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Author Topic: Massive PE 15 wks ago, now face further surgery  (Read 18904 times)

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Offline Gill1960

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Massive PE 15 wks ago, now face further surgery
« on: October 20, 2008, 04:41:31 PM »
Hi
Had bi lateral kneecap replacements on 8 july 08, suffered massive PE on 10 july, and spent 3 weeks in  hospital.  Have been on warfarin and my INR levels are not really stablised (4mg & 5mg alternative doses, 2 weekly blood tests).  One of my patella has dislocated, due to the large heamatoma and blood loss when I was ill , this has stretched the soft tissue capsule. My surgeon wants to operate to tighten this capsule up.

I am terrified of having another PE, I keep thinking I was very lucky indeed to survive the first time and having sleepless nights worrying about the next surgery.  I have an appt with a haematologist on mon 27 oct to discuss the risks .  Can any body put my mind at rest and tell me how they manage this situation.  I know in the US they can put a filter in to catch any clots my here in England they don't.

I am trying to compile a list of questions for the Consultant and I would appreciate any suggestions you may have.

Cheers

Gill
2005 - arthroscopy & Lateral Release left knee
2006 - Arthroscopy & Lateral Release Right Knee
2008 July 8 - Bilateral Patellofemoral  replacement
2008 July 10 - Massive P.E.
nov 11- patellofemoral revision surgery left knee
Jan 09 - awaiting MPFL reconstruction left knee

Offline suehaem

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #1 on: October 20, 2008, 05:02:21 PM »
Hi Gill,

You poor soul so sorry to hear that has happened to you and understandibly you would be scared to go ahead with further surgery.

See what the Haematologist has to say on the 27th and way up the options.  I don't envy you having to make such a difficult decision.  Sorry I don't have an ideas or suggestions for you but good luck.

Sue
 ;D
North Wales

Fall from horse 04/04
Arthroscopy 27/07/07 -Grade III debridement
Re-injured knee running 1/03/08
Arthroscopy 11/10/08 - Grade II debridement
09/03/16 Fracture fib sking damage to knees
31/05/16 Grade 4 Chondromalacia and patella tilt (R)
17/11/16 Need new knee cap (L)knee
Awaiting Arthroscopy 2018

Offline Gill1960

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #2 on: October 20, 2008, 05:15:21 PM »
Thanks Sue.  I've been really calm up till now.  Have only been waiting 2 weeks for the haematologist appt but seems like 2 months!!!  The days are going so slowly.

I know that if he says I have to wait 6 months for the surgery then the original op will have to be done again (the implant will be scuffed by the dislocated patella) whereas if my surgeon can operate soon then only a tissue repair is needed. I don't think I could go through the whole op again.  I am at the point where I wish that I never had the surgery done -  feeling really sorry for myself. :-[
2005 - arthroscopy & Lateral Release left knee
2006 - Arthroscopy & Lateral Release Right Knee
2008 July 8 - Bilateral Patellofemoral  replacement
2008 July 10 - Massive P.E.
nov 11- patellofemoral revision surgery left knee
Jan 09 - awaiting MPFL reconstruction left knee

Offline suehaem

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #3 on: October 20, 2008, 08:01:58 PM »
I bet you are feeling low at the moment and have every right to be.  Try to think positive, they may be able to sort you out without to many problems. 

Sue
 ;D
North Wales
Fall from horse 04/04
Arthroscopy 27/07/07 -Grade III debridement
Re-injured knee running 1/03/08
Arthroscopy 11/10/08 - Grade II debridement
09/03/16 Fracture fib sking damage to knees
31/05/16 Grade 4 Chondromalacia and patella tilt (R)
17/11/16 Need new knee cap (L)knee
Awaiting Arthroscopy 2018

