Part Two: Unraveling the Mystery of a Puzzling Illness 2019

April 2019 - Gastroenterology Clinic RUH

After my shock blood tests results came back from my GP, with the confirmation that I did not have Glandular Fever but liver failure. I was referred to the Royal United Hospital in Bath (RUH). I had more blood tests, questions about my lifestyle. Do I smoke - no. Do I drink alcohol - yes.

The second visit could offer me no answers, I remember the young Dr telling me about the meeting they had had where they were all scratching their heads trying to work out what was affecting my liver.

I was now under two hospital trusts. Bristol (BEH) for the eyes and Bath (RUH) again but this time, under the Gastroenterology Team with the amazing consultant Dr Maltby. At least I had the Uveitis/Sarcoidosis diagnosis confirmed. The liver was another thing in trying to work out a diagnosis. Not knowing was worse that knowing. Meanwhile, I just carried on trying to be as normal as possible and hoping they would find out and start treatment so I could get on with my life.

May - 1st Hospital Admission RUH

Strolling blissfully along the road, my phone suddenly rang. It was Dr. Maltby. I can't remember many details of our conversation, except that she told I needed to come into the hospital because they wanted to do further test and to bring an overnight bag with me as well. The last time I was in a hospital was when my son was born 21 years ago. I was taken aback and asked what to pack in the bag. She simply said the usual essentials. ie dressing gown, slippers, night dress etc. I then asked when she wanted me to come in. "This afternoon," was her prompt response. I was stunned. I can't remember how I got home and packed or who or how I even arrived at the hospital.

That afternoon I checked into the hospital at the Ambulatory Care Unit apparently with deranged LFTS (Liver Function Tests). This description was in the letter from my GP to Dr Maltby hence the urgency to be admitted to hospital. One nurse referred me as the 'Mystery Lady', Why? I asked, because no one knows what's going on with you was the reply. Great, why can't I be have a normal disease then it can be treated and I can just get on with my life.

Everyone puzzled with the unknown cause of my failing liver. Despite being a non smoker and a social drinker, the consultant disregarded them as it was not due to my lifestyle. Numerous blood tests were conducted and still, no answers.

During my two-week stay, I underwent more tests. I was so bored and restless surrounded by very unwell patients in the gastroenterology ward. I do remember thinking would I end up as ill as them?

On the first day a young man came to visit me. He said he was from palliative care, asked me some questions and gave me a leaflet. Palliative Care?? I struggled to recall the exact nature of what is was and as he talked away, it suddenly clicked. I didn't feel unwell, I wanted to get back to normal. I didn't need palliative care, I was perfectly well and gave him his leaflet back and told him to go away in the nicest possible terms.

I developed a routine very quickly. I would shower and dress after the doctors' and matrons' rounds, take my medication and breakfast, then catch a bus into Bath to walk around the nearest park to briefly escape the hospital. Lying in the sun with my headphones on listening to music saved my sanity and clocking up on some natural Vitamin D. However, I always made sure to return in time for lunch and the second round of medical checks. Two weeks of this almost drove me insane with boredom.

Only once did I almost miss the deadline. I pleaded with them to go home one Sunday with the promise I would return in time for the evening meds. I must have driven to the hospital because it felt like freedom driving my car again! Arriving home was wonderful. The boys were glad I was home. I just wanted to do the normal things, being a Mum again and not some freak mystery woman with an unknown illness that no one could fathom. I tried to clean and do the washing, anything than just lying on a hospital bed but I found it exhausting so I just lay there watching TV until it was time to return to the hospital.

Remembering my promise, I jumped back in the car after saying goodbye to the boys and had this over urge feeling to eat a MacDonalds beef burger - god knows why - I think I had miss the evening meal. So I popped into the drive through service and ordered one. It was disgusting! The taste was so awful I was almost ill. Looking back, this was the liver in decline and it must have been all the chemicals in the ingredients because I could eat the hospital food - both courses.

