Is there some support for coping with my husband's health issues

[Meefey]

Me and my husband are both in our 30s. I have been with my husband since 2009. He's had 3 heart surgerys under royal Brompton hospitals care. Also had another operation when he was a child. He's now unable to work and been diagnosed in heart failure he's been having different tablets changed for months he's not getting any better. He can't do anything without struggling with feeling lightheaded, sweating, heart racing and leg swelling to name a few. I am very worried. I would really love some support. He actually has an appointment tomorrow with the cardiologist via telephone which is a pain cause they cannot see him or see how he struggles. I really think he should be admitted to hospital and put through physical tests like walking while on test machines to see what exaclty is happening to him.

[Hidden]

Hello

I am so sorry to hear what your Husband is going through which is affecting you to as you are going to feel worried

I am not sure how good your Husband is at speaking up but I am glad you have the call tomorrow

When the call starts would your Husband mind saying to the Consultant my wife would like to be part of this call could I put it on loud speaker ?

I have done this before with my Consultant who has never had a problem with it so imagine neither should your Husbands

Before the call ask your Husband if he minds you speaking up about your concerns

Hopefully he will say yes

What you have written in your post I would express this to the Consultant and anything else that maybe a concern

Make the most of this telephone appointment and if you are not happy with the answers you get do not be afraid to ask if you could have a second opinion as you are not happy

Good luck to you both and I hope you will let us know how you get on x

[Meefey in reply to Hidden]

That's really supportive and a really smart idea. Thx very much.

[Hidden in reply to Meefey]

I will keep my fingers crossed for you both and look forward to hearing how you get on

Good luck x

[Schora1]

So sorry to hear your husband is suffering and struggling. Telephone consult have their place but if I were you I'd insist on a face to face appointment. I have done and my rheumatologist and cardiologist have both told me to insist on face to face. Hope everything turns out right. Good luck.

[Meefey in reply to Schora1]

The issue with that also is my husband hates travelling because we don't drive he has to walk and get trains and tubes and he struggles moving around. But yeah them seeing him after walking all sweating and breathless would make a difference

[Fullofheart]

As usual BeKind is on it. I would recommend the same and I would also ask "how long do we have for this appointment"? That way you can prioritise your key questions etc according to the time you have. Don't be afraid to ask for a follow up appointment. It sounds very worrying for you both and its important to feel listened to.

I'm mid-late 40s now, been living with AF since my late 20s, which has now developed into other complications. I've often said it would be good to be part of a support group for those of us who unexpectedly find ourselves with heart conditions at a younger age. Not to exclude others, but because we often have unique challenges like navigating work and finances, making lifestyle choices that will need to last a very long time, balancing family responsibilities, adjusting to the expectations of others who see us as "young and fit", having multiple procedures, having consultants unwilling to do procedures because of our age etc. I have lost count of how many times a doctor has said to me that they are a bit stuck because I'm the youngest patient they've seen with this etc... it doesn't instill confidence! I'm still getting that 18 years on interestingly.

Alas, I don't know of any such group but I would recommend staying linked to this online community and talking with friends and/ or seeking professional support. It's a lot to take on alone.

Really wishing you all the best. Please keep us posted.

[Lakky12]

Hi, sorry to hear about your husband. Have you tried speaking to a nurse at the British Heart Foundation? They might be able to offer some advice and also suggest ways in which you can be supported. Their website is very good too.

[Meefey in reply to Lakky12]

I was thinking of trying a live chat and see if there is some support. I don't see myself as a carer but alot of people do see it that way

[Hidden]

Many of our automatic processes in the body rely on electrical impulses, all firing at the right time to keep things going as they should. Sometimes the diet might be lacking in enough of one or another mineral to ensure the correct amount is used each time it is needed-liken it to a car distributor-old fashioned car that is-and if the timing is off the engine 'pinked' or slightly misfired. It's the same with our hearts. A number of minerals-chloride, potassium, calcium, magnesium are all needed in minute amounts to enable the heart to beat regularly and work efficiently. If the diet is lacking in the correct amount, the heart can 'misfire'. Ask the cardiologist if it might be worth taking an electrolyte tablet to ensure the minerals needed are in your body for when they are needed-24/7/365! Doctors usually treat the symptoms and not the cause, so he may well say it is irrelevant. I'm not a doctor, but had AF a few years ago and now having read extensively regarding causes, take electrolytes every day in tablet form and🤞 have not had a recurrence! Athletes supplement their diets with electrolytes, when training to maintain optimum performance. But even if we are not top athletes, our bodies still require the right ingredients to keep us going properly!

[TMeditation]

I spent time in the Royal Brompton 3 years ago to have my aortic valve replaced and found the care I got there excellent - I hope your experience has been the same. As to the phone appointment with the cardiologist, I wouldn’t concern yourself too much about that I’ve had some first class appointments that way.

I agree with someone on here who suggested your husband include you in the appointment and put the phone on speaker. Make a list of all the points you want to make and alongside how they have been answered. DO NOT GET OFF THE PHONE UNTIL YOU HAVE BEEN REASSURED ON ALL POINTS.

Once you hang up it’s back to you to deal with your problems. You have a chance here to talk things through and be given a way forward.

