Part 11: The Long Road to Recover 2022 - 2023

January 2022 - RHU Letter

Extracts from RUH letter:

ASSESSMENT:

I spoke to Caroline King in hepatology clinic this morning. She fell over while walking at the weekend and unfortunately sustained a Colie's fracture to her wrist. She then developed a sore throat, fatigue and flue symptoms yesterday and was COVID positive on the lateral flow test this morning. She has not had any fevers or breathlessness and otherwise, feels well in herself. She is sending off her PCR test today. I have referred her to COVID at home who have dropped off a pulse oximeter and will be in regular contact with her.

I have also contacted Dr Robin Fackrell who is coordinating the community pathway for antivirals to prevent development to severe disease in those who are immunocompromised - she will come into the Medical Short Stay this coming Monday for nMAB.

Broken wrist and COVID

Yes, I knew it would happen someday. I fell and fractured my left wrist. I had met a friend early evening in Bath. While waiting for the train in the dark, I dashed towards an empty seat on the platform and ended up flat on my back. Lying there, I looked up and found myself surrounded by people asking if I needed an ambulance and if I was alright.

I was determined not to return to the hospital, and besides, I didn't have my night time medication with me. The guards helped me up, and put me on the train and finally make it home. I can't express the sheer pain I was in. The boys were shocked at the state of my left wrist when I returned home. I had instinctively used it to break the fall, and it was bent at a strange angle. I didn't care as long as I took my evening medication which, at the time was much more important to me.

The next day was terrible. I was in such pain. My sister-in-law Jackie drove me to the local hospital, where they told me I needed to visit A&E at Bath RUH for an X-ray and the wrist to be adjusted back into place—fortunately, the nurse didn't describe what that involved at the time.

I was dropped off at A&E, which was very crowded and I was very concerned because I had been advised to avoid such places due to the risk of contracting COVID. I explained my medical history to the lady at the desk, and I was immediately taken for an X-ray. Once the damage was confirmed, it was one of the most painful experiences I'll never forget, screaming in pain as they manipulated my fractured wrist back into place. Then, they cheerfully asked me what colour plaster I would like.

I had to contact a local taxi firm to take me home afterwards and waited in the waiting area. 2-3 days later, I felt unwell and tested positive for COVID. I contacted my consultant in Bath, and an ambulance picked me up from home Monday morning to return to the hospital for the antiviral treatment.

However, by the time I arrived at the hospital, I was one day past the treatment deadline, so I went home. I lost a significant amount of weight and couldn't eat much during that period. It brought back terrible memories of the NJ tube days and the community nurse.

As if adding insult to injury wasn't enough, I had ordered my car August 2021 which finally arrived - I hadn't driven for over two years - only for a friend to pick it up and drive it home for me. I then had to look at it for over two weeks before I was given the ok to drive again.

January - RHU Letter

Extracts from RUH letter:

Plan:

I reviewed you in the Fracture Clinic. I am pleased to hear you have been comfortable in cast. You feel the wrist is improving and the finger is certainly moving easier. No news of concerning symptoms.

February - RHU Letter

Extracts from RUH letter:

Plan:

Thank you very much for coming to the Hand Fracture Clinic today. Your wrist fracture is now comfortable out of plaster. You had excellent finger movement, roughly 2/3 arc of forearm rotation and about 30 arc of wrist flexion and extension.

I could now go out in my new car again. I was naturally nervous and after speaking to a friend mentioning that I couldn't remember how to put petrol in the car, she offered to show me so off we went and filled up. I drove everywhere, revisiting all the familiar places and exploring some new ones. With my new wheels, I regained my freedom and felt alive once more. I arranged everywhere. It's not until something you take for granted is take away from you, that you truly appreciate it when you have it again.

February - Liver Clinic QE

Extracts from QE letter:

I reviewed this very pleasant lady in clinic today. She has had a recent left-sided Colles fracture

and also had COVID last month. She tells me that the COVID was not severe, but then a week or

two after that, she started experiencing a cough with whitish phlegm with no shortness of breath. Her appetite was less than before, but now she feels a bit better with the cough improving and her appetite she is feeling that it is coming back. She does not have any temperatures.

Caroline is awaiting her short Synacthen test with the Endocrine Team, as she was previously unwell on stoppage of steroids and hence she is having the short Synacthen test under the Endocrine Team locally to address this, and see whether they would be able to try and withdraw her Prednisolone. Her last tacrolimus levels from 2nd February was 8.1 down from 10.4, and this is after adjustment of her dosage. Her most recent blood tests show an ALT of 22, bilirubin 5, eGFR 70 and an albumin of 39. Her uveitis has been pretty much stable.

