Part Nine: Liver Out Patient Clinic - 2020
- Caroline King
- Oct 31, 2024
- 14 min read
Updated: Feb 14
August 2020 - Back to the Outpatient Clinic QE
Extracts from QE letter:
I reviewed Caroline in the Liver Transplant Outpatient Clinic 90 days after transplant for hepatic sarcoidosis. I am happy to say that she is doing extremely well and seems to have fully recovered from the surgery. Her blood tests from two weeks ago were normal and we are awaiting today's results and we will contact her if we need to change anything.
Regarding her medications, she is on Adoport 5 mg BD, Mycophenolate Mofetil 1 g BD,
Lansoprazole 30 OM, Aspirin 75 OM and she takes Amlodipine for blood pressure 5 mg BD. I have asked her to stop her Morphine and Paracetamol as she has no further pain and she is keen to start driving soon. Today, we stopped her Prednisolone and Co-trimoxazole.
I would be very grateful if you could continue the onward prescription of Lansoprazole and Aspirin and today I have prescribed more Adoport, Mycophenolate Mofetil and posted this to her. We have discharged her from surgical follow up, but she will continue with Hepatology follow ups.
I recall feeling both sad and somewhat worried having to leave the surgeon's clinic. It felt like losing my safety net. You are under the care of the very people who perform your life saving operation so one feels an attachment to them and because they have operated on you, we feel they know us personally - inside out!
I've read similar concerns by others on the Facebook Liver Groups. However, over time, it was wonderful to see some familiar consultant faces pre transplant, and it truly felt like coming home again.
Gaining strength, weight, and hair growth
Photo left 10th August to bottom rigth 17th August 2020 - three months post tx.
I returned home 2 months later and it was wonderful to be surrounded by my own belongings. I found an old pair of shorts and tried them on, but they were far too large! I couldn't resist taking a photo with both legs in one side to capture the moment. I regret not keeping them to measure myself four and a half years later, though it seemed unnecessary at the time as I thought I would never wear them again. My beloved watch, a Christmas gift from one of my sons remains too large to wear, even after adjustments. I mostly wore two dresses because I couldn't bear anything touching my waist - I still remember the discomfort of 'the belt' when I was in the CCU after my transplant.
August - Steroid Withdrawal, RUH Letter
Extracts from RUH letter:
I had a further telephone conversation with Caroline today. She tells me that she went up to see the Liver Surgery Team in Birmingham this Monday and they are very happy with her progress. Both her Prednisolone and her Co-trimoxaole have been discontinued. Her care in the transplant centre will now be handed over to the Hepatology rather than the Surgical Team and she is anticipating to see Dr James Ferguson.
I was really pleased to hear that Caroline is really feeling very well. Her sense of wellbeing and fitness is improving and she tells me that the other day she managed to walk many steps. Her pain from her spine is reduced and she is now only taking Oramorph up to 5mg bd and often forgets to take this because she doesn't really need it. Her most recent blood tests taken locally on the 29th July were all satisfactory and she was told when she saw the Birmingham Team that bloods there were all normal.
At her last blood tests here, her liver function tests had almost returned to normal with an alkaline phosphatase of 135 and a tacrolimus level of 7.6. Renal fuction was normal and INR was 1.1 Caroline has ben started post-transplant on Ursodeoxycholic Acid because of the concern abotu a possible alternative diagnosis of antibody negative PBC. This would seem less likely than Sarcoidosis given the co-existent diagnosis of recurrent Uveitis. She was concerned that she might have developed a rash in relation to the Ursodeoxycholic Acid so it was stopped a few weeks ago. Despite discontinuing this, her alkaline phosphatase has continue to fall and I have advised Caroline that I think she probably does not need to take the Ursodeoxycholic Acid unless Dr Ferguson advises her that is appropriate.
As Caroline was on considerable dose of steroid for quite a period of time prior to her transplant due to a combination of the Hepatic Sarcoidosis and the recurrent Uveitis, I think we just need to be vigilant for the possibility that she might be at risk of adrenal insufficiency having stopped her Prednisolone or that her Uveitis might return.
Caroline is already monitoring her blood pressure at home. This was previously high but has fallen such that her systolic blood pressure was 117. I have advised her that should she experience symptoms of faintness or dizziness on standing or if her blood pressure on her recording falls so that the systolic blood pressure is below 100 that she ought to seek some advice. Caroline says she is waiting to hear from the Ophtalmology Team in Bristol about going over for a procedure for Cataract. I understand from Caroline that her current Ophthalmology car is under Professor Dick. I plan to check in with Caroline again in 2 months time.
