Part Four: The Liver Assessment - 2019

October - Phase One Transplant Assessment QE

Returning to Birmingham by train for the Phase One investigations for the Assessment. This involved a variety of tests such as blood tests, chest x-rays, echo cardiogram, ECG, pulse oximetry, ultrasound and so forth.

I had booked a room at Nuffield House on the hospital premises, which offers discounted rates for families of patients and individuals like myself. When I arrived at Birmingham, it was completely dark. I left the train station and ended up getting lost in the pouring rain, windy weather, which was the worst possible conditions to be outside while feeling frail, cold, hungry, and disoriented. Eventually, I managed to locate Nuffield House. The building, which used to be a hospital, is very old. The hospital rooms have been converted into bedrooms, and I found the atmosphere quite eerie on my own.

On arrival, I received the room key enclosed in an envelope due to my prior booking. The room was located down a lengthy quiet corridor. I remember entering the room, I noticed it was extremely cold, so I turned on the heating and walked back down the corridor to the communal kitchen and sitting room with sofas and a TV. I met a couple of people and we chatted. A mother was telling me about her daughter and her procedure and how staying at Nuffield house made it affordable to be close to her daughter.

The following day was very busy. The first assessment took place with all the various tests. These involved: Blood tests, Chest X-ray, Lung function tests, such as a spirometry, an ECG, Fitness test, an eEchocardiogram (ECHO) a Kidney function test, a Coronary Angiography, CT or MRI Scans, an Endoscopy and a psychological assessment.

It took virtually all day and I just wanted to rest, but I had a long train ride back home. Afterwards, I changed back into my regular clothes and walked to the train station. It was dark, the train was crowded, and I had to stand until Cheltenham where I had to transfer and wait in the cold for the next train. I had never felt so exhausted, cold, and hungry, with no energy left after staying awake all night at Nuffield House. I had bought myself a large warm puffer coat with a huge fur hood for future winter appointments, but after this journey, I realised that I would no longer be able to rely on public transport alone because I had no more energy left in me. Driving had become impossible because of my cloudy eyes and would have to work out alternative ways for my future appointments.

Nuffield House

Extracts from QE letter:

Many thanks for referring Ms King for transplant assessment. I have had the opportunity to review her Phase 1 Investigations. She has clear indications for transplant with ductopenic chronic hepatitis in the setting of multi system sarcoid. She has marked cholestasis with jaundice (bilirubin >300) which is impacting her quality of life.

Her ultrasound demonstrated mild splenomegaly, with no evidence of ascites and a portal vein. Her chest X ray clear. ECG and sinus rhythm and her echocardiogram was unremarkable apart from a very mild mitral regurgitation. Her left ventricle was normal in size and function. Her spirometry was very mild restrictive. Her blood tests are in keeping with a ductopenic chronic granulomatous process resulting in a marked cholestasis with normal platelet count and normal INR. She will proceed to Phase 2 Transplant Assessment and we will keep you updated on her progress.

October - Help Arrived

Following a joint birthday party for my son and nephew, my brother, Tim and sister-in-law Jackie had noticed my declining health. I had kept myself to myself, only tell a few friends and obviously the boys and Mother to some extent. It was becoming very obvious with my weight loss, a yellowish-green complexion and a lack of energy - hence the joint birthday party.

It was during this occasion that I finally told them about the seriousness of my liver condition, including my time at Nuffield House and the exhausting train journey. This was the first time I admitted the full situation. I had not even told to my sons all of it. At times, it's easier to shield loved ones from distressing news to spare them from worry. They offered their full help and I was so relieved. I now had help in transport to Birmingham and I started to relax. A small group of close friends also offered their help with the driving so a rota was set up by my brother for future clinic appointment.

Extracts from QE letter:

Diagnosis:

Hepatic Sarcodosis - awaiting transplant assessment Inflammatory features and profound ductopenia Symptomatic from marked cholestasis Sarcopenic No response to steroids or ursodeoxycholic acid (bilirubin remains >300)

It was a pleasure to meet Caroline in clinic today. Caroline is in the process of transplant assessment. She has known multi system sarcoidosis with symptomatic marked cholestsis and histological findings of profound ductopenia. She struggles with sarcopenia, interactable pruitis and fatigue. She underwent Phase One of her transplant assessment last week.

