1. Community
  2. Heart Health
  3. Cardiovascular Disorders

severe heart failure

Posted , 6 users are following.

sheila69838
sheila69838

my husband 69 years old and .was admitted to hospital in nov 2014 with atrial fibrillatin and diognosed with heart failure.  When he was discharged he seemed tp improve on the regime of pills they gave him

. His general well being started to deteriorate in mid Feb 2015 and was readmitted to hospital , after many scans, blood tests, ultrasounds etc, it was assessed that his heart ET was 25% in dec'14 and now 15% 27th feb'15

My husbands short term memory is nil..  I went to collect him from hospital, and although I had understood from him that all the tests were fine.   before we left I said I really did want to speak to a doctor about his condition (I never seemed to be at the hospital at the right time, and nurses cannot tell me details over the phone!}  I was knocked sideways to be told there was nothing to be done for his  serious heart failure and palliative care was the way forward,, .

To make matters worsethat there appeared to be a mass in his spleen which was probably the start up again of a previous "non-hodgkins lymphatic cancer" that  he had 6 years ago.

I was in total shock, I still do not know what the prognosis will be, and what life expectancy I can hope for him.

He sleeps most of the time, gets breathless at any exertion. and asks me about 4 times every day what is wrong with him.

Is there anyone out there in a similir position or can give me any idea of what the future holds, and it what ways I can improve things for my husband.

He has no appetite and no real interest in anything.  I feel we have been abandoned

0 likes, 14 replies

14 Replies

  • gpgp
    gpgp sheila69838

    Posted

    You have not been well served. In the UK your main port of call now is the GP who should be able to put together the pieces of information from the hospital and talk to you both about what can be done to help you through the future challenges. 

    Did they give your husband a follow up appointment? 

    • sheila69838
      sheila69838 gpgp

      Posted

      Thankyou for your reply

      no , not a follow up in cardiology although we are in the system as they were considering a pacemaker & defibrillator in early february when we attended an OPD then.  We were waiting on an MRI of the heart, which has now been done while he was an inpatient. but on his discharge letter it says no FU see GP!

      but     there is a FU with haemotology regarding the ?mass in spleen, in mid april.

      I feel very adrift, my husband really does not understand what is going on, no matter how many times I explain, he forgets. I can see him fading, is there any hope for improvement at this severe stage?

      thanks

  • gpgp
    gpgp sheila69838

    Posted

    You mentioned the ET, by which I think you may mean the EF, ejection fraction which is one measure of how the heart is pumping. Unfortunately 15%is poor and is not a good sign. The outlook I'm sorry to say is not looking good but no one can really say how long he can go on with such poor function. As I said go with him to the GP and say the stuff about palliative care. The GP should know all about your local services and how they can help you and your husband cope. Do talk to the GP about the memory problem as well.
    • sheila69838
      sheila69838 gpgp

      Posted

      yes you are right I did mean EF.

      `i have made an appointment to see GP on Monday on my own,  he knows about the memory function, and is also aware I always accompany Tim on these doc visits.

      You say the outlook is not looking good, the EF has gone from 25% in Dec to 15 % last week, that seems like a very quick decline or perhaps this is normal?

      I know it is impossible to guess but what are the average life expectancy figures with an EF of 15%, months/years I have no ides.

    • gpgp
      gpgp sheila69838

      Posted

      If you search online for -mortality v ejection fraction -it takes you to an American research article on this subject. If I understand the stats correctly they followed up their patients for 3 years, half of those with an ejection fraction of under 15% at the beginning were still living. But remember you cannot predict for an individual person. It may depend on anything else that is going wrong, especially the possible recurrence of the lymphoma and any treatment for that as well. It is difficult but you need to try and be positive and be guided by your GP who hopefully knows much more about Tim. Is he breathless or swollen(legs or tummy)? You  said he has no appetite and no interest in anything, might he be depressed?
    • sheila69838
      sheila69838 gpgp

      Posted

      Thanks for the info, I guess the answer is "how long is a piece of string"

      Yes he does get breathless on exertion and also when lying supine.

