So yet again, I find myself sitting in reception in Renal Outpatients at the Royal London waiting for blood results.
I had expected my appointment on Tuesday to be the last one here, but I had a call from Vicky yesterday informing me that my creatinine was 177 on Tuesday and so they wanted me to come back and have my bloods done again today.
The bloods were taken at 11:30 and I was told to expect the results at 1. Needless to say, that was 20 minutes ago and I'm still waiting.
Every other time but one that I've been called back for repeat bloods has meant another stay in hospital and the one that didn't should have as the kidney was being rejected at the time. As a result, I have come prepared this time - with all my drugs, some spare clothes and my palm and phone chargers.
After I got the results:
At about 1:30, they got my blood results back and my creatinine was 161, which they decided was enough of a drop to let me go home. They will have a meeting tomorrow to decide what to do next.
I've blogged before about my GP's inability to create repeat prescriptions for me without errors. I took a repeat prescription request in on Monday and went to collect the prescription this morning, expecting to find that they'd done it all wrong again.
To my surprise, when I got it I found that everything seemed to be in order. I suppose he had to get it right eventually! The doctor had put down every item I'd asked for (even the one his computer said wasn't due until April) and prescribed an 84-day supply of each.
I then cycled straight to the Pharmacy to get the prescription filled (having remembered to take my HC2 certificate with me, so I wouldn't have to pay).
When I handed the prescription over, I told the pharmacist that the GP seemed to have managed to get it right first time, but she soon found an error - he hadn't specified the type of Aspirin.
I'm taking the opportunity to update my blog while on the train up to the Renal Clinic. Hopefully, this will be one of the last couple of trips before I am transferred to Southend Hospital at the end of March.
Originally, I was supposed to transfer to Southend on 10th January, but as they were still waiting for my blood levels to settle down after my rejection episode before Christmas, that didn't happen and the earliest Southend could give me for another appointment was 28th March.
Now that things are improving, I will need to start thinking about coming off Incapacity Benefit and looking for more customers.
After clinic...
Good news today - my creatinine was 148 at the last clinic two weeks ago. Dr Raftery had said he didn't expect to see it that low again following my most recent rejection episode, so I'm pretty pleased!
I'm on the train on the way home from clinic.
I saw Dr Raftery today - for the first time in quite a while. My creatinine was 170 last clinic, which is a bit better than it was, but not exactly fantastic.
He told me that my last biopsy had shown a fair amount of scarring on the kidney, which means that he doesn't expect my creatinine to get back to what it had been - 150 and less.
He also said that even looking back, he still wouldn't have biopsied me based on my creatinine levels, which apparently gave no indication that I was having a rejection episode as early as I must have been to cause that amount of damage.
Well, here I am in the clinic waiting room, taking advantage of my new Palm keyboard to write my blog. It doesn't lend itself well to being used on my lap - I've had to borrow a magazine from the coffee table to provide some stability, but even so, the keyboard wants to fold in half when I type. It'd be fine on a table though.
Half way through that last sentence, I was called in to see the doctor. My creatinine last week was 176 and the previous value was 182. My Tacrolimus dose has been reduced again - now to 5mg bd.
I'm now waiting for my bloods to be taken and then I will go to the main Outpatients department to chase up my travel cost refund. The wait for bloods is usually pretty tedious. My number is 55 and they were on 35 when I arrived.
Entry continued at home
On the way home, I found myself alone in a tube carriage between Whitechapel and Mile End [actually Mile End and Stratford] and used it as an opportunity to try out the camera on my new phone. Phone camera technology has definitely improved - this one produces images at 1200x1600 and they are reasonably good quality. This one is a bit blurry, but I did take it on a moving train.
As mentioned in the previous entry, I went up to clinic today. It was busier than I expected and I had to wait over an hour and a half to be seen. Fortunately, though, I had brought the book I've been reading since New Year's Eve - Otherland, by Tad Williams.
I was glad to discover that the trains were working normally - when I went up to have my bloods done on Sunday, there was a Rail Replacement bus service running between Wickford and Shenfield because three trees had come down on the line, bringing the overhead power cables down, during the previous night.
When I finally saw the consultant, I had to update him on recent events. He was aware I had been in hospital, but had to rely on the computer record for details. For some reason there seemed to be no record of my second biopsy.