Caroline has continued to feel unwell and her appetite has reduced. We have commenced sertaline for pruritus in clinic today. She has struggled with the volume of Fortisip and we had discussed a trial of Renapro supplemets through her GP. She is due to see the dieticians and she is aware that maintaining her nutrition and muscle mass is vital going forward. She is very eager to hear the verdict from Phase One and proceed with transplant assessment and I have reassured her that she will be contacted by the transplant co-ordinators with the timing of this.

Bloods: Bili 332, ALT 656, ALP 1177

21/24th October - The Liver Transplant Assessment Day

The Assessment Room at the Queen Elizabeth Hospital, Birmingham

I remember feeling quite anxious on the day we set off, knowing it would be a full on 2 and a half day assessment, but I was grateful for the fact that I would be driven to Birmingham and not be alone. No more train rides in the chilly darkness! Luckily, Tim had arranged a hotel stay after hearing from Jackie about my journey to Nuffield House. She had told me that I would never have to go through that alone again.

The Liver Transplant Assessment Days includes having the opportunity to meet the full team, comprising surgeons, coordinators, nurses, dieticians, and anaesthetists. On the first day, a strange thing happened where several men in suits unexpectedly entered the assessment room at 11:00 pm, asking for me. Brother and sister-in-law were at the cafe, so I went off with them to a separate room. I can't recall their names. They asked me a question that caught me off guard - how did I feel about having a transplant. I was put right on the spot so I simply said the first thing that came into my head. " Obviously I need one to survive and if I am successful during the assessment, I would really appreciate it, thank you".

They asked to see my liver area, then they had brief discussions, nodded to each other and told me that I was placed on the list, but I also had to complete the assessment procedures. I'm still puzzled to this day especially because from what I saw, no one else underwent a similar experience.

The next day included additional blood tests, weight measurements, stocking up of protein shakes after talks with the dieticians, followed by an afternoon session with a guest speaker who was a liver recipient. The speaker discussed the procedure and addressed any questions from the group. I want to know if he ate king prawns and smoked salmon - two of my favourite dishes.

My birthday fell on the 24th, and it turned out to be a memorable day. Jackie bought chocolates from the cafe and we shared them around with my fellow assessments group. By the time we left in the afternoon, I was so exhausted I slept like a log all the way home.

Once all the tests were completed, the multidisciplinary team (MDT) met on the Friday morning to decide the assessment groups outcome and the phone call confirming yes or no would come on the Monday morning.

Extracts from QE letter:

Thank you very much for referring this 57 year old lady for a liver transplant assessment. I am pleased to say Caroline has completed this assessment during the week of 21st October. She has a very interesting disease process. Very reasonably, you think she has developed a ductopenic hepatitis in the context of multi-system sarcoidosis. Principally, the sarcoidosis is affecting her eye and has recurrent relapsing uveitis. You have also thought about the ductopenic variant of Primary Biliary Cirrhosis. Nevertheless, what is clear, is that this lady has significant indications for liver transplant. Despite medical management of her disease, her bilirubin remains greater than 300 and she is obviously significantly Sarcopenic with this.

Her case was discussed at the Transplant MDT meeting on Friday 25th October 2019. The Transplant Team feel Mrs King is an excellent candidate for liver transplant. They did note that her malnutrition is a relative contraindication to transplantation but it is relative and not absolute. She has been given a new steer on her nutrition by our Dietetic Services. All in all, we felt that Mrs King should be listed as soon as possible for liver transplantation. In summary, your patient was assessed for liver transplant. She has an unfortunate illness which is apparently irreversible in terms of medical management. We feel that her extract deteriorating clinical condition and liver functions are clear indicators to list her for a liver transplant immediately. There is no significant outstanding issues to address, but Mrs King will need to address her nutrition carefully while she waits for her liver transplant. We are very grateful for Dr Rajoriya for following her up in the Waiting.

28th October - The Confirmation Call

My phone rang on Monday morning to confirm I had 'made' it on the Liver Transplant List. Even though I had been told on the morning of the Assessment, it was a relief to be told through the correct channel and it was an incredible feeling. However, I also felt sadness knowing that someone would have to have passed away for me to have this chance at life, and I couldn't help but wonder how their family would feel. It was a bittersweet moment.

Extracts from QE letter:

I am pleased to inform you that Mrs King has been added to the Liver Transplant Waiting List today, 31st October 2019. During her assessment, it was found that she has no immunity to hepatitis B. Therefore, in accordance with our transplant protocol, I have requested that she contact her GP Surgery to arrange vaccination against hepatitis B.

