Friday, 13 April 2012

Christmas Kidneys

I've been meaning to commit this to text for a while. I dunno why, maybe so we can look back and remember what happened? Though, in reality, we'll never forget what happened.
Christmas 2011 was one to remember.
Edith's first and very nearly, Karen's last.

If you're interested, read on to see what happened.
If not, you can always do something else, I don't mind, honest.

Around 04:00hrs on 24th November 2011, Karen woke and complained of a pain in her lower back, saying it felt like she'd been kicked. Her complaint quickly escalated to her being bent double on the floor of our bedroom and a call being put in to NHS Direct. This followed by a Medi-Car being sent and by 06:00, I'd kissed her goodbye and she was on her way to hospital. Later that day, she was discharged. The diagnosis was a suspected kidney infection, for which antibiotics had been prescribed.
We knew that Karen was going to be in pain for a while, certainly until the antibiotics had time to kick in, so we made arrangements for friends and family to check on Karen whilst I continued to go to work.

A week passed and Karen was getting progressively worse, so she contacted her GP.
This call notified us that the first of the planets had started to align (not that we knew this at the time) and signalled what I believe to be the first major failing by the health care professionals in which we put our trust.
It transpired that there were two issues with the antibiotics, which Karen had been prescribed and had been taking for a week.
Firstly, they were the wrong antibiotics for the type of infection they thought she had and secondly, she was allergic to them. How this could happen is beyond me, as this is not a new reaction and is well documented. How can this be missed on a persons notes?
So, 7 days worth of tablet taking had allowed the original infection to flare whilst, simultaneously, the tablets themselves had caused more illness in the form of a substantial allergic reaction.
New tablets were prescribed and collected and we hoped that Karen would begin to improve.
She didn't.

Its at this point I suppose I should mention my failings as a carer.
I am abysmal.
In fact I'm worse that that.
And I hate this part of my demeanour. You might think this is a bit harsh. Maybe it is, but I just don't know how to cope with illness. Being brutally honest, it annoys me. I don't know if anyone else has this reaction and I don't know why I feel this way. I'm sure that my inability to deal with illness is due to the fact that I am very rarely ill myself. I can count on one hand the number of days sick I've had through actual illness (not hangovers or cant-be-botheredness)(CURRENT EMPLOYER: Please note, I'm talking about previous, previous employment, not this one, but you know that, just look at my 100% attendance record)
I just don't get ill. And when I do, I carry on as if I'm not ill. And I think others should do the same. Which is shit. So, you get the idea. Florence Nightingale I am not.
In mitigation, by this point Karen had been ill and bedridden for 11 days. Her breast milk had all but dried up. We had a hungry 7 month old baby who still required feeding in the night, I've slept on the sofa because Karen is keeping me awake and I'm up at 05:30 every morning to go to work. I'm not making excuses, but I hope you will at least cut me a bit of slack after reading the last paragraph.

So, on Tuesday 6th December I received a phone call at work, from Karen, saying that she needed me to come home urgently as she's confined to the bathroom with vomiting and diarrhoea.
I dashed home.
We managed to get an emergency appointment at the local GP and amazingly, Karen was able to walk the short distance to attend. In hindsight, what happened next was, in my humble opinion, nothing short of malpractice.
The Doctors advice was to stop taking the antibiotics as if they were going to have worked, they would have by now and that they were just adding to Karen's problems. He then went on to flippantly mention a mate of his who had a kidney infection and went on to develop septicaemia and how dangerous that could be.
Finally, he berated Karen for discussing her fears about her breast milk drying up, stating that she had "done her bit" by breastfeeding for 6 months and that even that had questionable benefits.
And off home we went, without a test of blood pressure, temperature or any kind of examination.

6pm that day I called 999.
It was my Mum who saved Karen's life.
I don't know how much longer I would have let it go on, or what symptoms would have prompted me to take more direct action.
She was laid in bed, deliriously talking gibberish.
Normally she leaves that to me. Sorry, I shouldn't joke.
The Docs at the Hospital did comment that if we had left it any longer "it would be a different story" and I think we all knew what that meant.
We will both be eternally grateful for my Mum being there that day and effectively saying "Enough is Enough"

Even at this stage, we didn't know just how ill Karen was.
But, within 30 minutes of being at the Northern General, the penny didn't drop.
It was hammered home.
I popped outside to make the customary 'updates' telephone calls, leaving Karen on a bed in A&E and returned to find her in a resuscitation bay and being readied for transfer.
This change of location and the defibrillator on the foot of the bed was the catalyst for a feeling at the pit of my stomach, which I had never felt before.
The huddles of health care professionals, speaking in hushed tones, uttering phrases such as "not responding" and "critical" did nothing to ease the situation.