Observing other patients was interesting; some, like me, seemed normal but some were yellow. I was definitely more yellow than most. Due to my bilirubin levels increasing instead of decreasing, was the reason I was not allowed to go home. Medical notes said 'Ms King remains afebrile and well on the ward, mobilised independently.

Hospital food. I loved it. I didn't care what it was, mainly because I didn't have to cook for 3 people, clear up and put it all away. I just chose from the menu, ate it and slept afterwards. Bliss.

First time the words 'Liver Transplant' is mentioned

RUH Notes:

My consultant told me that until they took a liver biopsy, nothing could be done. Bilirubin was still going up. If fails, liver organ is the next step. What??? Bloods taken. BP and temp ok.

During my stay, two friends and Mother came to visit me which was lovely. My friend Audra whom I had been to Majorca with became upset when I told her I could be quite ill. Thinking out aloud, I told her about my gut feeling in that I didn't think it was going to be a good outcome. I shouldn't have spoken my thoughts. I had to comfort her, gave her a big hug and told her it will be fine. I saw people looking at us with sadness. I think they thought she had the bad news and I was helping her. Too many people in one day and I was exhausted.

RUH Notes:

Moved up to Hagarth Ward from Ambulatory Care. Assessed BP and temp ok. Feel absolutely shattered again. 1x stomach injection. Hate it. Saw nurse Matt who spoke to the Drs. He told me it was viral and not alcohol related. Spoke to a Dr who said the same as Matt. Two things, ALT and ALP have come down. Thank god! Went for a walk, Michelle (daughter of the patient to my left) told me I looked less yellow today. Thank God. I must be getting better! Feeling positive - no liver transplant!

Had my blood taken again today and was told my liver had gone marginally up. My GP, Dr Durrant called and I tried to explain as much as I could in my own words. Rest of the journal is taken up with bloods, medication, always feeling hungry, blood clot injection. Caught the bus to Bath to met Mother. Returned in time for supper and meds.

I was told a liver biopsy is now the next step in the process of trying to solve my liver mystery. The procedure is that you lie on your side as the needle is inserted through the skin below the lower rib on the right side of your body. It's not suppose to be painful due to the local anaesthetic, but it can be quite frightening. I didn't want the boys to accompany me as I wanted to protect then as much as possible. Instead I asked for a nurse to stay by my side during the procedure to hold my hand as I was feeling like a coward and was frightened to death. I remember hoping they find an answer because I had a design job to do and want to get back to normal.

RUH Notes:

Nil by mouth. Had biopsy done. Horrible. Nurse held my hand, very scary. Slept on and off most of the day. Told need to stay in another night for a blood test to monitor levels and need the blood clotting injection. Fed up and want to go home.

Almost home. Bilirubin went back up x 9 points so had to stay in!

RUH Notes:

Finally going home.

The Diagnosis

Liver biopsy results showed Granulomatous Hepatitis attributed to Sarcoidosis given raised serum ACE levels, Uveitis.

At last, the awaited diagnosis arrived. It turned out that I had Sarcoidosis, which initially impacted my eyes causing Uveitis, and later spread to attack my liver.

May - Discharge letter RU

Yes! I was finally going home with good and bad news. We finally have a diagnosis and the liver function going down but bilirubin was still going up.

Extracts from letter RUH:

Clinical Narrative:

Bloods: Bili 380, ALP 837, ALT 675 on arrival

Ms King presented to the RUH Ambulatory Care Unit with derange LFTs after referral from her GP. She reported a 1 week history of proceeding flu like symptoms, sore throat and lymphadenopathy which her GP started on ....

She reported a 10 day history of jaundice and no previous liver issues. Hepatitis A, B, C and E negative. Others negative. Normal immunoglobulin levels. Norma pancreatic duct. Normal spleen, adrenals and kidneys. Normal bone marrow signal USS guided liver biopsy was performed on the 16/5/2019 Ms King remained afebrile and well on the ward, mobilised independently. Her liver function tests improved throughout her admission.

