All clear

Today I went for my check-up and the doctor gave me the all-clear, so I can recommence my life.

I am feeling pretty well; the rash has all but disappeared, and I just have some residual neuralgia (nerve pain) in my upper right back. The doctor says that I can increase the dose of pregabalin from 75mg twice daily to 100mg twice daily, and it will probably control the neuralgia. Having read the Wikipedia article about pregabalin, I am keen to reduce and stop it as soon as possible, but the neuralgia may last for some weeks, so it will be a case of experimenting with the dosage. In the short term I will increase to 100 and see what effect it has. In addition to the pregabalin, I am on a course of high-dose oral antivirals (the drug is called valaciclovir) that will end on the 15th of July.

I have been feeling more tired than usual during this week, as a result of the viral infection. However this effect is diminishing as the antivirals do their work, and I feel stronger each day. Now that my immune system  has had a good look at VZV, I hope it will keep it under control for the foreseeable future!

Discharge (from hospital)

After the doctor telling me yesterday I would be here for the weekend, I rang Babs this morning and asked her to bring in some serious supplies for the weekend. Shortly after we spoke my consultant arrived.

My liver scan of yesterday was completely normal, and my liver function tests have improved, so she decided that I really don't need to be here any longer, and that today I will be discharged. I will complete the antiviral treatment with a strong oral dose rather than by IV. My "pox" has pretty much all scabbed over, and the pain is the same as ever, controlled by the pregabalin. I need to come back for a final checkup next Wednesday and then hopefully I can get on with life.

After they left, I tried to ring Babs with no success, and so she soon arrived loaded with food that now I will take home with me. Still, we had a nice chat for half an hour, mainly golf gossip.

So now I am in my room, all packed up and watching Wimbledon, waiting for the pharmacy to dispense my medication so that I can go home.

I will write what I hope is a closing post to this sorry episode after my consultation next Wednesday.


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Disseminated varicella zoster virus

I have "disseminated VZV". VZV is the chickenpox virus, which normally resurfaces as shingles when it recurs, but for me it has recurred "disseminated", which means that the virus is in my bloodstream. Basically, I have chickenpox!

My health is OK. I have some nerve pain in my back and across my stomach, but it is low grade enough to forget about when otherwise occupied. After being told early on that I would be allowed to leave the room, now I am told I cannot. This is rather annoying, but I don't think I can fight it.

My liver function tests are not perfect, so I am going for an ultrasound of the liver later this morning. In preparation for this I am nil-by-mouth (but only for four hours).

The registrar who admitted me has just visited. They will not discharge me until the virus is negative in my blood, which will not be before the weekend. I must confess the prospect of spending another 5 days in here is a bit depressing. Also, he says the neuralgia may last weeks, and can get worse after the rash has cleared up! However, we can increase the dose of pregabalin accordingly ... if the pain can be managed to its current level, then I will be OK.


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Steady progress

It is 14:40 on Wednesday. I slept pretty well, and was awake at 6am for the next dose of IV aciclovir. The vein started hurt towards the end, so we removed the cannula afterwards. I had high hopes for that cannula, but my veins are not in good shape.

Early in the morning Babs rang offering to bring supplies, which was very nice. She popped in later with crisps, nibbles and sandwiches and fizzy water to supplement the legendarily bad hospital food. She stayed long enough to hear the story so far (with a few embellishments); good luck in the club championship Babs. Then my brother Les rang, just to say hello in between meetings, and pretty soon after that Marilyn rang (from a very boomy stairwell) to wish me well and let me know she has not had chickenpox. Quite a busy morning!

Shortly after lunch the on-duty haematology registrar came to say hello, and hear some of the history. She inserted a new cannula into the back of my left hand, and I am currently receiving the next dose of aciclovir. After she left my consultant came to see me. After checking me over and seeing my general state of health, she thinks I will probably not be here too much longer (again non-committal, but at least positive). She thinks it is unlikely that there will be prolonged posttherpetic neuralgia (i.e. chronic nerve pain), which I very much hope.

Time to watch the tennis ...

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Supplemental

I am back in UCH, T8 room 31. Visitors allowed, but I can leave the hospital; call me first and if I am not hooked up we can have a drink or even lunch somewhere in or around Fitzrovia :) I am not contagious unless you touch me (and why would you?), but if you have never had chickenpox then steer well clear.

It is very depressing being back in a hospital room. I had hoped to put a few more years between me and the hospital, but clearly I was just naive. I spoke to a doctor (not one previously known to me), who told me this:

I should stay in until all the pustules have scabbed over. Then, they may allow me to go home, but the pain will probably endure for some time. However, the drug regime seems to keep that more or less under control, so with a bit of luck, and given that the disease already spread for four days, I may be home by the weekend (but as you know, I am an eternal optimist).


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Location:T8, bed 31

Back in hospital

I am in the Cancer Centre in London, waiting to be admitted to hospital. I have developed shingles, which was not unexpected, but the ferocity of it is! Normally, shingles (herpes zoster) is localised to one nerve, but mine has attacked my whole body. I need to be hospitalised for IV treatment, but I do not know for how long exactly - maybe 5 days! 

I must thank Rose for her love, support and forbearance over the past few days. It has not been easy for her and I can never be grateful enough. I love her very much.

This is the story ...

