I'm scheduled to have total knee replacement in both knees at Guys

[Tucson]

I was referred to Guys by Prof. Hunts team at st Thomas'. They will be done one at a time and the second one will only go ahead once the first has healed. I saw the Consultant last week who is quite happy to do the surgery and has made me fully aware of the risks. Tbh I was already aware of the risks as everyone else has refused to treat me due to the Aps and my history of strokes. Anyway I had the pre-op assessment at Guys last week and was given a sealed letter to hand to my GP.My Gp has always been great and tries to help in any way he can. I saw my Gp yesterday, he read the letter in front of me and then handed it to me to read. It says I'm having surgery and as he prescribes my Warfarin can he advise me how to start my Oral anti-coagulation therapy post-operatively. Also document it in my Yellow book. It states I should stop Warfarin 4 days before surgery and replace with ................

There is a bridging protocol included produced by Prof. Hunt which covers all sorts.

There is a box ticking section for risk, low,intermediate,high, very high and unclear risk. They ticked the unclear box as they don't have anticoagulation details for me. Tis was completed in my presence without any discussion between us.

So I can see why my Gp handed it back to me and said I'm not willing to prescribe anything on the basis of this letter and I would need instructions in exactly what you need and for how long. I would then need to refer it to the CCG? (I think) and get their permission to prescribe it because I and they would be held responsible should anything go wrong. I can see his point, he has very little knowledge of Aps, I'm the only patient at the practice with it and I have an unusual variant of it. We had a very long discussion about the risks involved and he things I shouldn't rush into surgery. Rush ? I've been trying to find someone I trust to perform the surgery for 3 years, I've spent the last year in a wheelchair. I don't think I'm rushing anything. I am aware I could have yet another stroke and yeah it could be fatal or extremely severe. I don't know what the percentages are because I don't see how it helps to know. I do know my chances of it going wrong are greatly reduced by having both a surgeon and anaesthetist who deal with patients like me all the time who are fully aware of the risks involved.

I also think if I bottle out now then it may not be on offer again.

So I guess on Monday I need to phone both Guys and St Thomas' and either get them to prescribe the Dalteparin or give detailed instructions to my Gp. Although as they wish to proceed with the Op in the next 6-8 weeks and the way the CCG ? dragged their feet last time on my coagucheck strips I don't think they'll get on board in 8 weeks.

When I had my Arthoscopy the hospital just handed my the syringes and told me what to do with them so I'm hoping once I talk to Guys and st Thomas' they will do the same.

[lupus-support1 Administrator]

I sincerely wish you well. I hope St Thomas' & Guys will be helpful as you deserve to get the treatment you need. My Mother has problems with her knees, no cartilage in either, but at nearly 92 years, she understands that at her age, things will not work as they should. Nevertheless, her GP has referred her to see whether something can be done to help.

With good wishes,

Ros

[Tucson in reply to lupus-support1]

If I was 92 I wouldn't bother either but the thought of possibly spending the next 30 years in a wheelchair if I don't have to is I believe worth the risk.

[MaryF Administrator]

Best of luck, I look forward to hearing how the first one goes for you. MaryF

[Tucson]

Well hopefully I survive to give an update, I'm sure I'll be fine, the experts obviously think it's a risk they can handle. I must admit I'm trying to not to over think what may go wrong. I think this is my best chance of success so I look forward to updating you all.

[HollyHeski Administrator]

Hi, I recently went through a small procedure at St Thomas's, I still needed a bridging plan and was given two different plans by doctors at St Thomas's!

I left numerous telephone messages but no one came back to me. I then found Prof. Hunts business card and emailed the team, I got a reply within a few hours, the nurse went to Prof Hunt direct, got the details, emailed them to me and my GP.

I will pm you the email address, just explain like above that your GP needs the plan in writing and that you need Prof Hunt to oversee the plan.

Wishing you well for your operation.

[Wittycjt in reply to HollyHeski]

Now that’s very helpful ...khuddos

[Tucson in reply to HollyHeski]

Thank you for that, the problem is they did give me a bridging plan which in itself is complicated enough but then ticked the unknown risk box, which means my Gp won't touch it. He doesn't know my risk except it's risky and if st Thomas' don't know who does. I just wish the letter had been handed to me at Guys unsealed and I would have read it and questioned it's content rather than be left hanging. My Gp wants it in plain English telling him what and how much to prescribe. Not as it says at the moment stop Warfarin 4 days before the Op and then prescribe ...........(blank). If he still says it needs to go to the CCG then it's highly doubtful it will happen on time.

