how do you cope with waiting for heart surgery?

[JHeartValve]

I was told I would need a new aortic valve nearly nine months ago. I know it will happen eventually but I’m getting fed up of feeling fairly lousy (I’m in heart failure) and the waiting. How do you keep yourself from getting too miserable? I feel as though my life is on hold as is my family’s.

[Hidden]

I feel for you. The waiting for these thing play on your mind. I have a phone call tomorrow from cardiologist and since they let me know yesterday I have been crying, worried, every combination of thoughts are going through my mind. I don't really know what I want to hear. Had tests and meetings since it all started in February. But what is the next part of the jigsaw? What is the phone call for? I get all upset and this then effects the family. And it just goes around and around. I am having therapy but it takes all my learning and efforts to try and except this new life. I just wish this had not happened, but is that being selfish? It is hard very hard. But there are many people on this forum who have more experience than me and are very helpful. Good luck.

[JHeartValve in reply to Hidden]

I’m sorry 😞. Hoping tomorrow brings a solution, the uncertainty is the worst part. It’s been lovely to share and have some support on here. Let us know how you get on. Good luck

[Hidden in reply to JHeartValve]

thank you. I will see how it goes. It is such a worry. But I have to put trust and faith in the experts. Take care.

[nilmonisikdar40 in reply to Hidden]

I am also in the similar position as you are although in comparison to you my procedure is not as major as yours. However that is not the point. When one is on the other side of psychological barrier, the mind is so much traumatised due to various factors that the mind tends to veer on the negativity. That negativity is either about something that is happening now or others that happened in the recent or remote past. I think talking to a therapist is the best way forward because you got to live on the positive side of psychological barrier for next nine months. Best wishes and will be thinking of you.

[Hidden in reply to nilmonisikdar40]

i would go as far as saying the trauma is similar if not same as ptsd. But not being an expert I don't really know. It is just such a blow to your confidence. You think life is ticking by lovely then bang. It's put on its head. Talking helps but the final solution has to come from within. Hard very hard.

[Rhinos67]

Hi JHeartValve

I had to wait about 7 months for my valve replacement and the anxiety was awful.

Everybody told me that the waiting was the hardest part. I have to disagree as I have a huge phobia of hospitals, so every visit for tests and then the actual stay were so traumatic.

Have you had all of the tests now? If so then somebody should be giving you an update. If in doubt chase it up or ask your GP to do that.

In the meantime maybe consider joining UK Aortic and heart defects pre and Post surgery on Facebook. Everyone in the group has or is going through the journey and they were so supportive during my meltdowns before and after surgery.

Joanne

[Cat04 in reply to Rhinos67]

That is such a friendly & supportive f/b group, I fully endorse your recommendation to join x

[JHeartValve]

hi BeKind28

Thanks for taking the time to reply. The hospital has apologised for the urgent referral taking as long as it did. I have had all the tests now (all delayed by covid for the first time in July), Am told the surgeon hopes to operate this year. I get the delay and understand NHS pressures. Being greatly supported at work but as more and more of my work is taken off me, just adds to feeling of disappearing a bit.

Still onwards and upwards

Thanks

[JHeartValve]

Thanks for the advice Joanne. I’m glad you’re out the other side now, you’ve obviously been really brave. I’m not bothered by the thought of the operation, I’d really obviously prefer not to be in this situation but am grateful there is a solution. Probably just aware of the deterioration and very tired today.

Tomorrow is another day!

[Rhinos67]

I'm definitely not brave but thank you. I had weekly appointments with the an amazing Clinical Psychologist before and after surgery. I've just been discharged today and I'll really miss speaking to her!

I tried meditation too, that was a a bit hit and miss though. When I was at my worst I couldn't switch my mind off.

Obviously wait lists vary around the country, but 9 months is a long time to be in limbo. I hope that you get some information soon

Joanne

[Blackcatsooty]

Dear jheartvlsve

I found the waiting by far the worst part of the experience. So you can look forwards to everything improving.

At one stage my diagnosis got a lot worse and, with hindsight, my life was at risk. Well everything started to move fast. Consultant rang me from home.

Timing could not have been worse. This was April 2020 and the pandemic was raging.

all hospitals were closing.

But I got my op. And I am here to tell the tale.

Perhaps you could prepare for your hospital trip. I bought an iPad and started to learn how to use it. I practised relaxation techniques.

