Part One: Life Changing Events 2018/19

September - Event One 2018

Two events unfolded which changed my life for ever. The first one happened whilst watching TV one evening. I noticed a difference in one of my eyes. It appeared as a visual disturbance, resembling scratches in my vision in the right eye. Although I was concerned at first, I hoped it would resolve by morning. But, to my horror, it didn't. The scratches were still there. I was still able to drive so arriving at work, I contacted the opticians to explain this strange visual experience. They advised me to come the following morning for an eye examination, The day went well without any more disturbances until I drove back home from work and on arriving home, it happened again.

Following what seemed like a very long eye examination at SpecSavers, the optician completed the assessment in silence. He then told me to go for a walk while he prepared a letter for me to take to The Royal United Hospital in Bath. After a phoning the hospital, he then recommended waiting until Monday morning as a particular machine was not in use during weekends. I remember starting to feel slightly concerned about the the situation.

Once home, my phone rang and it's a consultant asking me to come to the hospital. Alarm bells began to ring so I jumped in the car and drove to Bath. I was met by a consultant called Mr Kiani who examined my eye and advised me to return Monday morning. I asked if anything was serious and he replied that the optician noted elevated eye pressures in both eyes. He prescribe eye drops and I went home and spent the weekend worried.

A & E Department - Royal United Hospital

Arriving at the hospital, I underwent a thorough evaluation by the same Dr. He carried out numerous tests and I returned home with a stack of eye drops that needed to be applied hourly. .

Extracts from RUH letter:

IOP: 32 mmHg Right Eye - 29 mmHg Left Eye

Mrs King was seen in the Eye Clinic at Royal United Hospital on 1st October 2018

Management plan/Comments:

Several episodes visual disturbance last week and optician noted high pressure

Impression: Bilateral painless hypertensive Uveitis, requiring further investigation

Treatment: Cosopt 2xd, Latanaprost at night, Maxidex hourly, Cyclo 1% 2xd

Plan: Chest x-ray and blood tests requested to be done on Thursday when she comes for a review in the Eye Clinic.

Four days after my appointment at the Eye Clinic, I wore my new large glasses and a hat to shield my eyes. I was pretty relaxed knowing that the situation wasn't severe, and with the help of eye drops, I was able to reduce the pressure in my eyes and return to work the following week.

October - Majorca

I have never had any serious illness in my life and to have the eye issue was a shock. I had plans to travel to Majorca for a long weekend with a friend and I was worried I wasn't able to travel with all the medication but Mr K told me go go head and enjoy myself. So I did. Little did I know that this would be my last holiday as a normal physically fit person. Those four days were the last care free days of my old life.

November - Eye Clinic RUH

Back for another check up. I can't really recall much from the check-up but lots of tests, scans, sharp lights and eye drops and finally a diagnosis of Acute Anterior Uveitis which meant absolutely nothing to me.

Extracts from RUH letter:

IOP: 24 mmHg Right Eye - 22 mmHg Left Eye

Mrs King was seen in the Eye Clinic at Royal United Hospital on 15th November 2018

Diagnosis: Both eyes: Acute anterior Uveitis

Treatment: Latanaprost drops: 1 drop, both eyes once a day for 4 weeks

Maxidex drops: 1 drop, both eyes, once a day for 4 weeks

Plan: Chest x-ray and blood tests requested to be done on Thursday when she comes for a review in the Eye Clinic.

Management plan/Comments:

Improved in Uveitis treatment. Continued for another 4 weeks as prescribed. Follow-up in medical retinal clinic, due to PVD (posterior vitreous detachment)

Mean while, I just carried on with the eyedrops and instructions and more appointments followed in December.

December - Last working Christmas lunch

My last Christmas works lunch December 2018 with my Secret Santa present. New Years wish? to say good riddance to 2018 and to a new, healthy happy year in 2019...

January 2019 - Eye Clinic RUH

During another examination, the word Sarcoidosis was introduced for the first time in relation to Uveitis. Despite this, I remained naively unconcerned as I had never heard of it and didn't google it. So I just continued using the prescribed eyedrops, totally unaware of the train crash I was slowly heading towards.

