But What Cost, a Medical Misadventure

When the Medical Side is Under Control

4 years on from Derek twice having his warfarin stopped by a hospital who’s excuse is “Oh, the Dr didn’t realise the importance of bridging” and we have, with very little help from them, managed to get Derek as stable as he will ever be.

 

We have got his Adrenal Insufficiency as under control as it will ever be.  We have worked out through experiement, what dosing works for him (and it’s not what they say in the books).  We have added other replacement medication (DHEA, Vit D) which is helping.  We are learning the symptoms of low cortisol.  We should have learned, we see them frequently.  Derek updoses as he needs, which is different to stress dosing when sick, and how to stress dose (double or triple HC) when he IS sick.

He is being driven to work, although he works mostly from home at the moment.

But what is the unseen cost of the medical fraturnity almost killing him?

It’s the costs they don’t compensate you for.  It’s the cost of things he can’t do any more. The things we now need to pay to get done.  For some it is things like having to employ a builder, for others, it is having to downsize their home, pay a cleaner, pay a gardener, or just not do things any more.

Why is employing a builder a hidden cost of his injury?

Bedroom RenovationBefore Derek suffered his CAPS event we used to work together to do renovations to the house.  This included turning our downstairs bedroom, shower room, and toilet, into a Master Bedroom with ensuite.

The cost of this exercise was extremely low.  We paid just for the materials used.  We paid a very small amount to have 2 power points moved.  We worked weekends, nights, and took a few days off work.

Top Left is the entrance foyer of our home.  You can see the door to the shower room, and the door to the downstairs toilet.  The bedroom is the door to the right.

Derek built the new wall (back of new wardrobe).  He then demolished the old wardrobe, we gutted the room, insulated, relined, and created a new Master Bedroom.

This was done a year before CAPS.

We have done a couple of small outside projects, with a lot of help from others including building a garden and a garden shed  and an deck outside the dining room.

Derek designed the deck, but we had to call on friends and family to build it.  It is an amazing asset,  and again, we paid for materials, and food for workers.  The help to build these things was fantastic.  But what about the bigger projects. Something the size of the Master Bedroom.   Like a kitchen?  Or insulating the Living Room?

We are looking at selling our home in a few years and find something slightly smaller.  There is a lot of new building going on around our area and we have to have our home at the right level to get the right money.  That means insulation in the Living Room is essential, as is a new kitchen.

Once upon a time we wouldn’t have thought anything of it.  We would have just purchased the materials, contracted a kitchen manufacturer to make the cabinets and bench top and over a period of a couple of months, done the work.  But not now.  And it was too big a job to ask friends to spend 2 days building.

So we had to pay a builder.  He is a great builder, with home renovations/alterations as his specialty, but still, we had to pay.  We have had to pay him for a lot of the other “little” jobs around as well.  Things that would normally take a weekend for Derek and I to do, now either doesn’t happen, or Chris comes to our rescue, but at a price.

So, Chris came in and gutted the lounge.  He then built a new ceiling, insulated the entire lounge, relined it.  We had to get a plasterer in to paint.  We had to get a painter in to paint it.

As for the kitchen.  It is a great Kitchen, I love it.  But again, we kept Chris employed where we could would once have done much of the work.

Gutted KitchenWith the help of a friend we did remove the old kitchen.

Most of the kitchen was still in good enough shape to be used elsewhere.  It was after all, a Designer kitchen.  It just wasn’t a well designed kitchen.

Our friend agreed to remove it with her and I doing the bulk of the work including carrying the units down to her trailer, taking them to her place, and putting them in her garage, for her to have installed in her home.  Derek did the little bits.  He unscrewed units from each other, and supervised, or held things while Sian and I did the hard labour.  Thank the Lord for Sian.  She has a new kitchen and Derek didn’t end up overdoing things.

But once everything was removed the walls were a complete mess.  Patches here and there.  Holes in the wall.  No insulation,  It had to be gutted.  We also needed to install a new window as one of the windows was sitting below the height of our new bench.

 

rebuilding

Chris, working hard (instead of Derek)

Enter Chris again. It wasn’t a big room.  For someone fit and healthy, which Chris is, it was a 5 day job to put up new ceilings, new wall lining, and install the new window.  Working along with the plumber and electrician it took 2 weeks in total.  Inbetween that, we had the kitchen company come in and install the units and bench top.

