Please forgive this long post, but I am in desperate need of advice from health carers out there:
In early January, DH had pneumonia which affected his heart and likely triggered Atrial Fibrillation (we spent New Year's Eve in hospital). He was also having trouble breathing when he lay down flat and could only sleep sitting up.
In hospital, we were told he suffered a very mild heart attack and that there was minimal damage to his heart. He did have a blocked artery that needed a stent.
When they lay him flat in the Cath lab, DH suffered what they referred to as a "flash pulmonary edema" and Cardiologist aborted the procedure altogether. He was in hospital for twelve days after that; first to recover from pneumonia and subsequently to have the stent put in (successfully despite being in A-fib).
During all that time he still couldn't sleep lying down without developing a gurgling/rattling in his chest and trouble breathing. He was sent home (in A-fib) with blood thinners and a prescription for diuretics (water pills) to help dry out the fluid (presumably residual fluid from his bout with pneumonia).
He's since also had two Cardioversions (shock to the heart) and one Ablation (radiofrequency) procedure to get rid of the A-fib. Currently he's out of A-fib, but what is driving us crazy is that he still can't sleep lying down and most nights he can't sleep at all with this chest congestion.
His cardiologist wants him on a water pill even though he doesn't have congestive heart failure...a blood test confirmed it's NOT in chf. X rays confirm his lungs are clear and there's no pneumonia. Our family doctor also reassured us that he doesn't have congestive heart failure.
Issues: Water pill helps but it makes him feel very poorly and could also be affecting his kidneys. A well meaning friend suggested that water pills can affect heart rhythm (dehydration? low potassium?, low blood pressure?) and put him back in A-fib. This new information makes me nervous.
During the day he's fine but he's exhausted from the water pills and lack of sleep (we both don't sleep). The (crackling) congestion in his chest and difficulty breathing seems to happen only at night and only when he lies down. I thought about allergies, but antihistamines like Benadryl don't seem to help.
All I know is that DH manages to sleep only in a chair and very poorly at that. He is miserable to say the least. Most nights, we have lights on and off at all hours. Sleep deprivation is ruining our lives and we need help!
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.
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.
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
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.
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.
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.
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.
Willa45 Wonderful news in your update. Thank you for sharing - it gives hope to all of us who are struggling with intractable illnesses.
Registering is free, easy, and means you can join the discussion, watch threads and lots more.
Register now »Already registered? Log in with:
Gransnet »Get our top conversations, latest advice, fantastic competitions, and more, straight to your inbox. Sign up to our daily newsletter here.
