So, after the very unexpected heart attack (clot passing through the hole in my heart) 3 weeks ago, all of a sudden I have the date for my OHS to close the ASD (and maybe repair the stretched valves too). It's planned for 14 April. 10 days' time.
I feel woefully unprepared. I need to write a Will and letters for my husband, sister, niece and dad in case I don't make it. And then I need to think about my recovery.
What are the must have items or top tips for recovering from OHS in your experiences?
One thing I remember reading about was something you can stick over the wound to reduce the scarring as it heals, but I am now wondering if that was one of my many weird surgery anxiety dreams!
A fan, a V pillow for home... All the painkillers... What else? What should I be thinking about?? I've had very little information from the hospital (yet - this is happening fast!) and with the BH Easter weekend there's little time to get organised.
I'll take all the advice you can give me, you brilliant brilliant people. Big love xxx
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LadyZ13
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You have had quite a shock here and all moving so fast I can imagine you feel your head is all over the place
I can respect you want to write a Will and letters but I know you will come through this
These operations seem really frightening to us but to the expert Surgeons they do them everyday and you will be in safe hands
I have not had the operation you are about to have I had a triple Bypass
What I did was made sure all my house was cleaned , everything organised at home so I would not have to worry about anything when I got home but recovering so I even paid some bills in advance
My bad was packed and ready , nightdresses all the usual things open front night dressers lose are the best , I took crosswords , phone and charger a book things to keep me occupied
If you do not have a fan at home buying one will not be wasted it will come in handy if we have a heatwave again this Summer
You might benefit from a V neck pillow I did get one once I came out but then I never used it what I did find useful was having a shower chair that I could sit on in the shower as I was weak at first and that was very useful
I am sure others will have lots of suggestions when they read your post but I think main things get the house organised so you have nothing to do except focus on you when you get home and anything you find you need once home I am sure family and friends would pop out and get it for you rather than get them now to find you did not need them
Thanks as ever BeKind, the first on and a lovely reassuring tone immediately.
I'm trying to get on top of the house admin - cancelling subscriptions that will land while we're away, sending birthday cards for all of April, thank god all bills are just direct debits! Also in the very lucky position of having a weekly cleaner - she's offered to do a bit extra while I can't change beds etc.
The shower aid is an interesting idea. It's hard to judge how weak I'll be post surgery so that might be one to figure out as we go. Where did you get the chair from?
Well the house is organised then which I think helps we do not need to have that to worry about just our recovery
When I was in the Hospital I never thought I would need a shower chair but as time went on even though they had walk in showers I realised how weak I was and a bit wobbly
I did not go over the top when I bought one as there was no need I knew for me I would not be using it to long but would be needed and the time I did use it it really was needed
I just went on line I cannot remember where now and put in shower chairs picked the cheapest to be honest but with good reviews and it was here for when I got home
Hope you get some really good suggestions and you will be fine and soon posting how well you are doing x
That is helpful, thanks BeKind. I was wondering if someone in the village might be able to lend something suitable. We do have an old stool but it's a wooden one and weighs a tonne! I'll give it some thought but just get back on Evil Amazon if it comes to it.
This one is really light weight , plastic but good as you could wipe it down after using and dry it of put it away till next time it was needed which was daily but you know what I mean
Yes you could ask about someone might have one if you lived near I would have given you mine x
I don’t have any advice regarding your surgery but I wanted to share that I wrote letters to my partner and children the night before I had my “planned emergency” c section with my youngest daughter and I found it really empowering and cathartic. I also compiled a wishes letter for songs I like, my favourite flowers, and other things to help with planning my funeral but also information to share with my children when they were older to remember me by.
For a hospital stay I would recommend investing in a power bank in case you need to charge your phone and can’t reach the plug socket; an activity book like sudoku or adult colouring etc to keep your mind occupied, loose fitting clothing that’s easy to get on and off, flip flops for when you take a shower, lip balm, dressing gown, etc.
Also, get stocked up on plenty of paracetamol for when you come home.
Wishing you all the best and hope it goes well, keep us posted!
Thanks Soap - good shout on the power bank. We do have one and I'll insist husband leaves it with me! He'll be in a nearby hotel for the duration as we're not at all local to London...
