Waiting for a Life Line

This blog was going to be about a thing called DHEA. That will come later.

This is more important because I am really annoyed, and need to get it out there. There are lots of others, not only in New Zealand, but all over the world, that suffer this problem.

It’s when you fall through the cracks.

We had it described to us that Derek is one of those people.

It’s like an apple sorting system. The tree grows an apple, that apple is picked. The really bad apples get taken out and put in the pigswill. The rest are then put through different tests/checks. As the apples go through the system, the low grade ones are gradually discarded or put aside for fruiting, juicing, discarding, until all you have left is export grade apples.

Every now and again an export grade apple gets thrown out with the bad ones. It falls through the sorting system and ends up in the pigswill instead of on the shop shelf.

Liken Derek to that apple. He goes through the first check point, and falls off the belt with the pigswill apples, but hey, they get re-checked just in case, so that’s ok. Someone will discover he is actually a good apple, and put him back on the right track.

NO!

He has AGAIN fallen through the system. And I am getting quite mad about it. I should not have to spend my life advocating for him, and fighting the Medical Fraternity to get things done. It’s not that they don’t want to do things, they just keep stuffing up.

2.5 years ago, he experienced a Medical Misadventure and suffered multiple organ failure. They didn’t notice (even though it was pointed out to them) that he suffered a brain injury at the time.

After 23 days in hospital (the first 5 fighting for his life) he was discharged from Wellington Hospital (CCDHB) and handed back to Hutt Valley Hospital (HVDHB). He then spent the next 12 weeks at home.

He was referred to a Rheumatologist for his Antiphospholipid Syndrome (APS), and consequent Catastrophic APS. He was referred to Endocrinology for his now trashed adrenal glands.

He SHOULD have also been referred to Occupational/Physiotherapy, for rehabilitation given that he suffered lung damage, transient heart damage and was laid up for 15 weeks trying to get some form of health back.

He wasn’t. He was examined by the Rheumy who said “keep taking warfarin, you look great, see you in a year”. He was seen by his Endo who said “decrease your HC to what the book says, oh, maybe you could also take fludro as well, see you in a year”.

We went back to both of these a year later. Same thing.

In the mean time, I am becoming more and more concerned about other things that are happening to Derek. Each visit to a medical “professional” I mention that he has difficulty swallowing. Each visit we are told, yes, we need to look at that. We will talk to/refer you to XYZ…

After changing General Practitioners in August 2014, we finally got a referral. On 18 Dec 2014 Derek went for a gastroscopy (read about that elsewhere, it’s a story all by itself). At the end of that visit we discussed with the Endoscopy Registrar the fact that the problem is at the top of his throat, between his mouth and his shoulder line. The Gastroscopy looks lower down.

The Registrar agreed that the Gastroscopy was not going to find the issue, and he needed to be referred to another department. Hang on. Haven’t I heard this somewhere before, MULTIPLE times? The question we were then asked, “did we want the her to do the referral, or our GP?”.

We definitely wanted the Registrar to do it, so we knew it would go to the right department in a good timeframe.

On 2nd Februaray we received a letter about an X-ray appointment. Yay, finally somebody that actually did as they promised, and sent the referral. Now they could do the correct X-ray to see why he couldn’t swallow properly.

WRONG!!!!!!!!!!!!!!!!

This was a repeat X-ray 6 months post his last bout of Pneumonia. When we checked in for that x-ray, I asked about the other one. NO, not in the system, never referred, not happening. Best course of action is to go back to the Endoscopy Dept and ask them what happened.

While sitting in the waiting room for Derek to have his X-ray he received a txt message which I read. Hello. It’s a reminder for an appointment for Monday at Rheumatology. That’s great, but what is the apt for, and why are we receiving a reminder. We have never received a letter telling us about the apt. Oh, did I mention that today is Friday?

After the Xray, we trudge up to Level 6, and ask about the reminder, but no original letter telling us about the apt. “Oh, we send them out about a week out from the apt in case it has to be changed”. That’s fine but again, Today is FRIDAY ,and the appointment is for MONDAY. The snail mail has been delivered today, and there is no letter telling us of the apt.