However, my blood results showed a reasonable improvement in creatinine level - from 215 on Wednesday to 182 (or was it 186?) on Sunday. I had half-expected to find it had got worse, so that was good news. I have to go back on Tuesday next week and will not be transferring to Southend on 10th Jan (the following day) as had originally been arranged: they want my creatinine and tacrolimus levels to have stabilised before I am transferred, which will probably mean continuing to go up to the Royal London until the end of this month.
At clinic this morning, I discovered my creatinine on Christmas Eve was 196 and my potassium has increased too. This is not good news and could mean that the rejection is still going on. Hopefully though, it is simply that the tacrolimus dose is too high and is poisoning me, causing reduced kidney function.
They can't measure tacrolimus levels at the Royal London Hospital and have to send them to another hospital to be tested. At the time I was in clinic, they hadn't yet got the results back from Sunday. They should have the results back tomorrow though and will then be able to decide whether they need to cut my dose.
I have to go back to the Royal London on Tuesday next week and probably at least once more after that before I transfer to Southend Hospital's Renal Unit on 10th January.
Having had a further reduction in creatinine yesterday, I was able to leave hospital yesterday afternoon.
I've now updated my creatinine graph to reflect the last week:
The doctors don't seem to be entirely sure about the situation with my kidney at the moment. Certainly, my creatinine has improved and they've increased the amlodipine dose to control my blood pressure better, but because Tuesday's biopsy didn't show any improvement, they don't yet know whether the rejection has been dealt with.
Provided that my blood results today show a reasonable creatinine value, then I will be allowed to go home this afternoon. If the rejection hasn't been brought under control, the treatment is much more aggressive, so they want to see if changing to Tacrolimus is doing the trick before going ahead with that.
After yesterday's "fun" of a biopsy, today was rather less interesting. The ward round was quite late today - there was only one doctor, who couldn't tell me any news about what they plan to do next - so I didn't get a chance to go out to the Internet cafe this morning.
As soon as I could after lunch, though, I got dressed and went over there to catch up with my spam and update the SEEFoE website.
I returned to the ward in time for my Calcichew and Sodium Bicarbonate at 3pm, and spent most of the rest of the afternoon reading "The Right Attitude to Rain", the third in the Isabel Dalhousie series by Alexander McCall Smith.
After dinner, I got my blood results, which showed a drop in both creatinine and potassium - to 176 and 4.6, respectively. I had been to the shop across the road when I had been out, and I offered Artur - the Polish guy in the bed opposite mine - a piece of flapjack, which he'd never had before. In return, he gave me a couple of different Polish nutty chocolates, called Bajeczny and Pierrot, which I'm sure will do wonders for my potassium! Artur has started dialysis this week, but clearly hasn't been told about the renal diet yet coz he's been drinking orange juice and eating satsumas. Come to think of it, the renal ward catering staff seem to know just as much about renal dietary requirements.
This evening, I tried to upgrade to Opera Mini 3 on my palm, with little success. The application downloaded and installed, but when I try to get to a web page, it displays a licence agreement and before giving me a chance to agree, whisks me off to the Applications menu.
Update: Having done a bit of googling today (22nd), I've found the answer to the Opera Mini problem. I had to increase the Maximum Java Thread Stack Size from 2Kb to 32Kb. Opera Mini now behaves itself.
I was awake and having blood taken at 6:30 this morning hoping, in vain, that it would show an improvement in my creatinine and so avoid the need to do another biopsy. The bloods came back showing a creatinine drop of 5, which was no-where near enough, so the biopsy went ahead as planned.
Eventually, after a whole morning of waiting, it got under way. Biopsies don't hurt as such - you're under local anaesthetic - but there's something about having bits of your internal organs removed with a long needle while you're fully concsious and required to remain completely still that I find really unpleasant.
It took the doctor about eight attempts to get enough samples he was happy with. Then began the six hours of lying still to wait for the blood to clot. My dad arrived with the third Sunday Philosophy Club book and some clothes and stayed until I got the biopsy results at about six.
They showed no change since the biopsy on Friday, so I've got to stay in hospital and wait for the consultant to decide what to do next tomorrow.
Note: this post was written in TejpWriter on my Palm, uploaded using DAV then pasted into Lynx - lets hope it works right :-)
Further note: Well, clearly it did... although I must remember to put paragraph formatting in next time. Perhaps I should look for blogging software for the palm...
