Medpac – Very Orange But in a Good Way

I received an Amazon order in the post this afternoon and it was my bright orange Medpac and I’m very impressed.

This Will not be a full review I’ve only had it a few hours but I wanted to share as they have sizes and shapes to suit all needs and I’m genuinely impressed by what I have seen so far.

They are no joke bright orange this is good because in my case in contains epipens and they need to be found quickly if they are needed.

I ordered the one to fit two epipens and it fits 2 epipens snugly it has a  clip on the side of it and helpful little cards to put important information on.

I’ve only had it an afternoon and already someone has asked me where I got it so here is a link Medpack Link

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New non-emergency health phone number to launch

Please see: BBC News – New non-emergency health phone number to launch.

Now my first question here is do we really need one?

NHS direct has come under a lot of flak for taking doctors and nurses out of hospitals and putting them in call centres – They also have to take action for the worst case senario when someone calls them which often leads to people being Ambulanced to hospital when they don’t neccessicarly need it.

I recently had the experience of being involved in an accident one evening, I should have gone to Hospital, a walk in centre (well at the time more hop in) would have been ideal but NO!

My local hospital with a walk in centre closes its doors at 9pm minor accidents and injuries do not happen in Gosport after this time.

This makes the nearest hospital with any form of A&E style care more then 10 miles away according to Google maps the journey would take around 45minutes in a car – I shudder to think about the cost of that in a taxi.

As it happened I was totally unable to get any treatment after my accident, the next morning I decided the pain of walking was not worth the 5 minutes down the road to the local hop in centre  so didn’t bother, had it been open at the time of my accident I would have defiantly sought medical attention.

So what would we all rather  – A new phone number managed in a call centre with lots of nice forms and paperwork and computer systems that break OR Hospitals actually being open, with enough nurses and Doctors and HCA’s and cleaners and receptionists and the right equipment when you need it?

Corneal Calamity

Well its been almost 2 weeks now since I saw a corneal specialist at the eye unit, meaning I now have 2 eye constants! For those not in the know the cornea is the clear window at the front of the eye, it plays a role  in shaping the eye and keeping it at the right pressure.

For a while now i have known I have a problem with mine, it all started way back when I started trying to wear contact lenses again, I was getting on fine with them, and gradually increasing the time I spent wearing them, not wearing glasses was great! As far as I was aware there where no problems until I went for a check up and it was found that my corneas on the other hand HATED the change and where dye was placed in my eye they shone back brightly in such a shade of fluorescent orange that the optometrist doing my contact lens stuff was utterly shocked and ran off in search of a camera. She didn’t find a camera but immediately stopped all talk of contacts and reffered me to see my eye consultant, this is probably approaching 2 years ago.

I was diagnosed with corneal oedema, basically flid filled sacks where forming on my cornea as a reaction to having higher than normal intraocular pressure (caused by Glaucoma) a change in medication and no more contacts for me and the general consensus of the consultants I saw was that all would be well.

unfortunately that was not the case, my corneas have continued to be cloudy, and got cloudier. To be perfectly honest I have not really noticed this except maybe when I am very tired I fund I struggled to read even large print as everything is just rather blurry. I was refered to  a corneal specialist.

Now we are back up to me sitting in the doctor’s office a few weeks ago, I was fully expecting on seeing Mr Corneal Specialist that I would simply have another change of medication and that would be that problem solved, what I was essentially told was totally unexpected and a total shock to the system.

It turns out I need a corneal transplant in both eyes, this involves taking the cornea from a donor (yes a DEAD PERSON) and implanting it into my eye, once my own damaged bit of cornea has been removed.

This is because the cells right at the back of my cornea are dying as a result of all the surgery I had as a baby that saved my sight in the first place, apparently it’s happening to everyone who had the kinds of surgery I had back in 1988. My cousin born a few years before me with the same eye conditions has exactly the same problem. So the death of the cells in the back of my cornea is causing them to break away from the rest of my corneal float around and get in the way turning all cloudy and full of fluid.

