Part Eight: Liver Surgery Clinic - 2020
- Caroline King
- Nov 1, 2024
- 14 min read
Updated: Jan 28
June 2020 - Surgical Clinic QE
Extracts from QE letter:
This was a first face-to-face clinic appointment for Caroline King after her recent liver transplantation for a suspicion of hepatic sarcoidosis. She is now 13 days postoperative after receiving a DBD graft, CMV negative graft to CMV negative recipient. Postoperatively, she had a minor herniation of omentum through the drain stab site and this was addressed with reduction and additional transcutaneous suture.
I was pleased to see that Caroline is doing well. She is apyrexial and has a good appetite. She has some lower limb edema with swelling of the dorsal side of both feet, which is acceptable for now. On examination, her wound heals nicely, the wound is sutured with intracutaneous soluble sutures. The drain stab wound is healing nicely and looks good with a few transcutaneous stitches in situ. Lab results show good renal function and liver function. A slightly high haemoglobin level and white blood cell count was noted. We will chase her Tacrolimus level.
Today, we discussed the results of pathology of the explant liver with Caroline. Pathology report describes a chronic biliary disease with a marked paucity of small bile ducts. There is mild to moderate fibrosis. There is absence of granulomas, which does not support the earlier diagnosis of hepatic sarcoidosis. Other possibilities to consider include AMA-negative PBC or small duct PSC. She is currently on Adoport 4 mg twice daily, MMF 1 g twice daily, Prednisolone 20 mg once daily, Aspirin, Co-trimoxazole, Nystatin, Senna, Laxido, Meritene and Renapro shakes, different types of eye drops, Alendronic Acid, Lansoprazole, Aciclovir 400 mg once a day, Adcal. For pain relief, she is on Morphine sustained-release (Zomorph 90 mg BD) and Oramorph 5 to 10 mg as required (at the moment up to twice a day 5 mg).
We discussed with Caroline the options to reduce her opioid intake. Therefore, we advised to add Paracetamol 500 mg three times daily. Next, we would like to go down on her Morphine sustained-response (Zomorph) dose and titrate with Oramorph. For now, we have suggested to take Morphine sustained-release 60 mg in the morning and 90 mg at night. We will review her pain medication on her next clinic visit, which is due in one week.
We restarted Ursodeoxycholic Acid with regard to a possible diagnosis of PBC.
These photos were taken during my first two visits back to the QE five and eight days after discharge. I was always nervous setting off to the hospital and I remember fidgeting none stop in the car trying to distract myself from the panic I used to feel. I would check and recheck my bag to see if I had all my necessary items such as water, mints, pad and pen. I have no idea why this happened. Fear had set in again. The motorways were empty and it felt like we were the only drivers using them.
However, once I was on the motorway, I would calm down and when we arrived at the QE, my worries disappeared and I felt safe and secure back in clinic with my surgeon. Initially, these were weekly visits, eventually spaced out to bi-weekly, then monthly, every 3 months, and finally every 6 months, which is the current cycle I follow and I thoroughly look forward to driving myself back to Birmingham.
Photo left: First visit to clinic. Photo right: Second visit to clinic one week later.
June - Surgical Clinic QE
Extracts from QE letter:
I reviewed Caroline in clinic today who is post-transplant and is recovering well from the same. She is now 20 days postoperative after receiving a DBD graft, CMV negative graft to CMV negative
recipient. Postoperatively, she had a minor herniation of omentum through the drain stab site and this was addressed with reduction and additional transcutaneous suture.
She had several questions, but essentially she is recovering well and her bloods from today are
awaited. She has required a prescription for all her medications including Morphine for her
significant osteoporosis that she has been taking. She has been issued the same.
Removal of Staples
About two weeks after the transplant, it was time to remove the staples, but I couldn't see any. This puzzled me because the leaflet given to me at discharge instructed me to book an appointment with my GP to have them removed. So I went, filled with dread because if I couldn't see them, they must be inside me. Surely, I should be in an operating theatre under a general to have them removed without pain and not fully awake? Lying on the bed, the nurse examined my abdomen, checked her notes, and asked if I had a liver transplant - as if the entire 2 years had been a dream!
Upon closer examination, she told me that I had no staples and that it was the finest and almost invisible scar she had ever seen, and she wasn't even sure where it ended. Thank goodness for that. She then called in another colleague, and they both took a look. I was so relieved. Thank you, Mrs. Hartog, my wonderful surgeon.
June - Bristol Eye Hospital
Extracts from BEH letter:
Given the destiny of the cataract in the left eye, when we restart elective surgery after the COVID restrictions are lifted, we will be keen to help her to see better in the left eye and have listed her for left phacoemulsification and itraocular lens to be reviewed and done by the Glaucoma Team.
