September last year my husband had to have surgery. He was told to stop his warfarin 5 days before hand.
Before surgery he didn't have a Rhumatologist. He does now. So we didn't have anyone to talk to about proper management.
A report has now been written by his Rhumatologist, to a Medical Panel who had to decide if he was entitled to compensation for the CAPS event.
Thankfully he has been accepted for cover for an episode of Disseminated Intravascular Coagulation (DIVC) as part of Catastrophic Antiphospholipid syndrome (CAPS) resulting in myopericarditis, pericardial effusion, plaural effusion, transient liver damage, acute renal injury and acute adrenal infarction (with likely permanent damage with ongoing adrenal insufficienty). Cover was granted because it is rare and unpredictable and not an ordinary consequence.
If EVER any of you have to have surgery, make sure you seek sound medical advise, and if you become unwell immediately after surgery, scream for help. It took us two weeks of seeking help before he was finally admitted to hospital by then he was almost dead. the Dr's now say he should have died, and is very lucky to be here.
The good news is most of his medical expenses and assistance going forward, is now covered by insurance.
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Tiggercat
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I find it appalling that you were not given advice or have a Clinical Management Action Plan which was devised my by haematoloist and stroke doctor. Last year, I had a total knee replacement. The woman in the bed next to me in our four-bedded Bay said I had been in the operating theatre for hours. I do not know what went on but I was in hospital for two weeks when I had been told I would only be in three days. Needless to say, the Orthopaedic ward did not fully follow the plan because I was put on 18mg of Warfarin a day and an injection of Heparin straight away when I was only supposed to be started on Heparin. I cannot remember the name but it wasn't the one the haematologist had recommended in the Clinical Action Plan. I was given a copy of the plan.
I feel sorry for all of you out there trying to get diagnosed, struggling with your medication and with doctors. That is not my experience. I do know because I am a young knee replacement patient that I will have another total knee replacement in 10 years time, if I live that long.
My sister died from a TIA last year just two weeks before I had my total knee and patella operation, so I was rightly panicking when I went in for my operation as well as grieving for my sister.
Wow, I held my breath waiting to read until the end to hear he is still alive.....well done for being a survivor, its true what doesnt kill you makes you stronger!!
I hope the medical profession could have your case as a training exercise, it is all too common mistakes - huge mistakes with this tricky disease, wishing you a more positive future and hoping that things improve for you on every level! Mary F
ps please keep us posted of any new information and outcomes!
My biggest concern is they were concentrating so hard on what they could see (heart, kidneys, lungs, adrenals) that they may have missed other organs that were affected. We still have to have a full assessment. Now the insurance is paying, we hopefully will get a better look at things.
As for compensation, that is another whole issue. Again, a full assessment to see what permanent damage has been done before they will pay anything. It is then linked to the American Medical Association calculation of whole person impairment before they decide what each permanent impairment is worth.
Your husbands story is astonishing. His anticoagulation should not have been completely stopped before surgery, he should have been converted from Warfarin to Heparin, as I was before I had coronary bypass surgery, and then his Warfarin restarted as son as possible after surgery, with the Heparin continued until his INR was back in range.
My thoughts are with you both.
Best wishes.
Dave
I am sat here with my jaw virtually on the floor as I read your post. Goodness me I hope you can press for some compensation for this truly awful experience. Thinking of you both.
Glad you got the compensation. Sorry this happened. But I understand why -- here in WV whenever an orthopedist, or physical therapist tells me I MUST have my hip replaced and I sigh and explain that I'm on warfarin therapy, we always have this conversation: "They'll just stop the warfarin a week before." "But then I'm at risk of a stroke or a DVT or a PE during that week." "Then they'll put you on heprin." "But I"m allergic to heprin." "Then they'll put you on lovanox." "But I"m allergic to lovanox." "Then they'll do SOMETHING! But trust me, you've gotta have the surgery!"
and then I am dismissed as a problem patient because I don't agree. And I go back to exercise and training and those NSAIDS I'm also not supposed to take.
Sigh.
Best wishes for as much physical and financial recovery as possible.