Extracts from RUH letter:

IOP: 18 mmHg Right Eye - 18 mmHg Left Eye

Mrs King was seen in the Eye Clinic at Royal United Hospital on 11th January 2019

Diagnosis: Both eyes: Posterior Uveitis

Treatment: Latanaprost drops: 1 drop, both eyes

Pred Forte drops: 1 drop, both eyes, tds

Management plan/Comments:

Mrs King was originally treated for anterior Uveitis in October. Her symptoms seemed to resolve and she then developed intermediate Uveitis and mild disc swelling was noted. Her symptoms are improving on current treatment. Today there was posterior Uveitis with mild disc swelling and multiple small peripheral retinal atrophic lesions (chorioretinitis). She has persistent/recurrent flu-like symptoms with a non-productive cough, sore throat and joint aches, no rashes.

CXR showed peribronchial cuffing but no signs of TB. Given that Caroline has had contact with TB via her work I have arranged for quantiferon testing. Sarcoidosis is another differential. I will therefore refer her to the Respiratory Team here at RUH and to my colleagues in the Uveitis Service over in Bristol.

February - Eye Clinic RUH

Following several appointments and during my final consultation with Mr. Kiani, he informed me that Bath Eye Clinic had exhausted all possible treatments for me. Consequently, I was referred to the Rheumatology Team at Bristol Eye Hospital for additional investigations. I was puzzled by the transfer and doubts started to set in. I also remember feeling very sad leaving Mr. Kiani, his team, and the familiar surroundings of Bath. This meant adapting to a new team, new procedures, and increased travel.

Extracts from RUH letter:

Mrs King has been discharged from further follow up, but should she have any further problems we would happily review her again.

March - Bristol Eye Clinic BEH

First visit to the Bristol Eye Hospital, I was very nervous but I calmed down after I bumped into one of the original consultants from Bath. We had a great chat and she explained why I had to be transferred to the Uveitis Department based in Bristol. I still bump into her now and then which is lovely.

Extracts from BEH letter:

Many thanks for referring this pleasant 56 year old lady to our clinic. I understand she had an episode of bilateral Uveitis and high pressure in October 2018 which resolved with drops. In January she came back with posterior inflammation. She is currently on Pre-Forte 3 times a day and Latanoprost. We will review her in 3 weeks with Opos fundus Fluorescein angiography.

The Fluorescein Angiography

I remember the Fluorescein procedure because I was so nervous. I'd never had a canular or let alone what it was. And I absolutely hate needles. I panicked and asked the nurse to remove that gigantic thing from my hand and told her I couldn't do it. Suddenly the room was full of nurses and a couple of consultants trying to calm me down. Looking back now I still feel silly at the drama. I'm normally good in situations. After lots of explanations, I got through it thankfully.

This is where I met the most amazing nurse called Rejoyce and has been my most constant nurse through out the past 5 years at Bristols Eye hospital. She was the one who did my first Fluorescein so she knows me quite well now. She is my comfort blanket. Whenever I have my appointments in both departments to this day, she is always there, smiling and calling me a 'miracle' and we always have a lovely chat.

Extracts from BEH letter:

I reviewed Mrs King today in the Uveitis Clinic. She has a clinical picture of bilateral multifocal choroiditis. She was investigated for Birdshot, her HLA-A29 as come back negative and all her immune profile investigations have come back negative. Her Fluorescein angiography with Indocyanine Green (ICG) that showed normal optic disc and only some peripheral vasculitis.

April 2019 - Event Two

The easter weekend was a beautiful sunny day. I remember strolling into town feeling happy and relaxed to buy my fresh fruits and vegetables from the local farmers market. Whilst walking back home, I recall suddenly feeling unwell in a way I couldn't quite explain. It was a sensation I had never experienced before. Something just didn't feel right and I felt slightly out of breath which I found strange as I had been to my gym session the night before and had stuck to my program of weights, treadmill, running and the cross bench regime. I remember reaching home and actually went to bed for a nap which was totally rare for me, especially in the afternoon.

I'd had the week off work and I remember shopping in Bath on the Tuesday looking for some new clothes. I was in a lovely innovated shop called Philanthropy and was looking at a new shirt. Size 12 was too big, size 10 was out of stock, so I thought I'd try a size 8 which almost fitted which I found very surprising. I remember thinking I can't have lost that amount of weight from the gym because I wasn't even trying to loose weight. I remembered feeling a bit under the weather and tired that evening but ignored it.

However by Wednesday, I began to feel worse, - not the eyes but physically and by Thursday, I was feeling truly awful with flu like symptoms, the rawest sore throat I have ever had and a heavy chest. After a visit to my Drs, I was prescribed new antibiotics that initially didn't seemed to work but by Saturday, I was feeling almost well again until my son Tom noticed something different about me that morning and remarked, "Mum, you look yellow."

