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Day 5 Post Op

It’s now five days since I had my operation, and so far everything seems to be going ok. When I went to the eye infirmary on Wednesday to get the redness checked out, they told me to come back in two days to see if it was ok, so yesterday I went back for my appointment. Again the nurse checked the eye and said everything seemed fine, although it was looking a little bit red. I told her that when i first woke up in the morning it tended to feel very gritty and red, and then as the day wore on the eye would settle much more- the grittiness would go and the whites of the eye would be much clearer. She said that this is probably due to the eye becoming dry during the night- as you sleep the eye tends to rub against the lids and can become quite dry as a result.

She prescribed me a special eye gel called Lacri-Lube which she told me to apply just before going to bed. This is what I did last night, and this morning when I woke up the eye was a lot less swollen and gritty than it had been the previous few mornings. It still looked a bit red, but the redness seemed to reduce more quickly than it had done previously, so it seems like that problem has been sorted for now.

In terms of the vision there hasn’t been much change. I can see things really well from about 10cm away, which is definitely an improvement from what it was previously (my vision was so bad in that eye before the op that the vision could only have improved really). When looking at objects further away I can actually make them out fine, but the image isn’t very ‘crisp’ yet- it still has that ‘greasy cloth wiped over a window’ look to it. However, I’ve fully prepared myself for the fact that this is a long process- the vision isn’t going to be amazing straight away and I will probably need to be fitted for contact lenses once the stitches have been removed. The main thing to note at the moment is that there definitely has been an improvement in the vision of that eye.

One of the things a lot of my friends ask is ‘how does it feel to know you have someone else’s cornea on your eye?’. There seems to be a fascination with the fact that a part of someone else’s body is now a part of you, and I suppose the fact that you can actually see the transplant on your eye kind of adds to the intrigue. The truth is that it doesn’t really bother me. I thought it might- that I’d constantly be aware that someone else’s cornea was now on my eye, and it would be quite hard to get my head around, but what I’ve actually found is that you’re so fixated after the operation on how the eye is looking/feeling/seeing that you don’t really think about anything else. This may change as time goes on, but really when I look in the mirror all I see is my eye looking back at me. I’ve also been very careful not to descend into the ‘ewwww gross!’ idea of having a transplant. After all, someone has made an incredibly unselfish decision to allow parts of their body to be used for the benefit of others after their death, and I’m extremely grateful that people like me can benefit from their kindness.

I’m due to have my first proper assessment on Wednesday, so my next post will report on how that goes. So far, everything seems good!

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Days 2 and 3 Post Op.

So it’s now three days since I had my operation, and the eye seems to be ok. I had a bit of a minor panic yesterday when I woke up and immediately felt that the eye was more inflamed than yesterday. The whites of the eye were also much redder than the previous evening. I put in my steroid drops and antibiotic drops to see if it would settle but three hours later it still seemed the same. I’d been told by the nurses to always veer on the side of caution with regards to any apparent change in the eye, so headed to the eye infirmary just after lunch. The nurse had a look at the eye and checked the pressure and said it seemed fine- stitches still in place, no sign of rejection, pressure normal etc. She said that it can just sometimes be the case that the eye becomes a bit inflamed a few days after the operation, and particularly first thing in the morning when there’s been a 10- 12 hour gap between eye drops. She put some kind of anaesthetic drops into my eye and it immediately felt and looked better. By the time I got home it was looking much less red and felt less gritty than it had done that morning.

By the evening it had settled down even more and was pretty much back to how it had been the day after the operation. It was probably just a case of me being over cautious, but the nurse said i was right to get it checked anyway because you always have to be really careful with a graft and any apparent changes in the eye. The sooner any problems are caught, the better.

This morning I woke up and had the same feeling of swelling and grittiness, but again after a couple of hours it seemed to calm down a lot and it’s now looking and feeling fine. I also braved my first hair wash this morning since the op. I’ve had no problems showering since Monday, but I’d been putting off the whole potential ‘water/shampoo in eye’ situation for as long as I could. I basically just kept my eyes shut as tight as possible and dried them as soon as I could and it seemed fine. Like most people who have had a corneal graft I’m probably being over cautious about everything at the moment- not wanting to bend down or pick anything up etc, but I’m finding that I’m feeling more confident about what I can do as the days go on.