[Tim_Thorpe]

I have history of stroke plus Tia’s

2013 had gangrus appendix ended up having Emergeny surgery which left me in intensive care unit etc etc

As result of surgery had a large hernia which I wanted repaired

But after seeing two different surgeons on two different occasions at my local hospital

St helier . I didn’t have the surgery done as they both didn’t want to do it and said I would clot and have a stroke ....

To cut it short hernia was getting bigger and as I’m under the care of prof hunt and her great team for my antiphosolipid symdrome she said to have the surgery done at st Thomas

I had the surgery was in there 2 days before surgery 1 day for surgery and 2 days after

(5 days in total ) st Thomas was excellent with my bridging plan and before and after care 👍

Had op with no problems or clotting 😊

So wish you all the best and hope your operation Go’s well 👍😊

Your in the best hands at st Thomas x

P.s did feel a bit funny a couple of times after operation

And after seeing a consultant as follow up to operation had an Mri done on my brain 🧠 which showed up micro clots on brain which I’m having another mri done this July to see if there are any more !

Prof hunt said this is due to my antiphosolipid symdrome being so strong and wasn’t due to the surgery

So if I was you I would go for surgery and have the benefit of two new knees 👍

Regards Tim

[Fra22-57]

Oh the hurdles you have to climb over to get treatment. Why can't GP contact prof Hunt ? Why do we have to do all the running round.Really feel for you.Stress is not good.hope you get some fast answers and treatment too.keep us all informed

[GinaD]

I bridged for my hip replacement back in ‘13 and will do that next month for my upcoming knee replacement. It’s really not such a big deal. I found the procedure intimidating at first but in actuallity easy in practice, I wonder why health proessionals are intimidated by formulating and facing a bridging protocol?

[Tucson in reply to GinaD]

It's only a big deal because the GP is refusing to prescribe what's needed to bridge. I have bridge before but that time the hospital handed me the injections, GP had no involvement.

[MissPiggy005]

I am under Prof Hunt’s care at St Thomas’s for the cerebral form of APS and Hughe’s syndrome. I had a knee replacement by James Bliss from Guys three years ago. Prof Hunt provided the bridging plan which was simplistic to follow. From memory (not a reliable tool) I had to do a bit of badgering to get the plan as they are a busy department. The plan is only for a week so you have time yet.

I had no repercussions from the op that affected my clotting. The usual rules of keep hydrated, keep moving and compression immediately after surgery helped prevent clots. Having a positive attitude essential.

Good luck!

[Tucson in reply to MissPiggy005]

I have the plan, it's extremely complicated but because the person completing the instructions to my GP hasn't ticked the right box the GP won't have anything to do with it. Therefore no drugs to bridge with and therefore no Operation

The box ticker has me as unknown risk, that's tosh.

I think I'm High risk, which is fine stop 4 days before, replace with Dalteparin? restart Warfarin 6 hours after surgery.

My Gp thinks I'm very high risk and doesn't want me to have the operation. Very high risk entails being admitted 4 days in advance, stopping Warfarin and then I.v drip Heparin

I'll talk to both Guys and St Thomas' myself and get them to clarify my risk.

[Tucson]

That's exactly what I intend to do. I can see the GP's point, in view of the information he's received so far and can't say I blame him. I just wish things would be straight forward for once. It comes down to what the pre op clinic put on the form about unknown risk but the surgeon is fully aware of the risk and will liase with Prof. Hunt any way. I just want it to go smoothly without any hitches. The CCG will scupper it because they initially refused to allow test strips on prescription, went to appeal and they still scuppered it. I don't know why they eventually approved it but it clearly wasn't willingly. I guess them not providing the bridging heparin is common practice for them as HollyHeski also had to get it prescribed by her GP.

[Tucson]

I have sent a very polite email to the address given by HollyHeski (thank you immensly) requesting assistance with the briging protocol explaining my GP's point of view and the proplems anticipated with the CCG. So will let you know what happens if anything.

[Tucson]

Had an email reply first thing this morning from one of the nurses asking me to ring them and they'll sort everything out for me, can't tell you what a relief that is for me.