The letters and Wills stuff feels very heavy but it does need doing and I think you're right about it being cathartic. Having prepared for the worst puts you in control too. I have a lovely 4 day weekend to think about that! Paracetamol stockpiling has begun casually but we'll up the ante now. Plus send out friends, neighbours family for them. They're always asking 'do you need anything?' and asking for something that's 15p feels legit
Hi as B kind said surgeons do this all day ever day My OHS was done as soon as my damaged value was found after being ill for months didn't get time to think about it but iam so greatful they found it and was able to fix it as they are yours iam now fully recovered but it takes time I expected to much to soon and struggled mentally afterwards stay strong and if you need answers your find them on this fantastic site all the best x
Dry shampoo! What a great shout! I remember feeling icky about my hair when I was an inpatient after the HA so I can see I'll need it. I'll get a full can from Boots before my isolation period begins at the weekend.
Hi. What a shock for you, no wonder your head is in a whirl. Yes, do that Will - that is really important.
Front fastening soft bra! M and S do a range for women who have had breast surgery - excellent. I thought about a sports bra, but they need to be pulled over your head. And on the subject, front fastening PJs, front fastening clothes for when you are home for at least 2 weeks.
A cushion/pillow in the car for the journey home - seat belts go across the sternum and it was invaluable at home as well.
Food for the freezer - you really will not want to cook and someone to do the housework!! You won't be able to. You can lift nothing heavier than a half filled kettle for approx 10 - 12 weeks.
Toiletries, radio, phone and charger, book or music, dry shampoo, and later on after my six week check I used Bio Oil on the scar area(s). Ear plugs - hospitals are noisy places. I did not want to see the whole family and neighbourhood when I was in hospital - and limited visitors in the first week...after that anyone and everyone was welcome. One of the things they don't tell you is that after you begin to feel a bit better - its quite boring! Hopefully the weather will have improved a bit and you can enjoy your daily walk in the sunshine - oh yes, the daily (or twice daily) walk....a must. Plan to go a bit further every time you go out - even if its only to the next house. I had my surgery in June (both times) and so walking around was a joy - all those lovely gardens and flowers to see and smell.
Thanks for the advice too and directing on the front-fastening bra. I'd seen some very heavy duty models and felt they might be overkill for my relatively small boobs (plus they cost so much!) but the M&S range is more affordable so I'll get one and send someone to fetch another if I love wearing it post-surgery. I mainly wear bralettes which go over the head, but have recently discovered that I can step in to them - I've got no tits and no bum either!
I've got phone and will load up the tablet with box sets. My cousin sent me a sleep mask that plays music! Need to figure out the blutooth...
We have a tiny freezer so I'm thinking about a Food Box subscription for a few weeks. Luckily my husband is very good about cooking and as he WFH he can break to prepare meals.
The pillow for the car is something I would never have thought of. The surgery is in central London but our thinking is that a taxi back to the outskirts (where we'd leave a car) is actually going to cost more than just parking in central London, so I think we will drive.
Once home there's a few family members fairly locally and Evil Amazon Prime for getting hold of things so I'm hoping that'll address any unmet needs.
Hi.. no advice but.. just to wish you all the best for your procedure. Scary but obviously necessary. You will soon be right as rain and throwing away the V pillow. X
I have no advice to offer, but I wish you the absolute best for your surgery and your recovery!
I believe that several others offered up excellent suggestions for things that you might need, and it sounds like you are already a highly organized person. In the meantime, have a Happy Easter and try not to worry too much.
Thanks Smitty - that's kind. I've been told to isolate from Sunday so have cancelled plans but might have a cheeky coast trip somewher quiet instead. I hope this thread helps others too!
Hi, I completely understand your head is all over the place, please try not.to worry too much 🥰 I had four days notice for my op to close my ASD, thankfully after two attempts in theatre, they managed to close it via my artery, although it was tricky, I managed to avoid OHS.
All I can say is write two lists, one for immediate priorities (new undies and soft sox is a must!) and the second a written plan for when you come out of hospital.
My hubby joined up to hello fresh for meals which proved to be a godsend and something we have continued, take a look at it, saved so much dinner time stress after I came out 😊 set yourself up with a support group for post op that you can share your thought process and feelings with. Also lots of magazines or audio books/podcasts on your phone is another good option if you don't feel like reading.