Vision wise I would say It’s just about the same as it was on Tuesday. If I hold something about 10cm away from my face I can see/read it perfectly and the vision seems quite clear, which is an immediate improvement from what it was post op. Further away things are still quite blurry, but if, for example, I’m watching the TV and I close my left (good) eye, I can now make out people’s faces with my right eye and general shapes are much more defined than they were pre op. I’m assuming that the vision will continue to improve a bit as the healing process continues.

So because I’ve just ate a Mars Bar and I’m in a good mood, I figured I’d give you all a bit of a present- a big scary photo of my eye! As you can see it actually looks pretty normal- a bit of redness around the whites, but not really that much. You can also see the graft here, although I was standing directly in front of a window with the light shining onto the eye (the window is what you can see reflected in the middle), so that makes it show up a lot more. If you were standing in front of me it would probably be quite hard to spot unless you knew I’d actually had a graft, and overall the eye just looks normal.

 

The Operation

So the big day finally arrived yesterday, and it actually went really well. After waking up at Ridiculous O Clock my mum drove me to Sunderland Eye Infirmary and we arrived at 7:30am. I was introduced to the nurse who would be looking after me for the day and she showed me to my bed. My mum left not long after (the ten year old boy in me wanting to shout DON’T LEAVE! as she did so), and the nurse signed me in- confirming that I knew why I was there and asking if i had any allergies etc. My operation wasn’t due until 9:30am, so I had a bit of a nervous two hour wait. The room I was in had four beds, but the other three were empty, so I took the opportunity to just sit and try to collect my thoughts a bit. The ward was really quiet at that point and I appreciated the sense of calm around me, while inside I was growing more and more nervous.

After a while my consultant and surgeon Doctor Morgan arrived and had a quick examination of my eye. He also explained what would happen in the operation- that he was going to aim to make it a partial thickness (DALK) graft, but that sometimes due to the thin lower layers being pierced it was necessary to convert it to a full thickness graft. He said that if that happened it wasn’t the end of the world- full thickness grafts work perfectly well and have a good success rate, and partial graft’s are basically just an improvement of what is already a successful procedure. Still, I was really hoping that it would be a partial thickness graft for the reasons explained in the last post- not only is the recovery time quicker and it massively reduces the risk of rejection, but the eye is less vulnerable to injury (an eye that has had a cornea transplant is always structurally weaker than one that hasn’t, and a heavy blow such as a punch to the face could cause blindness).

I was quite confident that Mr Morgan could achieve a partial graft however. He has an excellent reputation for doing successful cornea transplants and is considered a bit of an expert in the field. The thing with something like a cornea transplant is that because the process involved is quite technical, the more experience a person has had at doing it, the more successful the outcome is likely to be. This is especially true of DALK transplant’s, which require the layers of the cornea to be removed individually without piercing those two crucial bottom layers. Im not sure how many operations Mr Morgan has performed, but I know that he’s been doing them for nearly 30 years and has an excellent success rate. It was knowing this that contributed to my decision to have transplant in the first place.

So at 9:30am the nurse came to lead me to theatre. By this point I had some very sexy DVT stockings, a giant green arrow above my right eye, and some giant dad slippers. It was a great look. When we arrived outside the theatre room I got onto the bed and the nurse attached some heart rate pads to my chest. My heart was beating like crazy, and the sound of it beeping so fast didn’t exactly help to calm me down!. Then the anaesthetist attached the anaesthetic tube to a vein in my hand and started to apply the anaesthetic. I should say that all the staff were lovely- they had a calm, friendly manner to them and were making general small talk with me the whole time to take my mind off what was going on. It took a while for the anaesthetic to work- the man kept asking if I felt any different and I was like ‘erm….no’. The he’d ask a minute later and I’d be like ‘errrrrrm, no’. They wheeled me into surgery anyway, and i think I was briefly aware of Mr Morgan saying hello and some of the nurses walking about.