I clearly remember these occasions. We had a good phone conversation, and my consultant gave me some cautionary advice about tapering down of Prednisolone. She mentioned that I might experience some level of adrenal insufficiency, severe fatigue, body aches, and nausea.
She was right. The next day, I went downstairs, sat on the sofa, and couldn't get up. I was utterly exhausted and unable to move. I felt so ill that I thought I was dying again. I managed to call Dr. Maltby and told her of my symptoms, and I immediately increased the Prednisolone. A day later, I felt much better. That was a lesson learned!
August - RUH Letter
Extracts from RUH letter:
I spoke to Caroline on the telephone today after she left me a message saying that she was not feeling so well. Over the last 3-4 days she has been experiencing some symptoms of nausea without vomiting, feeling markedly fatigue which she had not been previously and also some spells of feeling shivery or shakey, some cough, a slight runny nose... It is possible that the nausea and fatigue might be related to her Prednisolone 5mg daily having been stopped on the 17.08.20 and I have recommended that she recommence Prednisolone 5mg from today and we will plan a very slow withdrawal and short synacthen test when she gets down to 3mg daily to test her own natural capacity to produce steroids.
I would be very grateful if you would be kind enough to prescribe her some Prednisolone 1mg tablets and I would recommend that she reduces her Prednisolone by 1mg on 1 day a week, i.e to 4mg on one day for the first week, 1mg on the 2 days a week for the second week, 3 days a week for the third week etc until she is on 4mg every day and then repeat the process by reducing to 3mg on 1 day of the week and then 3mg on 2 days of the week, then 3mg o 3 days a week until she reaches 3mg every day.
Caroline has been checking her blood pressure and her systolic blood pressure has remained at around 117. She has also checked that her temperature is normal and she has a well preserved sense of taste and smell. It is conceivable that some of the other symptoms could relate to having stopped her opiates. Given the new appearance of symptoms I think it would be useful for us just to have some further blood tests and I have put on ICE for a check of full blood count, liver function test, creatinine and electrolytes and CPR and have asked Caroline to book in for a blood test. I will look out for the results. JM
Growing in Confidence
After returning home, I began walking most days at my local park. This was a very gradual process. Using various aids and sheer determination, I felt as if I was returning to my former self. Most importantly, I started to straighten up. Walking benefits both the body and mind. Music and podcasts were incredibly helpful, and fortunately, the park had plenty of benches for breaks. Over time, I gained much more confidence and made many new friends during this period when people were coming out of lockdown.
Wearing a hat and sunglasses shielded me from the sun's rays and protected my sensitive eyes, and I believed it kept me unrecognisable. However, during one of my laps, a lady approached me and asked, "Is that you, Caroline?" I was embarrassed that she recognised me, but it also meant that I must have started to look like my old self again so I was getting better until the prednisolone episode.
Photos left to right 9th - 13th September 2020
September - Liver Clinic QE
Extracts from QE letter:
I must say she feels remarkably better since going on a small dose of Prednisolone and all of her symptoms with regards to nausea, fatigue and loose motions have resolved within 24 hours of doing so. This is not a surprise as she was on a long-term prescription of Prednisolone and on retrospect, this should not have been stopped suddenly at the three-month mark. I am very grateful for you taking this on and reviewing her short Synacthen test when she is down to 3 mg once a day.
She is describing, however, a degree of mistiness bilaterally in her vision which is now affecting her reading and her ability to drive. She is awaiting an emergency Ophthalmology appointment and I would be very grateful if you could escalate this.
This may be due to the viscosity change as a result of being back on the Prednisolone, but she certainly warrants an urgent eye opinion as a result of her glaucoma, cataracts and uveitis. From a liver point of view, she is doing exceptionally well and I have given her a repeat prescription and will see her again in six weeks' time.
Her ALP has marginally increased. I'd be grateful for a USS locally to review her ducts and
HA (this not urgent, but within the next 4 weeks would be great)
Bloods: Bilirubin 5, ALP 152, ALT 11
Weight 49 kg
September - RUH Letter
Extracts from RUH letter:
Dear Mrs King I am just writing to let you know that I have seen the blood test results performed on 7th September. I am pleased to let you know that this does not show any worrying findings. Your white blood count is just a little above normal and I suspect that this is related to your ongoing steroid medication. Your liver blood tests are normal, apart from a very marginally elevated ALP of 154 and your kidney function is normal.
