I have a cure for Addison’s

tui ad(Those of you that are from New Zealand will understand this ad, for others, it’s about the “Yeah Right”.  Basically, it means what is on the left, is a complete fabrication.)

I belong to several on line support groups for Adrenal Insufficiency (Addison’s Disease) to both help others with Adrenal Insufficiency (AI) and to get assistance with questions Derek and I have about AI.

One thing that annoys many who have struggled to get a true diagnosis, and the correct treatment for AI once diagnosed, is the people that post that they had AI, diagnosed by this herbalist, or that naturiopath, or some Dietitian with a Dr in front of their name and even once by a chiropractor. None of these people have access to the correct blood tests for a definitive diagnosis of either SAI or PAI. They then tell everyone how they have had this miraculous cure by neck manipulation, taking this herbal mixture, or that vitamin concoction, or eating this menu of food. They then try to convince those who have the condition, to stop their steroids, take these natural cures, and they will be cured. “Here, read this, it will fix you.”

If you truly believe you have this condition, go to the UK Addison’s Disease Self Help Group for a fantastic resource on how to get diagnosed, and treated.  Some people have difficulty finding a Dr that understands blood tests enough to correctly interpret the results, or that put their symptoms down to anorexia, depression, psychosis etc.

Here I am talking about, those who come in asking about everyone elses symptoms, so they can copy them, to make it sound like they have the condition.

I have also had people come to me personally and tell me that they heard about a natural cure for AI.

Some of the sites they refer you to look like genuine medical sites. They even claim to be by Dr’s.

And that is not to say that the “Dr’s” don’t have a Doctorate. One particular one has a Doctorate, but in fact it is in nutrition. But he has developed a great, natural cure for AI. He is not a medical practitioner, can not do blood tests (and does not recommend blood tests). He is a multimillionaire by selling “snake oil” aimed at those with “Adrenal Fatigue”.  Unfortunately people thing that Addison’s is simply Adrenal Fatigue and can be cured naturally.

Another such site was posted on one of the support groups recently. Not to encourage us to use the cure, but in share frustration that the member posting it, had yet again been told that they can stop taking steroids, and just eat natural herbs, vitamins, and other cures.

I have also heard someone was told that they could go through a IVIG (immunoglobulin exchange) and they could stop their steroids because fixing the immune system would fix the already damaged Adrenal Glands. Fixing the immune system is great, and can stop an inflammatory attack from doing further damage (it even be used during CAPS), but it will not repair the damage already done.

AI does not only last while you are suffering an attack by your immune system, it is the resultant damage. Even once the attack is over, the damage is permanent.

Sadly some people believe these sites, and can end up in Hospital, fighting for their lives.

The cure this week: Vitamins, Liquorice and Green Tea. (Warning Signs Of Adrenal Insufficiency And Natural Methods Of Treatment)

The issue I have with this one isn’t taking vitamins, it isn’t eating liquorice, or drinking green tea. All of things, in moderation, can be good for you.

The issue is people miss quote research, meaning their solutions can be dangerously wrong.

Grapefruit juice and licorice increase cortisol availability in patients with Addison’s disease: Paal Methlie1,2, Eystein E S Husebye1,3, Steinar Hustad1, Ernst A Lien1,2 and Kristian Løvås1,3

This study looked at the effect of Grapefruit Juice and Licorice on Cortisol.

Conclusion Licorice and in particular GFJ increased cortisol available to tissues in the hours following oral CA administration. Both patients and physicians should be aware of these interactions.

The most important thing about this study (which is what people use to say stop the cortisol and start eating licorice) is that it helps prolong the life of the cortisol in your body.

This sounds great, but it has been shown that over eating of such things as licorice WILL cause other medical conditions especially in Addisonians. The reason. Addisonians (especially primary) suffer from high potassium which must always be kept under control and licorice can decrease your potassium levels.  But there is a warning out there “Despite its apparent use in a few clinical scenarios, the daily consumption of licorice is never justified because its benefits are minor compared to the adverse outcomes of chronic consumption.” (Licorice abuse: time to send a warning message. Hesham R. Omar,)

The catch?   To help extend the life of cortisol in the body, you must first HAVE cortisol in the body. Addison’s Disease/Adrenal Insufficiency means you no longer naturally produce cortisol. What you have in your body is what you take via replacement therapy. With secondary AI you may actually produce a little, but not enough to live. It doesn’t mat­­ter if you don’t have a math degree, you should still know that 0 x anything will still be 0.