And then….nothing. I had thought that the anaesthetic would work gradually- you’d start to feel sleepy and then just drift off, but it really is instantaneous. One minute you’re awake, the next minute you’re gone. I do seem to remember dreaming while I was asleep, but i’ve no idea what about. My next memory is of vaulting back into consciousness as quickly as I’d left it. Mr Morgan told me they’d just finished the operation and that it had gone really well- they’d managed to make it a partial graft and there had been no complications. Even though I was still pretty groggy that one bit of info was enough to instantly put my mind at rest. I was wheeled back into the ward and climbed into my bed, and then spent the next hour or so slowly coming round from the anaesthetic. This was probably my least favourite part of the whole day- I had a sort of ‘car sickness’ feeling of nausea, and even though mentally I felt quite alert, my body was still in sleep mode. My eye didn’t actually feel too painful- a bit gritty, but nothing unbearable.

By this time it was about 2pm, and I couldn’t believe how the time had seemed to go. I thought the operation would only take an hour or so, but it seemed to have taken about 3. My parents came to visit just after 2pm and spent about an hour there. I felt quite alert by this point, but then the tiredness hit me again and they left so i could sleep. I spent the rest of the afternoon listening to music on my ipod (thank god for my ipod), and also managed to eat something. By about 5pm I had some dinner (Cornish pasty and mashed potato for those hospital loving foodies out there), and then Mr Morgan came round not long after to look at the eye. He said he was really pleased with how it had turned out- the problem with doing a partial graft is that it’s a bit of an inexact science. You don’t want to go too deep into the cornea in case you pierce the lower layers, but at the same time you need to go deep enough so that you can achieve clear, crisp vision. He said that he’d managed to achieve just that- the connection between the donor cornea and the layers of my own was quite clean cut and therefore the vision should be really good as a result.

He said that I shouldn’t worry if i didn’t notice a massive improvement in vision straight away- the cornea is still quite swollen after the operation and takes a while to settle down. Even then, the presence of the stitches will still cause some distortion in the shape, and it’s only after the stitches have been removed (probably about 6-8 months in my case), that you get a proper idea of how your vision will be. Nevertheless, I could notice an immediate difference in my vision. I had a menu in front of me and I could actually read the larger letters- that would have been impossible before surgery. I could also make out people’s faces- their eyes, mouths, nose which before the graft would have just been a flesh coloured blur.

Even today the vision has improved more. I can read the page of a book with my right eye from about 20cm away, which again would have been unthinkable previously. It’s not really very clear or crisp at the moment- it’s almost like looking through a window that someone has wiped a fine layer of grease over. As the cornea begins to become less inflamed and settles down a bit the vision should continue to improve, although like most corneal graft patients I’ll still probably need to wear contact lenses to give me really good vision. The difference now is that contact lenses will actually be able to fit to the shape of my cornea and be able to improve my vision, whereas before they had no chance.

After giving me the once over I was told i could go home and got back about 7pm. I’d been in hospital just under 12 hours. I went to bed pretty early and wore an eye guard to prevent me from rubbing my eye or sleeping on it during the night. I also have to use steroid drops and antibacterial drops four times a day- the steroid drops reduce inflammation and lower the risk of rejection, while the antibacterial drops prevent infection- something the cornea is quite susceptible to because it doesn’t have its own blood supply.

So that’s the worst part over. I couldn’t really have asked it to go any better. I probably wouldn’t want to repeat the experience, but it’s definitely not as bad as i thought it would be, and I’m just glad that it’s over now and I know what I’m dealing with. The next stage will be to hopefully avoid infection and rejection, and try to get as good vision as possible. Watch this space!

Deciding to Have a Cornea Transplant and What it Involves

So in the last post I talked about being diagnosed with Keratoconus when I was 15, and mentioned that the condition in my right eye has progressed to the stage where contact lenses no longer work- a cornea transplant is now the only viable option. In this post I’ll talk about why I decided to have a cornea transplant now and go into more detail about what a transplant involves.

Deciding to have a corneal graft

Despite being diagnosed with KC when I was quite young (most cases of KC tend to be diagnosed in a person’s teenage years), it’s never really affected my life to any great extent. I soon found that hard contact lenses were almost impossible for me to wear due to them being so uncomfortable, so I’ve always just coped without them. I always found that I could read, watch TV, read signs in the street etc completely fine, and even though my vision was obviously not as good as a person with 20:20 vision, it wasn’t so bad that I couldn’t function normally in day to day life. Luckily my left eye has always had good vision, and even though the vision in my right eye has always been pretty terrible, my brain is so used to the vision of both eyes that it tends to ‘block out’ the poor vision of my
right eye, and focuses more on the good vision of my left.