I have examined her abdomen today and her abdomen is soft and non-tender, she tells me that

her hernia has been okay without any symptoms. I have requested bloods today with tacrolimus

levels and a chest x-ray to look into her chest symptoms, and I have prescribed her a 1 week

course of Amoxicillin.

Caroline does not feel she needs to be referred to a Dietician, and she feels that things are starting to get back to how she was previously, and hence we can watch and see how things will go. If she does not regain her appetite back and does not regain weight, then I think this should be investigated and for Caroline to be referred to a Dietician. She tells me that her weight is seven stones five currently, but as she just recovered from COVID illness, we will watch and make sure that things continue to improve for now. We will review her again in this clinic in three months' time.

Addendum:

CXR shows COVID related changes. Caroline feels better after finishing the antibiotics. Tacrolimus level came back 4.8, GGT 103 otherwise normal LFTs and also normal renal profile. She experienced some increased itching. I have discussed it with Dr Trivedi who advised to increase the Tacrolimus dose to 4 mg bd. I have contacted Caroline and let her know. It would be appreciated if her bloods including trough Tacrolimus levels, LFTs and kidney function tests could be repeated in 4 weeks and sent across to our team at QEH.

April - Eye reoccurrence - Deja Vu

I will never forget this episode. While I was driving to Bicester Outlet Village, I felt some scratching in my right eye. NOT AGAIN I thought, it felt like groundhog day. You've got to be kidding! I was overwhelmed with horror and fear once more. What if the Sarcoidosis has come back and attacked my eyes and the the new liver? I can't go through another transplant.

Then, after a while it vanished. Thank goodness and the rest of the day was fine. It happened again a few days later and I knew I needed to contact the eye hospital. I was told to come in immediately. After having my eyes examined, I was shocked and horrified to learn they wanted to perform surgery using a *Preserflo MicroShunt to relieve the eye pressure which was 59. The normal range is between 10 and 20mmHg. "When?" I inquired. "This afternoon, we can fit you in" came the reply. "No!" I just couldn't face more surgery. It was such a shock; I wasn't mentally prepared, and I also mentioned that I didn't have my evening medication with me. I must take my meds. It was so overwhelming, and I just couldn't do it. So, we reached a compromise: I would return to the hospital by 9:00 am the following morning.

I remember meeting my nice young surgeon Amun again on the morning of the operation. He had been one of the people in the room the day before when I was explaining why I didn't want the operation that afternoon. The Consultant asked him if he wanted to perform the operation and he said yes so off we went to do some checks on the eye. I think he was so excited that he put the blue cross on the left eye until I told him it was the right eye he was operating on which broke the ice and made us both laughed. That morning, I reminded him it was the RIGHT eye ok Amun...

Thankfully the operation was performed under a general and I went home that afternoon, wobbly but just relieved it was all over. During the follow-up clinic, the consultant was so impressed with Amun surgery, he called it a 'Classic Textbook' case. At the next clinic, Amun had the opportunity to see his work himself.

After several check-ups, I asked if Amun could perform the same procedure on my left eye, as I was confident in his abilities and felt secure with him after the excellent job he did on my right eye. Thankfully, the consultant understood my reasons, and Amun performed the second MicroShunt which was a success. After numerous follow-up clinics with good outcomes, he told me that he was leaving the hospital to join a new practice. I wished him well and thanked him for saving my sight. What a star, he'll go on to make a fine consultant.

*The MicroShunt is an 8-millimeter-long tube that is inserted into the eye to help lower eye pressure in glaucoma and reduce the need for medication. It is made entirely of a synthetic and biocompatible material. It creates an escape tunnel for any excess fluid from inside the eye to safely drain into a small blister, or filtering bleb, behind the eyelid. From there, the fluid is slowly absorbed into the bloodstream.

May - Bristol Eye Hospital

Extracts from BEH letter:

Operation:

Right tube implant 28th April 2022. Mrs King was reviewed at BEH 7 days after uncomplicated glaucoma surgery to the right eye. Her surgery is going really well and her pressure is much better. Next appointment: approximately 3 weeks in the Outpatients at BEH.

June - Bristol Eye Hospital

Extracts from BEH letter:

Operation:

Mrs Kings right eye is looking perfect. She should complete her drops as planned at the end of June. We will be performing Preserflo + MMC surgery in the left eye next week.

