I can’t believe it is 1 year today since Derek was admitted to hospital for surgery to remove his prostate. The day his life changed forever.
We thought that his diagnosis of prostate cancer was the end of the world. It took a lot of strength to stay calm while waiting for surgery. But life since surgery has been so different.
That is not to say that having Adrenal Failure (Addison’s is just part of the problem, but it is more than that) is worse than Cancer, but the life we now live is far harder than we imagined it would be following the successful removal of the cancer.
What was supposed to be a simple operation, with a 2-4 week recovery has turned into a lifetime of lifesaving drugs 3 times a day, with high risk of hospital admission due to illness/shock. I worry daily about what could cause Derek to become ill.
The trip we took a few weeks ago just showed us how close he can come to a crisis just because something unexpected happens.
We put our trust in a medical system that let us down.
Something I have not made public until now was that there was something that could have been done to reduce considerably, the risk of DIC/CAPS.
Because what happened was such a rare event we wanted to know why it happened, and if there was anything that could have/should have been done to reduce the risk of such a catastrophic event. Apparently there was.
In our search for answers, we found references all over the internet, from hospitals outside New Zealand, that talked about “Bridging” APS patients when they withhold warfarin for a period of time, to reduce the risk of a clotting event. This involves LWMH (clexane) administered by injection and daily monitoring of INR.
Every medical person is concerned about the risk of bleeding out, and that is great because warfarin does create a risk. But NOBODY was concerned about the risk of clots, which is why he was on warfarin in the first place.
Our thought was, did they know about the practice of Bridging with LWMH in New Zealand. What we found out was YES THEY DID.
I found a booklet on line from a New Zealand Hospital that stated that patients on Warfarin were to be assessed as to their risk factors of bleeding vs clotting when having surgery.
When I examined the risk factors, the document put Derek in a High Risk group.
Patients at higher risk of thromboembolism if warfarin is withheld:
(a) Patients with mechanical prosthetic heart valves
(b) Patients who have suffered an acute thrombosis within the preceding 3 months
(c) Patients with a high-risk thrombophilia on chronic anticoagulation (Antiphospholipid IS a high-risk thrombophilia)
These patients should receive bridging anticoagulation in the peri-operative and post-operative period. This can be done in consultation with a cardiologist (a) or a haematologist (b & c).
|Time||Low Risk Patients||High Risk Patients|
They did not do the 2-3 days out from surgery cover, and they never checked his INR during that time so they have no idea what was happening. We do know his INR was around 1.2 when he was admitted to hospital.
His blood results on diagnosis were extremely high:
- PPT – 42.3 sec (24-32)
- Lupus Anticoag – 85.8 sec (32-45)
- Cardiolipin IgG – >150 (>80 considered High)
These three tests together scream extremely high risk of clots. He was a sitting duck.
The booklet I have quoted is from the Capital and Coast District Health Board. This is the hospital that operated on Derek. Their own recommended procedure wasn’t followed.
We do not blame the Urologist that performed the surgery. It was up to Hematology to advise the Anethatist/Surgeon what should be done regarding Warfarin/Heprin withdrawal before, during and after surgery.
The hematology department, when asked about treatment for his Warfarin, SHOULD have looked at his APS results which were in the system and accessible, and assessed him as high risk, and followed their own procedures.
There is no guarantee that it would have prevented what happened, nobody can say for certain it would have prevented it. But it certainly wouldn’t have hurt, and it would definitely have reduced considerably.
We have talked to the surgeon and commented that he wouldn’t want to operate on Derek again. His comment was that it wouldn’t be a problem, he would be given appropriate advice on how to deal with his coagulation management.
That’s when we gave him the news that he was given the wrong advice last time, so why would it be any different this time. He just looked at us. We then went on to explain what we had found out.
Whether he investigates further I don’t know, but we will see.
But for the want of 3 days of LWMH, he might not be on lifelong medication now.
If anyone reading this has APS, and has to have their warfarin with-held for a period of days, letting their INR drop below 2, you must ask your Dr what they are going to do about “Bridging” and if you are unsure, take information along, force them to look at what they should be doing.
Adrenal Infarction is an extremely rare complication in APS, CAPS is an extremely rare cousin of APS, both these things can be are triggered by withholding warfarin and having surgery. Both these things have a 50% survival rate at best.
They are rare yes, but it does happen. We all need to make sure our Dr’s take every precaution possible to reduce the risk of it happening.
It seems, from what I have read from others that suffer from rare conditions, the patients, their careers, and their families, have to take the initiative when it comes to getting the correct care. The more authoritative information we can provide (not from other sufferers, but from medical specialists via the internet) the more informed our own Dr’s will become, and the better the care we will receive.
There are a lot of very good medical authorities out in cyber space that post genuine information about how to treat rare diseases. Check them out and educate yourselves before it’s too late.
We asked about cover while they stopped his warfarin, but we didn’t investigate for ourselves, so blindly accepted their decisions and didn’t question further.
This lack of info on our part also meant that we foundered for 2 weeks afterwards before Derek was sent back to hospital, and I watched him almost die in front of me while we waited for the Dr’s to realise what had happened.
I hope that this blog helps save someone else who might go through this.
Roll on the next year.