Concentrate on your impending fantastic op that will improve your quality of life a lot

Best wishes

Sooty

[JHeartValve]

thank you! I’m all packed. ready to go. Have even written my Christmas cards as you start to think about the time not driving. Glad your op was a success and thank you for reaching out. I’m very positive normally, just got to me a bit over the past couple of days

[francesw47]

I can imagine that you are feeling anxious. 9 months is a very long time, particularly when you say you are in HF. I also had a very long wait for my second surgery, During that time my health deteriorated significantly. It was pretty grim. I spoke to my GP several times during the wait - he was really helpful and the last time I saw him he contacted the hospital to say that he was concerned. Have you a supportive GP? Might be worth going to see them (if they are doing f2f appointments) and I also phoned the waiting list manager who was also pretty helpful. The waiting list is based on several different factors, but clinical need is top of that list.

I did do everything I could to distract myself. I worked until about 2 months before surgery - but did have to give in in the end and stop. I walked as much as I could and got everything ready - and watched an awful lot of day time TV!

Please let us know how you are getting on and once you have that magic date, let us know. Thinking of you.

[Hidden]

Dear JHeartValve,

Please let me first send you a warm welcome to the forum and the hope that it will support you during your heart journey as it has me and many others.

What a great first question to ask, its about you and the way this diagnosis is effecting both you and your loved ones.

I think that is is good that you are recognising this early into your treatment as this will be the backbone to how your recovery will go { mentally more than physically } and it is important to know how your loved ones are coping as well as yourself.

Brilliant words " I feel that my life is on hold as is my families " as this is exactly what is happening and it will be very stop and start as your journey progresses , some loved ones want to know the ins and outs of every stage of this journey while others need very little information, that is your balancing game.

At the moment just go with the flow, find out { if that is your thing } everything about what is going to happen during your treatment or not, I think what Im trying to say is that its up to you how involved you want to be { with me it helped to pass that waiting time } above all grab hold of your loved ones and reassure them that they are loved { as is you }

Boredom ? on hold? fear? apprehension ? are all apart of the journey, soon you will be through it all and then will see the benefits hopefully of that journey and how it will give your new life the longevity that the old one may not have held.

You are not alone and never will be, like your loved ones we are also here for you.

Take care

[Larneybuds in reply to Hidden]

great reply and o true 😀

[Laguna23]

Morning JHeartValve

I am waiting on my mitral valve surgery and I have absolutely been in the same place as you. Anxiety, insomnia etc etc you know the story. I have counteracted this as best I can with daily meditations. I appreciate this is not for everyone but it has helped me stay calmer. I still have good days and some not so good days. I have been reassured by so many positive people on this forum that the waiting is the worst bit. I do not have any fears of tests or hospitals so I have only had good experiences so far. The biggest issue is the waiting between each test to get the results back before moving forward and nearer to get your op and date for that. Stay as positive as you can, our minds and thoughts can either give us a very bad day or a very good day. I know that sounds very simplified but it’s true. Take care I’m sending you lots of good thoughts, you will come out the other side of this and then you and your family can get on with living your life. ❤️

[colourblue]

Hello, I can't add anymore to all the wonderful advice you have been given, there are some lovely caring people on this forum. Just want to say I so understand how you are feeling, I am one of the worst worriers, imagination runs away with us doesn't it? Sending heartfelt wishes that you soon get your op. By the way, my Father had his main Aortic valve replaced back in the late 60's, it gave him a new lease of life.

[ronnyharry]

I would make a big fuss, something dramatic. I spent ages at a critical stage uncared for so I was forced to take the private option, thanks to my wife's fortitude and forward planning, my surgeon told me I was extremely lucky and could have been dead in a couple of days. Don't delay and do not be shy, you have paid for the care up front and the surgeon who should operate on you with NHS is probably freelancing so hasn't got time for NHS. All the best, make some noise.

[spinningjenny in reply to ronnyharry]

Not all doctors freelance. My father was a surgeon and was paid 2/3 salary by the NHS, the rest he made up with private patients. The ones I have a beef with are GPs who take early retirement on a full pension then work as Locums for £600 a day at our expense.

[Cat04]

Have you tried contacting your surgeon's medical secretary to see where you are on the list and how much longer you may have to wait. Or the hospital's appointment office -they can tell you routine/urgent waiting times, when you will be offered an appt etc etc. If you know how long the wait may be, it lowers the anxiety of waiting every day for that letter/phone call.

I only started my surgery journey 4 weeks ago, the hosp appt office said I should be offered my next appt by "end November". So at least I have a time scale to follow 🤞.I shall be back on the phone Dec 1st if not!

Other than that, I find distraction the best way of not dwelling on it all but this is not easy when you are so restricted by symptoms.

Best wishes x

[spinningjenny]

I know exactly how you feel. I had mitral and tricuspid valves repaired four years ago and spent a lot of time during the night listening to mindfulness stuff on my iPod. It helped a bit. I’m going through it again now waiting for kidney surgery (one to be removed the other to be replumbed) which, fingers crossed will happen next Wednesday. Like you, life has been “on hold” waiting for a date.