Are you getting the point yet?

You can’t increase the effect of something you don’t have. For this particular website to say you should stop taking steroids and start taking their “cure” is actually dangerous.

Education doesn’t always work

As said earlier, I have very recently been the victim of this myself. I spent some time explaining to someone, the problems with Adrenal Insufficiency, what it was, what Derek had to take to stay alive.

I have now been told twice by this person that natural treatments will fix Derek. I should get him off all his medication, and give him “Adrenal Support”, which I discovered when I looked up the product I was told about, was in fact animal adrenal glands with other herbs and vitamins.

Wow, if only. Unfortunately this was the “cure” from 1890’s to 1950’s when they found Hydrocortisone allowing Addison’s sufferers to actually be able to get out of bed (although some still can’t), a lucky some to work, and if lucky (and the medical profession don’t kill you first) to live a longer life.

I am sure I have said before, hydrocortisone is not a Cure for Addison’s disease. There is no cure. Hydrocortisone and fludrocortisone are what is currently used to keep the Addisonian Patient alive. The average Life expectancy is now found to be reduced on average but a lot longer than in 1942 when it was still less than 2 years and where if you had to have surgery, got an infection or even a tooth extraction, it would probably kill you.

Why, oh why, would anyone go backwards to “natural cures” that would if you were really lucky, keep you alive (but in bed and in pain) for no more than 2 years over the synthetic hydrocortisone that is available today.

If you are reading this please DO NOT tell your friend who has Adrenal Insufficiency, either primary or secondary, that you have read about a cure. You will only achieve 2 things.

  1. The loss of a good friend (if they were one to start with)
  2. Manage to make yourself look stupid.

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!

Frog in a Well

frog

Did you ever go to a dance and try to slow dance on a crowded floor with the aim of just getting from one side of the hall to the other? Have you found that each time you moved in one direction, you ended up further back than when you started? You are moving, and think you are going forward, but when you look up from focusing on dancing you see that you have moved in the wrong direction?

This is what it can be like with Chronic Illness.

Derek has been trying to get his fitness up. Each time he tries, he gets sick, either a cold, general fatigue, pneumonia (this last one). It takes a long time to recover from each illness.

The problem is, he takes 1 or 2 steps forward in his fitness, and bam, he is knocked down with something. It then takes him a month to recover enough to try and get fit again. The problem is, that month has not only taken away the fitness he had achieved, but it has also wiped out another part of what little he had started with.

For example, we have recently bought him a Fitbit. It’s a fancy pedometer.  We set it so that each day Derek must do 6000 steps.

When he began, he could easily do 5000, and had to make a little effort for the last 1000. He got pneumonia 4 weeks ago. He went from doing 6000 steps daily to nothing for 3 weeks. Now he is struggling to do 4500.

You see, he is swimming against a strong current. He is not only having to start again, but he is starting a little further behind where he was. And the more he tries to get back to his 6000, the harder he has to push himself, and the more chance he has of getting sick again.

This doesn’t mean we are giving up. He is doing other things to try and improve his leg muscle tone even when he can’t get out and walk far.

I read a post by a teenager with 3 Chronic illnesses today who was talking about the fact he may not be able to do his chosen sport of boxing any more. He likened it to Muhammad Ali who, when knocked down in a fight, and everyone thought it was over for him, Ali got back up, took one punch at his opponent, and knocked the guy out. He had decided that being down for the count was not for him. Nor was it for the brave teenager.

And that is what most people with Chronic Illness do every day. Something sucker punches them, they lay there for a minute, take stock, then get back up fighting. They may not have a lot left to fight with, but sometimes it only takes one punch to win the fight.

The battle still goes on, one fight at a time.

As Derek and I dance on this dance floor of life, we dodge some things, we get blocked by others, we get pushed backwards by yet more. But eventually we WILL make it all the way across the dance floor.