The problems started to occur in May 2010. I’m not sure why, but suddenly I found that I was struggling just slightly more than I used to when reading a computer screen or watching TV. It wasn’t a major change, but the quality of my vision seemed to have decreased just enough to make me feel like I now needed to wear contact lenses to see better. In the past I’d always achieved good vision in both eyes with contact lenses, and assumed it would be the same this time.

It was clear almost straight away that this time it was going to be a lot more complicated. At some point in the last year or so the KC in my right eye had progressed even more than it already was. The cone was now so steep that it was almost impossible to achieve good vision in my right eye with lenses. During the course of seven months from May- December 2010, I had countless lens fittings- trying different sizes (including scleral lenses, which are the size of a 2 pence piece!) and shapes until it was obvious that nothing was really going to work. It was then that my consultant began to discuss the possibility of a cornea transplant.

My initial reaction to a transplant was that I didn’t want to have one at all. I’d spent the last ten years living like I almost didn’t have KC, and up until the previous six months I’d often forgot that I even had KC. During those six months of failed lens fittings however, I’d started to realise that I had some big decisions to make. I could either just live with the eyesight that I had and hope that it didn’t get any worse, or I could weigh up the various benefits and risks of a transplant and go for it.

In the end my decision to have a transplant was quite straightforward- I realised that I’d basically been living in a bit of denial with regards to my KC. I’d coped perfectly fine since being diagnosed, but I suddenly realised that I didn’t want to just ‘cope’ any more- I wanted to try and get amazing vision instead of the half blurry world I’d been living in for the last few years. I also realised that I was completely relying on the fact that the vision in my good left eye wouldn’t change- I’m so reliant on the vision of my left eye that if, for some reason, the KC started to progress in that eye and my vision deteriorated, I would be completely screwed. I didn’t want to live the next ten years of my life worrying if my vision would get worse, or just ‘making do’ with the vision that I have. I felt that now was the time to just take the risk and go for the transplant.

It’s important to note again that only 10% of KC patients will reach the stage where they need a transplant. There are some fantastic procedures available now which weren’t as widespread ten years ago, such as corneal cross linking, which actually helps to stop the progression of KC so that it doesn’t reach the stage where a graft is needed. However, if like me you’re at the stage where you’re starting to think of having a graft, my advice would be to just do as much research as you can, and take as long as you need to decide. You’ll probably find that at some point you just know what you want to do- whether that’s to go for a transplant or keep things as they are. The decision is yours to make only when you feel ready.

Two types of Cornea Transplant: PK vs DALK

There are two main types of cornea transplant: A Penetrating Keratoplasty (also known as PK or a full thickness graft), or a Deep Anterior Lamellar Keratoplasty (also known as a DALK or a partial thickness graft). I’ll be having a DALK transplant and I’ll now go through the differences between the two.

Penetrating Keratoplasty

This is the most common form of cornea transplant, and involves removing the full thickness of a person’s cornea, and replacing it with the full thickness of a piece of donor cornea. What does ‘full thickness’ mean? Well, the cornea is basically made up of a number of fine ‘layers’, and each layer is responsible for performing a different function. When a ‘full thickness’ transplant is performed, all of the layers are removed in one go, and replaced with a full donor cornea.

Pros:

  • Because all of the layers are removed in one go, the procedure is quite simple.
  • A full thickness graft usually provides excellent visual outcomes

Cons

  • Rejection is the biggest risk associated with any transplant, and with a full thickness graft it is one of the major risks. Rejection occurs when the body detects that a piece of tissue from another person has been put into you, and then tries to attack it with its immune system. About one in seven people who have a corneal graft will have a rejection attack at some stage. The eye becomes red, watery and gritty and if left untreated, the cornea fails and needs to be removed. If caught quickly however, strong steroid drops can usually reverse it.
  • Infection. Since the cornea has no blood vessels it heals much more slowly than a cut on the skin. While the wound is healing, it is possible that it might become infected by bacteria. Antibiotic eye drops need to be used daily to prevent this happening.