After this discussion, we trudge down to the ground floor again, and along the corridor to Endoscopy. We are told that the notes say that our GP is to do the referral. “Actually, No. We clearly agreed that the Registrar would do it, so we knew it would happen”. The Receptionist asks us to wait while she goes out the back and tries to sort it.

The Manager of the Dept comes out, she has the referral in her hand, which has been sent to the right dept? We told her that it hadn’t been sent anywhere. There was no record of it on the system.

She asks us to wait while she goes to X-ray herself to sort it. She then comes back and promises she will sort it. We try to explain our frustration at the inability of the system to get it right with Derek EVER.

We leave the hospital with a promise from the Manger of that department, that she will get back to us today regarding the referral.

We have now had a phone call back to say that it has been put on to another department, she is waiting for it to be “triaged” which means some obscure little officious clerk, at some desk somewhere, will put it in the system as “non urgent”, which means they have 4 months to act on it.

While I was sitting in the Endoscopy department waiting for the Manager, I was listening to the booking clerk making a booking. There is no denying that when they get a referral there is a timeframe for which they must make a booking. They DELIBERATELY book you on the last possible date to fit the timeframe. I you are classed as semi urgent and must be seen in 3-4 weeks, they put you on the last day of week 4, even if there are spaces available on the first day of week 3! I actually heard her doing this.

We are due to have another phone call from HVDHB to confirm his booking on Monday. We have been promised (and I have the phone call recorded), that once the decision is made as to urgency, the Manager of Endoscopy will get back to the relevant department and tell them that they need to hurry up and make it urgent.

I then jokingly asked if they had a system in place to make sure that the booking didn’t clash with any other booking Derek might have (he gets lots). I was gobsmacked (absolutely shocked) to find that NO, there is no system in place for that! They have to manually check!   And we all know how many of the booking clerks would waste their time doing that!

So where does that leave us? In the hurry up and wait chair again.

We currently have a Formal Complaint being investigated by the Health and Disability Commissioner about his treatment at CCDHB. Once we have seen the report on that, I will be putting in a complaint about the HVDHB and their treatment of Derek.

Sometimes all the stars align and you sail through life with ease. Other times, all the mud pits align, and you end up sitting in pigswill for years until someone throws you a lifeline.

We are still waiting for our lifeline!

In Dr’s we Trust?

Without really thinking, we do.  They are Dr’s, they know it all.  But putting all your faith in these special people, especially specialists, is not always a safe option.

We have been going around in circles trying to get more things sorted.  Derek’s lungs don’t appear working properly.  He gets breathless quickly, when talking, when walking, when laughing.  He is now worse than he was a year ago.

We used to walk 5.5km in an hour with no stops.  Now he walks that distance in 1 hour 20 minutes and he has to stop.

We are trying to find out why he is going down hill so have asked several medical people to investigate.

We went to a specialist Endocrinologist in June this year. One we have been to several times.   We mentioned this reduction in ability, but it was not recorded.   He spent a short time with us, discussed things, then wrote a letter to our GP.

This is an important letter as it tells Derek’s GP how he is doing currently with his health and his medication levels.

We have recently changed GP’s as our previous one has recently retired.  Therefore the new Dr needs all these specialist notes, to ensure she is treating Derek properly.

At the time of transferring, we decided to get a copy of all of Derek’s GP’s notes from his previous GP to see what had or hadn’t been noted.

What I found floored me.

We all put our faith in the medical profession getting things like medication correct..  But is that faith justified?

To put your all trust in what Specialists say (and they are supposed to be the all knowing Gods of Medicine), has again proven to be very dangerous.  Thankfully this time, we ignored what the specialist wrote, and the Dr didn’t bother reading what the specialist wrote.  Instead, the Dr asked US what medication Derek was on.

What the letter stated as Derek’s medication was  dangerously wrong.  This specialist  is the one responsible for making note of what Derek’s medication should be on a daily basis to keep him alive.

