My mum is due to have open heart surgery in a couple of weeks time to replace a valve. For those of you who have had open heart surgery, is there anything you wished you had had during your stay in hospital, or something that you did have that proved really useful? She's got a list of the usual things she needs to bring but I was just wondering if there was anything I could get her that might not be obvious. Or indeed anything that would be useful to have at home afterwards whilst recovering? Thanks.
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Pebbles16
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I had AVR and bypass done nearly 4 years ago, you say you have a list so front fastening Pjs and bras is normally on the list. No lifting your arms above your head for the first 6-8 weeks, and no lifting anything heavier than half a kettle of water.
I was given a rolled up towel by the hospital to hold to my chest for when I coughed or sneezed. My son went out and got a soft baby blanket to use this went everywhere with me, it became a bit of a security blanket and I ended up sleeping with my arms wrapped around it. Family called it my teddy! Its just until your sternum is healed. Still have it rolled up on my bed just a little reminder!
Your normal phone and I had a kindle so I had plenty of books loaded. I normally wear mull slippers but found when I first started walking the corridors after my op couldn’t keep them on no idea why so family had to get me a full slipper with a back!
Can’t think of anything else, I wish your Mum the very best it really will be ok, and soon she will be travelling on the mended heart road we are all travelling on.
Stay strong for her, her emotions will be all over the place.
Oh thank you so much Pauline, I like the idea of a soft blanket for her. I really appreciate your kind words, she is dreading the operation but knows life will be better after it. x
Hi, I should have said, since my op I have my life back, every day I am grateful to the medical team who made it possible. Keep reminding your Mum after the op it’s baby steps and to be kind to herself, what she is having is a major operation, and it does take time to come to terms with what as happened, when the time is right and things are back to some form of normality In the NHS encourage her to do cardio rehab, it will improve her stamina but will help with her mental health, I found it invaluable, being around others who have had the same or similar experiences as her is such a help they know how you feel and those aches and pains you have they have to so you think ok that’s alright it’s normal.
You are so kind, I will encourage mum to join a support group as I have found such groups invaluable too, as you say just to talk to people who have had the same experiences as you makes you feel less alone. I do worry that there will be limited rehab opportunities due to coronavirus but hopefully as you say there will be a return to some kind of normality at some point in the future.
Agree with everything Pauline has said. Don’t forget to take chargers as well for the phone, tablet and/or kindle. I also took some puzzle books with me as I struggled with reading in the first few days after the op. It is common for the op to affect concentration and memory, which can take a while to come back. I found I would read a couple of pages on my kindle, stop to have a drink and then couldn’t remember what I had just read! I also took earplugs in with me to block out the noise on the ward. It’s a good idea to tell the nurses on the night shift if she does use them, for when they do their obs! She needs to take the painkillers they give her and to ask for more if she needs them. Immediately after the op is not the time for heroics. Once home I was able to reduce the painkillers to the morning (to get moving) and the evening (to hopefully let me sleep) and only had to take them during the day if it was a bad day.
For when she comes home, get a v-shaped pillow as it is very difficult to sleep in the early days because it is so sore and hard to get comfy. The pillow allows you to lie at an angle like a hospital bed does.
If her chair at home is low then it would probably be a good idea for her to sit on some cushions. You can’t push yourself up from a chair with your arms like you would normally do. You only do it once cos it hurts like hell!
Take it all a day at a time and don’t overdo it. It’s very easy to think on a good day that you can do more than you should. This is especially so with the exercise. When going for walks set little targets and remember you have to get there and back. I’m lucky coz I live on an estate where I could walk round my block, then increase it to two blocks etc.
Hope her op goes well and she’ll soon be n the road to recovery. If either of you have any other queries just ask, there are a lot of us who’ve been there.
I have'nt had open heart surgery but have had ablations one of which resulted in 2 extra nights in hospital.
I have found wet wipes useful & refreshing.
Before going into hosp i set up a bedside small trolley with tablets, tissues, etc to-hand + a travel kettle which has been very very useful as its much lighter than a normal kettle & easy to make a morning cup of tea at the side of bed + i also used it in the kitchen for first few weeks. As mentioned a v shaped pillow & if available an electric or ordinary reclining chair to relax in. These are often available 2nd hand on /ebay/ on local community for sale pages) wouldn't be without it! Do let us know how the recovery goes. (I have friends who say it has given them a quality of life they hadn't known for years)
I am 10 months on the road since my aortic valve replacement and single coronary artery graft bypass, known as cabg!
