Part Five: Ongoing Treatment - 2020

January 2020 - Gastroenterology Clinic RUH

Extract's from RUH letter:

Problems:

Granulomatous hepatitis with jaundice and cholestasis secondary to sarcoidosis Uveitis. Lumbar back pain, awaiting MRI scan, due on 06/0120

I telephone Caroline King today having received a letter from Birmingham with regards to her Prednisolone dosage... I was concerned to hear about her ongoing issues with severe back pain and telephoned her to get an update with a plan to request an MRI of the spine. I was pleased to see that the abdominal ultrasound that was performed to address Caroline's concerns about swelling of her abdomen has shown that she has no ascites.

With regards to her Prednisolone, the dosage has now been reduced from 20mg a day to 15mg a day without significantly worsening of her symptoms of itching. I would suggest that if possible we try to get this down to 12.5mg daily after a further fortnight. Caroline also tells me she has been experiencing some further visual disturbance and she was seen here in the cataract clinic yesterday.I will look out for the result of the MRI spine and would be grateful if you could add back in the calcium and vitamin D to her medication.

Final design job - the onslaught of Hepatic Encephalopathy

The design brief for the upcoming Order of Service (from the initial brief November 2019) was now live, and I had a clear vision of the style. While working on the design, I once again, noticed similar confused traits from the previous projects. I was surprised because I had no real serious issues designing the last order of service in October/November. It just took longer and had to be checked and re checked.

The job had to be completed and printed for February 2020, giving me plenty of time. However, this time the images on the screen appeared blurry due to the bright white glare, and to my horror, my logical thinking seemed to vanish, making it difficult to work out the most basic design size, A4. I also struggled to grasp the tools in InDesign, and my fast touch typing resulted in complete gibberish. Despite my best efforts, I found myself unable to create the booklet. I was now utterly horrid at this situation. My eyesight was also deteriorating each day, and I was still waiting for the Cataract operation.

I was very disappointed in myself because this last design brief was my tribute of honouring the man and his company who provided me the opportunity to work with exceptional clients from around the world. I managed to work out that the client had 6 weeks to hire a new designer and to meat the deadline. Thankfully, all was resolved and the client fully understood. Although I still had a place reserved at the memorial service, I simply had no strength to London. It was at this point, I started to realise that things were taking a turn for the worse.

January - QE Liver Transplant Waiting List Clinic

Returning to Birmingham was something I always looked forward to. These clinics provided a much-needed break from being at home and allowed the boys some time to relax. One particular clinic stands out vividly in my memory due to a strange thing that happened.

Feeling exhausted and with no concentration, Dr. Armstong was speaking to me with a broken leg (a rare sight for a doctor in a public) while wolves lurked in the background. This can't be real I recall and didn't take a word of notice what he was saying but wondered how he was going to do a runner with a broken leg.

Concentration back, I told him what I was seeing, and he suggested that it might be the beginning of Hepatic Encephalopathy - HE. He prescribed a medication called Rixfairm, assuring me that the hallucinations, nightmares, fatigue, and heightened clumsiness would likely be reduced within a two-week period. I hoped it would because the nightmares were becoming increasingly vivid and dark.

Liver Transplant Waiting List Clinic: Active, Blood O, Small body frame with Kyphosis, for DBD or DCD, UKELD 61, Bilil >500

*DBD: Donation after brain stem death.

*DCD: Donation after circulatory death.

*Hepatic Encephalopathy (HE): If the liver is badly damaged and unable to function properly, these ‘toxins’ can build up in the bloodstream. If they enter the brain, they can result in a condition called Hepatic Encephalopathy.

Extract's from QE letter:

Diagnosis:

1. Ductopenic Granulomatous Hepatitis secondary to systemic sarcoidosis (pc with Uveitis) -

profoundly jaundice (Bili >500 now, normal INR)

2. Cushingoid secondary to long-term steroids

3. Osteoporosis - multiple spinal fractures

MEDICATIONS:

1. Ursodeoxycholic Acid 250 mg TDS.

2. Sertraline 25 mg daily

3. Fortisip TDS.

4. Omeprazole 20 mg daily.

5. Alendronic acid 70mg once weekly

6. Zomorph SR 60mg BD

7. Vitamin A started (new)

8. Rifaximin 550mg BD (new)

6. Cosopt eyedrops.

7. Latanoprost eyedrops.

Intolerant to rifampicin, 1% menthol cream, sertraline

I reviewed Caroline today for the first time. She is active on the list and has profound disease and jaundice. She is describing symptoms of confusion, borderline delirium, tiredness and was having the odd hallucination. She does have a degree of reverse sleep pattern and slow responses even though she has a normal INR. I did think she was demonstrating symptoms of encephalopathy.