According to the latest letter to our GP (and the one that the hospital would read to confirm dosage) The letter states ….Hydrocortisone is 10 (5 at lunch, 5 at dinner)….

hc dosingThe letter should read 10mg HC in morning, 5mg at lunch and 5mg at dinner.  There is 10mg of Hydrocortisone daily missing.  It is half his daily dose to keep him alive!

If Derek took that low a dose he would not be conscious to take HC at lunch time on the 2nd day.  He takes 10mg in the morning (6am) rolls over to let it kick in, then takes another 5 before lunch time, and another 5mg at 4pm.

Derek has had blood tests done at 8am before his morning dose of HC and it was found that he had a level of  9nml/L in his system, the absolute minimum a normal person should have is 250nml/L.  It should actually be in the 500’s at that hour.  Less than that and you are probably in crisis.

Taking 5mg at lunch time, then 5 in the late afternoon would not be enough to keep him alive for more than a few of days, and those would be a major struggle to stay conscious.

Taking Hydrocortisone is not like eating extra food.  You can’t take your normal dose one day, stay in bed all day, and store it up, to use when needed another day.  It peaks at 2 hours post taking, and only lasts in the system for 4-6 hours.  Once that 4-6 hours is up you start to go down hill until you take your next dose.

Derek cannot get out of bed in the morning except to struggle to the toilet if he hasn’t taken any HC.

And the kicker is, the less HC you have in your system, the quicker you use it up as your body starts fighting to cope, so it use up what it has to function pretty quickly.

So putting on a legal document that he is only on 10mg a day when he struggles to stay out of crisis on 20mg, is a medical misadventure waiting to happen.

NEVER PUT ALL YOUR TRUST IN YOUR DR.  Always get a copy of your medical notes, and check them for accuracy.  They have a habit of not recording everything you say, interpreting it how they want so it fits the book, or just brushing it off.  Or worse, not checking their own notes, when writing to inform others of important information.

There is no excuse for getting critical details wrong when it could seriously harm someone

 

Medical mishap almost killed man

Quote

In my post “One Year On” I stated that we held Wellington Hospital CCDHB responsible Derek’s CAPS event, and that they could have taken measures to prevent it.

After months of investigating, in March 2014 we contacted the CCDHB to tell them our thoughts on what happened.

Several months ago we were told that there was to be a full investigation into the event to see if they could work out what happened.

That investigation is now complete and they have agreed with us that they failed Derek at every turn.

We received a copy of the report 2 weeks ago, but didn’t agree with what it said, and many of the assumptions they made. We went to a meeting with the writers of the report and as a result, they have re-written the report and accepted even more blame.

Under Findings it states:

The review team consider the root cause of the adverse event was communication failure. The final plan was neither communicated to the patient in full in a manner that ensured the patient had received and understood the final plan, nor was his understanding of the plan checked. It was not identified during the admission for surgery that the pan was not being followed as expected.

There is a system in place in all hospitals that, when an adverse event happens for whatever reason, it should be investigated.

Also under Findings:

The review team note that the reportable event was indicated but not entered when it was identified that the patient had developed CAPS and that the anticoagulation plan had not be fully implemented.

In the Cover Letter they acknowledge:

Due to the failures in communication of the plan to Derek, and the lack of detailed documentation in his clinical record, we did not recognise that the intended plan had not been completed until Derek wrote to the CCDHB in March 2014 with concerns.

Our goal in complaining, was to ensure there are processes in place to try and prevent this happening to anyone else. They now have to put in place, set procedures which must be followed.

Hopefully this will not happen again.

At the same time we asked that a very special Dr got mentioned. Her name is Dr Helen Myint, I may have named her before, but we firmly believe it was her diligence that saved Derek’s life.

The final part to their admission of errors, is the public report they must do.  As a result Derek ended up on the front page of the Dominion Post in Wellington.

Medial Mishap

MEDICAL MISHAP: Upper Hutt man Derek Edson developed a chronic illness when doctors failed to note his blood-clotting condition before cancer surgery.

