I'm feeling down. My first knee replacement seems fine, but I now have to wait my turn for the second in order to be able to function properly. I can still hardly walk, cant really function on my own and have to rely on my long suffering partner. Normally I can cope with this all, waiting too for the rituximab, but someone close to me has private medical insurance (through their partner's business interests) and has had a very quick joint replacement - took them a month to get seen to. And they're now leaning on me for sympathy because of the pain. Which I'm in an awful lot of the time but prefer to keep quiet about.

I just resent the inequality involved in the public/ private health care systems we have. Its not easy knowing that there's a queue for treatment that some of us need urgently. It might not be life and death but the slow dripping away of one's life.

Sorry to dump all this on a dark January afternoon! I'm sure that I'll cheer up a bit later.

24 Replies

  • Sorry to hear you're feeling down and sending good vibes to you! Let's hope the sun comes out again, always helps me to feel more positive.

  • Thankyou. A friend came to visit which cheered me up a bit. A considerate person who didnt want to tire me out. I think you need to have had illnesses to be able to do that sort of thing.

  • I don't know about cheering up too quickly .... 'cos sometimes a bit of anger and teary self-pity needs to come out before we can truly pick ourselves up again. Or at least that's my story & I'm sticking to it!

    I think the whole process of joint surgery, including waiting for and recovering from it is the pits. I had a fairly complex bunion surgery a year or so before PsA hit me and I did not cope in style. Crawling from the kitchen to the living room pushing a cup of tea & a plate of toast before me had a certain novelty first time around, after that ..... well! I read some very thick books that I wouldn't normally touch with a barge pole and was considering moving on to the telephone directory. Boredom and frustration reigned. Knee surgery's harder still, I realise that.

    And yes, it ain't fair! Not fair at all.

    Yes, after a while you'll cheer up and come up with some creative ways to handle waiting. But oh my, it's so hard on you. Any idea when it will happen?

  • We have to get the rheumy and the knee surgeon to come together and synchronize my rituximab with the knee op. You have to leave two months after the ritux before you have a planned op. At the moment, I'm due to have the infusion in March so we're looking at May.

    I didnt find the recovery too bad, at least this time, the new knee feels much steadier and stronger but the old one hurts like anything. Have you tried reading War and Peace? I'm thinking about it because once I've seen the telly version I should be able to follow the complicated character list.

  • I'd imagine that the contrast between the 'old' and 'new' knees is quite an odd thing to handle because you've got that constant awareness of how things could be if only they'd get a move on.

    I think I may have tried reading War and Peace many years ago. I bet sales of the book have soared since the TV series. It is necessarily the potted version isn't it? For example, I can't understand why Natasha (I think that's her name) went wild & crazy almost overnight. So I might get the book from the library just to see if her inner life gets any attention rather than just her frocks and her looks.

  • Yes, my penguin edition is in three quite bulky volumes.

    I think there's a lot more ruminations about the state of the peasants etc.

    You're right, the new knee is fine, though I still do the straightening and flexing exercises. But I'm still virtually housebound except for trips I do with my husband. And I know that there are complicated reasons why I can't have my knee tomorrow!

  • I prefer the peasant side of things. Just read Zola's 'Germinal' which is awesome. Brain fog aside, I do realise this isn't a literary criticism site but I guess if you've got a bit of waiting to do a recommendation might not be unwelcome!

    You won't know yourself a while after May or so, it'll be wonderful! Here's to a much less tedious summer / autumn on the horizon!

  • Zolas amazing I should read him more thoroughly. I've just ordered the Russian version of war and peace on DVD after reading about Russian reactions to the current BBC version.

    I have found quite a lot to occupy myself during my wait like you say, and just today had a 1:1 crit with my art teacher who is also a good friend. It helps when someone takes you seriously!

  • I understand why you consider it unfair..... the pain, the waiting, then a less than considerate friend who's job's done & speedily leans on you. Enough to make anyone feel down given your position.

