Hi everyone I’m learning to know what I can and can’t do Yesterday I did my first walk down the corridor pushing a wheelchair for support then I went to the loo then the nurse said I should walk back unaided and she would follow me with the chair which I did . I felt very nervous about doing it unaided but did it anyway I was walking like a 95 year old very dodery very slow and a little hunched over but I did it and you realise that’s all that matters. I’m in a room with my new best buddy Sam ( Samantha ) who went through the same operation on the Monday but had to go back into theatre on the Tuesday straight from recovery as all here vitals crashed but they sorted her out and she ended up in HDU on the Wednesday the day before me . She’s only in her early 30s and she had to be connected to a pacing machine as her own internal pacing system on her heart hadn’t kicked back in after the operation . This is very common and everyone is automatically fitted with pacing wires just in case this happens . I had pacing wires fitted but they were never needed as my own pacing system kicked back in straight away. You will see or be one of loads of people walking round with little transformers this is precautionary and is only giving the body time to kick things back in so don’t be alarmed if you are one of these. I’ve completely gone off my food I think I’m hungry and then it arrives and a couple of mouthfuls in you don’t want it both me and Sam are the same I think we will feel better when we’ve opened our bowels which hasn’t happened yet we both have bad wind and really have to laugh and joke about it to stop it being embarrassing. Privacy is limited and you hear everything the doctors and nurses say about the other person in the room and therefore they hear everything that is being said about you. We do a lot of talking helping and supporting each other’s setbacks mine has been low blood pressure and Sam”s has been her internal pacing system we have said we are so close we are like a married couple “without the benefits” and do you know what I couldn’t have wished to share this journey with anyone more sweet and caring . We are both on Oxicodon for the pain which is an opiate and it works immediately there’s a rush to the head followed by a calmness but also you can have ilusinations which we’ve both had. My first one was I thought I was laid on by back lawn in the sunshine and one of my dogs was licking my neck and I was dozing but then I woke up and turned around and it was the nurse taking some blood from my neck which shocked me. I told both my nurse and Sam and we all had a good laugh. So don’t be worried about illusinating it will happen and concern you but remember you using very strong painkillers to get you through.. had my first bowel movement today and wanted to celebrate the fact but I decided to ignore it as I knew Sam was getting very anxious about her laxatives not working so me and the nurse kept it to ourselves. Your probably sat there thinking why would you want to celebrate that anyway believe me after not pooing for 5 days you do.
I’ve just been told ( Sunday lunchtime ) I’ve been discharged from HDU but as yet there are no beds available so I’ll stay on HDU for now which I’m really pleased with as it feels like I’m also on Sam’s journey as well as my own . Unfortunately Sam’s internal pacing system hasn’t kicked back in and it’s looking more like she will have to have a permanent pacemaker fitted to keep her heart working which is fissapointing to say the least and very frustrating for her being so young. There have been lots of tears from both of us mainly Sam I’m just hoping and praying it changes soon as they only usually give it a week to 10 days to rectify itself. I had my first visitors from back in Yorkshire on Sunday my Sister and my Sister-in-law it was so great to see them and even though I had wires and tubes all over they needed to see I was doing ok.
It’s now 12pm on Monday 10th September and they’ve got me a bed back on doulton ward so I’m going there it’s quite an emotional wrench as Sam and I have created a very strong bond and I’ll miss this greatly. So I’m back in a four bed bay all men, one guy like me has had his operation and then just has a pacemaker fitted as his heart didn’t regain its own system back he’s been in hospital for about a month then two other guys who have just been checked in for thier ops tomorrow I’ve just been told I’m being discharged from hospital on Wednesday to go to my convalescent Home on the south coast ( Rustington ) to carry on my recouperation I’ve been in hospital for one week exactly but it seems a lot longer. I’ve met some nice people made some new friends and been given a first class Service . The nursing staff throughout have been amazing the quality of care has been outstanding I cannot fault my surgeons work all I need to get is the result of the biopsy they took from a growth on my thymus gland which is directly under your breast bone that’s not available yet probably not till next week I just want to hear the words “ Non Malgnent “
I’m signing out now wishing everyone of you hearties out there lots of love and digital hugs I hope me explaining my journey is in some way helping others to understand what theirs might be like
Pete ❤️❤️
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What a brilliant post Pete very thorough and so informative and supportive for those waiting for the operation. Glad the laxatives worked! Enjoy the seaside I hop it’s warmer there than up here in the frozen and wet North! Stay strong and focused. Sending love and hugs. Zena xx
Great post Pete and take care of yourself, so glad all has gone well. keep us updated on your recuperation at Rustington just hope the weather behaves itself.