Great news. I was finally going to have my cataract done on the left eye - new liver and now a new eye. Happy days!
Another trip to the QE. This was my third trip.
June - Surgeons Clinic QE
Extracts from QE letter:
PROBLEMS:
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
Today, I had the pleasure of seeing Mrs Caroline King in clinic. As you know, she is a 57-year-old
lady who is 27 days post transplant for hepatic sarcoidosis for which she received a DBD liver.
Postoperatively, she had a minor herniation of omentum through the drain stab site and this was
addressed with reduction and additional transcutaneous suture.
I was pleased to see that Mrs King is doing well. She has been eating and drinking well. Her
oedema has reduced completely. She does complain of back pain but this has been an ongoing
issue. She is a known case of osteoporosis and under treatment for the same.
On examination, her abdomen is soft and non-tender. The scar has completely healed. There is
no evidence of any incisional hernias.
With regards to medications, she is on;
1. Adoport 4 mg BD.
2. Tablet MMF 1 g BD.
3. Prednisolone 15 mg OD. This has been reduced last week.
4. Tablet Aspirin 75 mg OD.
5. Co-trimoxazole 480 mg every alternate day.
6. Tablet Morphine Sustained Release 60 mg in the morning and 30 mg at night.
7. Lansoprazole 30 mg OD.
8. Tablet Adcal-D3.
9. Meritene and Renapro shakes.
Mrs King has had her bloods done today. The results of which are not back. I reassured Mrs King
that we would review her bloods when they come and make necessary changes if required.
I have requested Mrs King to reduce the amount of pain medications as per her needs. We would
be happy to review her over the telephone in one week. Meanwhile, if you have any queries or
concerns, please do not hesitate to get in touch with us.
June - Out and about in the park
Photos 22nd June 2020 35 days post transplant
Looking back at these photos, particularly the third one, I realised how much weight I had lost before the transplant, but that third picture shocked me. I stumbled upon it while starting to write this blog. I also recall how heavy my head felt; at times, I would support it with both hands when feeling exhausted.
These pictures were one of my first trips to the local park, and the sun on my body felt so incredible. Instead of always feeling cold, my bones were warm from soaking the rays and I could feel the difference. I relied on a wheelchair as a walking aid for my first steps outdoors, and when I grew tired, I would sit and Mother would push me. As I grew stronger, I started to meet friends at the park and some kind of normality started to form.
June - Surgeons Clinic
Extracts from QE letter:
This was a Phone Clinic with regards to the coronavirus pandemic. Miss King is now one month
after liver transplantation for hepatic sarcoidosis or ?PBC. This was a CMV negative graft towards CMV negative recipient.
I was happy to hear that Miss King is doing very well. Her back pain is improving and she is trying to wean from her Morphine. We made a clear plan for the near future to wean her completely off the Morphine. She is doing well with a good appetite. Bloods done locally on 18th June show good liver function tests with a downward trend of bilirubin at 38, Tacrolimus level 5.6.
She is currently on Adoport 4.5 mg twice a day which we increased to 5 mg twice a day,
Mycophenolate 1 g twice a day, Prednisolone 15 mg and we asked her to reduce this to 10 mg
starting from 29th June, she is further on Aspirin, Co-trimoxazole, Lansoprazole, Adcal. We
started her on Ursodeoxycholic Acid 250 mg three times a day.
I would like to try and rationalise her Morphine use according to predefined weaning plan. I
discussed with Miss King to reduce Morphine sustained release to 30 mg BD today and half the
dose every 14 days.
From 29th June: Morphine sustained release 20 mg BD,
From 13th July: Morphine sustained release 10 mg BD,
From 27th July: Morphine sustained release 5 mg BD,
From 10th August: wean off Morphine sustained release.
During these weeks, she could rely on back-up/escape mediation for intercurrent pain peaks with Zomorph 5 mg as required up to a maximum of four times a day (Zomorph 5mg PRN QDS) and a stable dose of Paracetamol 500 mg three times a day. Miss King will ask her General Practitioner to prescribe these medications according to this plan and if any questions arise, I will be happy to respond to that. We will arrange a phone clinic in two weeks with local bloods arranged.
I recall this phone call vividly, as it was with my surgeon, Mrs. Hartog. I mentioned the staples visit to my local surgery and explained how the nurses were impressed with her skills, and so was I. She attempted to explain that I had good skin. However, I insisted it was due to her exceptional skills. Our lighthearted banter continued until I left surgical care.
