Title (optional)Diagnoses? Well, I have them coming in droves.

 

Eight consultants with differing views:

 

May 2010:     Dr A: asthma

 

March 2011.   Dr B: nothing wrong with lungs.

                        Dr C: tests results entirely normal.

 

July 2011.      Dr D: haven’t a clue, never come across a case like this before.

 

April 2012.    Dr E: heart behaving oddly, V/Q mismatch, with an abnormal D-dimer high probability of thromboembolic disease. Autonomic dysfunction?

 

July 2012.      Dr F: echocardiogram and jugular vein pressure test; mild to moderate pulmonary hypertension.

 

August 2012. Dr G: Nothing wrong with heart or lungs, dysfunctional breathing.

 

October 2012. Dr H: bits and pieces not right but not enough to account for breathlessness.  Autonomic dysfunction?

 

 

Unexpectedly I find it encouraging.  It is a puzzle. And no one has the answer.

 

Having said that there is the on-going concern that it is slowly getting worse and there is no one to monitor it.  I have no problems with doctors saying that they don’t know.  What is hard to take is, “There is nothing wrong with you.”  Or those who just give up.  Why is it so hard to get a consultant who is prepared to say “I haven’t a clue, but I will try and find someone who has, and I’ll see you in six months and check how things are and run a few simple tests.”?  Obviously too much to ask. 

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Back to the beginning, a beginning. 

“It just doesn’t feel right.”

 

 

A story.  A story with much more tragic consequences that mine.  Our elder daughter went into labour with her fourth baby.  The pregnancy had been fine, the first stage of labour went well, and the beginning of the second stage was proceeding as normal, then Lucy began to feel that things were not right.  She told the midwife that she had pain at the top of the bulge and that the pain was not normal labour contractions.  “To be sure, Lucy, you’re grand, the baby’s fine, you’re fine, just keep pushing.”  This was Ireland, hence the Irish syntax.  Lucy is far too tough for her own good, she always has been and this was another one of those occasions when it did her no favours.  She struggled on, and said again that things were not as they should be. There were more reassurances from the midwives. And then after an interminable length of time she simply ran out of steam, she felt paralysed and began to lose consciousness.  It was only then that they realised that things were not well.  By the time they opened her up the baby had been dead for some time, the uterus had ruptured so badly that the baby was outside the womb, awash in a reservoir of blood, and Lucy’s life was in danger too. 

 

“It just doesn’t feel right.” 

 

If anything this is plea for doctors, nurses, medical practitioners of all kinds to listen to patients, and to trust patients.  A friend the other day used exactly the same words to me; this was what she had repeatedly said to GPs in various parts of the country, it took eight years for her non-functioning thyroid gland to be diagnosed.  In the end it was just one, experienced GP who took one look at her, immediately suspected a thyroid deficiency and ran the blood test that diagnosed the problem.

 

This is what I have repeatedly said to my long-suffering husband throughout the last two and a half, verging on three years:  “This just doesn’t feel right: this discomfort, this sense of pressure and tightness is not normal.  This is not asthma, and it cannot be COPD or emphysema because no one gets those things overnight.  Something is not right. This degree of breathlessness is not normal, it is not normal ageing.  And the next person who smugly says ‘You must remember, Kate, none of us is getting any younger,’ is going to get thumped.  Very hard.”

 

 

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On a good day this strange territory that I am occupying can have a bizarre liberation.  It is uncharted land, there are no signposts. No maps, no indications of where I am or where I can go.  It is up to me to make of it what I wish.  

So I can go anywhere.  Only, of course, I can’t.  Or at least at a pace that I find satisfying.  It is slow, of that there is no question; it is slow because my pace is slow.  I have to stop frequently to recover.  And I can get no help to make that recovery because there are no people.  There is absolutely no one that I can turn to, no one can help me.  No advice, support, no medication, no treatment, and no monitoring of the deterioration.

 

No people, and on a bad day that is what is impossible and nightmarish. 

 

This absence of people is baffling to friends.

 

Even the NHS direct advisor I spoke a few weeks ago couldn’t believe what she was hearing.  Our conversation was punctuated by stunned silences.  “But,” she said, “ Surely there are on-going investigations?” “Nope.” I said.  Silence.  “Are you telling me that you do not have a consultant?” “Yup.” “GP?” “They can’t do anything.”  “Oxygen?”  “Nope.  I’m not bad enough, and you can’t have oxygen unless you have an identifiable condition.  There is no diagnosis so no condition.  Officially there is nothing the matter with me. All the consultants have discharged me.”

Silence. “Because it is not a new problem I can’t do anything,” she finally said,  “But as soon as you come off the phone I want you to phone your GP surgery and insist on seeing a GP today.”  I agreed, but as it was three o’clock on a Thursday afternoon I didn’t of course. “And you must phone emergency services if you are struggling to breathe.”  “That would be ten o’clock every night then.”

 

So it is an uninhabited landscape.  There are no companions, or fellow pilgrims. 

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Where to start?

Beginnings or endings. Often the same thing.  So January 2010.  A beginning and an ending. The beginning of a saga that has changed my life forever; the ending of a blithe confidence in the medical profession to stay with a problem and ferret away until answers are found.

So a routine operation, done a million times by orthopaedic surgeons the length and breadth of the country: a total hip replacement.  An NHS operation performed in a private hospital.  How simple is that?

I liked the surgeon, Mr George.  I liked his attitude, he said when he had looked at the X-rays, which showed that I should barely be able to walk, let alone do what I was doing, “I treat patients not Xrays.”  And later, on Saturday morning after the operation, he stood in my room and said, (to my amazement because I had just been wondering to myself if it was boring doing the same op all day,) “You know every hip is different, I never know what I am going to find until I go in.  I have to be alert to all sorts of possibilities and the day that I become blasé about it is the day I should stop doing it.”

I liked him then, and later, much later, when it came to crunch time, I still liked him.  Even though we would be profoundly at odds.

The thing is that the day before this Saturday morning conversation, I had been given an infusion of my own blood that was thirty hours after the operation, and was on the point of coagulating. It entered my heart, clotted, caused extensive pulmonary emboli, flowed into the tiny stuff, clotted there and left my lungs permanently damaged and my health seriously compromised.  But I didn’t know all this until months later.

I did say it was a saga, didn’t I?

 

 

 

 

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It just doesn’t feel right

I know, I know, Milton got there first with Eyeless in Gaza.  But who cares, I mean really cares?  Milton, who’s he?  Something to do with a town with a million roundabouts and weird statues of black and white cows.  So, another way in would be “It just doesn’t feel right.”  How often do we hear people say that?  About their bodies, about what they experience.  And the wall of indifference they meet when trying to explain to a doctor that “it just doesn’t feel right.”

And once you start to talk about it people crawl out of the woodwork in hordes.  Those who’ve experienced the frustration of not being listened to.  I thought three years was bad enough but a friend struggled with the sliding weakening slope myxoedema for eight years without a diagnosis.

Someone else had a pea lodged in his lungs, that took years of horrendous foul putrid infections before it was spotted.  Another friend of a friend who had excruciating back pain for four years and was endlessly fobbed off with psychosomatic diagnoses.

So… Where to start?

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