Part 12: 2024

January 2024 - Liver Clinic QE

Extracts from QE letter:

DIAGNOSES:

1. Hepatic sarcoidosis.

- Liver transplant in May 2020, DBD donor, CMV negative to negative.

2. Sarcoid uveitis.

3. Cataract surgery to the right eye.

4. Hypoadrenalism secondary to long-term steroid use.

- Adrenal insufficiency.

5. Osteoporosis with previous left sided Colles fracture.

6. Small right femoral hernia.

CURRENT MEDICATIONS:

1. Tacrolimus (Adoport) 4 mg in the morning and 3 mg in the evening.

- To lower to 3mg twice daily

2. Mycophenolate Mofetil.

- To lower to 250mg twice daily today

3. Aspirin 75 mg once a day.

4. Lansoprazole 30 mg once a day.

5. Amlodipine 10 mg once a day.

6. Prednisolone 3 mg once a day (long-term).

7. Adcal-D3 one tablet twice a day.

ASSESSMENT:

It was nice to see Caroline back in clinic today - she is well without significant concerns.

I have lowered Mycophenolate to 250 mg twice daily (this is with the approval of

Ophthalmology Colleagues) and look to stop this in the summer barring any surprises.

Tacrolimus levels are also higher than they need to be (>10) so I will ask Caroline to lower the

Adoport on receiving this letter. Next appointment: six months from now.

As usual, I enjoy visiting the clinic and seeing Dr. Trivedi. I told him of the good news about my eyes, mentioning that the Uveitis Bristol Eye Team was very pleased with my condition. With Birmingham's approval, we decided to reduce the Mycophenolate dosage to half tablet in the morning and half in the evening.

I was pleased with this decision, as fewer medications are always better. Everything went smoothly until the end of February when I noticed a change in my eyes. My vision shifted from not needing long-distance glasses to needing reading glasses, which was strange. Within a week, my vision became quite misty and I was waking up with black dots in front of my eyes. I contacted the secretary to explain my situation and asked for a callback. I returned to the optician for a check-up and was assured everything was fine. However, I know my eyes well, and I sensed something was not right.

April - Bristol Eye Hospital A & E

After numerous phone calls to the secretaries I knew my eyes were seriously in trouble. On the morning of April 9th, I went to the Bristol Eye Hospital A&E department early and checked in. I underwent the usual eye tests and waited to see the doctor. I sensed something was wrong because they had to call several people to examine my left eye again.

The visit to the A&E department saved my eyesight. The good news was that trusting my instinct was absolutely the right decision. My eye was very inflamed. Then, I received the bad news. I needed to start on 60mg of Prednisolone immediately for 4 days, then gradually reduce the dosage each week until I reached 5mg. NO! Steroid face again! Yes, and I'm sorry, but it has to be done, and we need you back in a week.

Steroid face - celebrating my 4th anniversary May 2024

May - Bristol Eye Hospital

Extracts from BEH letter:

IOP: 10 mmHg Right Eye - 12 mmHg Left Eye

Mrs King is on a current systemic medication by the Liver Transplant Team including Tacrolimus 3mg am and 3mg pm, Mycrophenolate 500mg twice a day, Prednisolone 20mg and her current medication from the Uveitis Clinic to be tapered 5mg per week until she reaches 5mg per day which point we would review her again.

This particular visit held a special place for me because it felt like I had come full circle. The consultant was Mr. Kiani, the same person who contacted me on the Saturday afternoon following my trip to Specsavers - the consultant who called me to meet him at the RUH in September 2018, as mentioned in Part One Live Changing Events.

He asked about my well-being, and I told him that I was fine and grateful for the hospital for saving my vision. He then wanted to know how I felts after everything that had happened over the past five years. I replied that everything was fine, and he continued asking how I truly felt about the trauma of the eye surgeries, the experience of having a transplant, and my current feelings. I looked at him and admitted that I wasn't sure how I felt, as no one had ever asked me that before. You just get on with it and everyone assumes you are fine.

August - Liver Clinic QE

Extracts from QE letter:

It was nice to see Caroline today, although I was saddened to hear that she had a

significant flare of uveitis that was sight threatening. Thankfully Caroline was put back

on high dose steroids promptly, and is now back on 500mg BD mycophenolate.

Unsurprisingly, Caroline has developed some cushingoid features, which should

resolve as prednisolone is weaned In the interim, would it be possible to tee up a

DEXA scan locally? Mainly given Caroline's long-term corticosteroid use.

Next appointment in liver clinic: six months from now.

NB, Blood tests today are mostly ok, aside from a slight elevation in serum ALP (156 IU/L)

and creatinine values (98 micromol/L). Tacrolimus levels are normal at 6.3 mcg/L

I can see that in the past Caroline has manifest elevated parathyroid hormone values

in the context of a normal vitamin D and calcium. At present, no further action is

needed from my point of view, but I would be most grateful if you could repeat her

bloods (liver, tacrolimus levels, PTH, vitamin

October - Liver Clinic QE

Back to the QE for a MRI scan. I had mentioned some discomfort in my right side, so we discussed an MRI scan. Once placed in the tunnel, even though it was a newer larger version - I stupidly opened my eyes and panic swept over me and I pressed the plastic ball to get me out. Once I had a sip of water and reassurance and went back in with my eyes firmly shut and managed to complete it. Both bloods and the MRI scan results came back normal thankfully.

December

On reflection with its ups and downs, I made it to the end of 2024. What an achievement. Lessons have been learnt with medication and resilience. I'm now looking forward to an exciting 2025. One of my goals on my bucket list is to finally have a holiday in the sun.

January 2025

Watch this space.

Click here for Part 13