 We won’t dance around the floor because even moving forward you end up right back where you started from and where’s the challenge in that. It seems a wasted effort to me.

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.

What Happens When Doctor’s Don’t Know Everything.

Over the last year one thing has become very clear.  Dr’s don’t always know everything.

We recently went to our Dr to ask about the fact that Derek was not feeling great.  After being told several times that he should not be taking extra Hydrocortisone just because he was feeling fatigued, or unwell, or had a ball of gastric wind under his ribs.

Because of this, he stopped taking the extra “stress dosses” of HC and began charting his BP instead.  After 6 weeks of readings at 4 times each day, we went to the Dr.

We found that his BP will go into a clinically Hypertensive range of 154/96 with a 68 heart rate one day and clinically Hypotensive at 94/59 HR 101 the next.  Just the effort of standing, and the change of position could have his pulse rate jump by anything from 40-60bpm (up to a 90% increase), where it should only increase by 20%.

Derek had been trying to get back to a semblance of fitness, so we organised through ACC, to have a schedule of fitness sessions with his Physiotherapist.  The physio was doing the starting assessment, and found out about the problem with his BP and would not touch him without clearance from the Dr.

Armed with the readings from the previous 6 weeks we went along to the Dr to ask if he knew what was happening and why.  The first thing he did (and all kudos to him) was to admit that Derek was the one and only “Addison’s” Suffer he had ever dealt with, and didn’t know that much about Adrenal Infarction and the complications of it.

He looked at Derek’s medical records.  The Endocrinologist had written that at some point, and probably without warning, he would need his fludrocortisone increased.  So it was decided that perhaps a change of Fludro from 0.05 to 0.1mg per day could work to stabilise it.

Home we went, armed with the hopeful knowledge that it was the fludro out of sync that was probably causing the large difference in BP.

We tracked his BP for another week.  There was definitely a change in pressure and heart rate.  It continued going higher during the day, but falling further overnight.  It had also become more erratic.

OK, so 0.1 wasn’t the answer.  So go back to 0.05 but twice a day.  We had seen on various forums where others had had some success with this option.

Another week of tracking and another change in BP (or not).  Still heading upwards during the day and downwards at night and still no real pattern for week days and weekends.

We returned to the Dr with this new information.  He agreed that the extra fludro wasn’t doing anything positive so we should go back to 0.05.

He also had the results of some blood tests.  There was nothing markedly different from last time.  Kidney’s still not at a great level, everything else seemed fine.  Potassium and Sodium all comfortably within range.  Thyroid a little wonky but he has no adrenals so it is not unexpected, and not sounding an alert.

The Dr agreed that it was time to refer him back to his Endocrinologist and to a Cardiologist.  So we now wait for an appointment.

While we wait however, we don’t just sit here doing nothing…..

And the mystery continues.

Along with his BP and HR issues, he also can’t take a fright/shock or be startled now without “crashing”.

We decided we needed to get to the bottom of it.  Thinking it was BP related we went out on Saturday to go for a drive, taking the BP monitor with us.  One of two things was going to happen.  Either nothing would happen to cause him an adrenaline rush, or someone would do something to force me to break quickly and sharply, which would give Derek a fright, and I would get an adrenaline rush.

Thankfully the latter happened.  Derek was on the phone, and didn’t see the car in front of me that started to pull into another lane, and then started driving in both lanes, blocking everyone.  I had begun to speed up as we were going 20-30 km under the speed limit.  A little late, I realised he wasn’t pulling all the way over, and I braked harder than intended.  I got a little adrenaline rush as I thought for a brief instant, that I may hit him.  I felt my heart start to beat a little faster and harder.  I got a tingly feeling around my chest.  I am sure we have all felt it.

I asked Derek how he felt.  I could tell immediately that he hadn’t had an adrenaline rush.  It was obvious that it was going to be another drop.  I continued driving for about 2 minutes, until I could find somewhere safe to pull over.

We took his BP and pulse.  It was perfectly normal.  Almost TOO normal. His pulse was in the low 60’s.  Yet we could see, and he could feel, the usual symptoms.  Headache, feeling slightly ill, couldn’t keep his eyes open, felt weak, his speech went quiet, it slowed down.