I was expecting to go home this morning, but the doctors came and told me that they haven't yet seen an improvement in my kidney function following the methyl pred and so they're keeping me in.
They're going to do urgent bloods in the morning and if they still see no improvement then, they are going to do another biopsy. If that shows that the situation has improved, they'll send me home and monitor me in clinic, if it hasn't then they will start with more aggressive treatment.
I don't seem to be in any immediate danger though - my creatinine is hovering around 200. The treatment they are doing now is apparently about making the kidney last 10 or 20 years rather than 5.
In the meantime, I have to try and find ways of keeping myself amused, which basically means getting out to the Internet cafe at every available opportunity!
I was booked in to have a biopsy on Monday using the Renal Outpatients Dept's new day procedure scheme, but because of the creatinine rise, they wanted to do one sooner. So on Friday morning, I was biopsied. Fortunately, this time, the doctor was far better at it than the one that performed the biopsy in August, and although having large needles stuck into you to remove samples of your organs is never a pleasant experience, it was a vast improvement. He took an extra sample to send to a university in Canada, who are researching a method for identifying rejection from a blood test rather than a biopsy. Despite this extra sample, he still only needed a total of four goes as opposed to the eight or whatever it was in August.
Following the biopsy, I had to lie still for six hours to wait for the bleeding to stop. The results came back at around 5pm, showing what the doctor descriped as a "good amount of rejection". When I asked him to qualify "good", he said "good as in 'a good car crash'"...
I had been pointing out at regular intervals that it was my sister's wedding the following day, and the doctors agreed that there was no reason for me to miss the wedding. However, following the biopsy result, they wanted me to complete the course of methyl pred. I had intended to go home on Friday evening, but they wanted me back first thing on Saturday morning for the third dose, so I had the second dose on Friday, stayed in and had the third dose before being collected by my dad and taken to my sister's in Maidstone to get changed for the wedding.
Since my posts on Tuesday, a lot has happened. I went to clinic as normal on Wednesday and had bloods taken. The doctor was quite positive and said that he thought I'd just need to go to clinic at the Royal London once more before returning to the care of the Renal Unit at Southend on 10th January.
However, on Thursday morning, I had a call from the clinic, who informed me that my potassium was 6.7 and they wanted me to go into A&E at Southend immediately to have it checked. I went in at just after 11am, expecting to have bloods taken then go home. However, they took the bloods, then did an ECG. They decided to admit me to Blenheim ward because they then also wanted to do an ultrasound of the transplanted kidney to ensure that the blood flow to it was still OK.
I had to hang around waiting for a porter for quite a while, and in the end it was a couple of nurses that wheeled me up to the ward (despite the fact that I was perfectly capable of walking). Almost the moment I arrived, a wheelchair arrived to take me down to Ultrasound where I had to wait for a good hour before being seen. Fortunately, though the Ultrasound confirmed that the blood flow to the kidney was good, so I was taken back to the ward.
The blood results came back later on, revealing that my potassium was a bit lower than they had thought - 5.9 - but my creatinine was 227, so the decision was made to transfer me to the Royal London.
I then had another wait of several hours while they found an ambulance crew they could take off the road to transport me to the Royal London. Fortunately, though, my parents brought my drugs, clothes and a couple of books to read so the wait wasn't quite as dull as it could have been. I was also able to listen to I'm Sorry I Haven't a Clue on BBC 7 via my bedside console.
Eventually, at about 10:15pm, a crew arrived to take me to the Royal London. When I arrived, I was given an intravenous infusion of Methyl Prednisolone, which they had given me in August to treat my first rejection episode.
I've just had a call from Vicky at the renal clinic. She told me that Dr Raftery has decided I do need a biopsy despite my improved creatinine level, on the basis that I'll be being transferred to Southend in January and they want to make sure that there are no problems with my transplant before that time.
The clinic is introducing a new system next week to allow transplant biopsies to take place as a day procedure in the Renal Outpatients clinic, thus avoiding the problem of waiting for a bed to become available and having to stay in. This is only happening on Mondays though.
I'm on a business planning course for the next two Mondays, so they will see if the biopsy can be delayed until the following Monday. Failing that, I'll have to go in on another day and wait for a bed on one of the renal wards.
