Patients know best

Had you been wondering where I’d disappeared to? Sorry about that. My elderly parents are in need of an extra helping hand right now so I’ve been otherwise occupied. I’ve also had the little business of an operation to recover from and that’s kept me somewhat quieter than usual. This week, it’s definitely been a case of Steph nose best 😉

Recovery from surgery can usually be measured in steps. You know the way it is… two steps forward, one back until you’re over the worst and then it’s generally steady progress from then on. My recovery on this occasion has taken on a different pattern. The first 10 days post-op were the easy bit and it’s been a bit up and down since then. If there’s one thing I’ve learnt over the years as a patient, it’s never to doubt myself when it comes to reporting symptoms.

I requested another appointment at the hospital yesterday as I sensed something wasn’t right. The consultant examined my head endoscopically and was able to confirm my suspicions. Despite daily wash-outs since the surgery, the inside of my head had crusted up again and was in need of further Spring cleaning. I continued to insist that I could also smell decay. After working on my head for some time, the culprit was soon identified. The donor site for the graft was to blame. Some dead cartilage was visible on one side of the nasal septum where tissue had been removed and rotated upwards into my forehead, for grafting. Once this decaying cartilage had been cut away yesterday, my airway felt very much better. I was patted on the back for my skills of detection and sent on my way with a request to return if symptoms recur.

The culture of healthcare is thankfully changing from one of paternalistic medicine to one of participatory medicine. Everyone is better off when patients are encouraged to engage with the medical profession.

Patients Know Best is actually the name of a company whose website is already integrated into the NHS secure network and helps UK patients with chronic diseases, to manage their health care.

11 Responses to Patients know best

  1. Annb says:

    Well done on your powers of diagnosis! Hopefully now that further ‘crud’ has been expelled you will have a clear run at the final furlong! Continued good health to you!

  2. Baino says:

    Good for you for noticing although I think we inherently know when something isn’t quite right. Let’s hope this is the last time you need a tube up yer schnozz!

  3. Steph says:

    Annb – Thanks! My crud detector is having a day-off today 😉

    I didn’t step outside at all today as my head feels very raw after yesterday and cold air really makes it hurt.

    Baino – I’d love that too! I’ve to go back to Notts in a few weeks for further scoping and hopefully that will be the last time for a while.

    Yesterday’s treatment was quite an ordeal but having got used to having work done on my head, it doesn’t bother me at all. I was offered local anaesthetic and refused it.

  4. Grannymar says:

    Steph, I have been very out of routine and touch these last few days. Not yet home and the weather will be the decider on when that journey takes place.

    I hope the latest visit to the Consultant is easing things for you. Thinking of you agt this difficult time.

  5. Steph says:

    Grannymar – Now don’t you go giving yourself more grey hairs! 😉 Enjoy your holiday and we’ll have plenty of time to talk when you get home.

    While my head is sorer today as a result of yesterday’s session, it’s a lot clearer. I’m very thankful to have a local consultant to oversee my care. Technically, he’s not obliged to look after me during the post-operative phase as he didn’t perform the surgery. I’d be in a right pickle if I had to travel to Notts every time I needed help!

  6. Jenny says:

    Great to hear that you’re feeling better and your intuition was as usual on the ball! Situations and correctly identfiying symptoms like you have will help pave tha way of a more participatory and collaborative approach to medicine and this has to be a good thing.
    Great work as is to expected from you steph.

  7. achelois says:

    No energy to read comments, I’m sorry.

    Suffice to say, pleased to see you in my reader. You know I fret when all is silent – I hope your parents despite your love are not draining the energy you need to concentrate on full recovery. I know, I know – I feel a frown or two with regard to that statement not necessarily from you Steph…. but you must know by now I do say what I think. If your resources are drawn on too much PLEASE ask for assistance if your loved ones needs require more than you have to give aside from unquestionable love.

    I am a little concerned about the required procedure despite your valiant efforts at making light. I had thought it was worrisome that you had an active infection when the surgery took place but understood, needs must.

