Newbie caring for my husband

Hi, my husband got diagnosed with heart failure in 2009 with very slightly reduced blood supply to both legs. He also had an icd (internal defibrillator) fitted and on heart meds including warfarin. He had done well over 8 yrs being able to walk 4-5 miles in one hit having to stop every now and then for his legs/feet to get the circulation back and claudication to ease. Never had any issues
However in aug 2017 the battery in the icd was getting to the end of its shelf life and needed to have it change, which went smoothly home the same day. To do an operation they take you off warfarin and give you injections until a few days after where you would then start the warfarin again until the inr is back in range. (We know this now but not back then!)
Consequently not having this injection caused his legs to block to the point they are now inoperable (vascular and arterial disease). This year feb 2019 his heart failure got worse to the point his heart is only functioning at 10% and he was at end stage heart failure and stage 3 chronic kidney disease.
In June he was refused a heart transplant because the pressures were too high so he had a device fitted called an lvad (left ventricular assist device) also an rvad external pump was temporarily fitted whilst he was in critical care to get the right hand side of his heart better which worked as well as the doctors hoped, after 13 days sedation and 30kg weight loss from water retention he began to come round.
He managed to come home in the July but only for 2 weeks as he then had a spontaneous bleed where he lost 4 litres of blood and 2 weeks after that his icd gave him a shock.
He’s here with us and ok as he can be at the moment he has to be on battery power during the day and plug himself into the mains at night. Its a long long journey and we dont know how long he has, he will have another assessment 1 week before Christmas this year to see if his body is well enough for a transplant. But would be put on the non urgent list so would probably never get a heart.
He has an ulcer on his tongue too which they are going to investigate this week and keep mentioning the big C, as if he hasn’t been through enough.
He doesn’t want counciling (although i believe he does) myself and 3 children (13,11,6) are waiting to be referred, the hospital was great but there’s just no help provided like for cancer patients for instance. Hes been through more than most at only 41, but myself and the kids have witnessed things no one should ever have to go through.
Sorry it’s a long one and this is only a small snippet don’t really know what I’m looking for but we both don’t sleep very well, I have occasional panick attacks especially at night, cry most days, have normalday to day stuff to deal with, hospital/drs appointments because he cant drive yet, I have no family near by his family are ok, have friends but dont want to burden them with all of my stuff. Its all getting a little too much and overwhelming i guess.
Thanks for taking the time to read.

Good morning. I’m sure others will be responding about how to get care for your husband and some help for you.

I am concerned that your husband did not get adequate treatment post-operatively and this has led to a marked decline in your husband’s health and functional capabilities.

I have had a similar situation with my mother who developed a blood clot in her leg due to hospital negligence which led to her being declined medical treatment for a condition she later developed and died of. I currently have a no win no fee medical negligence solicitor working on my late mother’s case.

I believe one has three years to file a claim from the time of the incident ( or one becoming aware of the incident) and filing the claim. I’m using a large company that advertises on tv.


Sounds like you have all been and continue to be, going through a very tough time. I was shocked to read your husband is only 41.
Your children should be able to get support as young carers and they may well be groups/ clubs in the area where they can receive support and meet other young carers. There schools may be able to help with this.
I don’t know whether your husband would qualify for hospice support as an outpatient, if he did, it would mean you would all get support, tailored to your needs,

I don’t feel like I’m being much help, (my caree is young and has autism.)

Hopefully others will be along.


Just in case it’s a consideration here … CHC / NHS Continuing Healthcare :

Thank you for taking the time to read and advice.
We did /are thinking about taking legal action for the 2017 incident, and really only have a few months left to act on it, at the moment it all just seems too much, it’s having the energy to fight it and cope with everything else.
We are waiting referal for something to do with carers to see what we’re entitled too, already know not entitled to some benefits because my husband has worked hard all his life and saved so until that money has gone cant get no help (it’s going down quite rapidly mind) he already gets mobility part of pip but dont think he could get the daily living part, which then means I’m not eligible for carers allowance.
The schools haven’t really done much other than say we’re here for you and kept an eye on the 2 youngest (primary) High school not so much, they didn’t even notice that my son a year ago didn’t have any friends and was wondering around on his own!
I have problems with anxiety too which in our situation currently is worse.

Hi Kim, I can’t imagine how you are coping at the moment. I had enough with just mum and monitoring the carers, nurses, hospital visits, etc.

I’m using Fletchers Solicitors in the NW. I emailed them on their website patientclaimline and they phoned me over the weekend. (plenty of others available!) There were forms to sign and history to provide over the phone and then checking their notes, but not too much after that, apart from a lot of waiting. They get the medical records and their medical consultant doctors and nurses review. Based on that information they decide if there’s a case and then go forward. That’s where I am with mum’s case.

Mum was 94 when she had the dvt and 95 when she died. If you have a case and are successful any compensation received may help provide for the cost of extra help your husband may need. A quick phone call or email could be worth the effort. Just a thought…