2021: Liver Out Patient Unit

Happy New Year 2021!

Photo taken 23rd January 2021

February - Liver Clinic QE

Extracts from QE letter:

DIAGNOSES:

1. DBD liver transplant for ductopenic hepatic sarcoidosis on 19th May 2020.

· CMV Donor and Recipient negative

2. Longstanding sarcoidosis with overlap of uveitis.

3. Previously cushingoid as a result of long-term steroids, remains hypoadrenal after recent

testing, to continue on Prednisolone 3 mg twice a day.

4. Osteoporosis.

5. Severe glaucoma.

6. Cataracts.

CURRENT MEDICATIONS:

1. Adoport 5 mg twice a day.

2. Mycophenolate 1 g twice a day.

3. Lansoprazole.

4. Aspirin.

5. Amlodipine 5mg bd

6. Prednisolone 3 mg once a day.

7. Adcal-D3

8. Bisphosphonate monthly ?which one

I reviewed the above patient. She is feeling well at the moment and I note LFTs are perfectly

normal last time. She was recently changed to a monthly Bisphosphonate. She is a bit anxious

about taking this as it may make her feel sick, but I have advised her that there is an indication to

continue Bisphosphonates. She requires long-term steroids and despite having a new liver which normally results in improved bone density, I think bone protection is necessary. Dr Maltby may wish to arrange bone density approximately a year or so after her transplant.

She was complaining of some itch and I have checked her bloods (LFT's stable) including ferritin

(normal). In view of the elevated tacrolimus level I will ask patient to reduce the dose of

Adoport to 4mg BD and I would be grateful if her liver function could be checked in 2 weeks.

I would also recommend a statin. We normally advise pravastatin starting at 20mg per day.

She has a small incisional hernia at the scar in the right iliac fossa, which reduces easily and I do not think it requires surgical intervention. Ultrasound scan confirms this. Otherwise, follow up will be in will be in six weeks.

March - Liver Clinic QE

Extracts from QE letter:

I reviewed this lady in clinic. It was so nice to see her as I remember how unwell she was. She has made fantastic progress during the first year of her transplant and I have no current concerns. She is due cataract surgery in the near future at Bristol Royal Infirmary.

I am going to see her again in six weeks in our Specialist Post-Transplant Clinic, but then we can move her to one of our more General Clinics thereafter. She will be over a year post-transplant.

April - RUH Letter

Extracts from RUH letter:

Dear GP I had a telephone follow up appointment with Caroline today. She recently had a further follow up appointment in person with the Liver Transplant Team in Birmingham on 19.03.21 and saw James Ferguson who remarked how much better she looked having met her pre-transplant. Her blood tests at that time were all satisfactory with normal liver function tests. In terms of ongoing improvements to Caroline's quality of life, the main issue which still needs to be addressed is going ahead with Cataract surgery in Bristol which would greatly improve her confidence in being outside the house and hopefully put her back into a position where she is able to drive again.

With regard to her adrenal insufficiency she needs to remain on Prednisolone 3mg daily for the time being and we plan to repeat a further short synacthen test in December this year to see if her own natural capacity to produce steroids has improved and will allow us to taper her Prednisolone dosage further. With regard to her osteoporosis, Caroline last had a DEXA scan performed in August 2019. I understand from her that she has not been taking her Ibandronic Acid since that time because it caused significant side-effects. The recommendation is that she has a further DEXA scan in 3 years which would fall in August 2022. I will be in touch with Caroline again in 4 months time.

April - Liver Clinic QE

Extracts from QE letter:

It was delightful to see Caroline today and the transformation in her since her transplant is

remarkable. Having had a bilirubin in excess of 500 as a result of very advanced hepatic sarcoid with pronounced ductopenia, she is now fully functional, has gained weight and is walking with just one stick and this is mainly as a result of her limitation due to her right cataract.

She is desperately waiting the cataract operation locally in Bristol and after which hopefully she will be fully functional. She is really proud of herself having got the train to Bath on her own and gone to the shops. All in all, she has completely normal renal and liver function at present. She was a negative to negative CMV.

She was asking about her medications, as on occasion she drops a tablet of Adoport on the floor, but this has only happened on two occasions since we last saw her. She is intolerant to the bisphosphonate and I would be very grateful if the GP could link her back in with her local Endocrine Team, arrange an up-to-date DEXA at the end of next year and consider alternatives to bisphosphonates moving forward.

As she is doing so well, I am going to ask her to come back in three months' time and re-book a her back in RD99 clinic, which was a home clinic moving forward. She wanted to pass on her huge praise and thanks to Mr Perera and Ms Hartog for giving her this opportunity.