Karen was swiftly moved to the Intensive Care Unit where, upon entering, I was told to say goodbye and was ushered off to the waiting area whilst they made her comfortable.
This was heartbreaking. I was sat there, at 11pm, on my own.
And I have never felt so alone.
Every beep, every buzzer, every close of a door I heard come from behind those doors made me think the worst. And then in a split second, I would take a grip of myself and talk myself round. "Shes not going to die" echoed around and around in my mind. I even said it out loud to myself a couple of times, to make it more believable.
My thoughts were distracted slightly when Karen's best mate turned up. She'd asked if she could come down as she wouldn't sleep at home.
I was thankful of the company.
And the 2 packets of crisps, a muffin and a half eaten bag of Minstrels.

After what seemed like an eternity, I was told I could go and see Karen.
This was an instant relief, not because I could see her, but because it meant that she was still alive.
It transpired that the lengthy wait as caused by the fitting of an IV feed, directly into Karen's central blood line, which had to be stitched into her jugular as her veins had started to collapse.
I was so glad to see her face and be able to talk to her and hold her hand.

Shortly after, I was ushered away by one of the consultants for the diagnosis, which consisted of "we know what is happening to her body but we don't know what is causing it at this stage, so we will continue to fight against the symptoms until we find the problem"
I was told that Karen had gone into Septic Shock, which is "the result of severe infection and sepsis, causing multiple organ failure and death"
I obviously didn't know this at the time, I just knew it was serious, so I looked it up on my iPhone.
And did myself no favours, particularly when I read "The mortality rate from sepsis is approximately 40% in adults and is significantly greater when left untreated for more than 7 days"
So, there we were. I was advised to go home to get some rest and could come back tomorrow.

Our very own scene from [insert name of hospital drama here]
 Karen was critically ill and the next couple of days were spent fighting to get her into a stable condition.
To cut a very long and medically complex story short, it was a juggling act between the unholy trinity of blood pressure, heart rate and temperature. If one went up, the others dropped dangerously low and vice versa. This was then further complicated by a dose of bronchial pneumonia, thrown in for good measure, as Karen's lungs started to fill with fluid. All things told, she wasn't getting any better and the Consultants were at odds with what to do next.

Lungs minus 80%
As Friday dawned, I was informed by one of the Consultants that they were starting to worry that Karen just wasn't responding to the treatment and they felt they were just firefighting. At this stage, I counted IV lines of 9 different drugs, all constantly being pumped into Karen in an attempt to regain some stability in her body. Something had to be done.
In what seemed like a very rushed decision in a very frantic period of activity, the Consultant decided to  perform a nephrostomy.
A kidney drain to you and me.
Given Karen's current instability, it was decided that at the same time they would put her in an induced coma, so that they could control her breathing and other vital stats.
As you can probably imagine, this was terrifying, for all concerned. In fairness to the Consultant, he was brilliant in his explanation of his thought processes surrounding this decision, which did help us come to terms with what was about to happen.
For the second time in under a week, I kissed Karen goodbye and she was taken away to theatre.

I had been told that the procedure would be carried out whilst Karen was in the coma and then they would monitor her overnight to see how she responded. This would also allow Karen's body to rest from all the fighting it had been doing. They would then try to bring her back to consciousness for short periods and keep doing this until she was able to breathe unaided. I left her in this state in the early hours of Saturday 10th and went home.

It was at this time that I thought I ought to notify friends and family of our situation, as up until this point, the fact that Karen was in hospital was known by only a handful of people. Now, Facebook has its critics, but in cases like this; where you wish to communicate to the masses, it was a godsend.
And a morale booster too. Within hours of posting a message, hundreds of well wishes came flooding in. It was humbling to know that we had so many people thinking about us, from all corners of the globe.
If you were one of those people, I'd like to thank you again, from the bottom of my heart.

The good feelings kept coming that morning as when I phoned Intensive Care for my morning update, I was surprised and overjoyed to hear that Karen had been brought out of the coma and was breathing unaided again. The nephrostomy appeared to have done the trick and the Consultant was confident that they could start moving forward with treating the cause rather than dealing with the symptoms.
Karen wasn't out of the woods just yet, but it certainly felt like we were taking a step in the right direction.

It transpired that the severity of Karen's illness was one in thousands.
And it was definitely a case of planets aligning more than anything else, as no one component part was particularly life threatening (root cause, not symptoms)
The general consensus from the Consultant is that Karen had a kidney stone which caused the first pains and prompted a trip to the hospital. The Hospital failed to spot the stone and diagnosed an infection, which prompted the prescription of incorrect drugs, which Karen had an allergic reaction to.
The allergic reaction made her ill and weakened her body's battle against the infection, which allowed it to rage behind the blockage caused by the stone. The infection got into her blood and caused septicaemia, which the GP failed to spot, even though he was banging on about how serious it was! This was left unchecked and developed into sepsis which then in turn caused her to go into Septic Shock.
A chance in a million

The next few days saw Karen's strength and health increase and within a week, she had been taken off the critical list and moved to a general ward. And this meant that we could do the one thing which had driven her fight to recover; I could take Edith to see her.
There were tears all round.
I look back now and I am eternally grateful for having such a resilient, calm and relaxed little baby.
Her breastfeeding had been abruptly stopped, her Mummy had disappeared and her Daddy didn't know whether he was coming or going. And she handled this without an ounce of drama. She even started sleeping right through the night during this period. Well, for a few days anyway!