Pester power may not really help but it makes you feel you’re doing something. Phone admissions from time to time and see where you are on the list.

You can’t plan anything far ahead in case it needs to be cancelled but you can plan weekend activities. It gives you something to look forward to and helps to take your mind off things.

Hope all goes well and that you hear from the hospital soon.

[Beardie100]

my advices is to focus on your recovery. Use to time to make your recovery as easy as possible and achieve the outcomes for you.

[gorillaqueen]

Hi this must be awful for you and I fully understand how hard it can be. I’m having my surgery next week 4th of November but have not waited as long as you. I sincerely hope you hear very soon , good luck and very best wishes X.

[Brolly12]

Hang on in there, you are one day closer than yesterday. For me the worst bit was the waiting, Try everything to take your mind off it, friends, box sets, facebk !!!? Try and focus on the future and all the things you want to do when you have recovered. We are so fortunate that our hearts can be operated on and given a second chance - many illnesses do not have this hope. I know it’s hard and I really feel for you. You can do this ❤️we are all testimony, that things get better for you

[Hidden]

here we go as promised. Had my phone consultation after I was discussed at the Mtd meeting with Guys hospital and other experts. Feeling better. I know my situation is a rare occurance. But basically. I will not have an operation on the right side, too risky. See it is complicated as the left side is in reasonable order and I have no electrical issues which can occur with epsteins anomoly. However right inside is impaired but to be cut about on right side can cause more issues. So the situation will be conservatively looked after with tablets. Considering I was born with the problem and got this far then it is down to me and the cardiologists to keep what I have working. So the one thing I need to do is drink more water. At least 1.5 litres a day. Need to clean my teeth which everyone needs to do. to stop infections in the heart. Regular dental check ups. . Just be careful on exercise but e.g try not to run a marathon. But just keep walking and doing normal stuff. So now I have had in some respects good news. I need to just learn a new way of living. And exceptance in my head. I suppose that is the challenge exceptance. And learning to live with it and be careful. But the feeling of being a broken toy can raise its ugly head. I feel for any one who has any form of disability,

[JHeartValve in reply to Hidden]

was thinking about you! Glad you’ve not got to have surgery but I’m sure you have mixed feelings that you’ve got some going of bits and sone bits that work less well. Fingers crossed the tablets work well. Take care and enjoy getting on with your life x

[Hidden in reply to JHeartValve]

yes weird really. When she said no operation I was relieved. But then I have got to ensure I look after what I have. But she said enjoy life I will do the worrying. She is nice. And has an interest in it

[E16Pat]

Hi jHeartValve

I’m waiting for heart by pass surgery they said it would be done before Christmas I know the anxiety and worry it terrible, I share your anxiety

I do hope you get this done as as possible

Stay strong

[ParrotLover22]

Hello JHeartValve. When I was due to have my Op to replace two Valves, it was Cancelled because of C.... !! I had it 8 months later and only had it then because it was classed as Severe!! The Waiting Time is a pretty anxious time to say the least. I was a 'Nervous Wreck'! Cutting a long Story short, my Doctor prescribed me 2mg Diazepam to take as and when needed! They really helped. Before that, that's ALL I could thing about was the Op!! You will be OK and you will get through it. Look after yourself

[Pilgrim2]

Hello JHeartValve,

i was diagnosed in Feb and just got given an Op date for Nov. The waiting game is tough as everyone says, particularly when you have a bad day. Many good suggestions above for taking your mind off it. Also when feeling down do remember it is fully fixable, it's a great op that can put you completely back to normal once recovered. Hand in there, once you have a date your mind starts clearing and it's all focus on preparing for that day, the first day of the rest of your life! If you do feel it's getting bad, do speak to your GP/Consultant they will try and help.

Best of luck and I'm sure they will be giving you that date soon

[dierama]

Hi, uncertainty is a tough one and yet we live with uncertainty day in, day out. we just don't know do we? Is this the day I win the lottery, the day I have an accident, the day I have my op. And yet we live and maybe that is the key, acknowledge and appreciate each day no matter how difficult. Notice those little things, the colours of nature, birdsong, child chatter. Good Luck, thoughts with you.

[BlueBearBob]

When you know what is wrong and what the treatment is the waiting becomes particularly frustrating. I first saw my GP on 1st Feb as I was suffering from palpitations. Eventually on 11th August a cardiologist referred me to Barts for a minimally invasive Mitral valve repair. Currently my provisional date for the op is Jan 3rd. So I've only been waiting for the op for less than 2 months; 9 months must leave you so frustrated! Definitely worth contacting the hospital to get an idea of the likely date as that at least gives some kind of target. Fingers crossed for you.

Bob