Then Derek and I could do some more work.  Well I could do some more work.  Derek “supervised”.  I plastered, sanded, and painted.  Derek did bits and pieces, working as he could, taking extra HC as he needed.  It took several days, with me doing the bulk of the work.  It was hard work, but rewarding.

Once we had the units installed it was time to put up the tile spashback behind the sink, and along the bench top.  Again, Derek cut a few tiles with a motorised tile cutter, and I did the installing of them.

KitchenFinished

The Finished Kitchen

All Up, for the living room and kitchen, it cost us $10,000 for work that 5 years ago we would have done ourselves.  This was the cost of employing a builder for work that Derek was once very capable of doing, and in a good timeframe.

So what is the hidden cost of a medical misadventure.  So far in the last 12 months it has added up to $10,000 and rising.  This, you do not get compensated for.

 

I understand that others would already have to get someone in for this, but when it is something you would have previously done yourself, it makes a difference. It certainly made a difference to the cost of the Kitchen.

For others it may be something different but there will always be hidden costs that are not compensated for, or that have no real measure and that are not thought about when it comes to the cost of a Chronic, or unexpected illness.

 

 

 

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Know Your Own Numbers

Aside

Every few months we get a question from someone on a forum as to what a normal BP or Temperature, or blood result is.

Everyone will jump in with one of two answers:

  1. The books say…….
  2. Mine is……

Both of these are valid responses. However, the book “Normal” is simply what the middle of the Bell Curve is.

Most “normal” numbers are taken from a group (be it large or small) and are based on a Bell Curve of averages.

 

Bell Curve

In this image, all areas are “Normal” according to a “range” but where you sit will differ to the person sitting next to you.

The first thing Derek and I learned when he was diagnosed with AI is that there is no Strict Normal.  Most people will sit within a range, but they will not have identical numbers.

When you are sick, the first thing they check is BP, Temperature, Heart Rate and Oxygen Saturation and, if you are really lucky, they will do a few bloods.

That is great, but what if you normally sit in the High, and you are feeling off and now sitting in the Low end of the range. Although it might not be screaming “Warning… Out of Range for the BOOK”, if you know your own numbers, you can scream “Warning… Out of Range for ME!”

When Derek had pneumonia in 2014 he went into crisis before he showed real signs of being unwell. For him Adrenal Crisis (or low cortisol) can be his first sign of being unwell.

In 2015 when he got pneumonia (yes he has had it every year since 2012) we knew his “Normal” and once his temp showed to be out of HIS normal range we sought treatment. The problem is, for him normal is 35.9 so once his Temp hit and stayed at 37.3 (considered perfectly “normal”) we knew he had some sort of infection so sought help. We kept him out of hospital because the temp was one of the first signs. We knew HIS “normal” so were able to run with that, and get treatment underway before he became too sick.

The same thing happened this year with a throat infection. Because we know what his “normal” is, we could see that some things were off so he was already taking a bump in Hydrocortisone.

The problem was, he has no feeling on one side of his throat so by the time he had a sore throat he already had a throat infection. But, it wasn’t’ crazy out of control because again, he knew his normal readings and was already taking HC to fight what ever it was he was fighting.

How do we know his “normal”. Quite simple, we did regular checks of his BP over a 3 months period. And by regular I mean 3 times a day every day. And we charted it. We also did a 10 day Basil Temperature Check. We keep all his blood tests. I know it sounds crazy but what that means is we knew when:

  • he was over prescribed his Fludrocortisone when he first started it;
  • the fludrocortisone was becoming less affective, and therefore it needed to be increased;
  • he is low on cortisol rather than just tired;
  • he is low on salt and needs to get some more into him;
  • he has an infection that needs treatment;

Why is knowing YOUR numbers important?

If you have a chronic illness, YOU, not the Dr’s know when you need to seek help, and when you can manage it at home.

If you rock up to the hospital with a BP of 90/60 according to the books it is not a problem (maybe you need to drink a little more), but if your normal BP is 135/85, then 90/60 is a big difference and there is probably something wrong. Also, you have probably already tried drinking water. For some reason many Dr’s seem to think that you are an idiot because you haven’t been to medical school and they have (especially the young, newly trained or still training ones). If you can then turn to them and say “I know my normal, I have tried correcting this myself, I need help” then perhaps they will listen to you.

