Tuesday, 16 December 2014

Update on cardioversion- an answer to prayer?

Well well well.

In yesterday's post I described the events leading up to today's booked cardioversion.

I'd had an ECG last Tuesday and the nurse and I examined it closely and sure enough the atrial fibrillation was there for all to see.

I had another mini ecg done on Sunday before undergoing an MRI scan that lasted about 45 minutes and involved a lot of noise and thumping of my chest as my blood flow was measured in order to be able to synchronise the scan with the blood flow and therefore get a clear image of the arteries.

I had a blood test yesterday that confirmed it was all systems go, so I followed the instructions for nil by mouth after midnight and went to bed around 10.00.

I woke up at 3.30. Read a book until 6.00 when my alarm went off then took my morning pills had a shower and was ready in good time to set off for the hospital.

Sue dropped me off and I arrived at reception, settled into a corner and continued with the book. Eventually I was collected and taken to my cubicle for the morning where I was asked to strip to the waist ready for the treatment. A nurse attached tabs to my chest and ankles and connected the ecg machine. She ran the test, looked at the trace and then after a minute ran the test again. She said the paper hadn't fed correctly the first time.

I went back to my book for a few minutes. The Ward Matron stopped at the foot of the bed. She was to fill out the consent form and obtain my signature. We worked through the form which is several pages long. Then she picked up the ECG printout...

And said "This is a normal heart rhythm. There's no way we will do a cardioversion on this"

She showed me the printout. I showed her the printout from September. My printout clearly showed an atrial fibrillation- and I know that last week's printout also showed it because the nurse and I compared the printouts. But today's trace showed a normal rhythm.

Everyone was smiling. I had a cup of tea and a slice of toast while other patients were one by one wheeled into the treatment room, emerging twenty minutes or so later slowly waking up from the anaesthetic.

Eventually my copy of the letter to my GP arrived and I was free to leave. I walked down to the out-patient's entrance and waited for Sue to come and collect me.

I'm a Christian who's not attended church for many years. I find it hard to pray- in fact- I don't pray. But I know that friends all over the world have been praying for me. Even my pharmacist- a Hindi (I think) told Sue that she'd been praying.

Were their prayers answered? Was this a miracle? Divine intervention?

What happened between last Tuesday and today? I've been racking my brain. One possible cause might have been the hammering my chest received during the MRI scan. Has this happened before?

I don't know. Maybe I'll never know. I feel a bit like the blind man healed by Jesus (John 9:25) who said- ""All I know is this: once I was blind and now I can see."

A big thank you to anyone who prayed for me. Be encouraged.

I have an appointment with the specialist in around four months, with a week long programme of ecg tests beforehand

Monday, 15 December 2014

All change again. Christmas 2014

I've been reading back through my posts and it seems that I've had nothing to report for several years.

I've been in remission from CLL since 2010, and as long as I don't get tired or stressed my Chrohns is under control. The cause of the cough that I've been complaining about on and off for years  has also been identified. I saw an Ear Nose & Throat specialist and had a X-ray following a drink containing barium which confirmed that I didn't have pouches in my gullet and confirmed that acid reflux was the cause. Taking a swig of gaviscon fluid before going to bed stopped the acid from burning my gullet and causing the irritation that fed the cough. As for the dizziness I used to feel when coughing hard- I'll come on to that in a minute.

Some time ago I discovered the benefits of Vocalzone lozenges. Singers like Tom Jones swear by them, and I find they stop me getting hoarse and, as long as I warm my voice up, I can sing all night. They have another benefit as well. I've been keeping a lozenge in my mouth when going to sleep and I can't explain why, but this has worked better than the gaviscon and I've not woken up with a sore throat as a result of acid reflux. I don't know why it works , but it does for me.