Be strong, don’t be put off by any time restraints, just dig in and keep going until you feel you have achieved your aim. It would be very harsh of your cardiologist to end the call if you still had uncertainties.

I wish you the best of luck. Sue X 🙏

[Meefey in reply to TMeditation]

Many thanks. My husband has had his Aorta replaced years ago. His valve replaced twice so he's now got a mechanical

[TMeditation in reply to Meefey]

Oh my word you’ve had a lot of challenges to face over the years. Seems to me you probably know how to battle through things. Best of luck through this most current situation. Sue X

[Meefey in reply to TMeditation]

Thanks

[Qualipop]

Write down all your worries,concerns and questions before the phone call and insist that you need to know more and feel he needs more tests "WITHOUT DELAY". You have to be very proactive these days and pleasantly insist that things are done. He may need an echocardiogram, a stress test ( although it sounds as if he'd struggle,),, a holter monitor and to be seen in person because he's getting worse and really struggling. Stay calm but insist. MAybe today before the phone call, ring the BHF nurses for advice on what you shoudl be asking for. They now operate 9:00 - 5:00 M-F, and 10:00 - 4:00 weekends and bank holidays. Their number is 0300 330 3311.

[Meefey]

Appointment has been done. He's basically been told he needs to lose weight. I said how I get that but also I don't believe that's the only factor as he's had heart issues all his life. Hes been put on another tablet for the heart failure and injections for his stomach for losing weight which is also for diabetes which he don't have. He's gonna be referred to a dietician and possible weight loss surgery specialists. He's now gone and brought 40 quids worth of fruits and vegs. I've said how that's not the solution. He needs to get help and I suggested maybe joining like weight watchers to do it together and help each other.

[Cornishbeach in reply to Meefey]

Hi Meefey, the nurses at your GP practice should be able to help with the weight loss or a Social Prescriber. They may 'prescribe' weight watchers etc if that is what your consultant has said. It's a postcode lottery I know so good luck and I hope they can help. They should also be able to signpost you to some support. Best wishes.

[isobelhannah18]

You need some support specifically for you. I would contact carers' organisations and see if there is any help or support you can access. Here are two links for you: carersuk.org/ and carers.org/#:~:text=Carers%....

I would also make use of this forum. I have found everyone really supportive and full of useful advice. Best wishes to you both

[Meefey in reply to isobelhannah18]

Thanks very much for your message. A few people have said this to me but I really don't see myself as a carer. He makes his own meals. Manages his own medications etc. Only thing I really do is housework all of it. School runs. Some cooking. I go with Greg to hospital appointments. Emotional support.

[Heather1957]

I know you and your husband are very much younger than I am but our local authority have a department called the reablement team, They come out for about 6 weeks and do an assessment on the 'patient' to see what they can do alone and decided if a care service can help. During these 6 weeks they may also utalise the help of a physio to give out some strengthening exercises.Now based on that assessment they will engage a Social Worker who will make the decision whether you would benefit from a care team. Now they are not medical people just will help with dressing, undressing, bathing etc.

As for the financial side, if you have over a certain amount in the bank and can afford it there is a cost but if there is no surplus money then social services will pay.

That is in my local area and I don't know if it is the same everywhere but worth chasing up.

[Meefey in reply to Heather1957]

Thanks very much I don't think that's needed currently. My husband Greg is able to do self care and cooking etc. It's getting out the house. Working and exercises really

[Heather1957 in reply to Meefey]

Long may it continue, it may be worth contacting the Social Services just to find out if there is anything available. Again locally we have volunteer drivers who take people out for drives if they can no longer drive.Good luck in your search you will need a bit of support over time.

[Meefey in reply to Heather1957]

Thanks so much

[Chickenlou]

Hi Meefey

I’m also the partner of a heart “patient” so I understand a little of how you are feeling.

I have found this forum amazing (and I am so grateful for everyone here that’s ever taken the time to reply to me!) Please continue to share/ask for help on here.

I’ve struggled with the idea of being my partners carer, as that’s not how I see myself - but I have now accepted that I am...although firstly I am his partner. It might be worth at least contacting some of the carers organisations local to you to see what they can offer.

Take care of yourself and your husband x

[Meefey in reply to Chickenlou]

Thanks ever so much

[SRDS]

HelloI am sorry to hear what you are going through. As a young wife of a heart patient myself, I completely understand. I agree that you should ask to be included in the conversation. I also agree that you should not get off the phone until all your questions are answered. My husband often stops me from asking questions as he feels that I exaggerate. I do tend to stop when I see this. But I feel bad after. So, i would ask ALL my questions now and I recommend that you do the same.

Do talk to us when you can. This community has, and is, helping me so much. People here are supportive. So do not hesitate. Anything you want to talk about, drop us few lines.

And oh, let us know how the phone call goes tomorrow.

Regards

Shaivi

[Meefey in reply to SRDS]

Appointment has been done. He's basically been told he needs to lose weight. I said how I get that but also I don't believe that's the only factor as he's had heart issues all his life. Hes been put on another tablet for the heart failure and injections for his stomach for losing weight which is also for diabetes which he don't have. He's gonna be referred to a dietician and possible weight loss surgery specialists. He's now gone and brought 40 quids worth of fruits and vegs. I've said how that's not the solution. He needs to get help and I suggested maybe joining like weight watchers to do it together and help each other.