We had to do that once. A Dr tried to tell us that a creatinine level of 125 was “normal” for Derek because he had that level once before (yes, 3 months after kidney failure, which had been 18 months previous). We knew that for him normal was 110-115. She ignored us, and didn’t treat the dehydration (the 125 was a text book sign). He was admitted to hospital in Crisis and the next day a senior Dr came in, took a look at his bloods and said “put fluids up, he is dehydrated”. The same resident did not bother comparing a chest xray from when he was well, to the one she had taken that night. Had that occurred, she would have seen he also had the beginnings of pneumonia. But because she didn’t know HIS normal, she missed everything.

I wrote a complaint, not because she didn’t know his normal, but because she wouldn’t listen to us when we tried to tell her his normal.

Taking time when well, to find your normal may possibly save you a lot of stress when you are not “normal” for you.

For Want of an Emergency Injection!

Some people wonder why I keep going on about Adrenal Insufficiency, and key trying to raise awareness. The reason is, knowledge can save lives.

Recently I wrote a booklet called “Did you really just say that”. It is a compilation of quotes from Medical professionals to Addison’s patients and was written because of a discussion in a closed forum about what Dr’s had said to various patients about Adrenal Insufficiency.

The reality of what has been said by medical professionals (some who should know a lot more about the condition) and why we all have a problem with it, has been hit home to us all in a way none of us thought possible.

On 4th of January a beautiful young lady called Katie (24) had a common virus. This was something any normal person would shake off. She had started to feel unwell so went to bed. At some point during the night she was found by her parent unconscious and not breathing after they heard her fall..

They called an ambulance. They could not give her an emergency injection at home as they didn’t have one. The Ambulance service could not give her an emergency injection, they didn’t carry one.

Her Dr had previously said:

“It’s not a big deal, you should just take your hydrocortisone and you should be fine, don’t be over dramatic with the injection, you live near ER’s it’s not that necessary.”

Derek was also told after diagnosis that in New Zealand we were never that far from a hospital, so would never need an emergency injection. We ignored the Endocrinologist that said that and always make sure he has his on him. And this proves us right to do so.

Those with adrenal insufficiency are always told “don’t take extra hydrocortisone unless you have a temperature, are vomiting or are injured.”

With Adrenal Insufficiency,
when you go down,
you can go down fast!
Really fast!!

Kate was a college junior. After struggling for a while, in 2015 she began to improve and was able to return to college and start “living” again.

Then one day at the beginning of this year her mother announced on her facebook page”

medical

“On Sunday Katie became just slightly nauseous, a possible stomach bug. She said she was managing, no vomiting yet. Sometime through the night she must have become very ill. With Addison’s Disease the electrolytes can plummet dangerously low very suddenly At 6:30am Dave and I heard a loud crash. She had collapsed in her bathroom. It took a minute, two? to get into her room as her door was locked. She was not breathing. Dave began CPR, EMT’s were summoned and arrived in 2 minutes. Thank God we live close to the station. Thank God we were home. She was rushed to the trauma unit, unresponsive, but stabilized medically. We were told she had suffered cardiac arrest and later informed of multiple strokes. She was moved to the critical care unit and placed on hypothermic cooling to save brain function.  Monday, Tuesday and Wednesday she remained on full life support. She is fighting. Yesterday she responded to me warming her feet and nodded her head when I asked if she wanted a warmed blanket. She was on so many means of support that her room had to be specially cooled due to the heat of the machines.

…… 36 days on:   “[we both felt] bullied by this pompous, arrogant man who has no right to be a Dr. So much for taking a life threatening disease seriously. And so this continued from one [hospital] Endo to the next. Not one ever treated this disease with the knowledge or respect or seriousness that it deserves. Katie was so under and over medicated that she was hospitalized more than 45 times the first 4 years after diagnosis.

For the past year she had it more under control without using an Endo, her GP was managing her better than anyone before.

So as I sat in our friend’s home yesterday, the three of us crying as [my daughter] lies in a subacute care home, we wondered; would she be our beautiful vivacious Katie right now had she not been undereducated and intimidated by her Dr’s?
For now I will have to speak up for [my daughter] and all of the Addison’s patients because she can’t speak and likely never will. Her time spent in a PVS condition has been painful, muscles contracting, infections, and unable to communicate or even swallow. We are in a cloudy state of day to day confusion with no real prediction of her future. We are for now, just day to day.”