I brought a bedside cabinet from a spare room, to put by the side of my bed, as your previous person said. It is still there with jug kettle and I bring up water each night so make a cuppa in morning, and during night too if I’m not sleeping that well. Keep my biscuit box there and also my tablets, to take am.
Yes slippers with back a necessity.
Charger for your phone or kindle or iPad.
Eye mask could be useful if ward too light.
Wet wipes also, as someone else said.
And again as other say, it’s little steps at a time, and we get there. Every time I go upstairs without being breathless I’m so thankful for my mended heart.
I’ve recently had my 84th birthday! Sending best wishes to your Mum x
Oh my goodness that’s incredible, congratulations! I have had so much help and encouragement for mum on here, it makes me so grateful. I haven’t seen for her months because of the coronavirus situation and I live a few hours away so I at least feel I am doing something useful to help out by asking questions xx
I would advise getting a frame for around the toilet and a V pillow both of which they sell on Amazon. I also bought some wood blocks to higher the settee which was too low. The other thing I wish I had taken into hospital was a bigger sized nightie because afterwards I was very bloated with fluid retention. Wishing your mum and you all the best.
Front fastening bra, lots of pillows especially a v shaped one when she comes home .I had pyjamas which buttoned up the front .It is quite difficult getting your arms up.
In hospital ,face wipes,water spray thing for your face. Couldn’t concentrate to read to be honest. Had my bypass done in March and am feeling so much better. Didn’t have much of an appetite for a few weeks but that’s fine now. Can now sleep on my side. Yay !! I wasn’t nervous just apprehensive but everyone was absolutely wonderful,came home on Day 4 . And rested ....
Thank you so much, so reassuring to hear from people who’ve recently had surgery and are out the other side. Mum has the bras, might check the pyjama situation...xx
Hi Pebbles how nice to hear the care you are giving your mum. I too am due to have a valve op some time after September and am terrified. Am trying to make lists etc. Which front opening bra did you get?
Mum got some from Sainsbury’s of all places and they were very comfortable I believe. I know this is easy for me to say but try not to worry too much, the surgeons and nurses are incredible and will look after you so well. It’s just over 2 months since mum had her operation and she is doing amazingly well. Everyone on here is so friendly and helpful and will do their best to reassure you. Take care x
Hi Pebbles, how thoughtful of you. Most has been mentioned. I am 11 weeks post AVR. Mostly it has been the mental stuff. It is a bit like grief. You get angry, sad and sometimes elated that you are fixed. I think in normal times it would be easier. I miss going out for a walk and am finding our small garden boring... But keeping the grass down. 😂 Don't fret the first few days if mum is confused. I'm 61 and I was seeing things for sure. This is very common. It takes a while and I found it hard to concentrate on anything. The other patients are a blessing. All in the same boat so to speak. Good luck to. Mum and be sure to let us know how she is doing. Always baby steps. 💖X
Not sure these have been mentioned already but an absolute must, if you are a light sleeper, is earplugs and eye mask. So much beeping, snoring and general noise.
I bought a fluffy ‘thing’ to fasten onto the car seat belt. It just takes some of the pressure off the belt and is nice and soft. Especially nice for this time of year as it is coming up to summer and your Mum won’t be wearing a heavy coat - hopefully!
I had OHS in September and whilst I knew since 2003 I would have it, it actually happened very quickly (Monday 2nd told I would be operated in a couple of months, Wednesday 3.30 hospital phone call, Thursday 7.30 am on the table) I did not really ha e time to mentally prepare myself, so I would advise her to get mentally prepared and relax, before she goes in. It did not happen to me but be prepared for cancellations.
In hospital take whatever you can for her to keep herself amused .. kindle, tablet (for TV, radio, podcastsetc,.), spare power pack, top up mobile data for the month.
I was given slipper socks which I fell in lo e with (sad I know).
Barts gave me after a few days a sternum support which was so good for coughing and sneezing. See a posting about sternum support on this site.
Once she has had the operation get moving asap. I think I was sitting operation plus 1 day, walking operation plus 2. It's not particularly comfortable but aids recovery.
