2020: The Call

Caroline King
Dec 1, 2024
7 min read

Updated: Apr 9

5th May - The First Call

The first 'Call' came on the 5th May and the second 'Call' on the 18th May at 1.57 am. Jackie was in Berkshire when I called her to tell her so she had to drive back to Wiltshire, collect me, then we set off to Birmingham. I don't recall much of the journey.

We arrived at the hospital and she dropped me off, turned around and headed back to Berkshire and then back home to Wiltshire. All in one day. What a girl! I remember sending photos of the hospital to the boys and friends, letting them know I had been called in. I was taken up to Ward 726 and into a room where I just had to wait.

One of the first priorities was to be taken down to have a scan and a covid test. It was a very strange atmosphere. Not only was it freezing cold but the hospital was eerily silent and empty. I didn't see a single person/patient whilst being wheeled down to the scan room and the QE is a large hospital. All the waiting chairs were empty, not a soul around. Each corridor was empty. Like a ghost town.

After the scan I was back in my room and just waited fully dressed. I still had no idea what was going on but I was absolutely starving. I kept asking for food to be told no as they were still going through the process and waiting for the covid results. It came back negative but there was a slight shadow on the lung. I remember a surgeon coming into my room very late in the evening and telling me that it was a 50 - 50 decision whether to go ahead.

Some short extracts from my texts

5th May 2020 07:33

10.30 - Call me urgent, they have a liver match...

12.35 - We are nearly at the hospital. If it does go well as in corbi... (sic

12.38 - Can't wait till is all over to come back home and get back to you both...

20.46 - Yes still waiting but all gowned up with surgical stockings and gown on. Don't forget....

Heart emoji, So is it definitely happening....

Still don't know, wish they would made their minds up!

20.47 - All gowned up with surgical stockings on. Still waiting. Don't forget I love you both...

Love you too Mum...

I'm starving! Haven't eaten since 12.00am!

23.02 - It's not happening now. The liver can't be split so there will be no transplant. Covid tests came back negative too. Will be home tomorrow. Will talk tomorrow...

Ok speak tomorrow....

Notes: 1st call Jackie drove me - arrived, ideal liver match. Had Covid test - took 5 hours but came back negative. I had a min temperature spike for 1 hour from the normal 36.7 and anything over 37 is considered 'high'.

They weren't sure as a team. Every hour that went pass, more tests were taken. The team of 15 people had to come to a magnanimous decision for the transplant to go ahead. By ten o clock, they still hadn't make a joint team work decision.

The decision came at eleven o clock where they all finally agreed not to go ahead due to the splitting it. Need to find out the reason why,

At last, a decision was made. They couldn't split the liver. A surgeon came to see me in my room and told me that the transplant was too risky as one surgeon was in favour and the other wasn't. 50/50 so I told him that if that was the case, I wasn't being ungrateful, but I didn't want the transplant to go ahead if there was uncertainty. It had to be 100% clear cut decision on a 100% agreement.

Finally at nearly mid-night I had some food. It was a cold meat salad. It was in a huge plastic container. I was so hungry that I actually ate half a cherry tomato, a tiny piece of a squarely cut ham and a piece of cucumber and then feeling completely full, I slept.

The next day Jackie returned to collect me and went home to wait for the second call. There's a saying that if the first call doesn't go ahead, treat it a trial run for the next one.

Photo 1: Leaving for the QE

Photo 2: Being wheeled up to 726 - 18.36 pm

Photo 3 Taken from my room whilst waiting to be collected to go home.

6th May - Discharge Notes from 1st Call - QE Birmingham

Caroline King

57F Admitted for liver transplantation

Background

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

4. Severe Glaucoma - operation 24th March 2020

Current Admission

Ms King attended for Liver Transplant on 5/5/20. CT Thorax was suggestive either of Covid infection or sarcoidosis. Neither could be entirely excluded. Covid swab was negative, but in view of the high rate of false negative results, it was felt that the transplant should be deferred until acute infection could be entirely excluded.

Mrs King was informed that she remains on the waiting list. She will be discharged to self isolate at home and will be re-admitted in due course. She may continue her usual medication regimen in the interim Information Given to Patient please seek medical attention if you become unwell.