Offline jcblank

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #4 on: October 21, 2008, 07:33:24 AM »
gill---i have had a clot in my leg and found out i have a clotting disorder and have been on coumadin (warfarin) x 2 years.  i have had 3 surgeries since then with no problems.  i was taken off coumadin and put on lovenox injections a few days prior to surgery and stayed on it until my pt inr levels were more regular--approx a week or so.  lovenox does the same thing as warfarin but in a different manner so that surgery can be performed while on it.  the injections are no fun as the go in the stomach 2 x a day.
check with your hematologist about this and if that is what they use there is does lower the risk but as always there is a chance of another clot but very slim.
1995 menisectomy
9/06 menisectomy with resultant blood clot
6/07 meniscal transplant with peroneal nerve damage
12/07 peroneal nerve decompression

Offline rozzzie

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #5 on: October 26, 2008, 03:35:31 AM »
Sorry to hear that you had a PE.  I have been on warfrin for it seams like years.  I had a filter put in before my TKR's BUT I had a major accident involving a long hospital stay where I was not able to be up except in a chair.   I required surgery to insert a rod into the tibia  to stabalize the fracture from the accident.  You can get through this. 

Keeping your INR in the right range is very important. If your INR's are not as stable as you would like, alternating doses does not mean that your INR is not stable.  I often alternate doses to keep mine stable.    Get some graph paper and plot you INR's and your daily warfrin intake, note when you eat lots of high vitimin K foods,  see how it looks after awhile.  discuss this with your doc to see how you can stabilize your INR.

Good luck

HUGs
Rozzzie
OA of knees since 85 
93 scrambled ankle - PE
98 PE
99 anlke fusion
04 hit by car broken leg, ribs AC joint seperation
RTKR  Dec 1 2005
LTKR. IM rod removal March 16, 2006

Offline Gill1960

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #6 on: October 26, 2008, 11:07:54 AM »
Hi Rozzie

Funnily enough my INR seems to have stablised.  Had a blood test last tuesday and it had stayed at 2 , from two weeks previous,  so still taking alternate 4 & 5mgs and next blood test in a month.  Sods law though, my operation date came through yesterday - November 11 .  Seeing haematologist tomorrow so will need to see how I get INR down to around 1.5.  The it will be nack to square on trying to raise it. 

I dont seem to eat a lot of high vitamin K food - not into broccoli etc - I was on antibiotics for quite a while and I know these can affect INR levels , so I think now I'm off those and they out of my system, this is probably whyINR stable. 

You certainly don't appreciate what you have to think of when you are on warfarin - I wanted to lose a bit of weight but was advised by the coag clinic, not to be drastic in cutting out food as this can de stablise you.  Hopefully, I am only on it for 6 months (if my next op goes without incident).  But I know I wont take my health for granted anymore.

Cheers

Gill :)
2005 - arthroscopy & Lateral Release left knee
2006 - Arthroscopy & Lateral Release Right Knee
2008 July 8 - Bilateral Patellofemoral  replacement
2008 July 10 - Massive P.E.
nov 11- patellofemoral revision surgery left knee
Jan 09 - awaiting MPFL reconstruction left knee

Offline Gill1960

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #7 on: October 28, 2008, 12:06:09 PM »
Hi

Saw haemtologist yesterday to go through the risks of further surgery.  I have received letter with operation date of Nov 11. First off, he said I would have to wait for 6 months :( because I have had a significant PE.

I explained that my OS suggested that if I wait 6 months then my implant will be scuffed by the maltracking kneecap and he might have to do whole operation again.  He then asked what op was he going to do -  told him I was told 40 -50 mins tissue repair. and I was willing to have a spinal anathestic,  My risk factors are now: previous PE and BMI over 30 (I was on HRT when I had op in July)and had a general anastetic). so he said that  reduced the risk.

He said we had to weigh up, risk now with relatively minor op, or wait 6 months and the possibility of major op again and still a risk.

He said that if I was to have op on November 11 then I woiuld have to stop warfarin in the next couple of days ( He said he will call me at home today or tomorrow to tell me to stop taking tablets). Then shortly after surgery I will have heparin /clexane injections, then back on warfrin.