This should be given in accordance with the BNF Accelerated Programme.

We will contact you again once her transplant has taken place.

October - Another Design Brief

Once again, I was recommended to design another project, and yes, it was another Order of Service! Of all the jobs in the world, you couldn't make it up - a dying designer, designing another Order of Service for her former Chair who had passed away. The design was due to be completed and printed for February 2020, giving me quite some time, and the client was away for Christmas until the new year.

November - Gastro RUH Clinic

I recall visiting this clinic and having a lovely conversation with Dr. Maltby. I was so happy that the itching had gone. I told her that following my transplant, I planned to get up, and go for a walk. I felt great again from no itchy - only those of us going through the dreaded itch will understand the sheer agony of living with it.

Extracts from RUH letter:

It was a pleasure to see Caroline in clinic today and I was delighted to hear the news that she has now been listed for transplant. She has already embarked hepatitis A and hepatitis B vaccination. I note that the Ophthalmology team put her back onto Prednisolone treatment for her Uveitis towards the end of October and she is currently on Prednisolone 20mg daily having reduced to this dose approximately a week ago. And additional benefit of being on the Prednisolone Caroline has noticed that her very troublesome itching has resolved and that her moral is much better.

I have explained to Caroline that there is a balancing act with regard to the Prednisolone in terms of how much better it makers her feel vs any concerns that it may make her more vulnerable to infection or impair wound healing heading towards a liver transplant. She tells me her itching is starting to creep back in with the recent reduction to 20mg. I have previously been reluctant to introduce Rifampicin for itch. She is working very hard at following the instructions given to her by the Dietetic team in Birmingham, eating as much as she can and taking nutritional supplements. She does think she has rebuilt a little muscle bulk in her arms.

I understand that presently her next appointment with the team in Birmingham is due to fall on Christmas Eve. I will look out for the results of er blood tests and have made plan to see her again. in the New Year.Obviously we are all hoping tat a suitable liver may become available for her sooner than later

Goodbye London

The last time I visited London before my transplant, I met up with two long time friends. Both had been extremely supportive and it was time for another get together. Having lived and worked in London, I still return to catch up with friends and revisit familiar places and for what I call my 'London Fix'. I need the buzz, noise, bars and the memories, then I'm happy to return to the quiet life until the next time.

We mostly meet in the same location—a beautiful luxury hotel tucked away in St. James's. Both puffing away on their Cohibas and sipping Martinis -- no more Martinis for me! Despite feeling self-conscious about my thinness and yellow appearance, it was a wonderful evening. My two friends, showing impeccable manners, tactfully avoided mentioning my complexion but asked about my on going treatment.

Finally, it was time to leave as my Uber turned up. I held myself together as I said my goodbyes and got into the cab. As we drove away, I glanced back and was overwhelmed by a wave of sadness, feeling it was my final goodbye to my friends and the hotel spanning almost 15 years of lovely memories. I took in every sight from St. James's to Paddington, believing it might be my last visit to London. This was a deeply poignant time for me.

December - Gastro Clinic RUH

Extracts from RUH letter:

Bloods:

27/11/2019 - Bili 412, ALT 298, alk phos 1647, INR 1.06

6/12/2019 - Bili 489, ALT 272, ALP 1924 INR 1.19

Plan:

Increase analgesia for back pain - start regular gabapentin and PRN Oramorph

Urgent ultrasound abdomen. Repeat bloods today

Extract's from RUH letter:

It was a pleasure to see Caroline in clinic. She has been seen by the team in Birmingham and is on the list for liver transplant. She contacted us and was seen in clinic today due to two main concerns. The first is an increasing swelling in the abdomen over the last three weeks since she was last seen by Dr Maltby o the 20th November. She finds her abdomen has swollen increasingly and it is causing discomfort. The second issue is of severe and persistent back pain. Caroline remembers when this started at the end of October when she bent to pick up some shopping. She has back pain before but it has always settled fairly quickly, while this has continued and she actually feels this has got worse.

She is troubled by back spasms and really struggles to get out of bed in the morning. Despite taking regular Paracetamol and Codeine, she is still in severe pain and struggling to mobilise in the clinic today. In terms of mre She reports of feeling more tired in herself. I noted her pruritus has continued to not be so much of an issue as she continues to take 20mg of Prednisolone. She denies fevers or shakes and her weight has generally remained stable with the prescribed dietary supplements at 51.2 kg today from 52 several weeks ago.

