Really Scared about TKR!

jojo03

Hello All

I don't visit the forum very often, but know from past experience that it's the best place to come for advice and support. I hope someone out there will be able to help.
I've had RA for 25 years, and despite being told in my early 20's (I'm now 43) that I should have a knee replacement, I have determinedly hung on, not wanting to have the op. My knees have got worse over the last 6 months though, and I had an appointment yesterday to see a surgeon, who advised me that both knees need replacing, as there is lots of damage which no amount of tablets or exercise will help.
I am really scared at the thought of going into hospital, and especially of the op itself. I don't know yet whether I'll be having the two knees done together, or one at a time, but either way, I feel as if I can't go through with it, I'm that worried.
My family and friends keep telling me how much better I'll feel once I've got new knees and yes, I really think I will, but at the moment I just feel panicky and filled with fear. I've had a booklet from the hospital with lots of info about before and after the op, but it also has all the risks such as blood clots, etc - which hasn't helped!
Has anyone else had this fear before an op, and if so, do you have any good tips for calming down and getting through it.
Sorry if I sound like a baby, I'm usually quite a determined person, but this has really given me the collywobbles!

Thanks,
Jo x.

julie47

Hi jo
Sorry that it has now come the time where you need both knees replacing. No one likes surgery and I am one of the ones who would also put it off .
I will be having 2 opps sometime after april. (neck fusion) and I can tell you I am probably feeling the same as you. (scared)
I know it will be for the best for me, and I am sure the tkr opps for you will make a massive difference for you. (hey you may be able to do a marathon )
I have had RA for 23 years and will be 48 (oooh ek in 2 weeks time).
I think they will do one knee at a time and let you recover for quite a while before doing your other.
Any way I wish youu luck
and take care
Juliepf x

stickywicket

Hi jojo03,

It’s perfectly rational to fear going into hospital (Is it your first time?), having an anaesthetic and then have someone take bits out of you and put other bits in. As a veteran of 3 knees (I had one TKR replaced 2 years ago: it’s partner in crime is still doing a job for me 30 yrs after insertion) and 2 hips I know it’s a scary thought.

Focusing on the end result is good (It’s an extremely successful op) but maybe you need to deal with your fears first. Try to work out exactly what you’re worried about. eg If it’s your first ever time in hospital you need to have some idea what to expect. You mention blood clots but most people don’t get them, the hospital will automatically take steps to prevent them happening and also exercising (You’ll be given them!) will help avoid them. In the very unlikely event of your getting one, you’re in the right place to have it dealt with immediately.

I always avoid TV hospital programmes beforehand as they could scare the living daylights out of you if you believed them to be realistic (They’re not. Even the factual ones are going for drama over routine.) and take as much control as possible by making sure I give accurate info about my meds, past medical history etc etc. Then I tune in to some relaxing music and wait for them to get on with it and the magic words “Wake up. It’s all over.”

If there’s any specific aspects of it all that worry you, do get back to us. Someone on here’s bound to be able to help.

Airwave!

All sounds perfectly natural, just remember, you have a condition, a diagnosis and treatment awaiting you, so, no problem!

Handing your life over to another person is not the most liked thing, but better to hand it over to a professional team that have done loads of ops and trained for it than anybody else?

Think of all the good things when you're healed, a walk to the pub, along the beach, a swim, come on, I'm sure you can add a few things!

8) Its a grin, honest!

dachshund

Hi Jo.
dont worry i had a tkr 5 years a go i had pain down my calf and could not put my foot on the ground i was offered a tkr.
i had a epidural it all seemed quick.
the next day i got out of bed and started to walk with a zimmer frame i cannot remember how long i was in hospital
just think less pain its worth it.
joan xx

dreamdaisy

Of course you are apprehensive, but yes, think of the benefits. It's not a case of some bloke, in his garage with a Black and Decker etc, you will be under the care of an experienced surgeon who knows his stuff, a wonderful anaesthetist (the true heroes, I think) and surely you can opt for a GA so you will be blissfully unaware of exactly what is going on. Yes, there will be discomfort, inconvenience and possibly a longer recovery time than one might expect, but there again there might not, it could equally well all go swimmingly. It may not solve all your problems but it sure as hell will solve a very high percentage of them. There are those who need this op and are denied on the spurious grounds of youth - take the offer, I think you will marvel at the difference it will make to your life. I wish you well. DD

jojo03

Thanks to all of you for your replies! I think the advice on this forum is the best, because it's all given by people who know what you're going through.

