Plse can Heart failure make you so disabled and debilitated?

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daizy2
New Member


Date Joined Apr 2007
Total Posts : 11
   Posted 5/1/2007 5:50 AM (GMT -7)   
yeah  i everyone:
Hoping to get some responses this time.  I am very worried.  Diagnosed with cardiomyopathy, then heart failure.
Is it normal to feel so weak and so debilitated that you can't even wash dishes, iron, or even walk without feeling breathless, not enough oxygen going to the heart?  My BNP was 330 and my ejection fraction was 51% two weekds ago.  Can you feel so severely debilitated even if the results are not that serious?
I feel very breathless sometimes quite often even at rest. 
 
I can only walk very very slowly and only a few steps.  It is difficult for me to even wash and take shower at this time. I cannot understand it.
 
Even if slightly tired,  I feel breathless, but not panting of course.  It is difficult to explain, but for instance, I can't carry anything eg a heavy book, handbag or wear shoes with heels, because it means using some muscles which then starves the heart muslce of oxygen.  I live on my own and am worried that if I overdo it, I would just end up unconcsious. 
Is this all part of having heart failure?  having such severe symptoms?
Many thanks for help
daizy
 

mama2jmt
Regular Member


Date Joined Mar 2007
Total Posts : 301
   Posted 5/1/2007 2:13 PM (GMT -7)   
Hi daizy!I am sorry to hear that you are feeling like this!I also have heart failure & have gone through these very same symptoms.But the only time that I have ever experienced those symptoms was at the time of my dx(3 years ago) & I had fluid in my lungs & around my heart.Have you told your doc that you are feeling like this?I really think that you need this checked out ASAP!!You may even consider going to the ER!The very first question my cardio doc asks is "any shortness of breath?"every single time I see him(come to think of it,all my docs ask that first thing because of the CHF) .I also noticed from your other post that you haven't even started any meds yet,I was started on meds 2 days after I was dx'd.Just thought I'd let you know in case it may be helpful on deciding to get a second opinion.Please keep us posted & good luck!!-Jennifer

daizy2
New Member


Date Joined Apr 2007
Total Posts : 11
   Posted 5/1/2007 11:35 PM (GMT -7)   
Hi Jennifer:  thanks for your prompt reply and advice.
I had a chest x-ray done last week.  I can't go again this week.
 
Would not have other symptoms if there was fluid around the heart and lungs, such as rales, and different types of breathing cracklings noises when breathing deeply as you do when you have a cold?
 
Yes, everyone is asking why was I not put on any meds?
 
I live in the UK where we have socialised medicine.  This is in shambles and you have to literally fight and take the authorities to court to get treated etc...  eg.  I was diagnosed with lyme borreliosis by two docs.  They both wrote to my GP asking her to put me on antibiotics.  I am still waiting but too weak and ill to fight.
 
I told my GP I was very ill and in heart failure.  All she did was to send me for routine blood tests.  I felt I was going to die.  I contacted a private cardiologist nurse and asked her to do the BNP test.  The private cardio was away on hols.  The nurse phoned me the following morning and told me it was high at 335 and that she phone the cardio who said I needed an echo done asap.
 
Echo also confirmed left ventricular dysfunction.  I had to pay for all these tests which I can't afford.  The irony is that in 2002 I was diagnosed with this by an NHS cardiologist.  He said not to worry I would be fine.  Then 2004, my tests came back normal despite having all the classic symptoms of heart failure.  I was told I was fine.  No meds.
 
Anyway, the NHS here in the UK stinks.  Unless you have friends and relatives to fight for you, you will die and not even realise it was because of withholding tests, investigations and treatment!
 
Now, my private cardio did not put me on any meds because he says that we need to find the cause of the heart failure because the drug regimen would have to be appropriate for the heart failure.  He also wants me to have an angiogram done to determine the cause of the heart failure.  I told him I could not afford it right now, but have to save up for at least five to 8 months for this.  He thinks it could have been the untreated infection of lyme borreliosis causing the cardiomyopathy and heart failure, in which case, he says that the treatment would be different. 
 
I can't afford to go for a second opinion.
 
Meanwhile, I have written to the NHS cardiologist requesting that he sends me to heart failure specialist because I am deteriorating.  The letter was delivered to his office on Monday.  I spoke to his secretary yesterday (Tuesday) and she said he requested my notes.  This is a good sign because he will now have to give an appointment to see a heart failure specialist.  The only snag is that I may have to wait another six months or so.
 
But then there are other health issues which are also very disabling.
 
So, yes, I do find strange that I was not put on Ace inhibitors straight away, or that at least the cardiologist did not request my GP to give me these meds!
 
I will fax my private cardiologist to write to my GP and ask her to me on meds?  My GP is on the national health.  To get any meds or any tests done is a fight with her......
 
Hope you are OK otherwise and taking good care,
Daizy
 
 
 
 
 
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