I've been attending the skin clinic at the hospital for a few years. I used to have an unsightly skin condition on my right index finger. I've had it for at least 30 years but in recent years it has started to spread. During cold weather the skin used to crack open and bleed and my GP got me an appointment. They took a biopsy and diagnosed Bowen's Disease, a pre-cancerous sking disease. A couple of years ago they treated it with Phototherapy which involved smearing the skin with a drug in a greasy cream. This was left for a couple of hours to soak into the skin and then a bright red light was shone onto the skin. The active ingredient would only be absorbed by the diseased skin cells and the light then reacted with the drug and burnt the diseased skin away. I had to wear very dark glasses to protect my eyes, and it was strange to have the feeling that your finger was being held in a flame while the skin around felt normal. I've had this operation repeated since and earlier this year the doctor from the diseased area using liquid nitrogen (the same technique he used to treat the crop of warts that appeared while my immune sytsem was low). It's a matter of containing the disease and treating it every six months or so. As long as the disease doesn't develop into full blown cancerous tumours this should contain it. If it does- then I lose the finger.

For the last year or so my blood pressure reading have been on the high side. I've not been troubled by this, although I do get dizzy when I have a coughing fit and I have to hang on to the furniture, and if I get up too quickly. However, my GP thought it was time they had a look in depth at my blood pressure.

After an enjoyable couple of weeks on holiday in Cornwall where I was able to walk (albeit not very far, and not as far as Sue would like- as she's now started doing 10k walks around local country parks and long distance footpaths), I returned home and off to the surgery to be fitted with a 24 hour Blood pressure monitor. I don't know anyone who's been able to keep one on for longer than a few hours. Mine lasted 5 hours before I tore the cursed thing off.

A week later my GP prescribed a course of drugs designed to reduce my blood pressure. When I got home I carefully read the instructions and it was with some misgivings started the course. Within a day I was feeling ill and a few days afterward managed to get in to see my GP as I felt so ill. He took my blood pressure and listened to my heart and summoned an ambulance.

A few minutes later I was on a trolley in A&E wired up to an ECG machine and heart monitor. My heartbeat was going crazy. They managed to slow it down using betablockers and they kept me in overnight for observation.

And so the next stage of my life has begun. I have been diagnosed with atrial fibrillation, an irregulat heartbeat. The treatment involves taking Warfarin each day, the exact dose based on the results of  a blood test every week or two. I have had to cut out certain foods, but as I'm not a foodie I can live with that.

The downside is that the stress has aggravated my Crohns which leaves me doubled up in agony when it strikes. I spent a miserable few days on holiday with a mouthful of thrush and ulcers and without any Nystan to combat it. The current problem is that Nystan reacts with the warfarin so is on the banned list, along with certain painkillers, so I've had to grin and bear it.

The good news is that there was a cancellation for the cardioversion treatment and I've been bumped up the queue. All being well, I will have had the treatment and on the road to recovery in the next day or so.

And after that? Who knows.

Monday, 10 March 2014

Update March 2014

The enduring legacy of my CLL is that my immune system was shot to pieces. it's over three years since my last bout of chemo now and I would have hoped that I'd be getting back to normal (whatever that is).

Alas, it seems that I succumb to every little sniffle going around . I had the flu jab last autumn and so I haven't gone down with flu, but when I get a cold of cough, it's as if I had flu.

I'm able to manage my health by taking it easy as much as possible, but there are time when I get tired or stressed and that's when I get hit. My Crohn's kicks in, and although it's not as bad as ulcerative colitis, the stomach pains and flatulence keep me on my toes. I can't stray far from a WC- just in case it's more than wind.

I don't know if you've heard about Spoon Theory but here's a link


Some days I don't have enough spoons to get out of bed. That's today. I know exactly what brought it on and I'm doing all I can to manage it. You see, since I had the all clear I've been making up lost time by recording albums of my songs. One album in the future may be released posthumously- but hopefully not for a while yet. This week I've been playing some local shows and going on local radio to promote my album "Hard Times" and it's amazing how just sing and talking takes it out of me.