23/6/2020 Notes:
Sorted out the drugs yesterday with Goddess No 1. (My Bath consultant was Goddess No 1 - until my surgeon, Mrs Hartog took over so she moved down a notch and became Goddess No 2. Sorry Dr. Maltby! I'm down back on track with the morphine. I will never take it on again (sic) to try and wean myself off a totally high dependant and controlled drug again. had no idea how powerful and addictive morphine an be. Anyway, happy days which means I can concentrate on my back pain and exercise and walking to fix No 2 (?)
Today is the first time I haven't felt 'unsure', 'uncertain', 'not knowing' about my future regarding my pain and back. I'm content with my liver and all (team, meds, clinic) I just can't work out why I'm so skinny and lost all that weight, but during my phone call with Mrs Hartog, she told me that my original weight gain, especially my fat legs and toes were water retention and would return to normal. I'm back to the start of rebuilding myself.
Photos 27th June 40 days post transplant
During my first clinic visit I met the legendary nurse Carmen who told me that it would be a long process, possibly taking two to three months, to gradually gain weight.
At my heaviest, I was about 10 stone/63 kilos (just after having kids), and my target was always 9 stone/57 kilos. Before the operation, I weighed 5 stone 12lbs/37 kilos. TBC
Notes:
Trying to keep busing and finding things to do. I have to find something other wise I will go crazy. But it's hard as I'm still weak but I can feel I'm getting stronger every day. It's just taking ages.
SIL came round to help work out my new drug reduction dates every two weeks To everyone, it's simple but to me, I still get confused and as long it's written on paper, I will follow it to the letter!
Morphine - reduce the tablets but up the oramorph as and when needed - lower the pill one and increase the liquid - the liquid isn't as strong as the pill because they want to decrease the amount of morphine tablets I take - I think...
After being warned by a surgeon at one of my clinics that some people struggle to stop using morphine due to addiction, I was determined to avoid becoming dependent on it.
Rereading the letter below, everything now makes perfect sense, although it didn’t at the time when I was tapering down off the morphine. I used to start with the recommended dosage, but after three to four days, I would wake up early in the morning drenched in sweat and feeling awful, as if I had the flu. Then, in the following days, I would feel completely fine and carry on as usual. This pattern repeated with each dosage reduction on those specific days. I used to find it odd that I kept experiencing these night sweats and flu-like symptoms, putting it down to having too many blankets on the bed because I always felt cold. Looking back now, I feel a bit silly for not realising that it wasn’t the flu or being over hot, but rather withdrawal symptoms!
Taking it day by day.
June - Surgeons Clinic QE
Extracts from QE letter:
Pain Management
I telephonically assessed this lady who has been referred to us by Mr Hermien Hartog, Consultant Liver Transplant Surgeon, with regards to her back pain which she had prior to her surgery.
PROBLEM LIST:
1. Liver transplant under Mr Perera and Mr Hartog on the 19th May 2020 secondary to hepatic
sarcoidosis ? PBC.
2. DBD graft.
3. Osteoporosis of the spine.
4. Previous multiple spine fractures as the patient tells.
5. No MRI scans on our system currently in this regard.
CURRENT MEDICATIONS INCLUDE:
1. Paracetamol 500 mg three times a day.
2. Oramorph 2.5 mL PRN.
3. Zomorph or MST.
MANAGEMENT PLAN OF DE-ESCALATION IN PLACE: Currently taking 30 mg MST twice daily.
Plan further is to decrease that to 20 mg on the 29th June, further to 10 mg twice daily on the 13th July, further to 5 mg twice daily on the 27th July and there hence to stop wean off on the 10th August.
OTHER MEDICATIONS INCLUDE:
1. Tacrolimus (Adoport).
2. Adcal-D3.
3. Aciclovir.
4. Alendronic Acid (due to be replaced for a new drug).
5. Aspirin.
6. Co-trimoxazole.
7. Lansoprazole.
8. Latanoprost.
9. Laxido.
10. Prednisolone 20 mg twice daily.
She tells me she had had sudden onset of back pain in January/February 2020 perhaps due to
multiple spinal vertebral fractures which were diagnosed elsewhere. Later on she has had this
procedure in May 2020 and is recovering very well with this. She seems a very positive lady and is coping very well with her big surgery. She is currently staying at home self-isolating along with her mum and managing well.
THE DISCUSSION OF PAIN MANAGEMENT: I agree with Mr Hartog's weaning plan, usually as
per the BPS and Faculty of Pain Medicine guidance, a 10% drop in Morphine intake per week is
recommended and perhaps no more than 120 mg maximum dose of Morphine in a day is needed.