I hope your op goes well Julie, it's really good that you're focusing on the positive outcome, even though you feel scared too. I'm glad it's not just me!

It's not my first time in hospital, stickywicket, but I've only been in for physio stints before (two three-week stays, home at weekends) so I could cope with that, knowing there was no op involved! I think I'm just worried about the things they put in you beforehand, the op itself, and the risks that go with it.
And I'll definitely be giving the medical tv programmes a miss!

I feel angry with myself for being so worried when I know, as most have you have said here, that it will be worth it after it's done.

Thanks again for all your comments, they're much appreciated.
xx

barbara12

Hi Jo
I really do feel for you, and know some of what you are going through, I am going through this with my hips....I am terrified...but today made the decision to have them done...only to find they have a waiting list of at least 8 months....so please get on the list...and I wish you well with it.
Love
Barbara x

suegibb

Hi
I know exactly how you feel --see my thread "partial knee replacement"--I too am scared but wish I was haveing a tkr tomorrow. It's just making the descision to say "yes, do it " which I have done before and then changed my mind.
What I haven't said to anyone is that I am a qualified nurse, retired admittedly because of OA, but I too worry about being a patient. I never knew a patient in my care who had a problem post tkr-- yet still I worry.
When I had my previous partial knee, I felt the care I got (royal orthopaedic hosp, Birmingham ) was very good and I felt they really cared about how I was feeling all the way through. I tried to be pleasant to the nurses as i knew what it was like from the other side!
Please don't feel you shouldn't be scared--it is perfectly normal.
I keep thinking- imagine the weeks after-let the family look after me for a change-!!! catch up on all the dvd's, books, magazines, my miniatures hobby, my family history hobby, etc, all the things I never have time for. Sit and chill without feeling guilty. It's not long till you are back running after the family again.
And of course no pain ! No constant pain killers!!
I think you've talked me into the op............. Shall we try and go together??
Love and many hugs to you
Sue xXXXXxxxxxXXXXXxxxxx

skezier

Hi Jo,

I think its normal to have some fears about these things, well any op really. I haven't had joints replaced only made good or removed all together so can't help with the actual tkr.

i just wonder if we could help with whats really got you scared? is it the op, the outcome, the stay in hospital, the recovery or the anesthetic? I just think maybe you need to find out what it is that's got you so sacred and hopefully get a bit of help whether via your gp or even here. With luck you will see that the fear doesn't need to be so big?

I hope that makes some kind of sense and also that it will somehow help you cus it does sound like the knees are impacting so badly on your life that its time they were done. I so wish i knew a way to make you feel better about it all.

Could you make a double appointment and talk it through with your gfp maybe? Jo i so wish i could help you but hang in there and your family is right you will be ok. A ((( ))) Cris x

julie47

hi jo
hope you are not feeling too bad today
take care
juliepf xx

traluvie

Hi Jo,

I understand how you are scared of having an op..
I have had over 20 ops and i'm 31... so to me they are the norm, but for others it can be a really scary experience...
Now adays you can have people waiting with you before you go down to the theatre(that stops you thinking things over in your head) and in some instances when people are really scared they will let the person with you walk down to theatre..
When you go to your pre op if you ring beforehand and explain how you are feeling they can arrange to show you around ie your ward, waiting area and down to theatre... this is only done in rare cases though casue of cross infection.. Just thought i would mention it incase it can be done at your local hospital..
I am sure you will find the doctors and nurses great and if they are aware of how you are feeling they will be extra nice..lol
I don't know much about the ops, i have worked on the ward in my local hospital where they have the knee ops and i can say they they are all smiling the next day thinking about dancing round there handbags lol..
Feel free to Pm if you want to ask anything..
Thinking of you..

stickywicket

jojo03 wrote:

I think I'm just worried about the things they put in you beforehand, the op itself, and the risks that go with it.