You will be absolutely fine, I appreciate you are also having an additional procedure but as scary as it is prior to surgery, there was a sense of relief that they have fixed you when you wake up 🎉
I have found I now have anxiety about the device moving and having no one to talk to who has experienced ASD closure has been really hard 🙈 so make sure you have that support group in place for when you feel up to it x
I wish you well and look forward to hearing how you are doing, take lots of care 🥰
Thank you so much, this is a really lovely and helpful message. All the crew on the Somerville FB group have been such a great support network, many have had ASD closures though some were many years ago now. Their advice and helping me prepare has been great for the mental side of things. I recommend them if ever you need to talk about a congenital condition!
Hi had OHS 8 years ago. Was going to write you a list. But you mentioned Will so tick that off and Francesw47 just covered all the rest. Soft front opening bra and front opening PJs or nightie a must. As is the cushion for the journey home. Good luck and let us know how you are when you are up to it.
Thank you! The Will bit is scary but I'm told it helps. It's ridiculous that we don't acknowledge our mortality sooner, really. I'm so glad of everyone's take on this, it's enormously helpful.
Yes, there wasn’t this site or I’d not heard of it when I went through OHS. The will thing was scary but strangely it did put my mind at rest knowing I had at least sorted that bit of my life out and oddly made it easier for me to go into hospital. I just got the other very helpful info about bra and nightie from my sister who worked with someone. Would you believe it not many women then were having that sort of op. The cushion thing I wished I’d known as journey home I remember well as not very comfortable. I take it you know about the rolled up towel trick for bracing yourself for coughing and sneezing and the V pillow is a godsend for the first few weeks. As I said I wish you all the very best and let us hearties know your ok x
I can see you have had a lot of sound advice already, and my surgery was well over 30 years ago so I can't remember everything that happened. I.will.share what I can though. Expect to be in intensive care when you wake up, this is nothing to worry about. After a couple of days, once the anaeyhas worn off you should start to feel a lot better as your heart should gmbe working more efficiently. I was in hospital for around 10 days, then home. Obviously things like lifting should be avoided for quite some time, you will probably have stiches in the chest that need removing after around 5 weeks but mine were pulled out with only a mild scratchy sensation. My meds kept piain totally at bay but I had coproxamol which I don't think is used any more, still you shouldn't find the healing process very painful. Avoid the temptation to do too much too soon, and definitely get yourself booked on a cardo rehab course if you can, best time is around 8 weeks post op. The course should build your confidence to get back to doing everything you used to but with experts on hand to help you.
Hoping and praying that this will go well for you, and btw tell your family not to worry too much, you will be coming back fitter and stronger than before.
My essentials for hospital were...A 2 meter phone charging cable
The super concentrate cordial to make the copious amounts of water that I had to drink, drinkable... it was lukewarm 🤮
Boiled sweets.. I had Foxes glacier mints and always had one ready to pop into my mouth after I'd had to have the potassium drink
Sleep mask and ear plugs
I downloaded some audio books and listened to them using my noise cancelling headphones. I love reading, but my eyes post surgery weren't good, so this was great.
Aromatherapy pillow spray to try and calm my down
Short sleeved front fastening PJs. If you do have OHS you won't be able to lift your arms yo get stuff on and off for a while. So same goes for bras... front fastening post surgery bras. Without a bra the weight of "the girls" pulled in my sternum and was really painful
I took puzzle books and a Kindle too, but couldn't concentrate enough to bother with them.
Thanks Joanne, I'm quite worried about my mental state - the anxiety the day before (plus I'm on the afternoon list). Were you relatively calm after the op itself? I'm scared about waking up after the GA in intensive care with all the tubes in and being afraid or not knowing where I am. It feels overwhelming on this side of the Op! And that's without worrying about the pain as I recover 😭
Bless you. I was so worried that as soon as I regained consciousness I would rip the breathing tube out and and have a full blown meltdown. I didn't, I was so drowsy that I just get falling asleep and they took it out without any issues.I had to have 6 months of Clinical Psychologist appointment to be able to go through with the surgery as my anxiety was so bad.
I met the anaesthetist the day before my surgery and asked for a sedative before I was taken to theatre. I didn't want to me awake and in full blown panic mode at that point.
Do your medical team know if your anxieties and fears? If not then make sure that they do.
My Clinical Psych did a care plan for me and the ICU nurses followed that which helped. Unfortunately the nurses on the ward didn't and that wasn't so great but at that stage I was feeling stronger and able to get myself to the day room.
If you aren't already a member of UK Aortic and Heart Defects Pre and Post surgery Facebook group then it's worth joining. I got so much reassurance and help from them both before surgery and since.
