We're at wit's end from lack of sleep!

Willa45 Wonderful news in your update. Thank you for sharing - it gives hope to all of us who are struggling with intractable illnesses.

To my 'invisible' friends across the pond, I wanted to tell you how much I appreciate all your kind responses.

I also owe you an update so here goes:

On Friday morning 3/16, DH had another Cardio-version. He was sent home after lunch (out of A-fib) with Rxs adjusted and water pill reduced. Later that afternoon he told me he felt much better than he had in a long time. Friday night however, was the usual with not sleeping much, but we did notice that the crackling in his chest had diminished.

On Saturday evening, I went to bed and he went to his chair, both of us expecting yet another fitful night. Surprised when I woke up on Sunday morning and hubby was sleeping right next to me flat on his pillow!

It seems he wasn't feeling the crackling at all, so he decided to give our bed another try and to sleep the way he used to. Needless to say, I was both astonished and delighted the next morning!

On Monday we had a setback, because he reverted and he's been in and out of A-fib since then and that's still a big worry. The crackling is definitely gone though. Cardiologist wants to see him again next week so a lot remains to be seen.

So, not entirely out of the woods yet, but after weeks and weeks of torture, we're finally able to get a full night's sleep!

Ironic that my outburst of sheer desperation happened just as things were about to improve. It's always "darkest before dawn" they say, so I guess things were going to get better and I just didn't know it.

This is hard for you, I am so sorry.

Is it possible for you to sleep in separate beds - even if in same room? Also if he has to sleep sitting up slightly- do go and buy a good quality V-shaped pillow to give him side support.

Could your husband possibly get some relief by postural draining of the lung fluid.
I get a build up of this, due to damage from pneumonia, and was taught to do drainage by a nurse at the clinic. The relief is amazing.

I do hope you soon get it sorted.

Okay, you’ve had good advice. Particularly from people who have been in this situation, so this is it.
Speak to a pharmacist.
Get a riser recliner chair.
And speak to doctors again if unsure.
The fluid around the chest will drain down whilst he is more upright and that is why so many people get so much comfort from riser recliner chairs.

Get a rise and recline chair with 2 motors. Make sure it goes flat. Possible supplier for example
oaktreemobility.co.uk/rise-recline-chairs/?ref=ADW1&otcampaign=SS/Chairs/DualMotorChair/BMM&gclid=Cj0KCQjwkKPVBRDtARIsAA2CG6F9D_EOAu1bjvMp5f6GZPfoXRxihBnRqmLP2uTJuP9J0KAvaQNo2bcaAjKzEALw_wcB

Your husband can then get just the angle that is right for himself and snooze and sleep. You could have it by the bed so that he can hop on to it if he is uncomfortable.

As others in this thread have suggested he need proper advice on his medication and posture.

If you go onto the internt you will find that Papworth Hospital, Guys Hospital and others have advice on how to cope with the bed after heart surgery.

Good luck

This will let your husband lie and sit at any angle

You really need to insists he is given another referral. Do not leave GP surgery without one. I take a daily water tablet for excess fluid around my ankles and it does not make me feel ill. Sleep deprivation is likely cause for your dh feeling so bad.

I can’t comment on the medical issues but wanted to say that my OH hasn’t slept laying down for about 10 years now and it isn’t uncommon. If he can get past the unusual element and find a comfy position he will sleep. If he’s lucky the medical issues will be resolved and he will go back to horizontal sleeping. I wish you both luck.

So sorry to hear what a horrible time you and your DH are having.
Please do follow the advice to talk to your GP and try also to get a hospital appointment soon. Ask both your GP and the consultant to tell you if all the medication your DH is taking is necessary and IF it all works well together. Sometimes problems are caused when a doctor prescribes something without knowing what else the patient is taking.

When you have had some sleep and are up to it, try the charity shops that sell furniture and see if you can get a bed that can be adjusted easily for DH.

