help please currently terrified

[Clematis105]

hi im new here,

my partner who is 27 years old has been diagnosed with a heart condition, so far we have had alot of different diagnosis non of them have stuck except non compaction which was proved wrong when he passed an exercise test.

non of his symptoms match with anything and his specialist seems to have given up after forcing him to have a defibrillator fitted and his nurse doesnt have a clue.

we keep asking questions and get fobbed off.

has anyone had an experience like this and how did you get round it.

the specialist seems to be ignoring the other doctors even when they all have the same opinion but differs from his. we would quite like my partner to live more than 6 months but under current care its not looking likely.

sorry for the rambling post

[CA1949]

Are you able to try another specialist at all? I would also take notes at the meetings with GPs and specialists and ask loads of questions if they are unclear. If you get fobbed off complain about it. This is not what you want or need in this situation!

[Clematis105 in reply to CA1949]

we record everything on a Dictaphone and it has proven useful so far as what they say to us and what gets written down is completely different, as we arnt married they dont listen to me at all its so frustrating as my partner is really struggling to get across what he needs and wants.

[normal2]

wow,i am so sorry to hear you are going through this bullsh+t at a time like this.

sometimes you just have to put your foot down for your partners well being mate.

be well,

[Clematis105 in reply to normal2]

i have been. its hard to not yell at medical professions we got s really scary letter yesterday that caused him so much stress. it told us he needed to go to the heart transplant hospital to get ready for a transplant completely out of the blue. phoned them up and it isnt at all what the appointment is for its more of a second opinion so hoping to start moving forward at last

[Fortepiano]

Your partner can designate you as his next-of-kin which might make it easier for you. There is a card you can download from the Royal Free hospital website (google 'partner as next of kin NHS').

The situation you are in is terribly stressful, and it can be hard to remember the doctors are trying to do their best for your partner and that sometimes there are no clear answers or solutions available. I know there were times I felt frustrated and upset after my husband's appointment - but I have often realised later that their judgment was correct. After all, you and the doctors are actually on the same side!

All the best with the referral.

[Hidden]

Hi I have a defibrillator fitted 11 monthes ago what medication is he on only entresto really made a big difference to me it’s the only drug that ever has or nown as sacubitril valsartan its a new ish drug but I felt the difference in a day or two and my ejection fraction is 10 % hope all goes well and works out good luck

[Clematis105 in reply to Hidden]

hi, ive never heard of that one. he is on ramipril, bisoprolol, sprironolactone and lixiana. this is his second lot of drugs the first ones he was put on made his heart deteriorate and his first specialist just ignored it so did the heart nurse, it was on his 3rd admission to a&e they realised they had messed up and transferred him to a specialist hospital where things havnt gone much better, it appears he has no normal symptoms for anything and finding the cause is impossible due to the first hospitals mess ups so everyone is guessing.