I remember this clinic because of the journey. My friend Audra (the one whom I had to comfort back in Part 2) offered to drive me to the QE. On the way home, we encountered roadworks on the M5. Since we were near the M4 junction, we decided to exit at the next junction to avoid the long queue and take the scenic route. Happily cruising along and chatting away, we passed a Ferrari/Lamborghini in the slow lane. We both looked at each other. "Louise," she said, looking at me, (my middle name is Louise). "Thelma" I replied back.

These names date back to my last holiday abroad with Audra, a girls' weekend in Majorca after my eye diagnosis in October 2018, when, after a few wines, we set up an Instagram account named Thelma and Louise. As you do.

With nothing left to say she put her foot down, and off we sped, laughing hysterically and leaving him behind. We were laughing so much when suddenly this roaring noise zoomed passed us at lightening speed. *******! we both shouted.

Unfortunately, the scenic route turned out to be a disaster, it was full of road works and countless cones. Thelma reset the sat nav and we followed it to only to find ourselves back on the motorway just one junction away from where we had exited, right back into the traffic jam!

19th May 2021- One Year Anniversary

This was clearly a significant milestone, marking my first year. It brought many emotions and memories, highlighting the preciousness of life and how quickly a year passed. I chose to celebrate with just my sons and a small group of family, the ones who helped me . That was sufficient for me, and I had to be mindful of what I ate and the amount of time spent sitting in a restaurant on regular tables and chairs due to my back issues. And of course, I thought about my donor family and what they must be going through at the same time.

June - Right Eye Cataract BEH

Extracts from BEH letter:

Indication for surgery: Right Cataract extraction for visual improvement

Operation: Right phaceomulsification +IOL (second eye) 29th June 2021

Finally, I had my cataract surgery for my right eye. (Thankfully, we only have two eyes! I couldn't handle more of these operations.) This time, I knew how to manage my breathing, and everything went smoothly.

Writing to my Donor Family

During the first year, I spent many hours mentally writing my thank you letter. I jotted notes down for when the time came but of course, I din't use them. I just wrote what I felt naturally when I finally did it. I wanted to wait until the first anniversary was over for the family. I bought some beautiful writng paper and envelope and just wrote. I had become much more clearer in my thinking, especially coming off the oromorph. I handed my letter in on my visit to the clinic hoping I may receive a reply. As one of the nurses mentioned at a recent QEHB Liver Support Group 2024, it's quite rare to receive a reply. I totally understood. I just hope what I wrote gave them some comfort.

July - Liver Clinic QE

Extracts from QE letter:

I reviewed Caroline in clinic today. I am pleased to say she remains very well. Her cataract surgery went well and her vision is much better. I am pleased to also report that she had no episodes of rebound uveitis after the surgery. I note she is due to have a DEXA scan next week and she tells me that with an occasional antiemetic, she is tolerating her Bisphosphonate a lot better now. I have checked her bloods including tacrolimus levels. She has a follow up in three months.

August - Celebration

The lockdown had ended, and it was time for everyone, including myself, to return to some form of normalcy. I was incredibly fortunate to have family and numerous friends who lived locally, in supportive roles from driving me to all three hospitals, batch cooking meals for my freezer, offering mental support. I was am also very lucky to have other friends and family scattered around the UK and abroad, messaging via various social media platforms.

So, along with my two son, we decided to select a local venue to celebrate life and freedom from lockdown. Organising the event was challenging, but I managed it slowly, I had to know within myself that I could do this sort of thing again. With the restaurant's wonderful assistance, everything went smoothly once I explained the reason for the gathering.

This was the moment reality set in for me, and I understood how much I had changed and what my body had endured. It dawned on me how small I was compared to everyone else once we were all together. Before my transplant, I would have worked the room mingling with everyone, ensuring they were enjoying themselves etc. But this time, I had to sit on several cushions because I was so small and I remained seated. I couldn't move so simply observed everyone interacting. I actually remember feeling an incredible wave of sadness overcoming me for a brief moment for the loss of my former physically active life.

However, as the night continued, I summoned all my energy, told myself how lucky I was to be there and thoroughly enjoyed the evening even when I made a small speech, I mixed up everyones help with their names. With hind sight, it was far too soon for me to have put myself through the event physically and mentally - it took days to recover, but it happened and I hoped everyone remembers it fondly.

October - RUH Letter

Extracts from RUH letter:

I had a telephone follow up consultation with Caroline today. Currently her main limitations to problems from the Osteoporosis in her spine and I note that she was seen by Dr Ahmed at the beginning of September. He is keen to have some blood tests to exclude secondary causes of Osteoporosis beyond the need for steroids that she had for treatment of her Sarcoidosis. He suggested that Caroline try and get these taken when she attends the Liver Unit in Birmingham later this month to run alongside her routine blood tests here.