Karen's time on the Urology Ward consisted of monitoring and strategising about what to do about the kidney stone, but all we were concerned with was the fact that Christmas was approaching fast.
It was down to the wire, but with a few days to spare we finally got Karen home in time for Christmas.
It was a quiet and simple affair but we were all together for Edith's First Christmas and nothing else mattered.

Desparately thin but smiling
And where would we be without friends and family.
Ours were outstanding.
Terry & Carole Roebuck (My Mum and Dad) Justine Childes (Karen's sister) Kate Cam (Karen's best mate) Joe & Fliss France (My best mates) were simply amazing during Karen's spell in hospital. It’s usual to say “I don’t know what we’d have done without them” but I do know. We wouldn’t have coped. Words cannot express how grateful we are for their support and assistance and I feel unbelievably privileged to have such outstanding parents, family and friends.
And a big thank you again to all of our friends who called, text, tweeted, sent gifts and came to visit us.

At the time of writing, Karen has been signed off from the hospital and will be monitored for the next few years. They never did get the kidney stone in the end, having tried sonic blasting, laser treatment and a snatch and grab operation, so it now lies embedded in the wall of Karen's kidney, where we are assured it will stay.
And if it moves, we'll know what to look out for!
And I'm trying to be a reformed carer, I promise.
The guilt of what could have happened has seen to that.

Together again
So, there we are.
That was bloody hard work.
Writing this, I mean. Not the ordeal itself.
That was easy.
Alright, I'll stop joking about such things. But if you didn't laugh, you'd cry.
And crying is for jessies!


  1. Written from the heart Damian, Excellent!!

  2. Damian , you got o stop writting these heartbreaking posts , in officially a Jessie ..greeting like an Oscar winner hold onto your wonderfull wife and daughter , and treasure every minute you have with them ..and then take a wee minute..change your GP ,see a malpractise lawyer and give karen her day in court with them.

    From Sweden with Love.

  3. it´s one of those times when you will look back on ..and not laugh , but be extreemly thankful happy Karen made a great recovery , so glad you spent your childs first Christmas together ..dont be so hard on yourself damian , people react to shock, illness etc in different ways , you react ..or dont ! ;-)

    now go hug your wife !

    1. Cheers Steve & Helena.
      You're right, maybe we won't look back and laugh but will certainly remember this most 'interesting' of Christmases!!

  4. That's quite an intense experience. I can relate, 5 years ago my wife had open heart surgery. Those days were the scariest times of my life.

    1. Terrifying for the uninitiated mate! [though I wouldn't want to go through it again]

  5. I finally found it, this blog. In a way I kinda wish I hadn't.
    I knew a little about this traumatic time in your life from reading the posts on Carole's Facebook pages but the fact that I haven't seen you since you were a very little boy, and I don't know your wife and I've never met your daughter, well, all that made it seem as though it wasn't really connected to me. I was sad, of course, and I thought a lot, should the worst happen, about how your baby would cope with losing her mum before she even knew her, but it was as though I was reading a story in a magazine; it didn't concern me, in the same way as the Tsunami or the Earthquake or the Brazilian miners didn't concern me. I was affected, sure, but not directly.
    Then I read this.
    I felt as though I was with you every single step, every beep of the monitor, every door clicking open, every glance at the midnight clock.
    You took my hand and led me along, into your thoughts and feelings and emotions, but not once did you ask me to feel sorry for you. You made me pray for Karen's recovery; I felt as though she was the most important person in my life, even though I don't actually know her.
    You have a gift for storytelling; you told me about the pain in your soul without being overly sentimental or dramatic, you didn't try to make me feel sorry for you. I did, but on my terms and because of the way you chose the words and the way you structured the sentences.
    This is a brilliant telling of a most difficult subject and you should be very proud of yourself.
    There are a few minor technicalities which need a little polish, grammatical errors and tenses which need tidying,but nothing that a few strokes with the old red pen couldn't fix.
    If you were one of my students I would be giving you an 'A'.
    I no longer have the energy or the drive or the ambition to strive for publication, but I think you should.
    You come from a long line of storytellers, your Granddad and my Dad could talk the curves out of a new Moon, and your Aunts could all tell a brilliant story; it's nice to keep up tradition :)Love to you all, Lynette xx

    1. Thanks for the encouragement Lynette xx