On Saturday we went to Corby and we were interviewed and we played three songs. By the time I got back I was out of spoons. On Sunday I rested all day ready for our feature set at a pub in Moulton. We went down really well, but today- yes you guessed, I'm totally wiped out. I've been in bed sleeping most of the day. I'm going to have to do the same again tomorrow ready for another show on Wednesday (assuming I still have a voice, because this head cold is a killer)
Then the same on Thursday before a trip over to Cambridge to play a couple of songs at the Folk Club. I have another day to rest up on Saturday before rounding off this week of playing with a show in Corby on Sunday night.
A few short years ago I would have laughed at this schedule. Before I was diagnosed we were driving hundreds of miles to perform all over the UK. Alas, those day have gone.

So, what do we do? Sit and mope about all the things we can't do? Or just rejoice that you're still breathing and doing a little- even if you wish you could do more?

If you're interested, here's a link to where you can hear some of my songs and watch some videos.

God bless you

Tuesday, 12 November 2013

Another year on

I've just had my six monthly checkup and there's nothing to report. Dr Lyttleton is happy with my blood results, my weight is stable, my health is generally good, my various conditions are currently behaving themselves. The mild Crohn's is under control with just the occasional twinge. I'm ok as long as I don't get too tired. My gastric reflux ditto. I'm hoping that dosing it with Omeprazole in the mornings and Gaviscon in the evening will prevent a return of the dreaded pharygitis this winter. So far, so good. I'm still working three days a week, and I'm still writing, recording and performing my songs. A recent highlight was an invitation to sing at a festival in Norway. It was very stressful getting the flights organised, but we got there (my son and I)and our music was very well received. Maybe we'll get other invites in the future. One thing is certain, they will need to be less intensive than the hardcore touring I was doing a few years ago, when we travelled miles and played shows every night. I know that would make me ill, and I've had enough of that, thank you very much! So- nothing to report. That's a good thing. For anyone who has been diagnosed with CLL recently, please read the posts back to the beginning. It's amazing what can be done these days.

Friday, 28 September 2012

September update

I've had my six monthly checkup and basically there's nothing to report. My lymphocite (sic) count is 0.9 (whatever that means). When I was diagnosed with CLL in 2009 it was above 30 so that's good. My weight is above 106Kg. 3 years ago it was less than 94. I've just come back from a holiday in Cornwall so some of the weight gain is down to all day breakfasts, Cornish Pasties and Cream Teas (with clotted cream) Life is good.

Friday, 20 July 2012

July update

Hi there, I don't know where the time has flown. I could be said that no news is good news and I have very little to report. I've been able to manage the Crohns and can now recognise the onset of an attack. Tiredness and stress bring it on. The good news is that the diarrhoea has not returned. I've also worked out how to take the daily medicine (Pentasa) without leaving the tiny granules stuck to the glass or in my mouth where they taste..not a bad taste, but not one you'd choose to have in your mouth constantly. The wet summer hasn't helped. A bit of sun can lift one's spirits, and in my case, a prolonged absence can bring on the blues. After a particularly gloomy and tiring/tiresome weekend I rang my GP to ask for a blood test as I was feeling so drained. I wondered if my symptoms had returned. I had the blood test and contacted the Haematology Department at the hospital to ask if they could look at them (as well as my GP). They rang back to say that my blood tests were OK and I had nothing to worry about as far as they were concerned. So, no news really. Life goes on. Roll on summer!

Monday, 19 March 2012

Crohns it is

I received a letter confirming that I do indeed have Crohns disease. I've been prescribed a course of drugs and will see the specialist in three months or so.

So far so good. Except that my symptoms have all but disappeared since the week before my last hospital appointment (about six weeks ago).

I spoke to my GP about this. I still have to take the course. So if my symptoms don't recur (a 50/50 chance)- will that be down to the treatment or chance?
If they do recur- does that mean the treatment isn't working?

Surely I have to be having a flare up when I start treatment in order to prove the treatment works one way or the other?