Last Tuesday - one week ago, I got a pain in the middle right side of my back. It seemed like a muscle strain, and was not so bad. On Wednesday we drove down to Sorede, and I did not have too much trouble. However, on Thursday and Friday the pain became much more severe, and spread across my stomach. Originally I had started taking ibuprofen (as a pain killer/anti-inflammatory), but this was having no effect.

On Saturday morning I awoke with an angry rash all over my head. After the discussions I had with my consultant about it, the return of shingles was my first thought. We had always planned that I would call her if there were any symptoms, but now it is Saturday and she is not there! So, I called the 24-hour help line, which is held by a nurse in the main hospital. I took a couple of pictures and sent them to her, and she showed them to the on-call registrar. This is one of them:

The doctor said it is probably not shingles because the rash is so widespread, but more likely to be an allergic reaction of some kind. At this stage the rash was not so bad, but the back and stomach pain were terrible. I went to a French doctor, and he examined me very cursorily (I was not in a good state to be pushy), and he just prescribed an anti-inflammatory for the pain, and ordered a blood test and Xray (?) for Monday.

The pain did not subside, so I rang back the haematology help line, and the nurse said to me, "if you were in the UK, I would tell you to go to your nearest A&E (emergency)". So, off we went to the nearest big hospital with an A&E. I was in a very bad way at this stage, in a lot of pain. The rash was getting visibly worse by the minute. The experience at Perpignan A&E was like this:

The hospital is a new(ish) building - the walkways from the car park to the building are not finished.The receptionist is very welcoming. I hand over my passport and EHIC card (google it), which he copies, and we sit down to wait. I am triaged quite quickly (after 30 minutes), temperature and blood pressure are taken, and we are led to a treatment room. We wait another 40 minutes and a doctor comes to examine me. We discuss the possibility of shingles (it is called Zona in France, and I see the Wikipedia page also mentions this name). He thinks it unlikely because the rash is not localised, but leaves saying he will do a checkup. Time passes. The room is not very clean - Rose points out the dried blood smears on the floor, and we consider that coming to hospital exposes us to MRSA! There is no guest chair for Rose, just a small round backless stool. It is not comfortable. I am in great pain, and no relief has been offered, nor any treatment given. We have been here for about two hours. We are struggling with a crossword, to pass the time somehow. After some time, a jolly looking man comes in and prods heartily at my stomach. We assume he is a doctor, but in France everyone seems to wear white - porters, nurses, paramedics, doctors - so who knows? After a few minutes prodding he pronounces "it is not surgical" and leaves. More time passes, and a nurse comes in with a trolley, asking Rose to wait outside. She takes blood (I helpfully show her where my only accessible vein is). We are unsure why Rose has to wait outside while she takes blood (which is done en-mass at the phlebotomy unit in most hospitals). Afterwards, she tells us that the blood results will take about 1.5 hours, and we should wait on the trolley in the corridor for the results. Rose finds a chair with a back to sit in and we wait. I beg the nurse for pain killers and am given a gram of paracetamol for my woes. Time passes, two hours, more ... finally the doctor returns with some paperwork; a letter for my local GP, and a prescription. It is 10:30pm. He says "it could be three things, an allergy, or blah blah blah", I am too tired to even try to understand. We go through the prescription - it is for antihistamines and paracetamol. I ask for something stronger just in case, and he adds a drug called Lyrica. "Only take it if the paracetamol does not work". We ask him to repeat the instructions for the other paperwork a couple of times, eventually give up and leave, understanding at least that we must go to a doctor on Monday. We just want to know where the all-night pharmacy is - "go to the police" says the doctor, they have a list. We wend our way home via the local constabulary - it is closed of course. We get home about 11:15, and search the Internet for all-night pharmacy without much joy. I ring the largest police station nearby, and they give me a premium rate number to call which eventually connects me to a pharmacy in the next town. We drive over and fill the prescription. I take a gramme of paracetamol and crash out. An hour later I awake in pain, and take a Lyrica tablet. I sleep. 

I slept most of Sunday, taking the antihistamines and paracetamol, but I did not take another Lyrica. Lyrica is a drug called pregabalin, used in the treatment of nervous pain. It turns out prescribing was the one good thing that the A&E doctor did, as it is also used in the treatment of shingles. 

On Monday I had two prongs of attack: take the letter from the A&E doctor to a local doctor to progress in France, and contact my medical team at UCH in the UK to see what they think. In support of the latter we took more pictures and sent them (decorum prevents me from posting, but they show the rash has advanced greatly). I went to see a doctor in a nearby town - my local village doctor is not open on Monday morning. This doctor spoke quite good English, and examined me. He said the rash looked rather like chickenpox (the forerunner of shingles), and thought the back and stomach pain were caused by a pinched nerve. He proposed a spinal Xray and further blood tests for the supposed infection (still as yet unconfirmed).

When I returned home I had email waiting from the UK. They told me to start taking the acicolvir (anti-viral) I had, and to get myself admitted to a hospital ASAP. Clearly this was not going to be possible in France, so I booked the next flight home, and here I am.

I saw three French doctors, and each more or less disregarded the previous one. I explained my medical history to each of them, including the likely relapse of shingles. Each had their own reasons to doubt. I think the third doctor was the best, but then he advised me not to take the pregabalin as it is a very strong drug, whereas my UK doctor told me to take it as it was the best thing for me! However, I do not think this necessarily reflects so badly on these doctors, but rather highlights (yet again) how difficult it is to diagnose illness - the symptoms are just too variable!