Apart from that cant think if anything! Good luck to her
Thank you, the mental preparation I know is really important for mum. She’s known since February she needed to have the procedure, then everything stalled with coronavirus, then she was called in 4 weeks ago for pre-op tests etc so everything was moving again, then nothing until this week and suddenly it’s all systems go again. So she’s been feeling in limbo whereas now she can actually start planning. Mobile data I will check with her, I’m not sure how much she has, good tip. Xx
Hi my husband is waiting for heart valve surgery too (should of happened prior to lockdown but cancelled and then obviously on hold now until hospital can start electives again). I asked the same question and got lots of friendly advice.
A couple of extras to the kindle and phone I purchased for him was a power bank so he could charge his phone up easily in bed and some wireless earphones. He uses them both now so fully up to it with how to use them ready for when he’s in hospital (he’s not the best at tech so it’s been good to give them a trial run!). Neither take up much room in his bag and they weren’t expensive. I am still debating getting him a very cheap phone just for calls as the Admissions Manager warned us not to take anything too valuable in as sometimes things go missing! The only downside of that is video calling wouldn’t be possible and if no visitors are allowed at the time he gets his call to go in then I think we will have to take the risk of taking in his iPhone as it would be awful if he couldn’t see anyone, in any form.
Wishing your Mum and yourself all the best, we are just waiting and hoping it’s not too much longer now.
Oh thank you so much, I have found this forum so useful and supportive already. I hadn’t thought about the power pack etc till someone else mentioned it above, and wireless headphones also a good idea. Hadn’t considered about things going missing, but I know what you mean about not being able to video call if visitors aren’t allowed 😬 I hate the thought of mum being on her own in there anyway. Good luck to you and your husband and I hope you don’t have to wait much longer - things do seem to moving and we have gone from being told on Tuesday oh no, you’ll have to wait for that scan as we’re only doing cancer patients now to having the scan on Thursday with an operation date of 1st June! Xx
Wow! That is a quick change around, we will keep our fingers crossed then but I might have to get back in touch with them soon as hubbie doesn’t seem too good the last week, slowed down even more and more tired, even the simple things seem too hard. I’ve tried talking to him about it this morning but understandably he’s scared and have said there’s nothing they will do yet but I’ll tell him about your Mum’s quick appointment. He’s got Atrial Fibrillation, Severe Mitral Valve Regurgitation, High Blood Pressure and Asthma and at 69 yrs of age it feels a worry either way.
Sending my regards, let us know how your Mum is doing and if you discover anything else that would be useful to have whilst in hospital.
I didn’t mean to put you off about the valuables and I suppose without anyone in hospitals now apart from staff and patients in not a problem. The hospital may even encourage the phones for video calls because mental health is incredibly important too; for your Mum and you. I know I’m going to need it just as much as my husband. Take care xx
Well, the quick turn around I suspect was because I actually made a complaint to the hospital after leaving mum in limbo for a month. I’m not sure if someone had overlooked something but it certainly got things moving. I would say contact the hospital as soon as possible, especially if you’ve noticed his symptoms getting worse. Mum says she is becoming breathless even going down the end of the garden so possibly that is a factor too. Good luck xx
Thank you, I think I may have to have another talk with him and persuade him to let me do that. Prior to being referred to the hospital he is having it done at I was constantly on the phone and a few mistakes (losing records) had been made, which held things up. His problems started in Summer 2018 and he had an echocardiogram in December 2018 with the diagnosis of Severe Mitral Valve Regurgitation and AF. He was told in January 2019 he needed an operation but it took the first hospital 10 months to complete all the tests and scans and then refer him to the hospital he’s under now. The new hospital worked really quite fast in comparison but it’s been a very long road. Plus just prior to lockdown he had his operation cancelled 3 times on the day prior to going in.
My advice from my own experience and observations would be to start a large ring file.
Put absolutely everything in it – letters, appointments, referral letters, discharge letters, appointment letters, phone conversation dates/times, your thoughts and observations after a doctor's appointment or specialist visit and also all your investigation results. This can then be your go-to information source, and will be totally invaluable.
In my experience it has also proved to be a good, regularly used immediate source of reference for doctors, surgeons and specialists on ward rounds.
Thank you for your reply. It is indeed very good advice. I’m not as organised as to actually getting it all in a ring file but I have got everything in order as you suggest. Every telephone conversation, date, time and who with too. This is something I do with any important matters and has held me in good stead with regard to my husbands operation.