Say hi if you join 😊 but if not ask anything else that you need to know. I'm nearly a year post surgery but know what a state I was in this time last year 🥺
Thanks Joanne. I started seeing a Clinical Psychologist when I was initially diagnosed as it was such a blot from the blue that I last saw her before I started my new job six weeks ago. I then had a heart attack 4 weeks ago which made it difficult to get to her as I was on a driving ban and reluctant to take time off work. We had intended to make a care plan but this has all happened so fast there's no time.
Surely most people going into this are pretty terrified?? It'd be a rare specimen rocking up for OHS in a total state of calm. I'm hoping they just keep me drowsy while I need the most care. I'm so worried about being in pain, I have nothing to compare it to and don't know how I'll get comfortable or sleep once home. But I guess it's just a matter of taking it one day at a time?
You've really been through it eh?I had Zoom meetings with my Clinical Psych quite a lot as my hospital anxiety was so bad that I couldn't even stand across the road from it without having a panic attack.
Ask yours if this is possible and there is still time to get a care plan done.
I don't remember being in pain to be honest. Yes I was uncomfortable, but pain, no not really.
I had a full body and v pillow for when I got home, but only use them for about a week or so, as my hospital stay was 3 weeks
I'm 3 months post OHS & you have some good suggestions here but all hospitals differ in their procedures & what they allow & provide.
I had a very reassuring visit to see the ITU before my op so I could see where I was going and what it would be like etc. Tell the staff about your concerns and anxieties and they will help you through them. They are very used to dealing with them. You will need front opening pjs/nightshirt. I managed to buy a nice nightshirt from m&s but failed to notice the buttonholes had metal eyelets, fortunately the radiographer noticed! Front opening clothes, you won't be able to put things over your head. Baggy joggy bottoms, you will gain a lot of weight (retained fluids) plus you will need clothes that are easy to put on with no effort, you will be tired! I was so weak and tired I didn't do anything whilst in hosp, there is so much going on with your treatment/physio etc it's busy and then you fall asleep, again & again. I took a book & never got it out my bag. Pain will be well managed in hosp and they will give you painkillers to take home. A 2m charging cable for hospital, the plugs are a long way away! I didn't wear a bra at all for a couple of months. Vee pillow plus more to sleep upright- I still use my vee pillow as a body pillow to stop me rolling onto my front.
I wrote letters to my sons telling them of my final wishes etc - I actually felt really calmed by doing this & that it was all dealt with had it been required.
Use vaseline on your scar post op - as recommended by my consultant dermatologist.
Also join the f/b group that Rhino67 recommends - brilliant small friendly group where you can ask anything, and get invaluable support & advice from people that have experienced OHS.
Sorry to hear about your heart attack. Apart from that it would appear that you are going down the same path as me, although my op was sudden and I had no time to think about it.
As others have said ear plugs and eye mask are a good idea as it can get a bit noisy during the nighttime. Take a credit or debit card it you want to search the TV they provide (yes you have to pay).
Cant advise about bra's etc, as a bloke didn't have that problem but a pad for the journey home is recommended as the seat belt can rub on the wound.
Most importantly, in my view, is to do exactly what the physio's ask you to do. They will probably try to get you out of bed a day or so after your op. Alosd while your resting do practice the deep breathing exercises they give you, these may be a bit uncomfortable at first but get easier and I found that they really did help.
Anyway good luck and all the best for a speedy recovery
Well, down in London today for the pre-op and as I was signing in at reception the surgeon called me to cancel the operation.They think it would be better to wait until after they have my bloods back to check clotting, and also give my heart time to recover.
Talk about expectation whiplash!
They'll be in touch in due course to tell me next steps. 😔
Turmoil is right! I cried all the way through my pre-op blood tests! And I don't even *want* to be cut open, it's awful, but so is waiting - as so many people on here know only too well.
No-one wants this op but you will feel so much better after it. Join our small friendly f/b group and you will get so much support, advice and information to help. You'd be very welcome.
While this is a bit gross advice I would recommend asking for a pot to spit any plhem you cough up into after your op. From my experience of OHS when you are in recovery you will need to cough to clear your lungs which is painful. It's difficult to get out of bed so you can only swallow the phlem again which then makes you want to cough again. Spitting it out saved me a lot of discomfort.
I hope all goes well and best of luck.
I have an aortic aneurysm which will eventually mean OHS. I belong to an international group and the thing that comes up a lot is that a recliner is much more comfortable than a bed for sleeping in the early days post op.
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