Plan: GP to review LFTs twice weekly until liver clinic appointment Start 40mg prednisolone for 2 weeks HRCT chest booked as out patient

Bloods: Bili 380, ALT 675, ALP 837 on departure

ALP: Alkaline Phosphatase

ALT: Alanine Aminotransfrase

Bilirubin: Bilirubin levels in the blood can indicate how well the liver is functioning.

May - Out and about

I remember spending time with friends during the May Bank Holiday weekend when this photo was taken, and there were a few people who didn't recognise me, which I was quite surprised by. I remember that I had a yellowish hue, particularly around my neck, and I was gradually becoming smaller.

Designing and mild cognitive impairment

I was still working full time teaching and whilst I was in hospital, I had a visitor, my old MD from one of the design agencies when I worked in London.He had already briefed me over the phone about a branding job but was happy to come to the hospital to brief me face to face. He told me only a while ago that he was pretty shocked at my appearance, I had started shrinking after developing a curvature in my spine called Kyphosis. I hadn't noticed it but others must have.

Once discharged and back at home, I started to work on the brief. After some time, I realise that I was struggling to focus and was becoming tired very quickly. The ideas I had conceived and jotted down in the hospital were not transpiring into initial concepts. Although I had a clear vision of what I wanted to accomplish, I was unable to translate the ideas using Photoshop and Indesign. The progress was slow, and I was really struggling.

We designer usually have a gut feeling when we've nailed the perfect design, colour, font, and so on but I was having great difficulty with this. However, I eventually produced a few designs and while I did put together a small presentation, deep down, I was knew it wasn't my best.

It was when I was told my name was on the main presentation as the designer, I finally realised I could no longer produce the high standard of work expected from me. I knew my brain wasn't functioning as it should. I mentioned this to Dr. Maltby because I also felt that I was stuttering with my words. My brain was telling me one thing, but trying to verbally express myself, had a time lapse. She explained that I was experiencing 'brain fog' which is a condition where the brain starts to become confused, slows down and memory lapses. Sadly, I had to tell my client that I could no longer continue with the design much to my disappointment.

The 'brain fog' information started to make sense and it terrified me. I didn't want to loose my mind. There were moments of complete blankness. For example, trying to spell a simple word, I just couldn't. It was like a black hole in my mind with no recognition of the spelling.

At work, I started experiencing similar blank moments and extreme fatigue. I began taking naps during lunch breaks to save my energy. It was after this clinic, I decided to up my notes of every clinic and my progress just to keep me occupied, alert and sane. I also took up crosswords, extra reading, crosswords, anything to keep my mind busy.

June - Notes

Decided to start a blog of my journey into a new part of my life .One where it doesn't happen to me... but how it all started....

Saw the lovely consultant Dr Maltby. She explained a lot which made sense and it had also been mentioned when I was on the ward but didn't fully understand all the jargon. The plan is to reduce the jaundice in time for Birmingham - which it was coming down. I need to make a plan of upping my liquid intake and get rid of the stress. (SIC)

June - Eye Clinic BEH

Bristol Eye Hospital updated diagnosis including Sarcoidosis of the liver.

Extracts from BEH letter:

Diagnosis: Bilateral intermediate Uveitis

Previous raised intraocular pressure

Sarcoidosis with hepatic involvement diagnosed in May 2019 (liver biopsy positive for Sarcoidosis

It was a pleasure to review Mrs King in the Uveitis Clinic today. She has told me that she feels her eyes are fine and the visual acuity is much better but she is still suffering from itchy skin and jaundice.

Mrs King has an appointment in the Hepatology Department in Bath (RUH) tomorrow where a decision about her further immunosuppressive treatment will be made.

Steroid Side Effects

Lunch one

Starting steriods

Lunch two

Same restaurant but one week later By now, the steroids were taking effect and the bilirubin was still climbing. This is my steroid moon face. I hated it and was very conscious of it. However, I refused to hide away and my hair was still relatively healthy and full of body. I was ok but still losing weight.

Next Read:

Part Three: Starting treatment 2019

Click here for Part 3