Hi Pete, I came round early Thursday and was back on the ward Saturday. Also walked to the loo (wide window sills to hand) a few times that day ( diuretic for electrolyte imbalance). However, we are all different and they were very keen to get me moving because of the PAD. Lack of appetite and constipation all familiar issues but they sort themselves out. Crossing my fingers it is non-malignant. Cheers, Michael...
You are a star! You have helped so many of us who are still waiting and wondering what it will be like! I’m so happy you’re on the mend - I’m sure your positive attitude has s lot to do with it! Xx
Thanks Allison I spoke to Amanda yesterday she said she’d seen you over the weekend . Thanks for your comments regarding my posts I really appreciate it . They are checking with Rustington now to see if they can accept me today if they can I’ll be discharged and starting the second phase of my recovery
That’s great news! Just think what a difference a week has made in your life!
If you get bored In Rustington give me a shout it’s not far from me!! Xx
Hi great posts, reading them makes me so thankful for our NHS, I did giggle about the docs discussing everything behind the curtains, like the rest of the patients are deaf or it is a brick wall , on my cardiac ward my fellow patients were having there bowel movements and sex lives spoke about and obviously they heard all about mine, oh dear 😂 , it did give us a laugh, the joys lol, wishing you a speedy recovery take care char xx
Hi Rugbymad its good to hear you awaiting a date it will be here before you know it and remember no two peoples journeys are the same so enjoy yours as it unfolds
Hi Pete, Good post, so pleased your getting to grips with things. I was constipated for 5 days, what a relief when you eventually do the business. Enjoy your stay at Rustington. Don't worry about your biopsy, just concentrate on getting well. Look forward to your posts. Andy
Brilliant post can't believe you are being discharged already well done and stay strong...Im getting more tired and feel like my batteries are running on empty, although I know I will be better after the op I am dreading it, your posts are helping enormously so keep it up please.
Hi ticktock what a journey. I hope you realise the impact your posts are having on those waiting on or are going through your journey. Keep them coming and keep the faith my friend were all rooting for you. Shiona
I was so pleased to have managed my first poo that I actually hi-fived a nurse on my triumphant way back along the corridor to my bed. Looking back, it was an important milestone in my recovery process!
One of the guys in my bay on Doulton ward became a very good friend very quickly. We shared each other's fears and triumphs. We supported each other in times of need. We have since met socially and intend to keep in touch. We do after all share something very important in common. I hope you intend to keep informed of Sam's progress.
I'd like to share a little something with you about your impending discharge. Rather than a reason to celebrate, my experience was some patients struggled a little with it, including me! The realisation swept over me that all of a sudden instead of being surrounded by dozens of healthcare professionals I was now back out in the big world. Of course people at home helped me put on my socks and gently levered me in and out of bed but boy was it frustrating!! Frustrating that I couldn't even lift a kettle nor cook myself anything. Worse was the feeling of loneliness in the middle of the night. No handy nurse to come by and give you a little reassurance. So be prepared for that Pete. Phase two of your recovery will begin at your convalescent home and in that respect you are lucky to have a more cushioned re-entry to normal life and I wish you well.
I’m sat here at 3.45am replying to you as I’m in agony St Thomas have only supplied me with Paracetamol as my main pain killer and this is not working I need something stronger so will need to get a doctor to prescribe something tomorrow as I can’t have another night like this I’m pacing up and down like a caged animal
I found paracetamol as effective as Smarties when I was dropped to them two days before discharge. The next day it felt as if the vampire hunters were after me with a wooden stake! I was discharged with tramadol which I reduced to zero over the following two weeks.
I am back on them now for coccygodynia after falling last week!
Sorry you are in so much pain post op, the medics will sort you out! I was in St Thomas' 12 weeks ago for spot of elective OHS for a new aortic valve to replace my old stenosis riddled bicuspid one and to replace my dilated asending arorta. On the pain front I guess I was luckly as after the initial drip fed fentanyl for 24 hrs post op, parcetamol for the next couple of days did the trick. I knocked them on the head as soon as I got home and yes there was skelatal discomfort ( sharp stabbing pains for time to time as the nerves wake up and the healing process kicks into action etc) which I am advised is routine. These vanished after a few weeks. Everyones different and you like the rest of us will heal. After my 6 week check up (and discharge) I fundementaly never think about my surgery, unless someone asks me about it. After leaving hospital after a week I took the decision ( boredom led) to go straight back to my normal daily routine, (modified for no lifting and the odd nap). It has worked for me !!