    I am truly keeping my bendy fingers crossed that recovery is full and final but please post if you feel under the weather (I daren’t say poorly because I know you won’t).

    I hope I can speak for more than just me that we will be there for you in spirit if you blogged when you feel crap, for some of us albeit virtually.

    I understand if you can’t blog when feeling below par (understatement) but I wouldn’t mind in the least if you blogged and moaned and moaned justifiably and didn’t add any pretty bows and hints ot sarcasm about all you are going through medically. As a faithful follower I guess I have come to expect the Steph that blogs ‘after’. Guess I am just saying if you have a bad day – do please say. Obviously not forcing your hand in any way here as you know but if you can’t I can’t either arghhhhh lol (please excuse the lol I have teenagers and its catching).

    In saying that – me being me fully understand the silence. Good grief that sounds trite it is so not meant to.

    Sometimes just wish – you lived in a village near me. We could get on each others nerves on occasion as good friends do.

    I am a rubbish friend (EDS makes me have the best of intentions but pretty appalling at socialising) however (I intially wrote but and replaced it with however as at the convent I attended for school a big red mark was put through buts and replaced with a long lecture about the very word!) Which is why no doubt the trauma of it all leaves me the most appalling at grammar ever its linked with the low self esteem that type of education gave me! Anyway as ever I digress, if you were in that village I could pop over to moan about me! Afterall they do say distraction is a good pain management technique. ouch….

    Thank you for taking time out to blog today Steph. Please rest assured I am willing you well.

  8. cathy says:

    I read what you write and I just can’t imagine what you have went through. I hope this soon ends and you can just get on with life. This must be very frustrating. I just went through my own medical stuff that was quite bad but nothing like what you have went through for so long. I had not been updating my blog regularly for quite some time but I started again.

    I am sending good thoughts your way. I hope your parents are OK?

  9. Steph says:

    Jenny – Thank you kindly. Do I get a gold star? 😀

    achelois – You are a good friend and a faithful follower and I love it when you speak your mind.

    As regards staying quiet until ‘after’ an event, you are right but I don’t plan it that way, it just happens. The mood has to be right for me to want to blog. I stay away from it until I’m ready to let the words flow.

    I must admit when having the work done on my head a couple of days ago, I did consider that not many people would be able to sit through what I was having done (having a root canal filling at the dentist, is a doddle by comparison). The key to it is that the surgeon and I have got to know and respect each other over the years and at this stage, he knows my limits well. When working on my head, he constantly checks with me that I’m okay and I trust him emphatically.

    When appropriate, we employ humour to lighten the mood. My health insurance company is often the butt of our jokes as it’s given us both a hard time recently 😀

    cathy – Sorry to hear you’ve been through a tough time. I’ll pop over to visit you shortly.

    My parents are both in a nursing home as they need round the clock care. My father turned 90 last weekend and while still on his feet, needs constant guidance and reassurance. My mother is severely debilitated and doesn’t have long left in this world.

    It’s a privilege to be able to be there for them in their final days. Thankfully, I’ve 2 brothers to share the burden so whenever I’m unwell, I can retreat with peace of mind for as long as it takes to get back on my feet.

  10. JBBC says:

    Ah Steph..you are riding one of my own personal hobby horses here! From the moment I read the title of Dr Jane Plant’s “Your Life in your Hands” book when I was diagnosed with breast cancer, I knew I was going to adopt these five words as my mantra for life. These words become extremely relevant when dealing with your medical treatment and I absolutely agree that it is a good thing we are hopefully, although sometimes very slowly, moving away from the traditional paternalistic medical model to a more particpatory one.

  11. Steph says:

    JBBC – That same book was recommended to me by a surgeon who oversaw my treatment for many years. He was passionate about the concept of patients participating in the management of their own care. We managed to maintain a mutual respect for one another despite enduring a gruelling sequence of operations.

    Sorry for taking so long to reply to your comment. I was away for a few days over Easter and only catching up now.

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