about her end stage liver disease, and for some reason now, she is telling us about the CHF. (Not sure why).   But after this, and she either goes to a short-term rehab for physical therapy, or she goes home, we will be in the dark again.  I know she needs to see these important doctors, but she won't listen to me.  I have urged her repeatedly to see a hepatologist, and not a gastro-enterologist, but she never changed doctors.  I don't even know if she has been evaluated for a new liver.  I am traumatized when these things happen, but she absolutely unaware of how it is for us (my mother and I) on this end.  I know she is getting progressively worse in her end stage cirrhosis and renal failure.  Now she has CHF.  I fore-see more emergency trips to the hospital if she doesn't get with the right doctors.  TY!

[fanofhawks]

Also, my sister was a life-long smoker.  I feel this is making a big difference in her recovery this time.  When an illness involves the lungs and the heart, smoking will drag one down more than one who doesn't smoke.  Just a thought for others.  I am not preaching.  

[fntn]

There are two principle problem that she could be likely dealing with.  Cardiopulmonary hypertension and/or Portal hypertension. Maybe both in the worse case. She will need the best doctors to access this. And you will find these doctors at the major transplant hospitals. Be sure to "push" to get in and see these doctors, they are limited of course so the access to them can be difficult. But don't give up, this is what she will need. Please let us know how things progress, we can help but cannot diagnose.

[fntn]

And I forgot to mention, make sure her protein intake is adequate. The best way to slow the edema is to keep her blood albumin levels normal. If this level drops, edema can be a serious issue.

[fanofhawks]

Thank you for your answer in regards to the paracentisis.  This is exactly my question now.  My sister was supposed to be discharged today, but they couldn't let her go due to continued heavy edema in her legs and feet.  It is causing an arrhythmia in her heart and they have to get this under control first.  So now that she has CHF this is making her even weaker.  She can't even talk on the phone because she has no air.  How can they discharge someone in this condition?  I have urged her to either go to a rehab facility for physical therapy or to have someone come to her apartment.  She hasn't walked in over 2 months due to the severe edema.  She has to be on a strict diet now, but she could never cook for herself.  I am shaking my head.  Anyway - I guess my question is this:  How are they going to get the edema out of her legs to ease the heart arrhythmia?  And how are they going to send her home so weak?  

[fntn]

Should have mentioned that my friends and family feared the worse. But it has been 3 years now, and all is stable. So don't lose hope.

Parcentesis can be tricky when the fluid becomes loculated within various pockets. Very dangerous to get to sometimes. They used a variety of entries on me to pull the water out. If the water is near the lungs and heart, the risks increase.

There are ways of tapping the abdominal fluid by inserting a drain. Not sure if this option is valid here?

[fntn]

Should have mentioned that my friends and family feared the worse. But it has been 3 years now, and all is stable. So don't lose hope.

[fntn]

I've been right where she is at: breathing issues, extreme ascites and legs so swollen that a simple bed sheet caused pain. I was able to recover fully, at least to be functional. So don't give up hope.

You control the medical team, not the other way around. If you don't like a doctor or even team, get rid of them, and put someone else in there with new ideas. I went thru many doctors and surgeons, until "I" was happy.

Hopefully there are options for her, it just needs the right combination of doctors.