I dismissed the idea as silly so checked my reflection in the mirror. All I saw was a slightly tanned complexion and thinking I looked quite healthy I decided to pay a visit to Mother and asked her whether I looked yellow. She reassured me that I didn't but recommended consulting the pharmacist to discuss any potential side effects of the new antibiotics I was taking so I popped into my local Boots to ask the pharmacist.

I do remember this. I was standing in the queue and a man kept staring at me. I caught his eye a couple of times and he kept looking away. Paranoia set in. 'I am yellow!'Tom was right. I had a choice, should I leave as quickly as possible or continue to wait. I was so embarrassed, I wanted the floor to open up and to disappear. I'll never forget that incident but I waited as I needed to know if I did looked yellow.

I explained the situation to the pharmacist in one of those private cubicles where she googled the medication/antibiotic I was prescribed. Everything seemed fine. I didn't look yellow but to be safe, she suggested seeking advice from 111. So I called them, explained the situation and carried on with my normal Saturday afternoon.

An hour later I had a phone call asking if could I pop into my local A & E to see a Dr. I remember feeling slightly annoyed as it was a nice sunny Saturday and I didn't want to spend an afternoon stuck inside a hospital. Luckily, I was seen quickly by a duty Doctor who confirmed that I did not look yellow, and my urine test results were normal and I could go back to work on Monday. Happy Days!

The next day, I distinctly remember sitting in the garden and looking up at the clear crystal sky thinking my eyes were so much clearer and I was finally back to normal. All the eye drops must have worked and I felt good again and was so happy. The Doctor had confirmed I did not look yellow. The nightmare was over!

29th April - Returning to Work

Monday morning came and I was eager to return to work. I went into the bathroom and to my horror, my skin and eyes had turned yellow! To say I was shocked at what happened overnight is an under statement. I contacted my GPs surgery as soon as they opened and told them that I had woke up a full colour of yellow and explained about the A&E visit on Saturday.

I know all the colour shades of yellow, after all, I am a graphic designer. Out of all the Pantone colours, Bart Simpson yellow came to mind. I was told to come in immediately. After analysing the urine sample which revealed something abnormal, my Doctor took blood tests to be sent in the AM delivery pouch to the Royal Unite Hospital Bath,

Don't worry was the advice, it's probably Glandular Fever as jaundice is one of the symptoms. I was then advised to not return to work until the results came back. More days at home waiting around. Finally, that early evening I received the call from my doctor informing me that my liver was not functioning as it should be. I remember thinking wasn't it suppose to be Glandular Fever?

The first leg of my liver journey had begun. Meanwhile, my Sarcoidosis Uveitis eyes appeared to be doing fine or so I thought. So, I now had two issues going on at the same time. It was at this stage that I decided to not google/Dr death with regards anything to do with liver, Sarcoidosis and Uveitis. The internet is a minefield of information if used correctly. but it's also misleading and terrifying. As a designer, it's great for researching, however in medical terms, I put my trusts in the experts. And besides, once an image or information is absorbed, it's impossible to ignore or forget about it.

I'm still glad to this day that I trusted my gut instinct and didn't use google. I also started to take notes of my symptoms because when trying to explain them, I totally forgot or they mysteriously seemed disappear when asked.

Notes: 22/4 - 29/4/2019

Monday - cut grass, drank water but felt dehydrated and exhausted.

Tuesday - felt 'hay fever' coming on again, runny nose, puffy eyes.

Wednesday - started to feel ill. Very sore throat, notice dark urine, shivers, very tired, flu like symptoms.

Thursday - Same but throat and mouth worse, no appetite, couldn't swallow, still dark urine in the morning but slightly lighter by then evening. Called nurse and started antihistamine.

Friday - Recalled nurse, appointment, had ears, chest checked. Throat, mouth and glands enflamed. Start 2 x new penicillin. Very itchy at night only, Urine sample clear.

Saturday - Feeling much better, appetite back. Can eat and swallow. Have more energy, urine still dark. Son told me I looked yellow. Called 111, saw Dr, changed penicillin to new one, she didn't think I looked yellow. Very itchy at night only.

Sunday - real improvement, can feel saliva in back of throat. Eating, drinking lots of water. Eyes crystal clear. Feel good.

Monday - Saw Dr, urine sample showed high bilirubin. Feeling good, appetite back, have energy but still yellow. Throat better. Less itchy at night. Urine getting lighter. Not allowed to go back to work until results come back.

*Itching is one of the symptom of liver failure.

Next Read:

Part Two: Unraveling the Mystery of a Puzzling Illness - 2019

Click here for part 2