Cornea transplants are quite common and are more often than not successful and rejection is relatively rare, and if the worst does happen they simply repeat the surgery. However for me there are more risks, my eyes are smaller than average and I don’t have a lens which is normally critical in helping the eye keep its shape during the surgery.

On the plus side the surgery might improve my vision, I say this but too much of an increase of my vision would defiantly be a negative for me. I have always been at very best partially sighted, if I was offered a drug that could get me full sight tomorrow with no risks and a 100% guaranteed success rate – I would not take it! I am happy the way I am being blind is part of my entire identity I have never really known any different to suddenly be fully sighted I would struggle to cope with such massive life change.

On the other hand the surgery might not work, it could all go terribly wrong and might damage my vision further.

However by far the worst case scenario is that I do nothing, slowly the condition of my corneas will deteriorate and I will lose all the vision I have, the amount of pain I experience in my eyes would also increase. This scares me, as much as I don’t want to be fully sighted I don’t want my vision to deteriorate dramatically either, I value the eyesight I have enormously and the thought of going totally blind is heartbreaking for me, it would without a doubt turn my life upside down, as it would with anyone.

It’s been a difficult few weeks trying to work out what I want to do about all this ready for when I speak to Mr Corneal Consultant again in a  few months time, the decision actually seems clear, I have to go for surgery and just hope an pray everything goes to plan. To further complicate matters I am not ashamed to say I am rather phobic of hospitals, them make me incredibly uneasy. I am lead to believe that the surgery requires a 2-3 day stay in Hospital. I can just about cope with a visit to the eye unit the thought of spending time actually IN hospital scares the pants off me – As it would lots of other people I’m sure.

I see Mr Macular Consultant at the end of this month and there was talk when I saw Mr Corneal Consultant that I need to see a Glaucoma specialist as well as things are not to stable in that department at the moment either, apparently I may have come to the end of the road when it comes to glaucoma medication too, meaning I might need more eye surgery to do something for my glaucoma too.

Overall in it’s a particularly unhealthy time for my eyes, but there is still hope!

For those who like to watch disgusting things here’s a link to a Youtube Video of the type of surgery I need, I warn you it’s not nice to watch!

Spurred into action

Well bloggers its been a while quite frankly hasn’t it? In truth I have been rather apathetic when it comes to keeping the blogosphere updated in the world of Jemma Brown, this is in part has been due to sheer busyness but also a slight lack of motivation.

However this morning all that has gone I am ready to blog I am unsure as to whether it is the sleep deprivation, the mixture of caffeine and sugar rushing through my system or just my puzzlement and need to share it with someone who will understand – not that I totally expect this blog post to be understood by the masses. This last view point is not because it is complicated but because i myself am confused.

I’ve just read that NICE is withdrawing funding for the cancer drug Avastin.

The article is sketchy but this is a worry for me, Avastin is the drug that I periodically have injected into my right eye to help prevent the impending explosion of blood vessels that will without being kept in check result in my loosing all the vision in my right eye.

The treatment I have received three times now (I think – it might be two, I honestly can’t remember) without it I would have lost all the vision in my right eye by now. Don’t get me wrong my right eye is rubbish, it has always been the less useful of the two but as i am sure my readers will appreciate any vision no matter how little is precious.

So anyway back to the point in hand I am still researching as to whether the drug is also being withdrawn for its use in the treatment of Wet Macular Degeneration… Its a complicated issue so I am going to just ask my consultant when I see him next week.

I’ve Had A Needle Stuck In My Eye AGAIN!

It’s official on Tuesday I visited the eye unit and had my second injection of a drug called Avastin.

The aim of this needle poking is to make some blood vessels at the back of my eye that should not be there wither and die! It’s these tiny blood vessels that cause hemorrhages that damage my Macular that then lead to vision loss.