Bristol Eye Hospital

Back at the BEH for the next Preserflo MicroShunt in the left eye. This time, however, it was done under local aesthetic. I was fully awake for this procedure and heard every word and detail of what Amun was doing because he was talking through the procedure with, I presume a trainee. It was dreadful and I told him I could feel what he was doing so he had to keep spraying more aesthetic on the eye. Nevertheless, he worked his magic once more, and it was recorded as an uncomplicated surgery on the left eye.

Following this operation, led me to promise myself that should I ever required more surgeries, I would request a general aesthetic if possible. Thankfully my wishes were granted for 2 other unrelated eye operations in 2023.

Driving to the QE

This was the first time I drove myself to Birmingham for my clinic. I was so excited that I hardly slept the night before. I left in plenty of time to stop off at the posh motorway service station for break and a quick nap. And I needed it. I cannot express my sheer happiness on that day. Finally, in control of my life again. I thought of all the times I had been driven up and down the M5 and M4 by all my friends and family and all the shared conversations, my fears and relief after clinic then falling fast asleep sometimes midway through conversation.

July - Liver Clinic QE

Extracts from QE letter:

ASSESSMENT:

I reviewed Caroline in clinic today. She is well post-transplant with increasing mobility. She was

quite excited today as this is the first time she has actually driven in a while!

I have made no real change to medication today aside from lowering Mycophenolate to 500 mg

twice daily. Liver biochemistry is pristine and tacrolimus levels just where we would want them to be. Given the dosage reduction in MMF I would like to see Caroline back in Liver Clinic 2-3 months from now to ensure bloods are stable.

My first visit to the sea

Freedom at the beach 4th September 2022

A Strange Moment

One day, while shopping for food at the supermarket, I walked past the vegetable section and spotted broccoli. I recalled thinking to myself, "I ate you nearly every day for years! I steamed, boiled, and even turned you into soup. You're supposed to be a superfood, protecting against everything, and yet look what happened to me!" Afterward, I felt much better. Although I can't bear to look at the bunched-up version, let alone eat it. However, I can eat the long-stemmed variety.

November - Liver Clinic QE

Extracts from QE letter:

RECENT INVESTIGATIONS:

1. Blood tests in July 2022 were normal with a tac level of 6.5.

MANAGEMENT (01:44) PLAN:

1. Repeat blood tests today including U&Es, full blood count, liver profile, bone profile,

tacrolimus trough levels, magnesium, zinc, B12, folate, ferritin and thyroid function tests

and parathyroid tests.

2. Follow up in six months' time.

I reviewed Caroline in clinic today who seems to be doing very well post transplant. I'm

pleased that she seems to continue to gain weight since her transplant surgery. She is

mobilising well with a stick.

Her main concern today is ongoing itchiness and hair thinning. We initially attributed

her hair thinning secondary to her COVID infection, but it has now been several months

and the hair thinning has not quite resolved yet. I can see that she has had B12, folate

and ferritin levels done almost a year ago and I will repeat these today and I will also

check for zinc and magnesium as well as thyroid and parathyroid tests. If all of these

come back as normal, I suspect that either this is related to COVID infection or possibly

just due to increased age. Caroline does understand the above.

I will arrange to see her again for six months' time and I have given her a prescription

for Adoport and Mycophenolate today.

Note: Blood tests have shown normal TSH, Ca, Zn, Phosphate, ferritin, B12 and folate

levels. PTH was slightly raised at 12.5 and I would recommend repeating this in 4

weeks time. Tacrolimus levels were 7.3. WBC were raised at 12.6 (no CRP). Mg was

slightly low and may be worth repeating- if still low, I would suggest correcting with oral

medication in the first instance.

My worst nightmare was happening once more. My beloved hair was thinning out again. I understood that age might be a factor. However, my magnesium and iron levels were low, so after taking a course of tablets and magnesium sachets, it stared to return to its thickness again.

January 2023 - Bristol Eye Hospital

Extracts from BEH letter:

Operation: YAG Posterior Capsulotomy

Mrs King had uncomplicated surgery performed at BEH. I was pleased to meet this nice lady today. She underwent uneventful YAG capsulotomy redo laser to the left eye. The patient was discharged from follow up immediately after surgery.

May 2023 - Liver Clinic QE

Extracts from QE letter:

ASSESSMENT:

Caroline is well from a liver perspective and I have no immediate concerns. She is awaiting further follow up regarding reduced bone mineral density and I wish her well in this regard. Liver and renal bloods today are pristine with good tacrolimus levels.

Next appointment: six months from now.

Next Read:

Part 12: 2024 and the Present

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