MEDICAL MISHAP:

The medication Derek Edson needed to survive cancer surgery was waiting to be picked up from his local pharmacy – but no-one from Wellington Hospital told him about it.

As a result, the Silverstream resident nearly died, and will now have chronic exhaustion and ill-health for life.

The 56-year-old computer programmer brought a complaint against Capital & Coast District Health Board – one of 454 cases of medical misadventure recorded nationwide in the 2013-14 year.

Because of a pre-existing blood-clotting condition, he should have been taking a drug called Clexdane before his prostate cancer surgery in September 2012. The drug had been ordered and was waiting for him – but he didn’t know.

After surgery, his health went into a rapid tailspin, and his adrenal glands permanently died – a condition known as Addison’s disease. He suffered severe liver and kidney damage, pneumonia and fluid in the lungs. “I kept going downhill.”

On a good day, he crashes into bed at 8pm after a day of work. On a bad day, he is in the emergency department, facing a coma or death within 72 hours.

He said: “I don’t have the initial upset I used to have – I can’t afford to.”

When Will the Doctors Start to Listen

I have written several times, about what happened to Derek, and why. After getting all Derek’s medical records etc, we have now sent a letter to the hospital concerned to let them know what we found out. In all their investigations of why Derek got sick, we were never once asked 1 vital question. Did he use Low Weight Molecular Heparin when they stopped his warfarin for surgery? The answer is NO, because he didn’t know he had to, because nobody told him!

It shouldn’t have taken 18 months, and a letter from us, for someone to ask such a vital question. It should have been asked before he had surgery.

Finally, after getting our letter, we got a phone call from the Hospital, and they asked about it. We pointed out that he had never before been prescribed that drug when stopping Warfarin, only when going back on it, so why would he be this time.

We have since learned about a thing called Bridging. This means that if you have a coagulation condition such as Antiphospholipid Syndrome, then if your Dr, a specialist, or anyone else, wants to take you off your Warfarin, or other Vitamin K antagonists (drugs that reduce blood clotting by inhibiting vitamin K), then you MUST have cover with LWMH (e.g. Clexaine). Before you stop you warfarin for any reason, consult your rheumatologist. We didn’t. We didn’t even have a rheumatologist looking after Derek’s APS. We do now!

What I haven’t written a lot about is the anger I feel sometimes over not so much what happened (don’t get me wrong, I am angry about that) but the way we have been treated, both when it happened, and in the ensuing 18 months.

According to a Dr I spoke to a few weeks ago, Dr’s speak a different language to us mare mortals, and in fact think differently as well. This is not new information. We have all felt it. The interesting thing was that he admitted that they “make assumptions”. These assumptions can lead to death or, in Derek’s case, near death.

When a Dr writes a script for a patient, they assume the patients knows about the script, understands the importance of the script, and therefore will know what to do with the script. It is in the Doctors psyche that, because THEY know all about the script, therefore, so does the patient. It seems beyond their understanding to actually tell the patient the “what, when, why, how long” etc. It’s on the script in code, what does anyone else need to know the info for. What made it worse in Derek’s case was that he was never actually given the script himself.  It was faxed to our local pharmacy, with instructions for the pharmacy to contact us. The pharmacy didn’t have our contact details, and they assumed that we knew about the script being sent to them.

When you have one department giving advice on the need for the script, a second person in a different department writing the script, person 3 organising where to send the script, and person 4 (yet another department)  getting the special authority because of the type of script, it is assumed by ALL that somebody else has told the patient about the existence of the script. BAD ASSUMPTION!

That is not where the poor treatment ends.

When you see your Dr, they have a set routine list of questions they ask you to try and make a diagnosis.  Some of these questions rule out illness, some rule illnesses in.  But all to often the Doctors are tired, thinking about the last patient, or the queue of patients in the waiting room, and don’t have their full attention on you.  To cut down the time you have (normally 10 miutes)  the questions asked are close ended questions requiring a yes/no answer.

Do you have pain? Yes.
Rate your pain with a number? 8.
Where is the pain? My abdomen.