Your CPR is less than 1 and this is a test that we would expect to becoming elevated if you were developing inflammation or infection. I have just received your message about flu and pneumonia jabs and would strongly recommend that you go ahead with these.
Hair Day
Top photo pre transplant 14th September 2019. Bottom photos 29th September 2020
It was time to tidy up my hair, and who better to call than Anthony again, who had boosted my confidence when it was thinning before my day out at the Cotswold Manor lunch. What a difference a cut, shampoo, and blow-dry made. Due to the uneven growth, he gave me a fringe, which I found unusual as you an tell from the look on my face! But one must trust their hairdresser. I can't thank him enough for the care before and after.
October - 1st Left Eye Operation (Cataract)
I was so excited when I was called into the BEH to be measured for the lens for my cataract surgery. Once again, the hospital was eerily quiet, with only minimal staff around. Afterward, I sat in the waiting room, and a nurse came up to me to say that all the measurements were fine and that I would hear from them in about two months. TWO MONTHS!?! It was a living nightmare not being able to see - imagine a very dirty car windshield that needs a good wash, and you can barely see through the grime. A few wipes with a good wash, and suddenly it's clear. That was the state of my eyes.
I was so distraught and not thinking straight told her I’d rather have another liver transplant than continue in that condition. Someone must have overheard me because a kind man came over and asked what the issue was. I explained, he went away, returned, and said I would have the operation within two weeks. I'm not a drama queen but by anyway, I was so grateful.
Extracts from BEH letter:
It was a please to see Caroline today and I am delighted to note that her vision has improved in the left eye following the recent cataract surgery. She does feel the that the vision is definitely improved, although has been slightly blurry over the last day but without any pain. We will keep a close watch on her before listing her for fellow surgery.
Selfie after my cataract surgery. The procedure wasn't pleasant, and while lying on the operating table, I heard a loud thumping noise. Mr. Greaney, the surgeon, advised me to calm down because my heart rate was getting higher and higher. When I asked how he knew, he explained that the loud sound was my heart rate being monitored and it was echoing in the theatre! I gradually calmed myself, and to this day, I use this calming technique for all future procedures. A few days later, for the first time in about a year, I could see again. It felt like heaven, although I knew I would have to undergo the same procedure again, but at least I would be prepared for it.
October - Liver Clinic QE
Extracts from QE letter:
Telephone Consultation due to COVID 19 epidemic. Physical examination was not possible and access to blood tests /imaging is limited Individual risk assessment was conducted to determine the necessity of blood testing and imaging.
Today I had a telephone consultation with Caroline. She is generally feeling well in herself. She has had a recent positive COVID contact, so she is self isolating and had a test. She herself feels well. She is off Morphine and had an operation for glaucoma and cataract on 20th of this month. She is on drops of steroids and Chloramphenicol. I note that locally there has been a plan to reduce her steroid down to 3 mg and then arrange a short synacthen test. I have advised her to continue with 3 mg at least long term before a local steroid plan is made. She continues on Adoport 5 mg BD, Mycophenolate 1 g BD.
Her blood pressure has been elevated with readings above 140/80 consistently and I have asked her to increase her Amlodipine from 5 mg once a day to BD. She has described some itching and Dr Armstrong my Colleague noted her ALP drifting up and thus we have requested a local ultrasound to be arranged to ensure no hepatic artery thrombosis. It may well be if her ALP continues to be elevated an MRCP could be required.
Face to face consultation will be arranged for six weeks' time.
November - Liver Clinic
Extracts from QE letter:
MANAGEMENT PLAN:
1. Local team to kindly arrange urgent ultrasound of the abdomen (intermittent itch, raised alkaline phosphatase).
2. Bloods today.
3. Face-to-face appointment in six weeks' time.
It was my pleasure to meet Mrs King in the clinic today. I also had a discussion with Dr Rajoriya about her case. I believe this face-to-face appointment was supposed to be in next five to six weeks' time, but may have been arranged because of some clerical error! I have apologised to Mrs King for this.