NOTE: Her bilirubin has come back at >500, normal INR, UKELD 61. We need to keep a close eye on her and we'll see her back in clinic in 4 weeks. I dearly hope she has the option for DCD as well that she will be called in soon.

This is where I started to visualise my AM and PM medication by simply drawing the shape and colour when my mind became too tired to work out the order and name of the medication.

February - First Hospital admission for NG tube RUH

I was admitted back to hospital because the problem was my inadequate food intake, resulting in further weight loss. I had to have an NG tube inserted and was given yellow supplements. I can't recall if I continued to eat regular hospital meals, but I remained there for nearly two weeks. As time passed, I grew increasingly frustrated and miserable about being in the hospital again and attached to the tube. I explained how unhappy I was and wanted to return home. I promised them that once back home, I would be more willing to eat in a familiar setting. I genuinely meant what I said.

*NG tube: A nasogastric (NG) tube is a narrow feeding tube which is placed through your nose down into your stomach.

Discharge letter

Extract's from RUH letter:

Principal Diagnosis:

Poor nutrition

This 57 year old lady was admitted to hospital on 05/02/20 electively for a period of enteral feeding to optimise nutritional status for possible consideration of liver transplant.

Background: Ductopenic granulomatous hepatitis secondary to systemic sarcoidosis (presenting with Uveitis). She has osteoporosis with multiple fractures, cushingoid secondary to long term steroids. Her last clinic review in January 2020 demonstrating profound disease and jaundice with symptoms likely related to Encephalopathy and was at this time started on Rifaxamin.

US Abdomen 12/12/19: mild splenomegaly. No ascites MRI Spine: 06/01/20: Multilevel osteoporotic collapse.

Initial Bloods: ALP 2, 120, Bilirubin 462, ALT 178

Admission weight 46.7 kg

Clinical Source;

1. Elective enteral feed Mrs King had an NG tube inserted and received 13 days of enteral feed as per our dietician plan. This was also in conjunction with her nutritional supplements and a normal diet. She required some oral electrolyte replacements and received high dose vitamins to aid with any re feeding risk. On 15th February, Mrs King developed a likely chest infection, she reported to a cough, sore throat and a degree of coryzal symptons. Flu swab performed - Negative, MSU - negative, Blood cultures - Negative.

Mrs King managed 13 days of enteral feed and felt that overall, her appetite improved. On discussions with Birmingham they felt that ongoing optimisation would be appropriate as a longer term goal, such as she was referred for an NJ tube and for continued enteral feeding in the community. She will be seen by community dieticians and nutrition nurses for input and training for her NG feeding. We reduced Mrs Kings prednisolone to 7.5mg 20/02/20 - she is currently on a reducing dose of 2.5mg every two weeks.

Discharge Bloods: ALP 2005, Bilirubin 277, ALT 216

Discharge weight 47.6kg

*NJ tube: A nasojejunal tube is also a narrow feeding tube placed through the nose, but it is positioned in the small bowel beyond stomach (the jejunum).

February - Second Re Admission for NJ tube RUH

After being admitted to the hospital for the second time, I was initially placed in the Haygarth Ward before being transferred to a private room. The reason for the move was unclear to me.

I remember being re admitted to hospital because I think I couldn't keep my promise of eating food at home. This part is fuzzy and it's probably where the EH must of started to really kick in.

Arrival of Covid

I remember while I was resting after lunch, unable to go to the park or shop in Bath, I heard a doctor informing another doctor that it was crucial to begin discharging patients because 'it was on it's way '- in reference to Covid - and soon after, I was discharged.

Letter Exchanges RUH to QE

Extract's from RUH letter:

I thought I would just write with an update with regard to Caroline King who is awaiting a transplant for ductopenic granulomatous sarcoid hepatitis. She was most recently seen by Dr Armstrong and remained on the Active Transplant List. Since that time, concerns have been raised about a decline in nutritional state and appetite and fatigue so we arranged for her to be admitted to the Gastroenterology Ward here for a period of NG feeding.

Caroline was admitted on 5th February and commenced on NG feeding with which she had some improvement in her appetite and her overall clinical state. The intention had been for her to have NG feeding for two weeks but towards the end of that time the team on the ward felt that the negative psychological impact of being in hospital was outweighing the ongoing benefit of feeding and so she was allowed home on 19/2/20.

