Rough couple of years

[Green]

An RGP refit for the health of the graft but I struggled with lens handling severely to the degree that it was seriously affecting me.
Eventually I sought private help, I didn't have to worry about taking up time, interruptions, she listened and I knew she would cope if I panicked. She took the time to understand why I'd got into such a bad state.
I needed to change technique, retrain myself, regain confidence and was helped by her supportive back up, I could drop her an email and she would answer.
I got there in the end, but it took me 2 years in total.

I had extreme pain with a PK re-graft from the point of Recovery and for several weeks after.
I couldn't open my other eye on the day without it increasing pain, so I had to go home blind with relatives.
The ward couldn't offer me further painkillers because I was not written up for anti-emetics so I didn't want to risk an unfamiliar opiate without it and there was no Dr to speak to.
I was chastised for failing to put shoes on as my relative guided me to the toilet and I stepped in something, but the pain was so great I just didn't want to move, bend, put anything on/off.

The journey home was hell, despite the cab driver going as slowly as possible, every movement and speed bump caused more pain. It was the worst journey home, when all I wanted to do was remain lying still.

The pain continued for several weeks and no one would tell me why, I had no reassurance it would go, it was dismissive and I was scared.

The first episode of rejection was off the scale painful.
I've had 3 grafts, 1 hydrops in my youth close to perforation, allergic reactions to preservatives in solutions, rejection, subconjunctival injection which is a hot burning pain after, and RGP wearers know how exquisitely painful grit under the lens is, so I'm no stranger to ocular discomfort but this was a whole other experience.
To offer a pain comparison - a stone in the ureter is rolling around kind of pain - that would have been preferable to the rejection pain.
It was how I would imagine an eye might feel if acid was thrown in it.
I was crying with the pain, I didn't know what to do with myself and it stayed at this level for 10 days solid. I sat in total darkness to reduce the additional pain of light.

I had 3 trips to A&E. On the 2nd it was treated as rejection. During my 2nd visit when the pain peaked, I developed a migraine whilst waiting, and was anxious I might vomit over the slitlamp as I do vomit with migraines.
By the time I saw the Dr, with eye & head pain, nausea, tears were streaming down my face.
He sat back in his chair, folded his arms, and said, "I'll continue examining you when you've stopped" and just stared at me.

In follow up clinic my usually abrasive, hard to communicate with consultant was completely different from all my years of seeing him, he appeared highly animated and excitedly told me how this early rejection was 'outside the margin'.
He asked if another Dr could look, I said yes of course, thinking he meant the surgeon who did the re-graft. Nope, he meant half a dozen Drs and an animated teaching session (including the Dr I'd seen in A&E).
He walked off saying 'well you've got the other eye'.

Mm the 'other eye'...the 35 yr old graft that I rely on. The eye whose RGP wear is reduced by 50% for 50% of the year because I live in a flat with high temps/low humidity deemed a statutory nuisance and uninhabitable by independent reports with reference to impact on mucous membranes, now supported in a legal case against my council.
Iit takes years to get institutions to do required work. I had to move because my home was demolished for HS2.
I now live in the 15 year construction area with night time generators keeping me awake.

I'm sure other old graft/RGP wearers have experienced eyes being less robust over time, needing 12 not 8 hrs rest, not tolerating multiple re-insertions. The dryness of my living conditions I suspect contributed to an abrasion because there was no insertion scrape or accident and I don't risk overwear being reliant on 1 eye. The abrasion drove my decision to accept the re-graft offered, the consultant was uncharacteristically most emphatic in his offer.
This was quite different to an earlier offer when it was questioned why I bothered trying to use a lens in my duff eye as I had the 'other eye'. I pointed out I was seeking back up given the age of the graft.

I think it would be more helpful to just acknowledge the uncertainty of grafts and that sometimes we might be anxious about it (and fear lens intolerance). Sometimes I feel that some ophthalmic professionals don't appreciate that waving splodge peripheral vision isn't what everyone can handle, like there's an expectation that we should and will cope with and adapt to anything.
Everyone is different, I freely admit I don't cope as well as some people, my early history was traumatic and changed the whole direction of my life. I would not want to live with permanent SVI in both eyes, that's me, my life, my circumstances, everyone is different.

With my 'other eye', I've experienced more near misses with traffic than I care to remember, grit, mucous under the lens is common cue eye closed streaming or removal and SVI.

I've been physically assaulted for staring at transport indicators with other waiting passengers sitting/standing in that direction perceiving me to be staring at them
"You staring at me" scenario.
So, the 'other eye' isn't always a bundle of laughs.

After my 1st rejection I read up on the use of DMEK for PK failure and attempted to ask my consultant about it.
He replied with a raised voice 'I don't want to talk about surgery'.

After the 2nd episode of rejection an A&E fellow & consultant of another team in follow up, both suggested it to me!!

I was struggling with suture removal (still have most in), as unlike previous grafts these seem to take a lot of tugging and I can't control my reflexes enough. I wanted to seek the remaining sutures to be removed in theatre but the thought of asking my abrasive consultant..

At this point after years of struggling to converse with this consultant (a problem I did not experience with my first till he retired),I took the decision to change consultant.
I didn't specify any details other than 'communication issues', and I made it clear I was NOT making a complaint, I just wanted to change consultant to PALS.
There is a right to do this, not one I've ever exercised before in any healthcare.

When I saw another consultant, I assumed he had agreed to see me, but it became immediately apparent that was not the case and it became my worst experience of an appt.

He kept telling the junior Dr I was my prev consultants patient, then insisted 6 times that I should see my previous consultant, 'a very nice man', finally saying 'so you don't want to, why?'
He said changing consultant was 'unprecedented', then wanted details of all my medical and employment history, and it felt that he was searching for anything to put me down with.
I was quiet, he had to ask me to speak up, I was very anxious by this point, and said 'its clear you don't wish to see me', he said 'well..', I think even through a mask I could work out his expression.
So I said, 'please refer me to a consultant who is prepared to treat me please', and suggested a name. He left making it clear that the questioning 'would continue'.

His junior instructed me to go to pharmacy, and a scan, then I could go.
Pharmacy refused to dispense the drops, GP surgery said it was protocol for hosp to do 1st prescription, hosp pharmacy said no, GP surgery kindly did it, this took a week to sort out.

The scan was a new one on the macular, that alarmed me as I have a relative with macular degeneration who is functionally blind.
I begged the person doing the scan to give me the results as I had been instructed to leave after so I had no one to ask, and I knew I was going to wait months for another appt.
The news was a macular-hole.

A couple of days later I managed to speak with someone from optometry, 'oh no thats not good', and told it might be too risky to operate.
The referral to vitreo-retinal has according to Bookings, no timescale.
I don't know what stage the hole is, 1, 2, or 3, if it's operable, what this means if it wasn't.
I think the most pressing question for me is, could this happen to my other eye?
I'm willing to undergo vitrectomy if they can, I understand about face down posturing, there are good chairs you can hire for that at home.

I have a corneal appt in a couple of months, I'm praying I'm not further interrogated as warned about changing consultant, because all I want is to get my eyes treated, ask any relevant questions about my conditions and treatment and be treated with a modicum of kindness if things were rough again. My sight is my sole priority, nothing else. So I hope this consultant can get past a patient changing and just carry on.

[PhilLer]

Hi Green,

I'm really sorry to read your cornea story.
I hope that Science can advance as quick as possible to offer you new cornea, and that you can get soon some good news about your cornea.
Take care,

kind regards,
Philippe

[Green]

Thanks Philip. I hope treatment of patients as people can improve too