Poignant Patient Stories

By the way, apologies for all the alliteration involving the letter P in my post titles recently!

As a patient representative for the NJR, I am fortunate to have the opportunity to meet lots of joint replacement patients.  Without exception, I have found other patients to be incredibly supportive and very generous in passing on details of their experiences.

Every patient I have spoken with has assured me that going through surgery was the right decision and that their quality of life has improved as a result.  This is true even of those who had difficult recoveries.  Phew!

In and amongst all the positive stories, there have been a few that have given me pause for thought.  That’s a nice way of saying that they scared me.  A lot.

I hasten to add that these stories are in the minority, but I’ve accepted it’s human nature to dwell on the gloom.

Patient A: ‘Amanda’ is a lovely retired hairdresser and grandmother.  She had hip replacement surgery and all seemed to go well immediately after and during her recovery.  Unfortunately, six weeks after her surgery, she twisted while sitting in a chair and suffered a dislocation.  She had further surgery and had to go back to square one on her recovery.  Second time round, everything went well, and she is fine now.  She did look a bit shaky when telling me about her dislocation which was obviously a very painful and traumatic experience.

I’ve asked several health professionals about the dislocation risk.  One expert told me that she could count the number of dislocations she has seen over the years on one hand, and that in every case, the unfortunate people who suffered dislocation had an underlying neurological disorder or imbalance that made them more prone to experiencing this.

Just yesterday, an orthopaedic nurse with 16 years’ experience told me that she could only think of one dislocation that she saw in the hospital when an elderly patient forgot to get out of bed correctly and her hip dislocated.

The view seems to be that poor Amanda was just unlucky.  Dislocations are rare according to the experts, particularly if you follow the rules.

By her own admission, Amanda said she was not very fit before surgery and that she broke the ‘no twisting’ rule.  I have to say that when she demonstrated the movement that caused her dislocation, it looked pretty harmless to me.  More a trunk half-shimmy than a full twist!  Nonetheless, Amanda has provided a cautionary tale that I plan to heed.

Another patient friend in the USA said, “Remember CBT. Do not Cross, Bend or Twist.” No twisting.  Got it.

Patient B: ‘Bill’ is a former train driver who has had multiple surgeries, not all of which have been entirely successful.  He has been left with a permanent disability affecting his mobility.  A lot of Bill’s sense of identify came from the work he did, and when he was no longer able to work, his confidence and his emotional state were badly affected.

I found Bill’s story very moving.  I was told about his long experience of being passed round a number of hospital departments, organisations and clinicians, each focusing on a specific physical issue, but none, in his words, ‘treating him like a person’.  He said he felt passed around like a problem no one could solve.  What was worse, he said, “No one listened.  No one cared how I was feeling.  They wanted to fix my leg but were not sensitive to how I felt.  I felt really depressed.”

In the end, Bill did meet a clinician who cared about him – not just his leg – and supported him in the round.  Bill subsequently joined a patient experience group and has been able to use his experiences to propose changes that benefit other patients.

I thought Bill’s story was very positive in the end, but I found it distressing to think of him being passed around and treated as a problem leg, rather than a feeling person.

Patient C: ‘Christine’ is a doctor and mother of three in her early 40s.  She had complex surgery and is facing the prospect of another joint replacement (ankle) in the future.  Christine had total confidence in her surgeon, and the procedure went very well.

As a high achiever and busy professional who has been on the career treadmill for years without a break, Christine found it psychologically very difficult to adjust to the inactivity of the recovery period.  She said that before the surgery, she was thinking of her recovery as a restful holiday – a chance to read books and catch up on films and do sedentary things she never has time to do.

The reality was somewhat different.  Given a specific concern about infection risk, she was discharged on the day of her surgery.  This was a daunting and unexpected decision, and Christine felt unprepared to be at home so soon and in such an immobile state.  She said that for quite some time, she really struggled to complete normal tasks like getting dressed and felt really depressed.  So depressed in fact, that all the nice, relaxing things that she anticipated doing before surgery just felt like too much effort.

This story worries me because I identify with the pre-op activity levels and mindset Christine described.  I’m really busy and have always been prone to take on a lot.  I do not cope well with inactivity.  I’m very independent, and, as my mother says, am not naturally inclined to ask for help.  I’ve collected a dozen books to read.  I have been busily downloading iPlayer programmes  that I know no one else in my family wants to watch.  Uh oh.

On the other hand, I am reminding myself that I have three things going for me:

First, I have no reason to expect that I will be discharged from hospital on the day of my surgery.  I have been told to expect a stay of between 3-5 days so that there is ample opportunity to be assessed and prove I’m mobile before I get sent home.

Second, my gorgeous daughter, Annabel, was with me when I heard Christine’s story.  She said, “We don’t want that for you, Mum. Tell me what you need me to do so that you don’t feel depressed.”  Bless her.

Third, my son, Harry, is due home for Christmas around the time that I will be discharged.  It will be great to have someone home with me during the day while Mike is at work and Annabel is at school.   Even better that Harry has his medical training, caring nature and experience of working in a care home to boot.  He is eager to help, but was quick to point out that he draws the line at providing ‘personal care’ (translation: bottom wiping).  We can both agree on that one!

And finally, Patient D:  Kneedyman

I give a long overdue shout-out to my fellow joint replacement blogger, Kneedyman, at http://kneedyman.wordpress.com  Kneedyman is my NJR colleague who has just had knee replacement surgery. I highly recommend his descriptive and very funny blogs which make me laugh out loud and give me hope.

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2 Responses to Poignant Patient Stories

  1. Shirley Leighton says:

    As there are not many replies on this site I imagine not to many people know about it.
    I had a hip replacement 11 weeks ago and did everything I was told before and after. The first few weeks went well and I am still gradually ticking off things I can now do. However my hip is still swollen and very tender, and painful some of the time. There is no sign of infection or anything. The surgeon said he expected it to continue to improve. However it now seems to be stuck. I have not attempted to drive because of the safety element of driving when I’m in pain. I’ve looked at other web sites, but everyone writing on them seems to be much worse than me, or has an uneventful recovery and is back to normal. Is there anyone out there with a similar experience, and did they eventually get better?

    • Dear Shirley
      Thank you for your comment, and apologies for the long delay in responding. I am so sorry to hear that your recovery was paused and that you were experiencing pain. I did not have the same experience so feel unable to comment with any insight. In the absence of comments from others who might have had the same symptoms, all I can suggest is that it might be worth getting another opinion. I do hope that you are feeling better and that the pain you described above is a thing of the past.
      Best wishes
      sue

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