On 15/2/20 Caroline was noted to have developed a chest infection and was treated for a hospital acquired pneumonia. Not long after discharge from hospital, it became apparent that Caroline was struggling again and she was readmitted to hospital yesterday and will remain in hospital until an NJ tube has been placed and she has been established on feeding to continue in the community.

I understand that the Dietetic Team on our ward have been liaising with the Dietetic Team at Queen Elizabeth Hospital. I enclose with this letter a copy of the discharge summary form her initial stay in hospital.

The reason for being admitted was to teach me how to use the NJ tube when I returned home. This phase proved challenging as it became clear that even back home, I was still unable to manage, and neither were the boys by now.

We all decided and with the blessings of my sons who felt it was the best place for me, to go and stay at my Mothers home where I would be better off and she agreed to have me. Thankfully it wasn't very far. I think it was a huge relief for the boys too as they hated seeing me deteriorating before their eyes and vice versa. I need to keep strong for them in my own way but I also hated being away from them and home.

Once at Mothers, a community nurse was assigned to visit me and we had a delivery of large bottles of yellow liquid, a drip stand and other unknown items but it was enough to freak me out! I had to consume one of those large bottles at night time.

26th February 2020 Notes: 1. New drops! 2. Find out how long I'm staying here 3. Read machine drip sheet 4. Text/call Jackie K 5. Text Kayla and tell her horrible nurse is back on 6. Be positive 7. Nap!

/

March - The NJ tube at home

I despised the NJ tube. It functions similarly to a nasogastric tube, transporting food from the nose to the jejunum, a section of the small intestine. It was used to supplement my reduced appetite.

By this time everyone was trying their hardest to make me eat. The large quantity of protein mixture for the NJ tube, overwhelmed me with fear of drowning in it. This is the impact of HE on the mind. The initial plan was to connect the appropriate amount of protein at night, based on the feeding duration, so that by the next morning, I would have received the necessary nutrients.

I recall my concern about needing to use the loo during the night due to the high water intake from all the medication. I couldn't figure out a logical way to manage this, as I would have to had dragged the whole equipment with me which discouraged me from following the night time feed - in reality, HE was clouding my thinking process. On reflection, a normal person would have just unattached it and reattached afterwards.

I recall one of the last community nurse's visit when she noticed I wasn't using the tube feed, and it was obvious she was becoming impatient. I remember her looking at me and telling me that if I didn't start using the tube soon, the outcome would be dire. At that point, it seemed like she was losing hope, along with everyone else.

By now, I had reached a point where I was utterly worn down of the constant feeding frenzy. It seemed like everyone was criticising me, which they were, and all I wanted was for them to go away and leave me in peace. The only thing I could recall people shouting at me was "EAT, EAT, and EAT., you need to EAT!"

Nobody realised that I WAS aware I needed to eat and connect the feeding tube, but fear was holding me back. They all assumed I was being difficult and irrational. I was trapped in the HE world. If only someone had taken the time to simply ask why I wouldn't/couldn't use it, then I could have tried to explain, especially when it all seemed so straightforward to them.

One day Mother went out for a walk. It was so peaceful and the sun was streaming in from the windows. It was just me and the NJ tube and with no pressure, I carefully prepared and connected a bottle of nutrient, then successfully started the feeding process by following the instructions. It did take a while and I was slightly panicky but once connected, I just settled on the sofa and let the feed flow. Mother came back and I just said to her, "Don't say a word" and she left me in peace. Done. It wasn't the full amount but it was a step forward and I overcame my fear. I then decided that a day time feed schedule rather than the dreaded night time routine would be the answer.

In the end, it got clogged, and I had to contact my GP, who made a home visit to extract it. Despite my fear, I had to summon all my energy to use it for survival. While it did provide a slight boost in strength, I was secretly happy to be rid of it. And I promised I would eat normal food again.

My food intake consisted mainly of weetabix or porridge which was better than nothing. I did feel I was making progress. It's not that I didn't want to eat. You know you have to eat to stay alive but my brain was so clouded, making it difficult to make rational decisions. I recall looking at a small plum tomato convinced if I were to eat it, it would explode inside me because it looked huge and I would die. A boiled egg was a definite no. However, I knew I was deteriorating as the weeks went by. I was becoming weaker and my eyesight was worsening. But at least I was eating small amounts which I told all the consultants.