      He has suffered from anxiety depression for some time, and takes 100mg sertraline. 

      I think his lack of interest in food is for several reasons.. his taste has changed, he finds many flavours that he loved in the past are too strong, ie:sweet,spicy and salty (even when they do not seem that way to me.) He also sometimes experiences nausea when he eats, and bloating

      He has a very hard swollen tummy and his left arm is very puffed out

      (his previous lymphomas were on the left side of his neck and in his left armpit, this was two seperate events 9 years apart, both lymph nodes were removed, hence the poor drainage on his left arm. on the second cancer he was at stage 4 and also had secondaries in spleen and abdomen. they believe it was the last chemo that has savaged his heart)  but on the positive side if he had no chemo he would have passed 8 years ago!

      it all seems so unfair

  • grace50435
    grace50435 sheila69838

    Posted

    Ahhh, so sorry to hear you're going through this. You must feel pretty isolated by it all!

    The best thing you can do (as you've done!) is get help and support from your GP. They can give you the facts and also point you toward all the great services and support out there. You should be able to get support at home for caring for your husband and you may also qualify for carers' allowance (worth looking into). Your doctor can tell you what's going on and give you an idea of what to expect. Make sure you get all the support you need! Do you have family or friends who can help out too?

    Whatever happens, you need lots of emotional support to help you and your husband through all this. You'll get good advice and support here too. I'm one of those praying types, so I'll do that for you and your husband. smile

    • sheila69838
      sheila69838 grace50435

      Posted

      Yes I am lucky to have two sons, but they live in London and I in devon!!

      I wish I was  praying type too, but it does not work for me... too scientifically minded!

      thanks for your kind wishes and I do hope Doc will be able to help!

    • grace50435
      grace50435 sheila69838

      Posted

      Yep...seeing your doctor will help to put it all into perspective. When you're without the full facts, it can be easy to jump to the worst outcome in your head. Let us know how you get on. smile
    • Valkyrie
      Valkyrie grace50435

      Posted

      I agree with the advice above about consulting your GP. If after seeing your GP you are still not satisfied, be aware that the NHS advises that every NHS hospital or doctor has a formal complaints procedure. As ask the hospital for their procedure as you wish to make a formal complaint. Often this will result in someone finding time to speak to you and explain what is happening. If you are still not satisfied, continue with your formal complaint which will then be dealt with by the NHS.
    • sheila69838
      sheila69838 grace50435

      Posted

      I can only wish I have jumped to the wrong conclusions, but the facts show all is far from well!   I try to be positive ..
  • usaron
    usaron sheila69838

    Posted

    I am sorry that you feel abandoned. I know how desperate that can make you feel....I have been in that exact position within my life....I wish I could help you to understand his illness but I can not because I have no direct experience with that but I just wanted to tell you stay strong, keep FAITHFUL, and hope is around the corner. BLESS you and BLESS YOUR HUSBAND!!!!!!!
    • sheila69838
      sheila69838 usaron

      Posted

      thanks for your kind wishes,  it is good to know that there are so many kind and loving people out there.
  • grace50435
    grace50435 sheila69838

    Posted

    When is your GPs appointment? I know having a good GP can make all the difference - you need a GP who is interested in you both holistically, not just physically...I.e, one who will try to get you help and support on all levels, to help you get through this. Both my parents have had heart issues (which is why I'm here) and they've had brilliant support. My dad had one occasion where he was assigned to a cardiologist who he just couldn't get on with. The chap seemed to be a scientist first, a doctor second and at one point, because he couldn't find an obvious cause for my father's angina, suggested it might be in his head! Anyway, as we have discovered, if you're not getting the support you need, then tackle it politely with the hospital and you should hopefully get a sympathetic response.

    My dad did that and was assigned to a new doctor, who immediately spotted that he was having narrowing of smaller arteries (too small for stenting), put him on a new drug and hey presto, had an almost immediate improvement.

    The key thing to know is, there's lots of help to be had, you just have to keep nudging to get it.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.