Then he said he needed at 3 way conversation with my surgeon and the anaethatist to decide!???  I told him I have an appt with my OS on Thursday at 10.10, and he said he will be there - is this the NHS or am I dreaming??  two departments working together???!!!

It was like a rollercoaster ride of emotions,  don't want to wait 6 months cos I'm in a lot of pain ,  but scared of having surgery in two weeks.

So will have to wait till thursday and hope the haematoloy consultant turns up to my OS appt.  It's either going to get sorted out or nothing will happen and I will stlll be waiting for a decision at Christmas!!

Watch This space..........

Gill x
2005 - arthroscopy & Lateral Release left knee
2006 - Arthroscopy & Lateral Release Right Knee
2008 July 8 - Bilateral Patellofemoral  replacement
2008 July 10 - Massive P.E.
nov 11- patellofemoral revision surgery left knee
Jan 09 - awaiting MPFL reconstruction left knee

Offline Doc79316

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #8 on: November 01, 2008, 02:21:34 PM »
HI Gill,

What hospital are you at? You're right - 2 NHS COnsultants from different departments working together is extraordinary!
May there should be a 4 way conversation/appointment between the 3 doctos (OS, Haemotologist & Anaesthetis) and you. That way, they can alleviate any fears you may have and you can ask all of them any questions about things you're still not sure of.

Anyway, you will get through this and after surgery you'll wonder why you were worried. Your doctors know the risks of putting you through surgery at this time or waiting for 6 months and so they can work together in order to reduce those risks to a minimal amount.

The fact that one doctor is attending another's appointment with you just ges to show that they do care, and that they are doing everything they can to get things right. Now they know of the risks, they can deal withj htem. Beforehand, they didn't know you were likely to have a DVT and so couldn't prepare for it.

Take care,

Laura xx
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline Gill1960

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #9 on: November 01, 2008, 06:14:45 PM »
Hi Laura

I'm at University Hospital, Coventry.

Things didnt quite work out as planned! >:(

My haematologist rang me at home on Tuesday to say he had spoken to my consultant and op will go ahead on Nov 11.  Decreasing my warfarin over next 7 days or so.

Turned up at appt with Ortho consultant Thursday - guess what??? - yep, he wasnt there!  Haematologist didt turn up, pssobility bevause he had already spoke to ortho consultant and had telephoned me at home. So much for this three way convo.  The registrar on duty knows my history as he operated on my right knee at same time as consultant did left  one -  he wasnt aware of surgery on Nov 11 or that I had to see haematologist  >:( My notes not even there.

In fact he didnt know why I was there at the outpatients clinic - great.  I asked about my care package (this is put together by all departments involved before any surgery deemed high risk is performed.  I know this because I have two friends who are midwifery sisters).  He said that should be all put together a couple of days before surgery.   I'm sure he had his fingers crossed behind his back!!! ;D

All in all it was a waste of time - the only thing I found out is that they will go through old scar,  trim the old scar up (it is quite bad), and it will look better afterwards, so that's good.

So,  not feeling too confident that everything will come together,  Haematology seem to hae their act together but orthopaedics havent got a clue.  If on the morning of surgery I am not satisfied with things then I will not proceed with the op. 

So the good old NHS did not deliver on my expectations - shouldnt be surprised really.  I know probably everything will be sorted but that doesn't help my stress levels in the meantime.

All in all I can't complain about the NHS because without their expertise I wouldnt be here now - in an emergency you can't fault them , its just their organisational skills that leave a lot to be desired.

Take Care
Gill x



2005 - arthroscopy & Lateral Release left knee
2006 - Arthroscopy & Lateral Release Right Knee
2008 July 8 - Bilateral Patellofemoral  replacement
2008 July 10 - Massive P.E.
nov 11- patellofemoral revision surgery left knee
Jan 09 - awaiting MPFL reconstruction left knee

Offline Gill1960

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #10 on: November 17, 2008, 01:02:52 PM »
hi

Well I got through surgery.  Had a spinal anaestetic (can't spell, it was brilliant.  Surgery was more than anticipated -  had ligaments tightened but the patella button had already 'scuffed' so this needed replacing.

cos I had spinal I had to wait 8 hours to have my first shot of clexane (low weight molecular heparin).  I am on 40 cl of clexane per day for two weeks the  on 150g of aspirin for 6 weeks - then that's it!!   Not sure I'm happy with nothing after but see how I feel.