We continued home (5 minutes away) and checked his BP when we drove in the drive (before he got out of the car).  It hadn’t moved.  His pulse was the same and his BP was within 2mmgh/l of the first reading for both systolic and diastolic.

We continued checking it every 10-15 minutes for an hour.  I had to wake him to do it as he went to bed and just lay there, unable to talk, or really communicate.  Still there was no change in his BP or pulse.

We are none the wiser.

So we are going to try his glucose levels next.  The problem is, we have to wait to see what happens with a fright.  Unfortunately I can’t just make a very large sudden noise and frighten him myself, as tempting as it might be.

We have done a lot of reading on the topic of the Adrenal Medulla and epinephrine/norepinephrine.  There are definite links to these hormones and stress.  There doesn’t seem to be a lot of research into what the effect of not having an abundance of these hormones does.

Adrenal medulla

The inner part of the adrenal gland is called the adrenal medulla. The adrenal medulla produces hormones called catecholamines such as adrenaline and noradrenaline. Catecholamines play a role in the response to acute or sudden severe stress, for example during life threatening event.

Catecholamines are responsible for the palpitations (racing heart), sweatiness, widening of eyes and shakiness of the hand when faced with sudden fear or other stressful situation.

This information is all over the internet.  What we can’t find is what happens when this process doesn’t happen properly and you don’t get the palpitations, sweatiness, etc with sudden fear or stress.  Does the body skip to the next section (rest and digest), or is it part of the process fails but another part kicks in, and then is not switched off because again, the Medulla has failed it’s job.

It is very hard when you have a rare condition, one that is so rare that little research has been done.

If we could find an answer to what is happening when Derek faces the sudden stress perhaps we could find a way to reduce the impact but the Dr’s don’t know and we don’t know how to get them to investigate.  In the meantime, we are having to do it ourselves.

Dr’s don’t know what to do with Derek.  If anyone has an answer please let us know.

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.

One Size Dose NOT Fit All

If there is one thing we have learned in the last 9 months it is that where Adrenal Insufficiency (Addison’s) is concerned, One Size Does NOT Fit All.

We have met other addisonian’s on line, from NZ and other countries.  They are all different in how they manage their condition, how much Hydrocortisone they take, or which other corticosteroids they take to replace their Cortisol.  It also varies on when they take it, when they “stress dose”, why they “stress dose” etc.

Derek is slowly learning what works for him.  We ask others with more experience what they do, and then work out if it could be of benefit, either by trialing, or by “assessing the benefits”.

One thing we have found out is that “Stress” is different for everyone.  Derek finds it stressful getting to work in the morning.  Since he has had a Taxi to work, he is feeling a lot better.

He also finds meetings where he is not the person with the knowledge and experience, can be extremely stressful.  When he is in a meeting at work, or with a client discussing their needs for individualised versions of  his Security software, he is in control, he knows what he is talking about, so he does not get as stressed and can normally manage such meetings without “stress dosing”.

When he is in a meeting with  someone where they “have the upper hand”, or they are controlling the meeting, it is a lot more stressful.  A Job interview, a phone call to make a complaint as a consumer etc, are all stress triggers for him and he needs to Stress Dose.  Others find just dealing with their Dr causes high stress levels.

We have also found that the standard “You are this height, take this dose” also doesn’t fit everyone.  In fact, it’s a shame the Dr’s don’t realise it doesn’t fit anyone.  There is no consideration for what you do for a living, what your home life is like, what other medical conditions you may have that your body is working hard to control.

And then, just for the heck of it.  Something happens (like you get older) and you have to change the amount you take because your circumstances have changed.  You no longer have to get yourself to work, your have moved into a house with no garden work to do, you get a pay rise so can get a house keeper, your kids leave home (one day please).  Any thing can change your routine to a point where you need to take extra, or, if you are lucky, can reduce what you take routinely.

Addison’s, like many, is a hidden condition. You don’t know someone has got it unless they tell you, or they collapse in front of you.  On a good day, they look “Normal”, on a rough day, they look tired, on a bad day you don’t see them because they haven’t got out of bed.

The only time you would notice it is if they are in a stressful situation or they have overdone things and they start to “crash” in front of you as their cortisol levels drop, their blood pressure drops, their ability to “function” drops.