I am so sorry to hear this horrible experience and I send many thoughts to your husband on his recovery road. The truth is, as we all know, not a lot is known still about APS and especially how to handle it with surgery.
In 2 1/2 weeks I'm having major surgery. I have cancer, the surgery will be about 6 hours long. Because I also have low factor viii levels I can't take either warfarin or heparin, but do take nattokinase. It's alternative but has saved my life just as the warfarin and heparin does for those of you on that plan. Anyway, my greatest fear is that I will not be put back on it immediately after surgery. I must be. Absolutely. Will take it until the morning of surgery, but it is the after am worried about, I will not be real coherent.
I fully understand as I am having a procedure done (suppose to have been done Tues) however the hospital I attend did not contact haematology in London to ask for advice as told to continue with Warfarin but the doctor in London said stop and take Heparin instead, this I relayed to the said nurse and she said she was not aware etc etc so to people out there with APS seek advice. I had a TIA two years ago and its so frightening, that I now make sure everyone is in the picture. Also not having a spleen one has to take antibiotics, so they were not familiar with this. Its hard work but its our bodies.
I am having surgery this friday. I have 2 Hemotologist, 1 GP, 1 Hospitalist all consulting with the surgeon. The bottom line...my coumadin stays at 3.6 even during surgery, and continue getting tested 3 times a week. I only drop the Lovinox shots for a few days.
History...5 strokes, clotted off right arm and heart bypass surgery. All as a result of the APS.
It is scary having surgery but this is not the norm. After hour experience, the best advise I can give is see if you can, stay in hospital longer than 44 hours, and be monitored constantly as a high risk patient. Post Surgery if you feel unwell AT ALL get back to hospital, or phone your Rhumy.
It was steroids that saved his life. Steroids seem to be the first line defence if you have CAPS. They don't know why, but once they gave them to him, he started coming round. And it was quickt. One 100mg dose and he showed improvement. By 48 hrs of them, he was sitting up in bed talking, eating, even laughing and joking a bit.
Good luck to all of you with your surgery and push for some form of cover before and after surgery. Even asparin would probably have been better for my hubby than nothing. Although we now think he may have been on hepron post surgery, but his INR shot to 2 within days so we knew it wasn't a true reading. It then continued up to 6.5 in less than a week.
I am glad that you have shared it with us. I have been told to stop warfarin for several days before various minor procedures, such as wisdom tooth extraction,I always felt vulnerable, next time I will insist on an opinion from a specialist.
Thanks so much for this post and God bless.
Yes, we at the charity are aware that people can receive really patchy advice before and after surgery which is why I produced the Going into Hospital Factsheet with help from patients as well as medical approval:
I wish we knew of the Hughes-Syndrome site before surgery. We were simply told when he was diagnoised, that he would require warfarin life-long, and be careful to make sure people knew he was on warfarin for APS if he ever went to hospital.
We were then left to the knowledge of our Primary GP for warfarin management, with no followup from a Rheumatologist or Haematologist.
We certainly told them of his condition every time we spoke to someone and they acknowledged it. However, I don't believe they bothered looking up his blood tests to see that he "has antiphospholipid syndrome with high anticardiolipin IgG and lupus anti-coagulant". I am sure they didn't check his diagnosis as it was made in a different hospital even though the records are shared and the fact I was asked about it when he was critical.
They certainly didn't now of the possibility of CAPS. We were only ever warned of DVT's, PE's etc, which they warn every one about when they plan abdominal surgery.
Hind Sight is 20/20 and thankfully my husband can look back with it.
Because of his Adrenal Insufficiency, he is not as well as he had been and that is ongoing, he is also now on a higher dose of Warfarin with higher INR (over 3 is required) and he now has a Rheumatologist. Suddenly APS is taken seriously. And as MaryF said, hopefully going forward they will use this as a teaching tool. It was certainly a learning curve and they had every nurse in CCU looking up the conditions to see what the hell it all was.
It is a lesson to everyone and I'm just glad your husband survived it. I wonder if he would consider becoming a media volunteer? Not in terms of going to the general press necessarily, but more for medical journals on a 'what not to do' scenario? If you think you/he are up to writing down what happened and filling in a simple questionnaire, please email me at the charity office at:
I wish your husbands story would be made public around the world. Not, sadly, at the expense of what he has and is going through, but it is so past time for both the medical profession and public to be made aware of the seriousness of this condition.