The process of being injected involves having lots of rather stingy local anesthetic eye drops placed in you offending eye. Then the whole area is cleaned with orange surgical grade antiseptic including the eye-ball. Then more this time slightly less stingy anesthetic eye drops. It’s at this point things get interesting a clip is then applied to hold both the upper and lower eye lids open, this is not to fun and I did feel some discomfort all the way along with the clip on my eye this time.  The big guns then come out local anesthetic is then injected underneath the cornea in the area around where the injection is going to go, this also stings a bit.  Finally it is time for the final and biggest needle yet the one containing the Avastin. The only way this can really be described is its like someone poking you in the eye with a needle the initial area where it goes in is numb but as soon as it pierces the white area of the eye it hurts.

Upon leaving the hospital I was given the advice that my eye would probably hurt later and that I would probably need to take some painkillers inside my head I was thinking actually I need some right now!

Tuesday and Wednesday my pain was on and off pretty bad its like someone has punched you hard in the eyeball alone, in effect your eye is bruised. I will say this time I looked less like something from a horror movie as my eye did not go blood-red.

Blinder

Well readers as you may well be aware I have, simply for ease of understanding labeled myself as a blindie for some time. When you refer to yourself as a blinky most people of a certain age think you are talking about a cartoon koala bear not describing your visual impairment as partially sighted. So blindie has worked to convey that sense of hey I’m visually impaired it’s not a taboo subject and I am comfortable to talk and even joke about it.

I have been partially sighted since the day I was born, well I was actually born with very little sight at all but after some fantastic surgeons working there magic on my tiny peepers all I have ever known is partially sighted.

Growing up it has been drummed into me, quite rightly by various medical professionals, my parents, teachers and sometimes even friends that I have to be careful about a bang on the head. This is because if I sustain a serious blow to the head I am at a higher risk than your average human being of detaching a retina at the back of either eye or worst case scenario both!

I never expected anything more than this, I am a realist and I am grateful for what I have. I also never really expected anything less for most of my life I thought everything was going to stay stable and  be the same for ever. Oh how naive I was!

Last Monday I went for my appointment after I had the hemorrhage a few weeks ago. The very nice consultant, who incidentally reads my blog here (hello Mr N) confirmed that I have had a bleed and the general state of my eyes,  especially the right one is not good.

We decided together that I could now be registered blind, before that moment I was partially sighted the way I had always been growing up and suddenly I had the new label of a blind person.

The thing is the more I think about it the more I realise that it is just a label but this is very difficult to comprehend.

A tiny part of me is devastated which I think is only natural but in reality the change of terms means almost nothing. I have not changed as a person my life is not going to change much if at all with this new label but it feels very strange.

I guess to sum up everything quite simply its a blow and a shock but it could be worse and it’s not the end of the world.

Positives will come out of it,  I have the joy now as a person registered as blind to a half price TV license so one day when I have enough space and money to buy a TV I can look forward to paying less license fee!

Further Vision Loss

On Sunday I had been back from Church say about 30 minutes when I noticed what is affectionately known in the eye business as a floater.

For me given my previous Sub-Macular hemorrhage this rings alarm bells in my brain.

After a brief spell of panick and trying to work out what to do with myself I rang ahead to Eye Casualty to let them know I was going to head in.

One £10 Taxi fair later I was stood outside Southampton’s Eye Casualty but was totally unable to go in. Not because of some anxiety driven panic that froze me to the spot but because there was a keypad with lots and lots of buttons and a small intercom with yet more buttons on it just above. There was also a very small water damaged sign that I presume said something important but I honestly have no idea. So there was only really one thing for it, I stood there and pressed buttons totally randomly and hoped for the best… This was far from successful and after some time had elapsed I pounced on a woman walking past and asked her to help.

When I got in I announced my presence to the nurse booking in patients and composed myself. This is necessary because the Eye Unit complete with Eye Casualty can be a stress full and incredibly dull place. 

Regrettably I went alone, just myself and Gus. I could have really done with someone to come with me but also did not want to worry my parents or friends on the odd chance that it was absolutely nothing to worry about. Not to mention the inconvenience to my friends if I rang and asked them to come down – I realise now this was totally stupid but it’s how I felt at the time and I guess I was simply in denial!

After some time the tests commenced: Distance vision test, blood pressure, blood sugar, pupil reaction, intraocular pressure (IOP) and ultrasound. I was rather intrigued by the ultrasound scan, I had never had one of those before and did not know it was even possible to scan an eye, but it is.