On examination today, which was difficult as she found lying flat extremely painful. We plan to get an urgent outpatient ultrasound to clarify if there is any ascites present in which case we could start some diuretics. I have requested this and the ultrasound team have kindly arranged for it to be done next Thursday. I have also repeated bloods today and will look out for these. Caroline was planned to be seen in Birmingham on the Christmas Even but cancelled this as she was unable to get a lift and is now being seen early January.

I vividly recall the moment when I felt a sharp pain in my back. It happened while I was placing a full bag of shopping from the cart to the car boot. The sound of 'crack' rang in my ears, and my initial reaction was that I was in big trouble. I knew I shouldn't have lifted that bag but I did it because I wanted to be normal. Little did I know that this incident marked the beginning of a new health issue, adding to the existing problems with my eyes and liver.

December - My last day at work

The dates are a little hazy but I had felt ill in the morning. The adult learners must have over heard me telling someone I had either a head or tooth ache because at the start of the afternoon session all 8 of them produce an un opened packet of paracetamol for me to take. That was very

a touching moment of kindness.

However, I had to dismissed the class and go home early as I had no energy left. I remember going to the staff room earlier than my colleagues, locking my keys away, collecting my coat and walking downstairs. I was exhausted and had to stop in admin room to sit down when I realised I had no strength left to walk through the establishment to my car. Everyone was asking me if I was ok but as time went by I realised, I wasn't. A concerned colleague asked me if I wanted 'the chair?' - what's the chair I asked?

It's the wheelchair that another colleague used to use when she wasn't well either. I was determined not to leave in a wheelchair. So I held on hoping for my strength to return. Sadly, it didn't and I knew the only option was the chair. So, on my last working day, I was wheeled out in a wheel chair to my shame and embarrassment. As it was dark I pulled my fluffy hood up hoping no one would recognise me but to my horror, I hear shouts of 'Bye Caroline, hope you feel better, see you tomorrow'! I managed to drive home but that marked the end of my teaching graphic design era and I never returned to the work place.

December - Liver Clinic QE

Extract's from QE letter:

Your letter stated that the patient, Caroline King has been having issues with Uveitis in the setting of ductopenic hepatitis with jaundice cholestasis caused by sarcoidosis. I believe from the letter that when the patient was on a higher doses of steriods, her Uveitis abated and also her itch as well. I think the plan was for her3 to have a reduction in steroids, however, you point is well made regarding a compromise between management of Uveitis/Pruritus being under control with higher doeses of steroids, but the potentials of problems in our per-transplantation setting. Obviously, moving towards transplantation, we would want her to be on a low dose immunosuppression as possible and thus thoughtful measure to weaning down of steroids I would agree with. That being said, if there is a lowest amount of steroid that she could be on where her symptons are better under control from her eye and her itch, then I would advocate staying at this dose. If she is on steroids heading into the per-transplantation period, we would need to factor this n and we would raise awareness to our Anaesthetists as required (E,g if degree of adrenal insufficiency etc).

My last works Christmas Party December 2018 Left photo

Guest invite works Christmas Party December 2019 Right Photo

December - RUH

Extract's from RUH letter:

Diagnosis:

Bilateral significant posterior subcapsular cataract bilateral posterior uveitis/sarcoidosis - under the care of Bristol Eye Hospital

Awaiting liver transplant in Birmingham

I reviewed Mrs King in the Cataract Clinic today. She has decreased vision in both eyes mainly secondary to posterior sub capsular cataract secondary to steroid intake. She is under the care of Bristol Eye Hospital du to bilateral posterior Uveitis which is sarcoidosis related. She is awaiting a liver transplant in Birmingham. On examination bot anterior chambers were quiet. There was significant posterior subcapsular cataract and fundus exam shows no sign of active choroidal lesion. OCT rules of macular oedema.

Mrs King is mainly under the care of Bristol Eye Hospital Uveitis Team. Regarding her cataracts we would be happy to proceed with cataract surgery under our care whenever Mrs King decides to go ahead with it. Please refer her back to us when this is the case. I would appreciate advice from Bristol Eye Hospital in terms of peri-operative treatment.

Next read:

Part Five: Ongoing Treatment 2020

Click here for Part 5