She is doing well and remaining active. She feels energetic and has gained weight and muscle mass. She recently had eye operation and has recovered from that and has got a follow up appointment with the Eye Team next week. She started to have itch few weeks ago which settled on its own and currently she can have a very intermittent minor itch which is not affecting quality of life. Her last ultrasound was cancelled as she had to self-isolate and she is in the process of rebooking this.
Hence I have not requested at UHB. I have done some bloods today. I would be grateful if you could forward the results of ultrasound once done. If ultrasound shows any issue with the biliary tree, or if her liver enzymes demonstrate rising trend, or if itching worsens, we may have to consider doing an urgent MRCP. I have asked for a follow up in six weeks' time.
Bloods: Bilirubin 5, ALP 137, ALT 14
Weight 49 kg
Weight gain
13th September 2020 Weight gain, my watch nearly fits but not quite. 12th November 2020, 178 days/6 months post Tx.
November - RUH Letter
Extracts from RUH letter:
Dear Mrs King I am writing to let you know that your recent ultrasound scan of your liver looks completely normal. The scan also shows that blood is flowing freely through all the blood vessels around your liver (portal vein, hepatic veins and hepatic artery).
The scan had been arranged because one of your liver blood tests call the ALP has been rising slightly. It would be very useful for you to have and up to date liver blood test to compare with the last test taken here on the 7th September which showed an ALP of 154. This will help us to decide if we need to take things further by doing a different sort of scan of the liver called an MRCP. I have placed a request on the system in use at your GP surgery and if you wold be kind enough to book in for a blood test I will look out for the results.
I have also been in touch with the Endocrine specialists at the hospital about arranging a test called a short Synacthen test to assess how well your own natural steroid production is working. I will update you once I hear back from them. You should remain on Prednisolone 3mg daily until we have done the test. JM
So, I went to undergo the Short Synacthen test. It was painless, and I felt fine. However, I was quite disappointed to learn that my adrenal levels are low, meaning I will need to stay on prednisolone and must continue with a daily dose of 3mg indefinitely. I now have a kit prescribed by my GP, who, during our phone conversation, remarked, "Let's hope you never have to use it!" when I noticed the size of the needle.
December - RUH Letter
Extracts from RUH letter:
Dear GP I had a follow up telephone consultation with Caroline today. From the point of view of her liver transplant, things seem to be going well. Her alkaline phosphatase has settle to normal and her ultrasound scan showed no concerns about her live or the blood flow through the major vessels. Her blood pressure has also come under control with an increased dose of Amlodipine.
A recent short synacthen test has confirmed that Caroline does have adrenal insufficiency and should not therefore reduce her Prednisolone below 3mg daily. She is also aware of the need to double the dose on 'sick days'.
The Endocrinology Team here have suggested that we repeat a short synacthen test. in a years time to see if her adrenals have recovered their natural capacity to use produce steroids in response to stress.
I recently received correspondence from Mr Burke's team at Bristol Eye Hospital and have responded by email, as Caroline is due to see them for a further appointment tomorrow. They are making plans to try and treat ongoing active intraocular inflammation in her left eye and one of the options under consideration was an increase in her systemic steroid dose.
I would have no objection to this happening, other than that Caroline already has experienced significant side effects related to systemic steroid use, but the critical issue is that once this course is completed, her Prednisolone doses should not be reduced below 3mg a day. Caroline tells me that she is travelling up to see the team in Birmingham for a further follow up appointment later this week, and I will plan to follow up with her again in three months time.
December - Liver Clinic QE
Extracts from QE letter:
RECENT INVESTIGATIONS:
Locally patient had alkaline phosphatase testing which was normal which negated the need for an MRCP.
I saw Caroline in clinic this afternoon. She is improving day by day, her mobility is better, her symptoms have gone away with regards to her itch and all in her graft is working extremely well. She had a number of questions today which we ran through. The only issue to highlight is that she is developing a little bit of discomfort around the scar site. I could not elicit a hernia on examination today, however, I will review it when we next see her in clinic with an ultrasound scan of the area. I have prescribed her medication and we will see her in eight weeks.
CHART
Christmas post tx was lovely. Without my transplant, I certainly would not have been sitting around the table. I will forever be grateful to my donor family and at times such as this, you wonder how they are feeling. I remember feeling much stronger and ate almost all of the lunch and more. My appetite had returned and I was making up for all the lost time. I was still eating none stop putting weight on very slowly. I was enjoying food again.
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