March - Letter Exchanges RUH to QE

Extract's from RUH letter:

I thought I would just write to update you that unfortunately Caroline's nasojejunal tube has blocked and is no longer usable in the community. It's been check by one of the community nutrition team and unfortunately isn't salvageable. As Carolines oral intake is currently good, our nutrition nurses had a discussion with the Dietetic Team in Birmingham and we agreed to remove the NJ tube and not bring her up to the hospital to replace it as it was felt the potential risks to her of attending hospital during the Coronavirus Outbreak outweighed the benefits.

One of your Dietetic Team was going to liaise with her GP to make sure that all nutritional supplements were restarted in the absence of the NJ tube. Caroline has recently been in contact and we have renewed her prescription for Rifaxmin.

I understand from your letter that Caroline had a procedure performed in Bristol to deal with her high intraocular pressure. We have not yet received any correspondence about this or with regard to the planned follow up from the team in Bristol. Caroline's most recent blood tests were taken on 5th March at which stage she had INR of 1.5, Alkaline Phosphatases 2014, ALT 218, Bilirubin 380 and Albumin of 34. Her renal function and electrolytes were normal with an eGFR of over 90. On that basis, I think it might be helpful, if it were possible, for Caroline to attend her GP surgery over the next week or so to have an up to date blood test in advance of your telephone consultation. I am conscious of trying to balance the need to monitor her blood test versus and avoiding as much as possible contacts outside her home.

I will be extremely grateful to her GP for offering this and would suggest that Caroline contacts the GP surgery via telephone to see how this might be arranged.

March - Liver Clinic QE and Lockdown

Liver Transplant Waiting List Clinic: Active (Blood O, Small body frame with kyphosis, for DCD or DBD, UKELD 61, Bilil >500

Extract's from QE letter:

I had a long chat to Caroline today as part of a virtual telephone call as a result of the Covid Pandemic. She was on her way back from having had an urgent treatment for intraocular pressures as a result of glaucoma. It sounds like the procedure went very well today. Hopefully if her pressures are still low, we can reactivate her onto the Transplant Waiting list. She is doing exceptionally well on her nutrition and is managing her enteral feeding and feels more positive as a result. We talked about the Transplant Programme ongoing as long as we can keep it doing so. We would certainly not give her a liver from a confirmed Covid-19 pneumonia patient and I have made her aware of that. Hopefully, we will be able to reactive her in seven days time and will touch base soon.

Two days had passed since the lockdown began, and I was receiving treatment at the Bristol Eye Hospital for a procedure called a Cyclodiode to reduce the pressure in my left eye, as I had recently been diagnosed with Glaucoma. As a result, I was temporarily removed from the transplant list. Although it was a frightening experience to be taken off the list, I knew that undergoing this operation was crucial to save my eyesight.

The hospital was unusually quiet, with very few people around. The thought of the operation terrified me, as anything related to the eyes is my worst nightmare. I distinctly recall one of my fears years ago whilst designing in London that if I were to lose my sight and could no longer design, or see my children and friends, life would lose its meaning for me.

Lockdown

In the meantime, I was now struggling with eating and receiving additional diagnoses of Osteoarthritis, spinal fractures, a curved spine, and back pain. The back pain was so intense, it was unbearable. I dreaded the weekends when the NHS and GPs literally shut down as they only seemed to operate a skeleton service due to lockdown.

I used to make sure I had enough painkillers to last the weekend. Why was it that during the week, all was fine, then pain and other issues happened over the weekend? I recall my ex Mother in Law was in terrible pain too - she had run out of painkillers and knowing exactly what she was going through, I gave her a box of my own paracetamol to last her until she was able to get her own. The thought of her experiencing the same pain as mine was upsetting. Illness can bring some people together again and with her, my ex sister in law and ex husband, they provided good support too, along with all my friends.

I was also struggling to watch the news. It seem like the world had gone mad. Bubbles, no gym, people only allowed out one hour a day etc, Piers Morgan screaming on TV every time I switched channels. I eventually stopped watching.

Going out for a walk was became impossible. It took more time to get ready than actually walk because after a few steps, I had to sit back in the wheel chair and return home. Thankfully I had many wonderful and supportive friends who were in constant communication morning to night with messages on all platforms, gossip and memes. You all saved my sanity!

I do recall feeling terrified about the possibility of receiving a liver infected with covid. After that date, I have no memory of any further appointments or communication from the QE until I received my first call on May 6th, 2020.

Next Read:

Part Six: The Call 2020

Click here for Part 6