PLEASE HELP! I am scared, My breathing is getting worse?

Question

I have Dilated Cardiomyopathy. My ejection fraction was 45%, but now it is just above 30%. These past few weeks my breathing has got worse, and I have had an increase in chest pains. My husband says go to the doctor but all she says is it is part of what I have. I am already on two types of medication for my heart Ramipril, and Carvedilol. I have been told that I will die from this, and it could be at anythime.

But when I woke up today, I had been asleep for nearly 18 hrs due to tiredness, and I am unable to get out of bed because when I move around I really struggle to breathe.

I live in the UK, and I was wondering if there is any other form of treatment I could try instead of/or as well as Ramipril and Carvedilol.

If anyone can help I would eternally greatful.

Please only serious answers. Thank you.

Answer 1

From what you wrote, I have the sense that this has been a gradual increase in respiratory effort with activity. Nobody likes to go to the ER unless they have to. To help you decide whether this is something to go to the ER or whether this is something that can be addressed more routinely, answer the following:

1. Have you gained 5 or more lbs over the last week?
2. Are you more short of breath with laying flat - has this worsened over the last week?
3. Are your swollen - usually at the ankles?
4. Has there been a sudden increase in your shortness of breath over the last week?

If you answered yes to at least two of the above questions, go to the ER, you are in congestive failure and need to be diuresed. (get the extra fluid out of your body)

If you answered yes to one of the questions - if you feel like you are in respiratory distress, proceed.

If you answered yes to none of the above questions, then you are probably fine to wait and be seen more routinely. Of course, if things change while waiting - proceed.

From what you've written, I do have some suggestions to consider regarding your therapy - which was your original question.

1. Add Spironolcatone. (improves remodeling)
2. Add Lasix (reduces congestive symptoms - primarily a comfort step)
3. Add an ARB (example Losartan) in addition to your ACE inhibitor (Rampiril) medication. (improves remodeling)
4. Increase the dose of the Carvediol up to 25mg two times per day. (improves remodeling)
5. Add Digoxin. (improves contractility)
6. Consider cardiac resynchronization therapy via a biventricular pacemaker which can be useful with certain patients. You may also qualify for consideration of an ICD (defibrillator) per the MADIT 2 criteria.
7. Evaluate and ideally manage any other processes that might be effecting your cardiac function - sleep apnea, valve function (especially mitral valve), diabetes, hypertension are all examples that can negatively effect your condition.

Discuss these measures with your physician. They all have medical literature behind them endorsing their use. I of course would not do everything at once, but you have some options about where to go. If your physician discounts additional changes then I might request a referral to speak with a specialist.

I hope this is helpful. Good luck.

Answer 2

I agree with c_shumacker's answer.

In addition, I would like to underscore the need to find a heart failure specialist as quickly as possible. The advice your current doctor has given you falls way short of what the medical profession now knows. A general cardiologist will not be sufficiently familiar with your problems. There are typically cardiomyopathy experts on staff at all transplant centers. So that's the first place I would look, but I don't know how the UK system works along these lines. I would strongly encourage you to find out. One way would be to join the dilatedcardiomyopathy_uk Yahoo group. I'm sure there are people there who could help you understand the best way to work within the system in your own country.

I also strongly recommend reading through all the information on chfpatients.com. The prognosis for CHFers is *much* better than it used to be, but it sounds like you are going down hill even with carvedilol. If you are not already, you need to get to the target dose of Coreg (carvedilol) and the ACE inhibitor ASAP (taking care... they should be ramped up every week or two, not all at once). It sounds like you could really use a diuretic, as well, as others have noted.

Please also join at least one of the on-line groups I note in my source list. They will help you make sense of this all in a supportive and knowledgeable environment.

Answer 3

My wife is a nurse of over 25 years and worked in the cardio section for many years. All you can do is have a heart transplant if you qualify and can hold on. Good luck! Be as happy as you can for as long as you can and never give up hope. Positive energy goes a long way.

Answer 4

I also live in UK and I am a nurse. You can definitely benefit from having a heart transplant but for now you are accumulating loads of fluid because your heart is at its optimum. You can go back to your GP and ask him to prescribe you a water pill or furosemide. This can help remove the excess fluid lingering in between your tissues. Aside from this, ask your GP to refer you to a cardiologist if you are not seeing one at this time.

Answer 5

if your ef is this low and falling frequently you need to be evaluated for a heart transplant and put on the list..if you are already listed then your status needs to be increased...you might need a different ACE inhibitator and maybe even a diuretic....best thing to do right now would be a trip to the er and get evaluated

Answer 6

LIVE TO DAY AS THERE WILL BE A TOMORROW.
Dear Ma'am , as there is a fall in EF from 50% to 35%, you might be have developed CCF and as a result there is accumulation of fluid in your lungs.
Call an ambulance and report to an ER without delay. Now please turn off your PC.
Thank you.

Answer 7

I would get a second opinion. Or a 3rd, 4th or 5th! Get as many as you need until you find a competent dr who if nothing else, can ease your fears. Best of luck to you, dear! I will keep you in my prayers.

Answer 8

you probably have Asama. symptoms: chest pain, coughing non stop, hard time breathing, tiredness. going to the doctor can help. bring Asama up. i went to the doctor and i was coughing non stop. my doctor gave me an inhaler. didn't help me but it could help you. if it doesn't they will probably put you on antibiotics. if that doesn't help they will give you chest x-rays. not sure whats next. one of these things has got to work.

Answer 9

get other opinions most docs are morons

Answer 10

You need to get to an ER now and please tell us GET THERE!!!