They don't actually put much in you beforehand, jojo03. They'll check out your heart, BP & temperature, none of which are invasive, take some blood and get a line in. If your not used to the last two they may seem a bit off-putting but the more you can relax the less you'll notice. (I know that's much easier said than done.) Mind you, if they didn't knock you out beforehand - that would be really scarey!

The op itself is a safe, routine one and you'll almost certainly be out of bed next day and getting cheered on by the rest of the ward. I'm sure you and suegibb (Ah, you nurses are the worst when it comes to ops!) will be running round like spring chickens in a couple of months.

Keep in touch.

zechariah

Hi,
I was just about to turn 43 when I had my left knee replaced, I too was scared silly about the thought of the surgery.

However it wasnt as bad as I had thought it would be, I went down to theatre at 1.30 on the friday and I was home by 1.30 on the monday, I expected and feared that I would wake up and be in so much pain, but the pain was okay and the staff were amazing!

As soon as you can start pushing that knee down into the bed to get it working and as much as the bandages will aloow do a very tiny bend, I am sure it was the fact that I did that straight away, that allowed me to escape back home so quick!

Good luck and keep us posted

Zec

lindalegs

Hi Jojo,

I had both my knees replaced at the same time just over 10 years ago. I was at the point where I didn't want to go on so I suppose I wasn't as frightened as some are about the operation itself.

Maybe you could talk to the anaesthetist, who'll you'll meet at your pre-op assessment, about having some mild sedation before the operation.

The other thing to remember is that you're the one in control and explore/discuss with your surgeon all your fears and then when you have all the facts you can decide whether you want this surgery or not, they won't force you into it.

Hope this helps.

elnafinn

Hi Jo,

I can understand that you are nervous about the knee operation. Thankfully, I was not, well not overly, I defy anyone to say that they have no fears at all before the op. After all it is the unknown and however much trust we put in our surgeon and even if his percentage of successes are practically 100% and that is all he is doing, day in and day out, there is always that half of a percentage chance that things do not go to well, isn't there.

I have a friend who was terrified to have an anaesthetic because she felt she may not wake up from it. You do not have this fear do you? You are young so I am sure there will be no complications as long as you do as you are told and get good physio post op and religously do the exercises given, boring though it is sometimes. It is easy for others to say it will be ok expecially if they have not had a TKR! It was not a breeze for me but I had both done two years apart so I was not put off at all and all is good and I am so happy that I had them done. Precautions are taken regarding blood clots both in hospital and often when you return home so I would not worry about that. I had to wear those lovely stocking thingys for a good few weeks and also had to self inject daily for 2 weeks - all to prevent blood clots. Some surgeons deem this necessary others do not.

I wish you well with it all and please do not hesitate to ask any questions that you may have. Quite a few of us on the forum have "new knees".

Luv
Elna x

jojo03

To everyone who has replied to me on here - THANK YOU so much, your responses have been so kind, and they really have made me feel better! Yes, I'm still scared, but now I know it's natural to feel that way, and talking to people who have been through it (or who are also waiting to go through it) has "normalised" it a bit!

Julie, Barbara and Sue - good luck to you also with your future ops - and yes Sue, it would be great if we could go together, although it might turn into a competition to see who could be most nervous!!

Honestly, I'm so grateful to you all, and I'll keep re-reading this thread to see your messages of reassurance. I'll definitely let them know how I feel at my pre-op appointment and maybe they can help a bit too. I'm sure I'm just over-thinking things instead of foscusing on the positives that will come out of it.

Thanks again, big hugs to you all xxxx.

barbara12

Hi Jo
And dont forget we will be here to support you when you have had your op.
Good luck with everything
Barbara x

stickywicket

Tell you what, jojo03, every time you start to worry about it just put 50p into jar then, when you get back home with a nice new knee you can treat yourself to something you like. So, you get to win whether you worry or not.