Get onto social services or CAB and find out what help you are entitled to - you surely must be entitled to some kind of help as you are your DHs primary carer!

Ask for a 2nd opinion with a good cardiologist.

If you aren't happy with your GP and can afford it, you could make a private appointment with the consultant you are under. It isn't cheap but you get undivided attention and it may sort all your worries.

I use a foam rubber bed wedge, which lifts up the upper part of your body about 1 foot above the rest of you. It has cured my sleep apnoea . If he can't lie down, one of these wedges is a cost-effective option to relieve breathing problems.

If DH needs to sleep more upright how about getting one of those beds where you can raise or lower the mattress with a button. You can get them for a double bed but have separate controls...as for the water pills I have no idea sorry

I have AF and am on meds and blood thinners but don't have any of these issues. I agree with Gabriella and the others that you need to revisit the medical profession and OT for proper help for your husband - emphasise the impact it's having on both your lives. The rise and fall bed may indeed help - a reclining chair is ok for short term but not very practical or as comfortable as a bed (slept on one for a fortnight once with a bad shoulder). I hope you get some help quickly as you can't go on like this.

Years ag I had very bad gastric reflux and had to sleep sitting almost upright. My husband and I tried everything. To raise the head of the bed but there was one fundamental problem. If only the head of the bed is raised you slip downwards as you are sleeping and spend the night mountaineering up the head end of the bed.
Our final solution was an electric bed. The difference is that with the head and foot raised up it’s like lying in a cradle. No slippage. There are a number of very expensive electric beds on the market but we went to Archers and bought a cheap one. It’s 10 years old now and still going strong. The strange thing is when you are lying on it raised, it feels like a flat bed! I can’t explain that one. ??

I agree with you OldMeg.... get back to GP immediately... today or tomorrow... sit in the waiting room for an appointment if you have to... and talk this through ..
Just a thought ... do you have anyone younger fitter less tired who can go with you for support?

willa45

A very sad situation BUT...I think you should be asking the professionals, not us. There will be many on here who have or have had people they know with some of the symptoms you mention. That does not qualify anyone to give recommendations on such a serious issue, especially if it's at odds with your own GP's and the hospital's advice.
A little knowledge can be a dangerous thing.
The only thing I would say, is to re-visit your doctor and insist on a referral to a chest specialist asap.
I'm sure that your husband's discomfort is impacting on your own health and, to that end, you need this problem sorting out right away and a diagnosis and medication plan that improves his health and your peace of mind.

You may well have a case for a hospital bed which your DH can borrow. Ask to have an Occupational Therapy assessment so you can ensure your DH can get a good nights sleep. Sleep deprivation is used as a form of torture for very good reason and makes everything feel insurmountable.

When you say DH sleeps in a chair, is it a recliner? I have two friends who can’t lie down, one of them with lung cancer and the other COPD and they both say they sleep well, almost sitting up, in their recliners. If you have space it could be a cheaper option than changing the bed.

Good luck with the GP. You both need to be listened to.

Sending best wishes. Not being able to sleep is miserable.

Been through all this sort of thing with my late DH - for eight years . Separate bedrooms and a very comfortable electric reclining chair helped us cope.

My DH suffers with AF. It's never been suggested to do anything to to fix this although he is on water tablets and blood thinners. He bought himself a reclining chair and sleeps in this in the living room. This suits us as we keep very different hours.

My experience is that if you do not push and pester your GP, they will do nothing, just fob you off. So you have to gather every strength and just push them

That's not how it ought to be or used to be, but it is how it is now.

May I suggest you book an appointment with your local pharmacy so they can go through the medication with you and can talk about better solutions. They can be much more knowledgeable than doctors when it comes to the best way to help the symptoms.

If you don't want to change the bed, you could have an electric lifter under the mattress to get the best angle.

This is a stessful and unpleasant situation you are in to say the least. Definitely speak to your GP or hospital Doctors about this as seeking advice from non medics has already raised your level of concern. Big hugs x