Good luck with everything Pete and I'll echo all the comments how really really valuable your posts have been. Hope the painkillers situation gets sorted for you as that doesn't sound like fun. Keep updating if you feel up to it but most of all I just hope you keep improving each day. Best of luck mate. Nic
Brilliant Pete, you have really made me smile whilst on my way to Pre op in London! Wish I had someone like you to amuse me and keep the encouragement up! Well done and keep up dated!
A really fantastic post. Wish I could have read it before my surgery. I was ventilated for eight days after my valve replacement and hallucinated whilst on the ventilator.
The upside of that was no actual pain just discomfort. I had paracetamol which must have worked.
The major downside was not being able to walk or eat properly when I did come round.
Pleased you got proper convelescence. I was just sent home for my husband to care for me.
I had loads of help from family and friends fortunately
Thanks for your reply sorry you were on ventilator for so long
I wasn’t sent for convalescence I decided to go for convalescence as I live on my own as just finalised a divorce and I’m not allowed to be on my own at the moment but it’s worth the money I’m spending as I’m sure you all agree on a list of priorities your health has to be number 1
Thanks for your brilliant post Pete and I hope the transfer to the south coast goes well today. I was wondering if you chose your surgeon/hospital (patient choice) or if your cardiologist referred you? IThanks and looking forward to your next post
I chose my consultant after hours and hours of research but he could only see me as a second opinion if I got a gp referral which I did after firstly being refused but I’m nothing if not persistent and fortunately for me the surgeon agreed to perform my procedure which I will be eternally grat3ful for
I didn't think the nhs provided further care in a Convalescent home, a great idea though. Good to read your story about op and hope the recovery is going well
Ah right - that's a really good idea. I don't think there are that many Convalescent homes now. I remember early 1950's my dad went to one after hernia operation. Hope your recovery continues to go well
Hi Pete, glad you are doing well and thanks for the update. I just want to reassure everyone waiting for the op that it isn't nearly as bad as they imagine. Everyone is different, and their experience might be like my own, in that I was operated on on the Friday afternoon, I came out of the high dependency on Saturday afternoon, I was walking unaided to the loo on the Sunday (albeit gingerly and carrying various drains). I had no bowel issues (make sure you drink plenty of water). The only pain relief I needed after day 1 was paracetamol, I refused the stronger stuff because it just knocked me out.
I came home on the Wednesday. Now, 10 months later, I feel well, but I still take things easy after a busy day. I can swim 20 lengths and walk 6 or 7 miles (mostly on the flat). So all in all a positive outcome. I take a daily dissoluble aspirin and daily 5mg Amlopodine to lower my BP.
So, onwards and upwards, good luck to everyone waiting for their op. Keep a positive attitude, do as you are advised and take part in the Cardiac rehab when offered.
It was definitely open heart surgery, but having said that, my scar is only about 4" long, whereas a lot of people have a large scar right down to their abdomen. I had a tissue valve (cow) and they don't last forever, perhaps only 10 to 15 years, but the surgeon said that the next time it needs replacing or repairing it would most likely be through the ribs rather than OHS. The technology is improving all the time. Good luck.
Many thanks for your reply. That’s interesting as some surgeons seem to also perform this surgery through a smaller sternotomy as in your case. I guess it depends on your individual situation. As you say, no doubt minimally invasive through the ribs is the way forward and more will be done that way within the next decade or so. It was good to hear of your relatively fast recovery 👍😊
Nice one Pete, after all the anxiety you are now well on the way to recovery. I had no issues going to the loo, just the opposite I couldn't stop going for two days 😂. I was lucky as I had no morphine in hospital only pain killers. 6 weeks on Friday since my operation and I'm walking 2 miles a day, I have my 6 week review next week. The time has flown by. Enjoy your convalecense Pete and I'm so pleased you have got through this . Good luck with the biopsy, keep positive and it will be ok .
Look at you walking and writing. I could barely write a few sentences a week later, I’m 4 weeks tomorrow and just starting to joggle blog postings. The walking became a right after day 3 for me, and on my own day 5. Was going insane.
I'm so pleased to hear about your journey again! Fantastic news and so pleased for you. I will follow your every move! I'm meeting with my surgeon next Wednesday at the Brompton so all and any information makes me feel less alone! thank you. Yourself and BigT have been an inspiration. You may well have inspired me to write separately!
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