I have watched this happen with Derek recently.  He was fine, talking, thinking, interacting, with life and zeal.  I turned to look at him and I could see him going down in front of me.  His speech had slowed, his eyes were a little sunken, he looked like he had been through the mill.  He decided to get up from his seat to get some more HC and found it hard to stand.  His blood pressure had dropped.

It can happen quickly.  The good news with this event is that when it happened, he took the extra HC and an hour later he was feeling better.  He woke up the next morning feeling well enough to go to work.

The speed an Addisonian recovers from stress is proportionate with how they are feeling pre-stress.  If they are unwell, it will take a lot longer to recover than if they were feeling good before hand.

A Catastrophic Event – Part 4

When we left Derek, he was sitting in a new room, having been moved to a “transit” area awaiting release on the Monday after 1 final CT of his Adrenal Glands.

The ward was mainly for neurological patients (strokes etc), so there were no TV sets.  To save him from boredom, I took Derek’s Laptop in for him to use, along with some DVD’s to watch.

He spent Friday night in the room.

Saturday was quiet.  He still didn’t feel like doing much, so just sat around, watching DVD’s, playing card games etc.

Sunday morning, I drove in quite excited.  He was coming home for lunch, and then heading back in in time for dinner on the ward.  I took some clothes in for him to put on.

I got to his room, and he was having a shower.  He came out looking tired, but happy to be getting day release (he had obviously been behaving himself).

I drove him home, watching him very carefully.  I was nervous.  He still didn’t look great and had almost died on me.  I wasn’t taking any chances.  I made sure I had his emergency kit that we were told to put together.

We had a quiet time at home.  Derek sat on his chair in the corner with his legs up.  He tired easily, but that was to be expected.

After watching TV for a while, I decided it was time to get him back to hospital.  Once we got there  I tucked him in for the  night and left, knowing I would be taking him home the next day.

Monday 29 Oct

I arrived at the hospital that morning by 9.00 am.  Derek was taken down by wheelchair for his CT scan.  He was away for about half an hour.  While he was gone, I packed up all his stuff, got out his going home clothes, and prepared for a quick exit.

All we had to do (after 2 weeks of sitting by his bed) was wait for the Dr to come in and say “yes, you can go home”.

We waited…..

And we waited……

An hour went by, and we still waited.

Finally the Dr arrived.  He pulled the curtains around the bed for privacy (as they always do).

“Right” he looked at us both.  “As you know we were looking to see what state your Adrenal Glands were in”.

He went on to tell us about the fact they showed bilateral bulky adrenal glands.  Much as we expected.  So it meant he would probably have permanent Adrenal Insufficiency.

“So we can go home now?” I asked.

“We need to refer you to the Hutt Hospital to be monitored, and managed”

“So we can go home now?”  again I asked.

“We also had a quick look at some other things while doing the CT.”

“What about going home?” I am beginning to get a bit concerned at this point.

“I’m really sorry”

I looked at Derek, then at the Dr.

“There seems to be a problem with your heart”

“Oh, for f…. sake” was all I could say.  Derek just sat there, quiet.  We both knew what was coming.

“We need to do another echocardiogram.  It looks like fluid around your heart, which explains the high heart rate.”

We were told he didn’t know when Derek would have the echo, but he was to remain on the bed while he waited, it depended on how busy the bedside echo tech would be.

An hour later the Dr comes back in.  There is a significant amount of fluid around the heart (a dangerous amount).  He is also developing fluid around the lungs again because of the pressure on the heart.

Complete bed rest!  2 hourly ops, peeing in a bottle, not allowed out of bed.  He isn’t even allowed to use the laptop.

He was to be moved back to cardio as soon as they could find space for him.

The put him down to have the fluid removed from his heart on the Tuesday, but (and with Derek there is always a but) they have worked for 4 days to get his INR to a therapeutic level and they now have to take him off warfarin, give him a vitamin K mixture and use hepron to reverse their hard work they have done BEFORE they remove the fluid.

He also showed signs of tempanade on repeat transthoracic echocardiogram (TTE).

