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.