    We had private insurance when we first moved abroad, no job & uncertain whether we'd come home after 6 months but didn't need it once. Then fortunately the first position he applied for my h got a very well paid position, something he knew nothing about & not qualified for but they liked the cut of his jib. We received our SIP cards (healthcare ID card), private insurance was cancelled as he settled in the job then not long later I ruptured my Achilles tendon. Damn, what bad timing we thought, couldn't have been more wrong, brilliant treatment then & when I was diagnosed. Minor I know but not a long wait for small ops both for my h & me either. We were warned about the change in the NHS from when we left to when we needed to return home but what a change. No sense of urgency so I appreciate the way you feel about the wait in a way. I've not gone private in the UK since the 1990's but even then it was sort of forced up on us & totally get why so many pay to see a private Rheumy initially. Fortunately the one time we've needed a major op on the NHS it was urgent & we have a Cardiology Centre of Excellence on our doorstep but I cringe thinking if or when the time comes I need joint replacements. I'm just hoping that a speedy diagnosis & being brought under control quickly has saved me from that for a few years but how will the land lie then?

    Gone off on one a bit Cathie sorry but you have my sympathy.

  • I know just how you feel, I'm having a rotten time myself at the moment! Time for a bit of tlc I think, something you wouldn't normally do......a little extravagance......with no guilt afterwards.

    I have resorted to a nightime baileys on ice. I am normally very careful about alcohol consumption, but I do enjoy it! It helps me sleep too. And a little indulgence is helping me to get through a really bad patch!

    I hope you find something to help you really isn't fair sometimes!

    Thinking of you, Mavis xx

  • Mavis and no more heels, we had a special. Chinese takeaway with garlicky aubergines and egg fried rice as our treat! And we're having a car picnic with hot chocolate with our 11 year old grandson tomorrow. Going to get some wild flower seeds to sow the bank beneath our new wee hoose in the highlands for our February visit. Just wish I was mobile!

    Thanks for your kind messages

  • I too hate the public/private healthcare system. People should be treated equally. Not everyone was born with a "silver spoon" in their mouths!! I was born with a "broken plastic spoon" in my mouth. We were so poor, we couldn't even afford tape to fix it!!

  • I'd prefer to be with everyone else and not in some private room, but I'd like it even more if people didn't jump the queue because of their money.

  • Darling Cathie its ok to moan about the system and the pain your in. If you get it out there it does ease the tension. As to your friend tell her it is the pain of healing and not suffering and at your nicest possible way tell her to suck it up!!!!! lol.xxxx

  • See my message!

  • Hope you are feeling better this morning Cathie. Or should I say coping better with your pain and immobility. It must be so frustrating. You know what you need to make your life easier It is just the waiting.

    Hope you enjoy your car picnic today. I am sure your Grandson will cheer you up. X

  • I felt much the same after my hip replacement (20 months ago). At first I was euphoric, because the excruciating hip pain was gone; but as I got more mobile - more mobile than I had been in 2+ years - I started to notice how much my feet and R knee hurt. My recovery plateaued, then went backwards again, and I was soooo demoralised, and couldn't work out what I was doing wrong. Then someone pointed out it was only a matter of time til I'd need my knee doing, and the ortho surgeon described what I'd need doing to my feet to fix them, and outlined the not-so-good (50:50) chances of success... I felt frustrated and miserable and self-pitying, and like a failure because I couldn't work out what I was doing wrong... :(

    And then, 3 months ago, my RA was finally diagnosed and it all became clearer... The steroid depo injection they gave me helped enormously, and the DMARDS seem to be working too. I've stopped eating refined sugar and cut down on bread/wheat, on a hunch really, and that seems to help too... My pain is down by about 70%, compared with the last 3-4 years. :) I've lost some weight and feel much better in myself generally. :) I'll still need surgery at some point, but hopefully not so soon, and I feel like I've got a bit of respite in the meantime...