By this point I knew what it was and was simply waiting to hear it from the doctor.

Several doses of pupil dilating eye drops and 20 minutes of waiting for something to happen to my pupils. The doctor was able to get a semi-decent view of the back of my eye and confirmed a new haemorrhage in the back of my eye.

This is obviously pretty devastating, its means further deterioration and uncertainty. There has already been damage done to my vision by this bleed and I am left to wait to see what happens.

So all this happened on Sunday and I was been told if I have not heard anything within 2 weeks to give them a call and chase things up. Considering the state of the administration at Southampton Eye Unit and the problems I have had with appointments previously I don’t hold out much hope so have already phoned my Consultants secretary to chase this up.

I am yet to see or even hear from a consultant about this, so I am left in total limbo with no idea what is going on. I have no prognosis for this bleed, no idea whether I will again be able to have off label treatment with Avastin and even more worryingly no idea if the blood vessel at fault is going to leak more whilst I am left to wait.

I am incredibly thankful to the guys at the Solent CU and Church that have already prayed for my recovery. If you are so inclined and have the time please send out a little prayer for me.

  • The Previous haemorrhage can be found in the following posts (In order of appearance)
  1. Today’s visit to The Eye Unit
  2. Eye Casualty
  3. The Consultant Calls
  4. I am going to fight
  5. No Pretending
  6. The effect of it all
  7. I’M GOING TO GET A NEEDLE SHOVED IN MY EYE!
  8. Avastin is go!
  9. When they said ASAP they meant it
  10. My day on the ward

BBC News – GPs access to depression treatment ‘is too narrow’

BBC News – GPs access to depression treatment ‘is too narrow’.

This is not really a surprise or a shock to read in some areas there are 6 month waiting lists just for a 6 week course of counselling! As a result drugs such as anti-depressantws are often used to fill the stop gap in treatment, while a patient waits for some other form of therapy.

BBC NEWS | Health | ‘No shows’ cost the NHS millions

BBC NEWS | Health | ‘No shows’ cost the NHS millions.

I had to write about this purely because I have had a very bad experience or two.

For example I once received an eye appointment for the same day at two o’clock, three o’clock and four o’clock they all arrived in the post on the same day in three separate envelopes, I had to phone up to try and establish what the hell was going on.

Another time I got sent an appointment at 9 am on a Saturday morning and another one for the Tuesday only a few days later both in the same envelope, I phoned (again) to check this was correct and was told that yes it was right. I turned up on the Saturday and know one could quite work out why I was there, my consultant was not even in and the doctor actually apologised for the ‘error’ even though it was not her fault!

Then there is the local podiatry service who ring me up less than 30 minutes before my appointment to cancel it, when I am already sat on the bus on my way, they have done this twice now.

Oh and then there is the time said podiatry administrator rang me when I was in town to tell me about a change in my appointment, with bags of food shopping, heavy rucksack, guide dog, wearing my non-prescription sunglasses and balancing the phone on my shoulder. She babbled possible appoinment times at me I said I did not have my diary out or a pen so I did not know when I was free and could not write it down.  She said I had to pick one,I said any.

She read the time and day out again  and I said could you email me that please, she said no.

I asked if  she could send me a letter in large print, she said no.

I asked if I could have a letter in standard print, she said no.

I asked if she could phone me back in 30 minutes she said no.

I asked if she could phone me back straight away and leave me a voice mail with the info, she said no, (abruptly).

I pointed out once again that I could not write it down, due to the fact that in those moments stood there in the sun I was blind, she said I should write it down told me when it was one more time and hung up!

Unfortunately this is just a brief outline of the experiences I have had in Southampton when trying to sort out hospital/doctors appointments, I have spent over a year attempting to get my appointments from the eye unit sent to me in large print without success, it’s the EYE UNIT!

Don’t get me wrong I think the NHS is great heck I get enough out of it, but my point is that it is no wonder people miss appoinmtnents with administration systems like the ones near me!