It is now 10 days until my major surgery. Had a big pre-op meeting at the hospital last week and the doctors advised me to stop the nattokinase a week before. (Natto is similar tho the haparin, but I can't take heparin or warfarin). I have also been advised that immediately post surgery I will be put on heparin for the week I am in hospital. My explaining that I did very poorly on heparin before and was told by my hematologist I could not take it fell on deaf ears!!!! I have been advised that "I will be watched very carefully and that every patient is put on heparin, no matter what their condition is."
Ok, so this is what is going to be. I will NOT stop the Natto before because of what I have read here. I may lower the dose a bit a few days prior to surgery, this is MY choice. I will not endure CAPS due to hospital doctors that know less about APS than we do. Correct, I do.
I will have to endure the heparin. I was on it for 4 months so I should survive it, but was told I could not stay on it. Then I will immediately start the Natto again and will have it in the hospital with me.
I was also told that the fact that I take cortisone (20 mg daily) was a major problem and the doctors do not seem to believe that I have Adrenal Insufficiency. They want me off the cortisone but will actually increase the cortisone during and after surgery because of the stress of surgery on me. This is actually good, so I concur.
So that is my situation.
I wish all of us well here, whether or not we have to deal with surgery. It is appalling, really.
I am assuming Leigha, that you had a StressTest to confirm your AI? Is it primary or secondary?
Are you also on a Addison's forum. I belong to one which is full of great information on what to do, how to deal with things etc. Might be worth looking at.
Please don't assume here, we are all in the same boat in many regards but we each have individual situations and how we find treatment, etc., is one of the challenges we face. No, I I never have had a stress test. I do not have Addison's. But I do have adrenal insufficiency as confirmed by both blood and saliva tests and my adrenals are not producing on their own. I am a stroke survivor and I have a seizure disorder and take prescription meds to control it - successfully enough that I drive again after not driving for 5 years. I have trigeminal neuralgia. And now, I am a cancer survivor. I also have chronic fatigue immune dysfunction and was awarded full disability first go around with Social Security because of its severity; usually it takes several goes and with an attorney. Please do not challenge me here, we are on this board not to challenge each other but to support each other. I say this not just for your comment above, but for other comments. You may not mean to challenge, but when you 'assume', you are supposing something to be so without proof. I would appreciate if you would just ask and not assume. Thank you.
Thankfully I did fine on the week of heparin injections in the hospital and I also took my nattokinase right up until the day I went in and re-started the day I came home. The surgery was 7 hours long. I have had an aide every day until today, my 10th day home. Pains are still high but getting better. We, each of us, has unique challenges and I wish each of you wellness, as much wellness as can be had within the limits of what you deal with.
Hi Leigha, wishing you all the best, and glad to hear about your outcome. We all know ourselves better than anybody else! That also applies to myself. Mary F x
Leigha, I am sorry you thought I was challenging you.
I was simply asking if you had had the test, because then they could hopefully make sure you are on the right meds. I know how hard it is to get a correct diagnosis, and how hard it is to live with multiple medical issues.
I have also seen here, how difficult it can be to get the right tests because medical professionals are happy to consider people as "hypocondriacts" rather than having a genuine disorder. Especially when the symptoms do not fit neatly into 1 hole.
Again I apologise if you thought I was challenging you. That was never my intention.
Thanks Tiggercat..... and excuse me if I was overly sensitive. Perhaps your wording 'gets' me at times, so I won't allow that in the future. The medical establishment challenges me, I think many here can relate to that, although I do have one incredible doctor. And, having just gone through a 7 hour surgery and week hospital stay, am more fed up with the medical profession than ever. There are, absolutely, wonderful and needed operations/medicines/procedures/etc., but the arrogance and ignorance is beyond belief. There is kindness also, and highly skilled professional medical staff, but all in all I feel much still needs to be learned.
Ok, I've had my say. Masterpiece Mystery is soon on, I'm hooked.
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