My INR was 1 when I had surgery but I have not had any blood tests since (not even in hospital)!  not sure this is right.

Care in hospital hit and miss;  I had a student nurse doing the rounds with the consultants firstly telling them I had surgery on my hip!!  then telling them my massive PE was a 'few years ago' .  Fortunately for me the Doctor knew my history and said a few choice words to her and the ward sister -  quite scary when your life is in their hands.  But I'm out now and feel safer.

Just got to keep up with the exercises now!!

Take care
Gill x
2005 - arthroscopy & Lateral Release left knee
2006 - Arthroscopy & Lateral Release Right Knee
2008 July 8 - Bilateral Patellofemoral  replacement
2008 July 10 - Massive P.E.
nov 11- patellofemoral revision surgery left knee
Jan 09 - awaiting MPFL reconstruction left knee

Offline suehaem

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #11 on: November 17, 2008, 09:21:18 PM »
Excellent news Gill, glad all went well and just have to get through the recovery phase now and by the sounds of things away from that hospital as well.

All the best.

Sue
 ;D
North Wales
Fall from horse 04/04
Arthroscopy 27/07/07 -Grade III debridement
Re-injured knee running 1/03/08
Arthroscopy 11/10/08 - Grade II debridement
09/03/16 Fracture fib sking damage to knees
31/05/16 Grade 4 Chondromalacia and patella tilt (R)
17/11/16 Need new knee cap (L)knee
Awaiting Arthroscopy 2018

Offline Gill1960

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #12 on: December 20, 2008, 02:06:11 PM »
hi

All going well with my recovery. got 135 degree flex etc, only used crutches for one week; scar healed really well.   My patella is jumping and clunking a bit when I go from flex to extension but physio said, nothing to worry about, your muscles not working together i..r. glutes, quads and medial , so have been working hard on these .

Had OS follow up appt 18 dec, show him my patella jumping etc and guess what ..... need ANOTHER operation!!! 3rd in 6 months . Had X rays which show patella in right position  but he said was maltracking and not sure why! He said that I need a medial patellofemoral ligament replacement reconstruction (bit of a mouthful) to 'anchor my patella' to the medial muscles or something like that BUT if all not well he may decide to do a TKR on the day - I'm stunned.

I can't begin to relay my stress, anxiety, fear etc at having the surgery in Nov, getting through that and now to face it all over again! Got MRI booked and he wants to do surgery very early January.  We had planned to go away with a group of friends for New year and all of us together 'kick the ass of 2008 into touch' and see in 2009 with a bang and look forward to better times.  Can't face doing that now!

Still on 150mg aspirin daily so assume I will have the same cleaxane regime as before - probs have to keep reminding the nurses that I need it -
as you can probably tell feeling really pissed off - totally lost interest in christmas  (Bah humbug!) - just trying to put on a brave face for everyone else.

Sorry to be miserable but feel better now I got it out my system .  Thats the good thing about Knee Guru, doesnt matter if anyone reads your post but it feels good to get it all out!!

Take care
Gill x
 
2005 - arthroscopy & Lateral Release left knee
2006 - Arthroscopy & Lateral Release Right Knee
2008 July 8 - Bilateral Patellofemoral  replacement
2008 July 10 - Massive P.E.
nov 11- patellofemoral revision surgery left knee
Jan 09 - awaiting MPFL reconstruction left knee

Offline bishop

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Re: Massive PE 15 wks ago, now face further surgery
« Reply #13 on: July 05, 2009, 04:45:24 AM »
I know this is an old thread.  Gill, how are things going now?