3 hours later a nurse and an orderly from Cardio arrived on the ward to escort him down to the Cardio monitoring ward.  They wouldn’t let him go on his own, with just an orderly as he was not in a good state.

They also had him back on a heart monitor.

Tuesday 30 Oct

They took Derek into a treatment room of the Cardiothoracic ward to put the drain in his Pericardial sack.  It is a procedure that is not often done in a calm, quiet way, so being a teaching hospital, there were a number of requests to observe them doing the procedure.

Once the drain was in place, they bought him back to the room.  He was conscious throughout the whole procedure.  The fluid began draining from his heart.

Now he had to wait.  They were draining it for 24-36 hours, to see how much fluid would drain.

Wednesday I arrived at the Hospital to see about a litre of bloody fluid in the drain bag.  There should be around 15-50 mls.  A litre was a lot more.

Thursday 1 Nov

The drain was taken out on the Thursday.  It was a very long tube, and they simply cut the stitch holding it in place, and then started pulling.

They moved him into a side room with less monitoring, and informed him he  would be in over the weekend because they wanted him on a Hepron infusion for 2 days while they put him back on warfarin.  All things being equal he would be home on the Monday.  Hmmmm. We had heard that before.

Saturday 3 Nov

I arrived at the hospital to have Derek tell me that his heamoglobin was low, so he needed a platelet transfusion.  Just after he told me about it, two nurses came in with a bag of platelets.   He still had the Hepron infusion in his left arm, so they put the blood in his right arm.  He lay there with an arm stretched out on both sides of the bed, stuck, while they pumped both products into him.

Tuesday 6 Nov

They decided to wait until Tuesday to do another TTE.

Thankfully there was no more buildup of the pericardia effusion.  All being well he was finally going to be released from hospital the next day.

And so the worst is over.   He was released on 7 Nov.

 

Now for a new path.  That of the Addisonian. 

A Catastrophic Event – Part 3

We pick up the story on Friday.  Things were going down-hill ………………………….

The only reason I know what was happening was because I was told by some wonderful people on a Ladies Prostate Cancer forum, that I should record everything that happened with his treatment, and after care, for future reference.  I didn’t realise then, how important it would be in saving his life.

 Friday 5th October
D
erek had an appointment at Urology at the Hospital.
His catheter was removed.  He had had diarrhea for 24 hours.

We asked the Surgeon about the rash on his back. He told rash he didn’t know about rashes and just left it at that.  We then mentioned the bad gastric wind, pain, being unable to do anything.  He said that recovery from surgery was sometimes very slow with 2 steps forward, 1 step back.  We couldn’t make him understand that there were no forward steps, each day was a step backwards.
He told Derek to stop all meds.

 Saturday, 6th

Derek woke to a lot stronger pain in abdomen. He still had very loose bowels.
I gave him Panadine twice during the day for the pain. His stomach was becoming very tight and swollen.

 Sunday 7th:

I forced Derek to walk to end of street hoping that his wind would ease.  Each time he got up to walk around he would burp.  It was relentless.  But it didn’t ease the pain.  The ball of wind was under his ribs. He felt weak and dizzy when he stood up, he would have to sit down again.  He couldn’t stand for more than a minute or two.

The pain and swelling was so intense that I phoned a medical help line to see what I should do.  They told me to take him to an out of hours medical clinic for assessment.

His stomach was distended and painful to the touch on the right side.

He was given Omeprazol 20 mg 1 bd to reduce gas and told to go on a liquid diet for 2 days.  By this time he wasn’t eating, and was starting to lose weight.  He was also told to increase fluids and take panadole.  He also had indications of a throat infection (red and swollen, similar to the rash he had on his back.

 Monday 8

Derek would only get up to try and reduce the wind.  The omeprazole would work for a short time, but not completely.  The pain was worse.  He could not stand apart from getting himself to the toilet. He was now in bed most of the time.  He wasn’t even able to sit/lay in his chair in the Lounge.

 Tuesday and Wednesday were pretty much just a worsening of previous days.

 Thursday 11 Oct

Derek started complaining of Groin pain (described as “Like a stick being shoved between his scrotem and anus.”   It was bad enough to get him taking a lot more Panadine.  He could not get comfortable, he still had a temperature.