Deep Anterior Lamellar Keratoplasty

This is a relatively newer form of transplant compared to PK, and is particularly suitable for Keratoconus patients who, despite the change in shape of the upper layers, still have a cornea who’s lower layers are healthy and functioning. The idea with this technique is that the last two layers of the patients cornea (the Descemet membrane and Endothelium) are actually left and the donor cornea is placed on top of these layers- hence the reason it gets refferred to as a ‘partial thickness’ graft.

Pros:

  • Because the patients endothelial layer is left on, the risk of rejection is reduced massively because the body doesn’t realise that a new cornea has been placed on top. This in turn means that less steroid drops are needed than with a PK. (prolonged use of steroid drops can lead to cataracts forming and liver problems)
  • Because the whole cornea isn’t removed, the eye retains some structural strength, and may be less vulnerable to injury than an eye that has had a PK.
  • Healing time tends to be quicker- stitches can sometimes be removed six months after the operation instead of the usual 12-18 months for a PK.

Cons:

  • The operation itself takes longer and is technically more demanding than a PK because the surgeon needs to split the cornea into layers and remove them individually. Sometimes it becomes impossible to complete the operation as a DALK and the surgeon needs to convert it to a PK.
  • Because the donor cornea is placed onto layers of the patients cornea, the vision achieved after a DALK can be less crisp and clear than with a PK.

Despite the cons associated with a DALK, it was actually the fact that I was suitable for this kind of procedure that swayed my decision to have a transplant. One of my main fears about having a transplant was that the new cornea could reject and fail. When a graft fails the patient either needs to use strong steroid drops for a long period of time (which as noted above can lead to its own complications), or a new cornea transplant must be performed. The problem with this is that each time a new transplant is performed, the chances of success become less and less, so that by the fifth or sixth transplant, the chance of success is 50% or less (the chance of success for a KC patient on their first cornea transplant is said to be 90-95%).

Because a DALK almost eliminates the chance of rejection and lessens the recovery time, it seems to be a far more beneficial procedure than PK, and I’m willing to put up with a slightly less clear visual outcome if it means that the healing process is less complicated.

So that brings us pretty much up to date. I’ll be having my operation on August 22nd 2011 and I’ll try and give a full account of what happens as well as regular updates on how the healing process goes for as long as I can. Fingers crossed!

Introduction: Me and my Weird Cornea

Hi, my name is Steve and I live in the UK. When I was 15 I was diagnosed with an eye condition called Keratoconus, and on 22nd August 2011 I’ll be having a DALK cornea transplant on my right eye. In this blog I’ll try to give a full account of what it’s like to experience a cornea transplant, as well as general information about Keratoconus and cornea transplants, so that anyone considering a transplant can perhaps gain a better idea of what’s involved. I’ll try to be as accurate as possible when giving factual info, but I might slip up now and then. If in doubt- Wiki it! http://en.wikipedia.org/wiki/Keratoconus

My Experience with Keratoconus

When I was fifteen the school nurse came in one afternoon to carry out routine eye tests for the whole of my year group. As far as I was concerned it was nothing more than a chance to get out of maths for half an hour- I thought I had perfect eyesight; I’d never had problems with my vision before and I didn’t expect to this time. When it came to my turn I stood in front of the chart, covered my right eye and read all of the lines perfectly with my left eye. Then I covered my left eye…and actually couldn’t believe what I was seeing. Everything was a blur and I could only manage to read the top four lines on the chart. I hadn’t been aware of any change in my vision before that point, and couldn’t help laughing at how bizarre it was. The nurse actually thought I was just messing around and made me read the chart another four times before deciding to refer me to an optician. My appointment was a few weeks later and after a few hours of eye tests, drops, scans and some very unsexy eyewear I was eventually diagnosed with a condition called Keratoconus (pronounced ‘Kera-tuk-onus’)

Keratoconus (I’ll refer to it from now on as ‘KC’) is a condition which affects the cornea. The cornea is the transparent part at the very front of the eye which allows light to pass through the eye and, most importantly, has a perfectly curved shape which allows light to be refracted properly. A healthy cornea will have a round shape (a bit like a football) and will help to produce an image which is clear and sharp.

For some reason when a person has KC the fibres in the cornea begin to break down and the cornea changes shape. Instead of being a round spherical shape, the cornea becomes thinner in certain places (usually the middle), causing it to become ‘cone’ shaped- bulging out in the centre so that the light entering the eye is refracted differently.