I discussed with her and she seems to be happy with that plan and has now been able to obtain
certain dosage of Morphine Sulphate from her GP. As a backup plan, once the Morphine is
completely off on the 10th August, if the pain continues to be there I advised her to take BuTrans
patch 2.5 mg patch as a trial if need be which can further be upped to 5 mcg/hr patch as per her
compliance. She is currently walking with a stick and often using a wheelchair but is gaining
weight also. I have advised her if and when she uses the BuTrans patch on the lowest dose, she
must be accompanied at home or within the Community by someone at home so as to allay any
side effects that might happen owing to this which can be excessive sleepiness or overdosage
which is difficult to predict.
She was very pleased with this plan and we would be more than happy to give telephonic advice
by the nurses if need be in the future. I am not at the moment making any further plans to meet
her as she is currently shielding and is at a high risk.
Thank you very much.
Photo left, 4th July - Middle photo17th July - Right photo 31st July 2020
July - Surgeons Clinic
Extracts from QE letter:
BACKGROUND DIAGNOSES:
1. Liver transplant on 19th May 2020 for hepatic sarcoidosis.
2. Donor CMV and recipient CMV negative.
CURRENT MEDICATIONS: Including.
1. Adoport 5 mg BD.
2. Mycophenolate 1 g BD.
3. Prednisolone reduced to 10 mg on 29th June.
4. Aspirin.
5. Co-trimoxazole.
6. Lansoprazole.
7. Adcal.
8. Ursodeoxycholic Acid started on 22nd June at 250 mg three times a day.
9. Reduced dose of Morphine Sustained Release as advised by - (01:12) with breakthrough
pain with Zomorph 5 mg PRN along with Paracetamol 500 mg - (01:20) a day.
Histopathology confirming chronic biliary disease with ductopenia clinically sarcoidosis.
Bloods last checked on 3rd July showing creatinine of 50, sodium of 144, potassium of 4.1.
Bilirubin 19, ALP 174 coming down, ALT 8, haemoglobin 137, white cell count 9.1, platelet 325
INR 1.0, tacrolimus 5.6 last checked on 18th June 2020 awaiting current Tacrolimus levels.
It was a pleasure to speak to Ms King on the phone today as a part of our Telephonic Outreach
due to the COVID situation. I am happy to report that she is well. She noticed some spots on the
skin of her arms after starting Ursodeoxycholic Acid. We discussed this and I have advised her to
stop taking it for the next two weeks.
I have documented her blood tests which are all fine. She is on Tacrolimus of 5 mg BD. We will
review the tacrolimus levels and recommend new dosage. I have advised her to reduce the
Prednisolone further when we see her during her next Telephone Clinic in two weeks' time.
I have given her the prescription for Mycophenolate which will be dispatched by the Pharmacy
Team. She has all other medications. If there are any queries or concerns, please do not hesitate
to get back in touch with us.
Weight gaining
I used to become very upset at not gaining weight quickly. I came to realised that it is much harder to put weight on than loose it. Normally, weight gain or loss is measured in pounds or kilos, I was counting the ounce's. ie 27/7/20 6.8lbs and 4oz. 7 days later: 6.8lbs and 10oz. It took me 2 years to put on 2 stone/12.5kilos.
July - Surgeons Clinic
Extracts from QE letter:
BACKGROUND DIAGNOSES:
1. Liver transplant on 19th May 2020 for hepatic sarcoidosis.
2. Donor CMV and recipient CMV negative.
I had the pleasure to have a telephonic consultation with this lady today. She is now 62 days since her liver transplant for sarcoidosis and she is doing very well. She is drinking and eating well. She stated she has a lot of appetite. She asked whether she should resume the Vitamin D she was taking previous to transplant and I will prescribe that for her.
She is also taking Adoport 5 mg BD, Mycophenolate 1 g BD, Prednisone 10 mg BD and Cotrimoxazole, and she is following the schedule she had already decided to wean the Morphine Sustained Release and she is having her pain control. I will prescribe for her Adoport and Mycophenolate and we will be having a telephonic consultation in two weeks' time. By that time, we will be able to reduce her Prednisolone to 5 mg.
Morphine - I remember mentioning at clinic that the midday dose of morphine was making me very lethargic when I was trying to go out for my midday walk. The consultant asked me why I was still using it. I explained to him that it was part of my weaning off process. His reply was if I felt I didn't need it and it wasn't beneficial to my pain then stop so I did and felt much better. And if I did need it, night time was the best time to take it. I was so relieved. Less morphine the better.
Examples of my medication
This was and example of my morning medication and my favourite pill was the red one - Retinol! The first two are anti-rejection tablets, then Retinol, I'm unsure about the next one, followed by Prednisolone, Accrete D3, I'm uncertain about the white one, and I believe the last one is Morphine. The anti-rejection pills are to be taken again in the evening along with Morphine along with all the eye drops.
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