It’s not often that they actually allow the patient enough time for the patient to try and explain how that pain has been in more, or any other symptoms they have had at the same time.

If you have a temperature at home, but not when you get to the Medical person, then you don’t have a temperature.   Because you can walk into the clinic/ER etc under your own steam, you are obviously ok, and not dying.

When they do examine you, they make assumptions because when they are in Medical School they have it drummed into them that “If you hear hooves, look for horses”. That is great because a lot of symptoms are straight forward.

The problem is, what if the hooves they are hearing is one lonely Zebra, in amongst the herd of horses? If they don’t listen carefully to ALL the sounds around them, they may miss that crucial different sound.

For us, that different sound was in the guise of me.

I had been advised to record everything regarding Derek’s recovery from surgery so when we were asked about his history I would pull out my phone and go day by day, blow by blow, everything that had happened. I even offered to e-mail one Dr the details.

When I read the history in the medical notes later, I discovered that half of what we had told them, had not been recorded.  They recorded what THEY thought was important.  The big things, not the little things.  But it was the little things that were the clue to the CAPS and adrenal insufficiency.

For 2 weeks I kept telling people he was not well, it was not normal, and he was worse than he himself thought.

What neither of us realised at the time was that Derek had suffered a brain injury and his cognitive skills were shot.  He thought he had a headache because he was tired, but it turns out it was because he had difficulty thinking and assessing/analysing things.

For 2 weeks they kept asking Derek the same questions. And being a male, he would say he felt fine, yes there was pain, but it was more discomfort, yes he was tired, but he wasn’t well and not sleeping so great (because of the pain for goodness sake, but he didn’t say that) so no more than he would expect.

I on the other hand, was telling them he couldn’t walk 20mtrs without needing to lay down for an hour. He was drinking water, but barely, and then only sips. He was in pain all the time (not discomfort). He would groan in pain, but didn’t tell them that.  Each time I told them something, he would play it down. If they asked him a direct question, he would stop, think, then come up with some answer that was a simplistic personal analysis of how he felt, based on what HE thought they needed to know.  Because I was not the patient, they took more notice of him than me.

Each of the medical personal we spoke to (who didn’t know Derek) would pick another of the horses running around the room and say “Oh, that’s the one I can hear”. None of them seemed to be listening to me and putting the collective sounds together to see the zebra.

I don’t know how to get it through to the medical profession (and better women than me have tried) that when a patient is unwell, they are not the best judge of themselves. And the worse they are, the worse their judgement of their own health is. You need to ask the people that know them best because they are the ones that see the subtle changes.  It’s not just a mother’s instinct about her child.  Wives also have that instinct about their husbands.

Common questions were:

Have you eaten today?   Yes.
(Truth: actually, he took two bites of something and decided he had had enough)

Have you drunk much fluid?   Yes, I am drinking all the time.
(Truth: He is taking very small sips, and it takes him all day to drink a 750ml bottle of water)

Have you got pain?   Yes, it comes and goes.
(Truth: it was there constantly, but at times it was worse than other times.  The pain included a headache which was constant, leg aches, body aches, joint aches, but mainly the abdomen.)

Again, when he was in hospital I hit the same walls. Derek was barely conscious at times, could not hold a conversation, was not drinking water properly, could not stand without assistance, and could not think clearly. Yet still they insisted on asking HIM how he felt. At times he was disoriented and didn’t even know he was in hospital, but still they asked HIM.

At one point I asked a member of the medical staff (I believe it was a nurse) if there had been any brain involvement, and I was told NO, because there was nothing written down about it. Huh? Just because nobody else had noted it, doesn’t mean it doesn’t exist!

What makes me even angrier is that the person I asked didn’t even make a note of the query. I pointed out a “droop” that didn’t used to be on the left side of Derek’s face. No mention in notes about my concerns, so nobody investigated further. The question was brushed aside.

We now know that Derek did suffer a brain injury which still causes cognitive dysfunction at times, given we now know this, how the hell was he able to answer for himself when unwell.  I had to be his advocate, and I wasn’t being listened to.

It Happens everywhere.