The result is that vision becomes distorted and blurry. Some people can also experience light sensitivity and ‘ghosting’ of images. Most people tend to develop it in both eyes, although usually one eye is a lot worse than the other. In my case I have KC in both eyes, but my right eye has always been a lot worse than my left. I can still read all but one of the lines on the chart with my left eye, but I can’t read any of the lines with my right eye, which shows how differently the disease can progress in each eye. In the picture below, the top left hand square is how I see with my left eye, and the bottom right hand square is how I see with my right eye.

It’s also important to note that Keratoconus is a very subjective condition- each person will have differing qualities of vision depending on how advanced the condition is, and whether it’s in one or both eyes. Also, two people at the same stage of KC will react to it differently- one might not notice the decrease in vision as much and feel that they’re able to function perfectly fine, while the other may find it more difficult to cope. To add to that, it’s near impossible to predict how KC will develop; some corneas will change slowly over many years, others may change quickly within the space of a few months. Some corneas might not show any change at all. It’s hard to predict when or if a cornea will change, why it will change and to what extent it will change.

KC affects approx one person in two thousand, occurs in all ethnic groups and affects males and females equally. As yet no one knows what exactly causes people to develop KC. One theory is that excessive eye rubbing can trigger it (I did used to rub my eyes a LOT when I was around 13/14 years old). Another theory is that an imbalance of enzymes in the cornea makes the cornea more susceptible to oxidative damage from free radicals in the air, causing it to weaken and bulge forward. A genetic link to Keratoconus is also being researched, as there are often multiple cases of KC within families, although in my case no one else in my family has the condition. Some excellent research is being carried out into the causes and treatment of KC, but so far no definitive cause or cure has been established.

Living with KC

The majority of people with KC live completely normal lives- like most eye conditions the need to wear glasses or contact lenses can be a bit annoying, but people with KC can achieve perfect vision with them . In early/ mild stages of the condition glasses can be used to correct vision. For moderate/ advanced stages hard contact lenses are used and most people can achieve 20/20 vision this way. Soft contact lenses don’t work for KC patients, as the lens just ends up ‘moulding’ itself to the shape of the cornea, whereas hard lenses give back that round spherical shape which allows light to be refracted properly again. Anyone who has ever had to wear hard contact lenses will know that they can be a bit of a challenge to wear. I’ve never been able to get used to hard contact lenses, and although I’ve always been fitted for pairs since I was diagnosed at 15, they’ve never really played a major part in my life. Because my left eye only has mild KC and has always had really good vision, I’ve just been able to cope without them and it’s only really been in the last 12 months, as the vision in my right eye has deteriorated, that I’ve felt the need to wear them.  Luckily there are a whole range of lenses now, such as Kerasoft, which are a combination of soft and hard lens and are much more comfortable to wear.

The problems start to occur if or when a persons KC starts to progress. As the cornea begins to ‘bulge’ out more, it becomes more difficult to fit lenses properly or achieve good vision. This is what happened with my right eye. The cornea on my right eye is now so steep that I can’t read any lines on the chart with it, and even though I’ve tried a lot of different types of contact lens (including Sclerals and mini sclerals), the best vision I can get with them is to read the top 3 lines on the chart. It’s only at that point- when the option of lenses has been completely exhausted and all other avenues have been explored, that consultants start to talk about cornea tranplants. Transplants are really only seen as a last resort, and less than 10% of KC patients actually get to the point where they need a transplant (I’m just one of the unlucky ones!). I’ll go into the details of what’s involved in a transplant, and how and why I came to the decision to have one in the next post.

Why I’m Writing This Blog

Like everything now, there’s a huge amount of information on the internet about cornea transplants- the risks, procedures, statistics etc. However, I’ve also noticed that there doesn’t seem to be many personal accounts of what it’s like to actually experience a cornea transplant- what is the pain like? What happens on the day of surgery? How long does it take to heal? Deciding to have a transplant can be a huge deal, and while reading personal accounts probably wouldn’t have changed my mind a lot, they would probably have helped me to prepare myself mentally for what’s involved. Most of the blogs I’ve read tend to end a few weeks after surgery and don’t give a long term picture, so in this blog I’m hoping to continue it for as long as possible and be as detailed as I can, meaning that anyone considering a transplant can get a better idea of  what it’s like to actually experience it.