    The trouble is, RA is a complex condition and many of us have other conditions like OA too. I feel so out of control sometimes, as I get to grips with one thing, just as another gets bad! Or like P a mechanic looking at an old banger! - trying to work out what's wrong and what could maybe be fixed or tuned up... I have realised that medical/surgical interventions have their limits - and sometimes completely different things help just as much or MORE - like friendship or exercise or heat or laughter or diet changes... Some things WILL help you, cathie - like visits from thoughtful friends... :) The tricky thing is to work out what helps most and do more of that, and what hinders - and avoid those things! Personally I find a bit of self pity helpful - I've spent long enough being brave! So I say - feel free to moan! I hope you feel better soon!

  • Thank you. I found that methotrexate kept the oa at bay. It's good to have the support from here. I hope they sort you out

  • My knee replacement was in November, so it's reasonably safe to say that it wasn't as bad as I feared. I put that down to good preparation with physio, which I paid for, and a really good careful surgeon. Everyone says that knees are more problematic than hips but that's not my experience (so far!)

  • It's still early days, if your repacement was only in Nov. :) Hopefully you'll go from strength to strength. :)

    I think that's one of the worst misconceptions about joint replacement surgery - many people seem to think you will be 'better' in 6 weeks, while in reality, most people take 6 months or more. If you don't know anyone else who's had a replacement, it can leave you with very unrealistic expectations...

  • My new joint is fine. My problem is the other knee which is really bad and is stopping me from wallking. I'm doing the exercises (lying on my back) but I just have to wait for the second knee replacement. I was feeling fed up because I have to wait and someone i know just booked herself in to a private clinic and hey presto. I believe in level playing fields!

    Anyway thanks for the kind wishes

  • Hi cathie

    New round here so hello! I realise I'm a bit late chiming in here, but after 2 hips, 1 knee and 3 spine operations - most private through insurance - it's a subject I've thought about in some depth! A couple of points really, sorry you've been having a rough time of it, and trust me I do know 🤕🙂 but have you considered that if somebody has the option of private surgery (through insurance or their own money) and they elect to go on the NHS, that they are taking up an NHS bed unnecessarily? This means longer waiting for the rest. Also going privately isn't queue jumping in the sense that it pushes someone else further back, as mentioned it speeds it up if anything because private lists and NHS lists are totally separate.

    If that person going private does so in an NHS hospital, they go in a separate bit usually (so they don't have to mix with the plebs 😃) and the money that the hospital charges is money they keep and put back into NHS patient care - frontline services such as Rheumatology. And they need every penny at the moment.

    Consider also that the person having their operation privately has already paid to have it done on the NHS just as much as the next person who has been paying out a fortune in NI contributions for the last 20 years.

    Now ask yourself what you would do if you won the lottery (the escapism may be cathartic 😁) and needed surgery, would you pay to save yourself 2 months of agony knowing you were helping the NHS? No? What about if it was a relative that needed it and you had the money?

    Anyhow I'm not trying to argue, I'm trying to help you by making it less stressful when you look at your 'friend' or hear about her pain. If she had gone on the NHS, thus taking up a bed you could have had, would that have been any better?

    As for the pain / sympathy bit, that's a whole separate issue. Maybe she's the type that needs lots of sympathy and you're the stoic carry on as normal type. Some people prefer to think of themselves more than others I have realised in the last 15 years.

    On a positive note, your first knee is good. My knee surgeon was at great pains (pun intended🙂) to tell me how painful knee surgery was / could be and how it could not work very well despite being done properly sometimes for reasons unknown. So a good outcome is a big plus. Swings and roundabouts as they say.

    Sorry for the essay!

  • Thank you for what is quite a tactful reply. However although I haven't done the sums, I'm fairly sure that the private sector lives off a lot of the NHS investment. Medics training, infrastructure, and often the private bits skim off certain procedures and leave the chronic conditions and any complications to the NHS.

    I can't accept a two tier system whoever pays what!

  • Thanks everyone for kind replies. I received my 12 week letter yesterday, but to synchronise with ritiximab it's likely to be mid May before I can get the op. At least hopefully the weather will help me get back on my feet.

    Hope everyone waiting for something similar has hope

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