One other little tip I recently picked up from an A & E doctor, after my husband had a nasty fall getting out of the bath (resulting in two broken bones, 3 larges gashes to his leg and immediate huge swelling to his foot with severe bruising because of being on Warfarin. We had to get an ambulance out to him as he also banged his head) was to keep a little note book, small enough to pop in a bag, with a summary of medical conditions, any recent hospital admissions (such as his fall and a month prior when his blood pressure went dangerously low) and an up to date list of medications. It is quicker for the doctors and it stops you missing something at a time when perhaps your anxious and not quite thinking straight. Of course, it will probably be even more valuable now if only the patient is allowed to go to the hospital.
It's great to know you are looking out for your mom.
I would suggest an eye mask to block out the night lights and possibly ear plugs. It's difficult to sleep at night with all the activities going on. Once out of hospital a good "V" shape pillow was a godsend as she will have to sleep on her back for a while.
Hi Pebbles, I had an AVR December 2018 and spent the best part of 3 months in hospital pre and post op. I haven't read all the replies but the things i would bring if I ever had to do it again are charging cables for whatever devices your mum is bringing, I would also invest in longer charging leads 2 or 3 meter so still can use while charging. If you have a Netflix account or family or friends have one then load it onto a device. I also had my virgin go on my tablet and my brothers sky go, so plenty of tv to watch to pass the time. Small change is handy if your hospital does a mobile shop for daily papers. Some treats and fruit to nibble on. Pens for doing the crossword. Books to read or magazine. Tissues will be very useful post op to spit the fluid you will bring up into. I used a pillow to hold against my chest which worked well. I wore shorts and t shirts during my stay as I found the hospital very hot so some clothes to keep cool.
Hope all goes well for your mum, as mentioned previously the mental side of things is pretty hard at first but I found the cardiac rehab classes a blessing and helped me more mentally than physically but everyone is different.
Thank you so much, mum has a Netflix account so I’ll make sure she has the app loaded on her tablet. I’m really hoping she will have some rehab classes rather than just online stuff as I think mentally she will find this challenging going from someone who charges around everywhere and hates sitting still!
Hi Pebbles, good luck for you & your mum. Recovery is often a long road, but the medics are ace at fixing us. It may be tough for you as well, so plan some self care. X
For in hospital:
-Small box, wash bag or pouch, to keep stuff in on tray table that’s by/over the bed, so small things are nearby & don’t get lost (glasses, pen, phone, etc). Saves her reaching to bedside locker.
- eye mask & more than one set of earplugs (they’re fiddly, I dropped some & wouldn’t reuse from the floor!)
- a fan? I had a Chinese folding paper one, they do keep the wards warm
- notepad/ blank paper, for either of you to note Q’s pre doc visits, or your mum wants to write lists for you to bring things etc
- whatever she needs to ‘manage’ her hair in advance, as she shouldn’t be reaching up. Tie-bands, Alice band, clips, whatever works for her. I plaited mine before surgery & left it like that for 10 days, as hair washing & brushing is really hard & best avoided for a while.
- full-back slippers but also maybe bed socks?
- PJ’s with shorts not trousers, due to warmth & to make loo visits a little less complex!
- my family brought me loo paper on a roll, as dispensers can be fiddly, especially at night.
- a tiny memento for her tray table or locker. Real flowers not allowed. I was given a little plastic toy, some had balloons, family photo etc.
- leave wedding ring & jewellery at home/ with you
- face wipes. My hospital had body wet-wipes, but I appreciated having my own for face.
- if stable in them, flip flops or shower shoes, in case she wants to use shared shower. The nurses will do sponge baths, but when I was ready, I liked standing under shower, even tho didn’t exactly wash. For you, clothes that won’t be ruined, if you decide to help her shower!
- download her some nice music, podcasts or nature sounds to relax & maybe help her sleep
- front fastening outdoor top for journey home.
- an inflatable U-shaped neck pillow, in case she dozes in her chair or car journey home.
- a small refillable water bottle if liked (I was left a jug daily but was prone to spill it!).
- A clock she can see from bed at night if liked, I didn’t want my watch on, due to the canula needles.
For home afterwards
- the V-pillow, but also 2-4 thin pillows, to go under arms, under knees & support back and/or chest, as she may need to wiggle in the propped-up position, to avoid bits going to sleep/ pins & needles.
- small bedside bell or other way to call a family member; she needs someone with her all the time to begin with.