After Hospital admission, you are at increased risk of blood clots (thrombosis). For further

information about the symptoms of Deep Vein Thrombosis (DVT) and Pulmonary Embolism (PE)

and what you can do to reduce your risk, please see the video and information leaflets on our

website (https://www.uhb.nhs.uk/dvt)

Recommendations for GP

Please inform AnticoagulantTeam@uhb.nhs.uk if this patient develops a deep vein thrombosis or

pulmonary embolism within 90 days of discharge.

5/5/2020 Bloods: ALT N/A, Bili 514, ALP 1671

6/5/2020 Bloods: ALT 136, Bili 505, ALP 1605

Notes: 16/5/2020

Apparently I'm clumsy - Mum shouted at me for knocking a plastic cup of water over. Dropping things, too heavy to hold anything now. Scared, scared. My head is now heavy and only not when lying down. When's it going to happen. Cant hold on any more. Can't seem to text anymore as can't see the letters = big text size, trapped in illness and blindness.

This is the moment I decided to write to my two sons in the books I had prepared for each of them. I remember feeling at total peace and ready to go. Although they weren't babies or toddlers but young men who would be fine I was sure. Lying on the bed I began writing. However, after a few lines I closed both books and I realised I wasn't ready to leave them as a strange inner strength appeared from no where and I felt happy again and told myself to not be silly, so I put them away and I'll tell them myself when I see them as I was still staying at Mothers house.

Extracts from QE Letter

I spoke to this 57-year-old during a telephone consultation due to the COVID-19 crisis.

She was recently admitted for a transplant, but this did not proceed as there were concerns on the CT scan that she may have been brewing COVID infection. Two swabs have been subsequently negative and she has not developed any symptoms of COVID infection, now that she is back at home.

For this reason, I think she can be reactivated on the list and be seen back here in six weeks' time. She has got quite significant liver dysfunction with a bilirubin of over 500 and an albumin of 25. Of note, the CT thorax review shows no definite radiological evidence of COVID with some lower and minimal left mid zone atelectasis. This was considered indeterminate.

18th May - The 2nd Call

The second 'Call' on the 18th May came at at 1.57 am. I remember being annoyed at being woken up at that time, Grumpily, I answered the call to hear a brummy accent telling me to "Wake up sleepy head, we've got a new liver for you". This was 13 days after the first call.

The sense of shock and disbelief doesn't quite capture the overwhelming emotions experienced by those who have been through the Call. Despite my mobility and dependence on crutches, I 'sprang out of bed' which was a miracle at the time.

I tried to wake Mother but she was fast asleep. I phoned my brother and Jackie who were my designated drivers for The Call. No answer. Called my sons. No answer. Of all the days on the second most important day of my life, everyone was fast asleep.

I got dressed and made my way up the stairs from the ground floor with my new found adrenalin. Made a cup of my last ever beloved earl grey tea. (The medication after transplant contains bergamot so one can't drink it ever again as it messes with one of the medications). The bag had already been re packed and ready to go. Tried to wake Mother again. Nope. Called the boys again. No answer. So I turned the TV on, watched the ballet and drank my tea totally calm thinking about the person who had died and what their family must be going through. And it was still lockdown. How were they coping, what was their situation?

Third attempt at Mother and brother. It was chaos! Mother flustered around. Brother finally answered the phone and I calmly told him "I've just had The Call again." 'Don't panic!!!" he shouted down the phone telling Jackie to get up. Tried the boys again, still sleeping so made my self my second cup of earl grey tea whilst I waited for my lift to Birmingham.

Finally, after all four of us succeeded in waking the boys, I spoke to them before we left.

When you receive The Call you are advised to remain calm and don't rush. Have a cup of tea or coffee and a small snack. You have about an hour to get yourself together then leave to arrive at the hospital within 3 hours from memory.

Jackie picked me up, and as we were leaving, Mother tried to hug me. I vividly recall screaming out in pain and telling her 'not to touch me' because I was so fragile and probably would have collapsed. We then headed to the QE in Birmingham. This time Jackie was allowed to take me up to Ward 726 where we checked in and then she had to leave immediately because of lockdown. I was then moved to one of the rooms where I settled down to wait for the following instructions.