According to one publication in the UK in recent years, some child deaths in UK could be prevented if the Dr’s listened to the child’s mother, the person that knows the child best. When a mother’s instinct says a child is seriously ill, they should be listened to. This should apply to the Partner/Spouse of a sick adult as well.

I have become very stroppy when dealing with Dr’s now. If I don’t get an answer I am happy with, I will keep pushing. I request copies of all reports, test results, letters from consultants.

I now keep a medical file, and check the results myself.

I have learned not to trust what the Doctors and other medical staff tell me.  I check everything for myself.

An example of this happening is when Derek had been in hospital for 2 weeks  they had finally worked out what had happened to him and they felt he was ready to be discharged.  They gave him the choice of being discharged home on the Friday and going to another hospital on the Monday for a CT of his Adrenal Glands, or stay as an inpatient  until Monday, but go home on a 4 hour visit on the Sunday.

I refused to let them discharge him and send him home. I said I didn’t want him going home until he had the CT on the Monday. I still wasn’t happy with how he was. I was concerned that his resting heart rate was still too high for my liking but when I questioned it, I was told that it was fine, “it’s because he has been sick!” He seemed to be breathless extremely easily, that he just wasn’t quite right still.

It was a good call. He had a large amount of fluid around his heart which could have killed him. Again, my instincts said leave him there, even though the medical staff were insistent that he was fine.  I was proven right and they were wrong again.

In all of this, we have had 1 Doctor that listened to me rather than Derek. That is  Dr called Helen Myint. She is the one who saved Derek’s life.  She literally went from his toes to his head examining him, but more importantly, she ask ME questions and I actually felt that she listened to me.  It was this Dr that picked up the CAPS, and Adrenal Insufficiency.  Two zebra’s in a room of horses.

I just wish I had asked her about the facial drooping as well, perhaps we might have had the brain injury found when it first happened.  I have since mentioned the droopy left side of the face (especially noticeable when tired), left arm weakness, bad left foot slap which took months of physio to correct to every Dr we have seen, but it took over a year for someone to listen, and accept that yes, there was a brain injury.  Again, the Doctors didn’t listen!

My best advice is, if you think there is something wrong with someone you know well, be it child or adult, don’t worry about pissing off the Doctors, make them listen, and don’t leave until they do.  And don’t be afraid to ask for a second opinion.  You have every right, and any good doctor should value extra input.

It’s All in His Head!

Imagine how you feel when you are trying to get someone listen to you, to help work out what is happening and the Dr you are talking to you tells you that.

For months we have been trying to work out what we should be doing when Derek gets a fright and has an “episode”.  He would get a bad headache, loose focus, be unable to communicate properly, speech becomes slow, it is all he can do to be conscious, as and he has to lay down.

Then when you finally get an appointment with a Specialist and you are told that “it’s all in your head”.

Lets go back to last year………

While Derek was laying unconscious in hospital, I noticed that the left side of his face was slightly lower than his right.  I tried talking to the Dr’s about it, but they didn’t show any interest.

When he left hospital we noticed (I noticed) he had left side deficit in his leg and his foot would slap when he walked.

It took 6 months of physio to fix it to a point where we only notice it if he is really tired.

He also has the issues I recently highlighted where every time something happens he ends up needing to lay down for hours on end.

We have been searching the internet to try and find an answer.  We were sure it was to do with his adrenal glands, and the lack of an Adrenal Medulla, but couldn’t find anything to give us a hint of what it could be.

After our last visit to our GP he finally decided that it needed investigating.  Great.

He contacted Derek’s endocrinologist.  As far as the Endo was concerned, his Adrenal Insufficiency was under control.  He was sure it wasn’t that so he didn’t want to see him.

Derek was then passed on to a General Medical Consultant.  We are not sure how it worked, but the GM Consultant to take the case was  his Rheumatologist.  Great, but could he explain anything/everything?  Would he listen, would he be able to work it out.

Apparently yes, his explanation is that “it’s all in his head”.

