Always interesting, often different

Posts tagged ‘Corneal re-graft’

Why the break?

I feel I owe the followers of this blog some explanation as to why I disappeared from my blog for 18 months.

There are a number of reasons, so I wanted to  list them so you may understand.

I actually thought I’d already posted this explanation, but on checking my blog when I posted ‘A Trip to the Countryside’ yesterday, I realised I hadn’t! So here it is:

More vision problems

This led to me receiving further eye surgery, I had a right corneal re-graft, cataract removal and lens implant in September 2014. Thankfully the operation went very well and I have useful vision in that eye again after several years deterioration. However, my nursing care was not good and sadly led to a complaint, which was only ever partly resolved. 

In September 2015 I had surgery on my left eye, cataract removal and lens implant. Because my partner was going to stay with me at home, I was allowed home the same day, which was wonderful and with also having a great carer who came in regularly I was looked after much better than I would have been in hospital. 

My operation was very successful and after four months of not being able to drive, I had my scleral lens adjusted and I now have both excellent near and distance vision.

The three months leading up to my op and the six weeks afterwards were difficult. Especially beforehand, my near vision was compromised even before I stopped driving and I found it so hard not being able to read anything unless it was on a Kindle or iPad. Back-lighting together with font and colour changes really helped me. Sometimes using a magnifier worked, but it was always trying and at times impossible to hold a heavy book in one hand and a reading aid in my other, especially as I’ve not got full use of my left arm and hand.

The only saving grace was having wonderful, supportive friends and a partner who helped me so much in so many ways.

Starting a new relationship 

I’m going to write more about this in a future blog post, so this section will be very short – except to say that being with Eve has changed so many things for me in such a wonderful way.

Caring for Judy

When I first met Eve, she was helping to support her cousin Judy, who had breast cancer. Within a few weeks it was obvious to me, as a nurse who originally specialised in cancer care, that Judy had only a short time to live. Eve and I decided to prioritise caring for Judy, over everything else in our lives. So for the first eight months of our relationship, our lives revolved around hospital visits, taking Judy out when she was well enough and for her final days nursing her at home with the help of a wonderful carer. Following the funeral our days have were filled with house-clearing and all the other minutiae that follow a death. But we were also mourning a wonderful woman, who had a huge impact on Eve’s life. In the midst of emptying Judy’s house, the sale of Eve’s flat went though and she had lots of sorting to do, so that her belongings could go into store until she found a new home.

Study and obligations

For a number of years I have been studying Judaism. I have a Jewish heritage, but was not raised Jewishly. I wanted and needed to reclaim my history and convert. This has not been a quick process, nor is it intended to be, it’s taken over 5 years, punctuated with breaks for health and other reasons. At the end of 2015 that part of my journey was concluded. I had made a commitment to the community I had joined to do some work for them, this took many hours, which at the time was a wonderful distraction from the extra pain I was suffering, which necessitated the surgery I had last month. I have completed the bulk of the task I undertook and I will only need to do a regular few hours each week with some extra work around the time of festivals. Now I have more time to write. 

Moving home

After being on the waiting list to move to a fully adapted flat for over 8 years, through a chance encounter I met someone who knew of a purpose built flat just south of the Thames. I viewed it and instantly knew it was the place I wanted to live, and 6 months later here I am. Moving is an exhausting process in every way, and as I finally get everything into place I’m feeling settled and able to write again.

So in a nutshell, that’s what’s been going on in my life. There have also been a number of ups and downs related to all the stuff that disabled people deal with on a daily basis, some of which I will write about. The current UK Tory government is making life much worse for those of us who are disabled, as well as those unfortunate to be unemployed, or earning a very low wage.

Disabled people in the UK are banding together to help and support each other, we have groups on Facebook and other sites. There are great advice organisations too. I recognise I am more fortunate than many, but want to help and educate where I can. 

Some of my future posts will focus on this, as well as aspects of my own life.

 

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Everyday Life, Medical

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Corneal Rejection Update

I went back to Moorfields last Friday for my check-up. This was to find out if there had been any improvement in my graft or whether the rejection diagnosed four weeks previously had continued. When I saw the Registrar he confirmed what I had thought, there was no improvement and I would need to have a re-graft. My previous graft on that eye was 22 years ago, so I guess it’s done me well.

When the Consultant came to discuss the surgery with me, he explained that not only would he be giving me a new corneal graft but that he would also be removing the cataract which is also growing on my right eye. I didn’t realise that it was possible to do both procedures at the same time. He reassured me, but did remind me that the chances of graft rejection are higher when having a second graft. I completely forgot to ask if he will also implant a lens, but I’m due to see him a couple of weeks before the surgery, so I will remember to check with him then.

The surgery will not be until September. That was partly my decision, as my daughter was abroad when I had the partial re-graft on my left eye last year, and she very much wants to be with me because of the poor nursing care I had last time. She will not be home until next month and I also need the time to try and get my care package increased for my postoperative period. All of this is complicated by the fact that I will have to been in hospital overnight again as I will be having a general anaesthetic. I have previously had severe reactions to local anaesthetics.

I’m not worried about having a general anaesthetic, but am very concerned about my post-operative care, as last time nursing staff did not understand my need to use my wheelchair for all mobilisation, that my balance is poor and that I have restricted movement and poor grip in my left arm. So I need help transferring from bed to wheelchair and back again.

Because of my concerns, I spoke to Jasmine, the lovely Specialist Nurse at Moorfields and she has given me contact details for the Specialist Nurse at St George’s Hospital in Tooting, South London, where my operation will take place. This will enable me to talk through my needs and hopefully meet with ward staff so that they understand how I should be nursed. Even though my daughter will be at the hospital with me, I don’t want her to have to be battling with nursing staff to ensure I get appropriate care.

Following my partial re-graft surgery last year, my surgical care was excellent, but nursing staff had no idea how to care for someone using a wheelchair who also needed help with many activities. All of this was complicated by the fact that my operated left eye is the one in which I have most vision, so immediately post surgery I had very little vision, which the nurses failed to take into account when they wanted me to do things, such as going alone to a room at the end of the ward that I couldn’t see well enough to navigate to. Also, despite telling staff I was Jewish, the breakfast I was offered was a ham sandwich!! It seemed very difficult to provide me with anything more appropriate. My letter of complaint did not get a particularly re-assuring response, hence my apprehension.

But until I have my surgery, I will be enjoying the lovely summer weather and spending as much time as I can getting out and about.

I would also be interested in hearing from anyone who has had both a corneal graft and cataract removal at the same time.

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Medical

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