He had now developed a strange rash around his neck.  It was very red, raised and blotchy.  It stayed for several days.

He had an INR in the morning which came in at 6.5.  He was ordered to stop Warfarin.

 Friday 12 Oct

I took Derek to the Dr again.

We were sent for blood tests.   His temperature at the Dr’s was  37.8.  We kept giving Panadol, but it would not come down.  It rose to 37.9 an hour after taking Panadol.

His INR was down to 4.5

 Saturday 14 Oct

Derek went for another INR.  We left the lab and took the lift to the ground floor, walked outside to the car, which I parked right outside the doors.  Derek stopped before he got in the car.  He noticed a strange sensation.  He lifted his sleeve to see blood streaming down his arm.  This had never happened before.  Normally when he had an INR test, he would have a couple of drops on his arm and that was it.

Derek’s temperature continued to go up and down all weekend.

His Stomach was very tight, swollen, and painful.  The pain kept increasing.  He was completely bed ridden.

 Monday 15 Oct

The pain was at 8/10.  He Vomited at 3.30pm.   He hadn’t had any sleep Sunday night due to pain, high temp etc.

 Tuesday 16 Oct

He vomited at 3.30am.  Later in the morning he vomited again twice.

He described the pain now as 9/10.  I phoned the Dr for an urgent appointment.

I managed to get him to the car but it was not a good trip to the Dr’s surgery.  Every corner I went round caused major pain.  He could barely stay conscious.  He could not hold his head up.

The Dr examined him and said it was time he went to Hospital (finally).  I told him there was no way I was driving him there.  It had been bad enough just driving him to the Surgery.

The Dr agreed and phoned for an ambulance.

He was given Morphine and fluids during ambulance journey to Hospital.  By the time he arrived at the Emergency Department he described the pain as down to 5-6/10 (on morphine).

His stomach was very swollen by now, he had dry cough, and was barely conscious.  His blood pressure was very low, but his pulse rate was up.

They took a chest xray to see if he was bleeding into the abdomen and admitted him to the Urology ward thinking that it was all to do with the surgery.  He had a partially collapsed lung and possibly pneumonia.

I left late that night as I didn’t know what was wrong, and I was very concerned.  Derek looked very unwell.  He was in a lot of pain, he wasn’t drinking.  They put him on a drip for fluids, a drip for antibiotics and were trying to settle him in for the night.

 Wednesday 17 Oct

I got to the hospital in the morning and Derek looked worse.  His blood pressure was way down, his heart rate was up, he was now on oxygen and there were people coming and going constantly.

They decided to do a CT scan.  They couldn’t find any fluid in abdominal cavity.

What they did find was a Small amount of fluid on the lungs (plural effusion) and something in the lungs, which they thought was probably from the fluids being given.

Urology couldn’t find anything wrong on that side of things so they decided to call in some other people.

The case was being referred to General Medical for consultation.

I walked past the Nurses station at one point to see a group of Dr’s talking.  Apparently they were all there discussing Derek.  The list of Dr’s were:  Urology, Heamotology, General Medical, Infectious Diseases and Cardiology.

I heard a comment from someone who asked “Where was he diagnosed with Antiphospholipid Syndrome”.  I knew immediately that this was a problem, because it meant they didn’t know anything about his blood counts for IgG or Lupus Anticoagulant.

A female Dr came into the room and I immediately recognized her voice.  I asked her if she was the one querying his diagnosis and she said yes.  I told her exactly when and where he was diagnosed.  She admitted there was nothing on his notes (which there should have been because of his surgery), and she went off to check on the diagnosis.  We never saw her again.

 Thursday 18 Oct

Derek was deteriorating.  A General Surgeon Registrar came around at 11.30 Wednesday evening.  Derek doesn’t remember much of the visit.  All he remembers is something about a Heart Murmor and being rushed off to have something done.  He couldn’t remember what.  He is now to be seen by a Cardiologists as he didn’t have a heart murmer when he was admitted on Tuesday.  His Treponin T ‘s were elevated.  He had an Echo for Heart Issues.

He was moved to CCU due to concerns with his heart and his increasing TT’s.  They removed fluid from his plural sack for testing.  They were also considering pancreatitis as a possibility.  He now had Kidney issues as well.  They were failing.