The Dr confirmed that Derek’s Adrenal Insufficiency is under control.  He is on the right dose of Hydrocortisone, he is on the right dose of Fludrocortisone.  Using clinical observations, he could confirm that the petuitory gland was fine, blood tests confimed his thyroid glands were working properly.

As the Dr sat there listening to Derek’s symptoms he asked a lot of questions and made lots of notes.  The most interesting thing is that he LISTENED.  He didn’t just pay lip service to what we were saying, go aha, ok, then say, Don’t know, go away.  He asked for clarification of each individual symptom.

The whole appointment took 1.5 hours.

At the end of it, the conclusion was “forget everything from the neck down.  We will focus on your head, that is where the problem is.

I.e., “IT’S ALL IN YOUR HEAD”

THANKYOU!!!!!

Finally we are being listened to.

What the Dr explained is that once you put the fact he has no adrenal glands aside, all the symptoms that are left can be very easily tied to traumatic brain injury.  The same type of injury you see in car accident victims, head injury victims etc.

Derek is now being booked in for an MRI and a neurological exam.  The Dr believes that there was probably (in fact extremely likely) brain involvement with the CAPS last year.

They may not be able to prove through an MRI that there is damage, but a neruo exam will help.  He seems convinced however, that it has happened.  He did warn us that we may never be able to fix the problem, it may or may not get better, if it does, it may take up to 5 years to see any improvement, but we don’t expect to see it back to normal.  That is fine.  At least we will have an answer.  Somebody is taking the time to confirm what that there is a problem, and what the problem is.

We will finally get an answer.

We will then have to learn to live with whatever the results are, but that would be no different to what we are living with now.

“it’s all in his head” is a good thing.  Brain Injury not so good, but we can work with that.

1 Year On

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
Before Surgery
  • Withold warfarin therapy 4-5 days before surgery
  • The night before surgery: If INR>2, give 1-5 mg vitamin K1 IV.
  • The day of surgery: If INR ≤ 1.5, surgery can proceed. If INR > 1.5, defer surgery, or if surgery is urgent, give Prothrombinex-HT (25 – 50 units/kg) plus 150 – 300ml FFP or 10 – 15ml/kg of FFP if Prothrombinex-HT is not used.
  • Withhold Warfarin therapy 4-5 days before surgery
  • 2-3 days before surgery: start giving once daily or twice daily treatment doses of enoxaparin SC (refer to: Therapeutic Anticoagulation with LMWH) or UFH IV infusion as per protocol (without bolus dose).
  • If using enoxaparin, the last dose (maximum dose 1mg/kg) should be at ≥ 24 hours before surgery. If using UFH IV infusion, it should be discontinued 4 – 6 hours before surgery.

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.

When Boring is Good

Boringmonotonous, tedious, irksome, tiresome, humdrum. These adjectives refer to what is so uninteresting as to cause mental weariness.

Just imagine waking up to the alarm, getting up and doing a couple of chores, having a shower, getting dressed, having breakfast, getting in a car, and going to work.  You work all day, then come home.  You help cook dinner, maybe even do a few light weights, then sit down for a while working on the computer.  9.30 you finally go to bed for a good nights sleep and repeat the day.

Most of us take for granted that this will be our day.  We think it would be nice to have something “exciting” happen.  For us, this IS exciting, because it is so “normal”.

It is now almost 3 weeks since Derek got supplied a Taxi to and from work.  Taking just that bit of stress out of his day has made all the difference to his health.

Last Saturday night we went to watch Phantom of the Opera. He woke up the next morning feeling tired, but so did I.  We didn’t get to bed till late so of course we were tired.  No extra HC needed, no feeling that he was going to crash at any time because he was under medicated.

As long as the Taxi Service is continued through Winter there is some hope that Derek will be able to get some of his fitness back, and therefore be able to improve his all round health.

Our next challenge is to try and again reduce his daily medication from 10/10/5 to 10/7.5/5.  I don’t believe he will ever go down to 5 at lunch time, but 7.5 may be a possibility.

It’s been “boring”.  But “boring” is good.  He has even driven short distances twice.  Only time will tell, but we have time.