 

For those that don’t know, a PVC condition is a Persistent Vegetative State. A coma like state that she is not likely to come out of. She suffered a heart attack and multiple strokes.

I was going to post this originally on Rare Disease Awareness Day which was 29 February. But that day we were notified of a 13 yr old boy who had Addison’s, who had also got a virus. He went into crisis before his parents realised what was happening. He too suffered irreparable brain and heart damage. He passed away 5 later.

Addison’s Disease Kills! And you never know when you may get a virus that will kill you, or how fast it will hit.

Quite often even though an Addisonian is admitted to hospital in Crisis, if they pass away, Crisis is not put down as the cause of death. It will be the heart attack, stroke, pneumonia, flu, or some other thing. Even if the Crisis caused the CVA/MI, or the pneumonia could have been survived if not for the AI. Hence many don’t realise that Addison’s Kills.

Am I angry/frustrated that this can happen in todays medical world? YES

Do I over react about the way Derek and others are treated by some in the medical profession regarding Adrenal Insufficiency? YES

Do I believe Wellington Hospital (CCDHB) should take more responsibility for their lack of communication that gave Derek this Life Threatening medical condition? ASBOLUTELY.

Do I believe that more medical staff need to be aware of this condition, and what to do? YES, especially ED staff.

Do Derek and I live in fear that he will again end up in hospital with multi-organ failure due to an Adrenal Crisis? OF COURSE. But we will not let that rule out lives and dictate what we do.

Having said that, we will take precautions against things like stomach bugs, the flu etc. So don’t be offended if you turn up on our door step with “only a common cold” or “just a little tummy upset” and expect to be welcomed with open arms. This little tummy upset that you are exposing my husband to could potentially kill him. That is not to say we will turn you away, but we will keep our distance.

Derek has gone into crisis in front of medical staff even after telling them we thought he would. When asked by his Endo later why he went into crisis, we thought about it. It was because we listened to his Endo about something we thought was an early sign of extremely low cortisol and impending crisis which the Endo was sure wasn’t. In fact, the Endo was adamant that it was not a sign of low cortisol. So Derek didn’t take extra cortisol until it was too late. He went from “just not feeling right, with this one symptom to crisis within an hour. Most of that time was spent in ED trying to get help.  We know better now.

The medical staff at the hospital ED department didn’t recognise the crisis when it happened. Why? Because a Crisis is never Text Book. Each Addisonian will react differently in crisis.  You will not get ALL the symptoms, only some of them. One of the key symptoms the medical staff look for is a decrease in BP to <90/50. The fact is, many AI sufferers have an Increase in BP to start because they have swallowed down so many steroids trying to avoid it. They will check your temperature but they won’t consider it high unless it is over 37.8 (Addison’s causes low body temp, many sitting around 36.0). They don’t tell you that in the medical books though. What medical staff look for is the signs and symptoms as written in the medical books. Unfortunately when you are that sick, you are being shipped off to ICU because you are in shock and your body is shutting down. Personally, I don’t want to see Derek like that again, and will therefore always insist he is treated before he gets to that point.

Two things help keep Derek and others stay out of hospital. One is self-education, and the other is a good support network.

Being told “just take these pills and you will live a normal life. Oh, and learn how to inject, but only after you have vomited 3 times” is not education. In fact, after you have vomited 2 times, you are probably verging on unconscious and incapable (unable to behave rationally or manage one’s affairs). You very seldom have the ability to give yourself an injection and very often don’t believe you need it because by then you brain is not telling you the truth. You are not going to be able to call an ambulance. You must be proactive and seek help before you get to that point. And those around you must make themselves aware of the symptoms so they can also help you.

We are lucky, we have the emergency injection, and have never needed it, although we almost had to use it in the emergency department, but they finally gave Derek the life saving injection he needed and were then shocked to see how quickly it worked.

But for the want of a US$10 injection Katie may not be in the PVC she is now in. Her family may not be sitting by her bed daily watching her in pain.  There is no knowing if giving this beautiful spirit her injection when she was “just feeling unwell” could have saved her from this. But it sure as hell would have given her a fighting chance!

Drs need to understand that what they say, can and does, have a big impact on their patients lives. Yet they never accept when they are wrong (or hardly ever).

 

aiunited

Enter a caption

For more on Katie and her battle, please read
http://aiunited.org/katies-story-adrenalcrisis/

 

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.