They had noticed in one of his CT’s that his adrenal glands weren’t quite right, but they dismissed them as not crucial because he had:

  • Heart Failure
  • Partial collapse of one Lung
  • Plural Effusion
  • Worsening Kidney Failure
  • High readings of his Liver enzimes
  • Splinter hemorrhages in his fingertips,

All Fluids were stopped as he was not processing them properly and he was begining to swell.

They changed his Antibiotic to vancomycin IV.  He was was taken for another scan of his heart, and an internal probe to see what they could find.

By this time he was barely conscious, not able to wake up.  If he paused to think about an answer to a question, he would lose consciousness and not know what he was trying to say when he came too again.

I was offered a chair to sleep in beside his bed in CCU.

 It was at this point that our GP phoned me to make sure I realized that he was probably not going to survive and I should be prepared for the worst.  Nobody else was willing to say it, but I knew the truth.

 Friday 19 Oct

Friday was a further few steps downhill.  He didn’t know me all the time.  He was taken for a Transesophageal echocardiogram (TOE) to see if there was an infection in the heart valves.  This came back clear so they couldn’t explain the heart failure.

When he came back from the TOE he didn’t know where he was. Disoriented. He tried to remove his IV lines as he thought he was home.  He thought he was in England, then at University.  When asked how he was feeling by one of his Drs his only answer was “I don’t have enough data for that” and he lost consciousness again.

GENERAL MEDICAL had taken over the case, but he remained on CCU.  He was also give a PARS nurse (Patient’s at Risk).  They are the ones that make the call to take people to ICU.  CCU wanted to keep him there because of his heart so the PARS nurse came in every two hours to monitor him.

They did a blood test and found that his Cortisol levels were dangerously low.  He was given IV hydrocortisone.

He showed some improvement within a couple of hours.  I was happy going home for the first time all week.

 Saturday 20 Oct

I arrived in the morning to find him slumped over in bed.  He looked terrible.  His temp hit 40 during the night.  His BP at 7.00 am was BP 84/56.

By 9.30 am it was 91/59.

He was very confused, could not sit up, going down-hill again.  He was given more HC.

 Sunday 21 Oct

I arrived to see a slight improvement. He was able to retain information

He continued to improve over the week, and was still receiving Hydrocortisone.

He was taken off the heart monitor, oxygen etc and moved from CCU to a general Cardiothoracic ward on Tuesday.

 Thursday 25 Oct

Derek was given a ACTH Stress Test on the Thursday morning.  This involved stopping the HC the night before.  They took a blood test at 8 am, then gave him some ACTH.  He started to go down-hill again.  40 minutes later they took more blood, then gave him some Hydrocortisone IV.  He improved almost immediately.

The results came back later that day confirmed Diagnosis of adrenal insufficiency.

We were also told that it looked like he had had a Catastrophic Antiphospholipid event.  He was visited by a Rhumatologist who ran some tests to see if he had Lupus.  She confirmed that he didn’t, and was referring him to another Rhumatologist at our Local Hospital.

 Friday 26 Oct

We were finally told that Derek could go home.  He would be on Hydrocortisone for the rest of his life, he had to be very careful of his APS, and he was to be moved to another ward for the weekend.  It was planned that he would have one last CT of his Adrenal Glands on the Monday morning, then discharged.  2 weeks after being admitted.

He was even allowed to go home for a couple of hours on the Sunday.

He still wasn’t well, his heart rate would not come down under 100 but they were sure it was just the damage from the CAPS event, and it would improve.

We waited for Monday’s CT……………………………………………………….

And the Experiment Ends

Well it’s the end of Friday and Derek has stopped the Experiment.

As said earlier, he took a Stress Dose of HC, and has increased his daily dose to 10/10/5.

He did some work around the house, but is still suffering.  Hopefully by the end of the long weekend things will settle down and he will begin feeling his normal self.

One test he does regularly to see how he is going is Soduku on his phone.  He does Difficult, on a good day it will take him 6-8 minutes.  This week it has gone from that, to incomplete after an hour.

We will test again tomorrow to see if he can get it back to at least 20 minutes.

It’s a great test for seeing how his brain is functioning.