- walking aid for slow strolling, as doing this daily helps clear lungs, even if only tiny distance. Someone to go with her, for company & safety.
- multi-day pill boxes. I had 2x 7-day boxes, in 2 different shapes to identify morning & evening. Maybe a ticklist so she & family can keep track of tablets, especially pain meds, which may be 4 times daily but you’ll want to ensure they’re not duplicated by mistake (I was woozy enough for ticking off to be important)
- you could find out in advance where she’d need to go for blood testing (usually pin-prick), if it turns out she is on warfarin (blood thinner) afterwards.
Agree with what everyone has said and advised, but , unless I have missed it you have not said what type of valve you are going to have? Do research on this. I was 66 when had op last year. I made decision on a metal aortic valve , which hopefully will last the rest of my long! life. The synthetic valve could last less time and need replacement in 15 years . It's a big op which I would want to avoid having done again if I can. Metal valve means I have to take warfarin everyday and the level in your blood has to checked with a blood test every 2 weeks until you get the level balanced and consistently in the correct lower and upper range. Do advise you research this as much as you can and keep asking questions. By the way I feel great, about 10 weeks to get over the op and just feel great. Good luck phil
Also - small amount of loose change in case your mum wants to buy anything off the trolley that comes round with magazines, sweets etc
+
I found it very useful to have a typed out notes - when you arrive they go through a quite extensive list of questions, so take any past results - blood tests etc, current medication - i took in all the boxes of tablets i was taking so they have correct name/brand/ doseage. Also it saved me waiting if hospital pharmacy didn't have them in stock.
Get your mum to either print/write out things like - current address/next kin & their landline,mobile, work place phone number/s. they will ask details of previous illness & date of previous surgery + any medicine and food allergies.
May sound unnecessary but... when you get to hospital & they are booking you in - with so many thoughts & feeling anxious going through your mind it's easy to forget phone numbers meds etc. Although hospital notes are computerised on more than one occasion having them to hand speeded up the process so that I was able to be ready & waiting for surgery.
Also... having the name of gp, address of surgery, and their phone & email address is important.
Being able to present a pre-written list makes it so much easier for the staff & takes away the worry of remembering a lot of the required information needed (hope it helps!)
Everyone else seems to have given advice on what to have etc, so I won't add anything else. Obviously it's a personal journey.
I had open heart surgery on 16th December 2019 to replace the aortic valve. I had requested the biological valve. Fast forward 24 hrs I was woken up in intensive care to find I had the mechanical valve and also one bypass graft. Things didn't quite go to plan. I stayed in intensive care for 5 days, while they regulated my heart rate.
I was finally discharged on Christmas Day at 12 noon.!!
I've had a couple of setbacks since, ie leg wound needing another op and heart rhythm not quite right so needs fine tuning, but apart from that the recovery from the actual surgery has been straightforward! ....so if all goes to plan for your mum she should be up and about relatively quickly.
Don't get me wrong, the slightest thing is an effort for a while ( getting dressed, having a shower,sneezing is horrendous!), but very quickly these get easier.
I am now 5 mths post op and doing most things again, and would have been a lot sooner if my leg behaved itself, and coronavirus didn't appear!
I found that I struggled to concentrate for a while after the op so reading, puzzles etc were very challenging. It's definitely baby steps and do what you can when you can.
I still have days where I don't want to be bothered and will rest a lot, I've learned to listen to my body.
Everyone's experience is different but your mum knows her body best and what she will be capable of.
I am 55 btw and have always been the youngest on the cardiac wards! I was found to have a congenital condition last year which had never been picked up on before!
I wish your mum the best but also to say she will get through it . X
Take a pair of loose fitting shoes for when you leave, my feet swelled by about 2sizes while I was in hospital also a cushion when going home to keep the seat belt away from the site of the op. If you are visiting the patient take some tasty treats, I really missed radishes!
I agree with all the good advice already given, especially the rolled up towels in a pillowcase to hold against you when you cough or sneeze.
When I was in hospital following AVR my mouth was very dry all the time, so I found boiled sweets very welcome, they also helped if I felt a cough coming on. After the operation a lot of people suffer with constipation, they ask you every day if you've been! I asked my husband to bring clementines in for me to help in this regard. They were so refreshing too. I was in hospital for 5 days. The cardiac rehab is very worthwhile. Best of luck to your Mum. It's easy to say don't worry, but really it isn't as bad as you imagine.
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