Caroline tells me that she has now had cataract surgery to both eyes and that her Uveitis has been fairly quiet. Caroline is due to have a further Short Synacthen test performed in December this year to see if her adrenal function has recovered allowing us to taper off and stop her Prednisolone completely.

CC to Dr Alex

"Dear Alex- this lady underwent a liver transplant for Hepatic Sarcoidosis in May 2020. Prior to this she had a protracted course of Prednisolone for her underlying cholestatic liver disease. She unfortunately has Osteoporosis as a complication of this. Her Prednisolone was discontinued post-transplant by the team in Birmingham resulting in her developing symptoms of hypo-adrenalism and Prednisolone medication was reinstated.

Caroline underwent a Short Synacthen test in early December 2020 which showed that she had an inadequate steroid response. Sh has been maintained on Prednisolone 3mg a day since that time and it was recommended that she had a further Short Synacthen test performed in December this year to see if her adrenal function had recovered. I would be very grateful if you would be kind enough to arrange this".

October - Liver Clinic QE

Extracts from QE letter:

It was a pleasure to see Caroline back in clinic. She had been doing really well, exercising

everyday, eating and drinking well. She said she has lost three pounds. She had her third dose of

the coronavirus vaccine last week and felt a bit fluey since. She has had a non-productive cough,

but no production of sputum. COVID tests have been negative.

She did mention a couple of things. The first is that she is being considered for weaning of

steroids locally. I believe a short synacthen test is going to be arranged in Bath Hospital and then

the Endocrinology Team should be consulted regarding a taper discussion down. Last time her

steroids were stopped in August completely, she felt very unwell thereafter. I do thus think she has got a degree of hypoadrenalism that we need to watch for before we stop any steroids.

The other thing she mentioned was because she has been coughing a bit more in the last week

she feels there is a small hernia in the right side of her abdomen approximately 5 cm under her

laparotomy scar. The seemed more of a femoral hernia to me today and was certainly reducible

and non-tender when she was coughing. If her symptoms continue, then it may well be that her

local Gastroenterologist could consider an ultrasound of this area plus/minus referral to a Surgical Team if bothersome.

Otherwise, I will repatriate her back to Dr Trivedi's Monday Afternoon Clinic to see her in four

months' time. Globally I am absolutely pleased with her excellent progress.

**We shall nudge up her tacrolimus dose - I shall ask if she can liaise with her GP or

rheumatologist for some up to date bloods in 4 weeks (U+Es and LFTs) please in view of

dose change**

September - Pride of Britain

I came across an event on a Facebook Liver Support Group inviting liver recipients for a secret filming in London, where Rosemary Cox would receive the Pride of Britain's Lifetime Achievement Award. She had successfully campaigned to create the Donor Register in the UK after her son Peter's death, enabling people to register as organ donors. I quickly signed up, and with a friend, we went to the location at a private square near The British Museum. We had to pretend we were just sitting in the pleasant square when she and her daughter arrived. Pausing by some bushes to examine them and suprise, suprise Alan Titchmarsh popped up from a bush and performed his magic.

Meeting other recipients was a amazing and comforting experience, not just those with liver transplants, but also heart, lung, and kidney recipients. While I was waiting for my interview, the interviewer asked one of the men about his transplant and he jokingly replied that he felt like an impostor because he had only undergone two hip replacements and was his brothers carer.

We all burst into laughter. I had a lovely chat with Rosemary and her daughter and thanked her for setting up the Donor Register because, without her, I would not have been sitting there talking to her. Later, we went off and enjoyed the sites of London.

November - Party Time!

Another day in London, this time at a hotel celebrating a friend's wedding anniversary. Despite gaining weight and strength, the sequin shirt I bought was very heavy for my frame, but I was determined to wear it, and I did as I only had to come down in the lift and sit down all evening.

These are the small things I wouldn't have considered before my transplant. Learning from the celebration the previous year, I took this party very slowly, yet I managed to stay up until 1:00 am and I was so exhausted the next day that, at the request of the friend whose party it was, the hotel let me stay until late afternoon to recover my strength before I had to leave and meet another friend that evening. And I managed to do it.

December - Liver Clinic QE

Extracts from QE letter:

Dear Mrs King

Thank you very much for having blood tests done following our clinic discussion. These blood

tests were, I believe, performed on 18th November and I would just like to thank your GP for

facilitating these.

Looking at the bloods pertaining to your post-transplant status, I am happy with your kidney

function and profile as it stands and your bone profile. Your liver tests were excellent and normal

which is reassuring.

You will be followed up in Dr Trivedi's clinic in the New Year and I wish you a pleasant festive

period.

Another happy ending to another year. Hello 2022!

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