Stable and a long haul

My counts have had another minor improvement but we are not expecting it to get much better quickly

However my consultant is very satisfied that we will get out of this. The consultant says that it will be a long haul, which I interpreted probably a couple of months of special treatment with gradual improvements. 

The important Generic stem cells may be helping a lot. Their maximum affect is normally 5 - 9 days, so on Saturday we will check them carefully

I have to drink loads to keep flushing the poisons out of my liver. NOT alchol infotunely - so A dry Christmas for me.

So on Saturday I go in for a couple of the major treatments which I would normally have on Friday. The consultant is fine tuning the drugs every couple of days to balance side effects Vs benefit Vs impact on other drugs - so it will be changing

We are continuing to reduce the steroids slowly, as I have been taking it for too long because of its negative effects. 

On third January I have the second dose of the Generic stem cells, after which they can decide if I need the treatment in Kings

I still feel well in my self but the family is very tired and we are looking forward to a few days of gentle enjoyment over Chritmas with just Rosalind and the children and the two of us.

The children have just put out the reindeer food and started hanging up stockings and pillow cases

So have a very Happy Christmas as I am sure we will

Best wishes 

Some better news again

Just got main results from today

Much better news

Bil 155 down a bit more

Alt 1252 down from a high of ~ 2300!

Platelets that were affected are picking up

Lots of smiles from Consultants

I have to come in for ongoing intravenous stuff on Wednesday and Saturday, then M W F pattern

For now I do not need to come in on Tuesday or Thursday 

The special stem cells may well be doing me good. Another bag is ordered for first week in Jan 2015

I am still acute GVH, but a lot less

Thanks for all the support

Richard

My numbers improve

Some good news

The two important liver count improved by over 15%

So GREAT😀

Home tonight

No more hospital until Monday

The Music

A bit of good cheer

What a lovely surprise

After yesterday's horrid photos of my yellow eyes, hopefully something more
pleasing!!
This evening in the ward we were entertained by carol singers - a real
treat. They gave permission to put it on the BLOG. The patients stuck in
high intensity cells loved it.

Today I have just been monitored and all the usual tablets, and intravenous
stuff. They have lowering my dose of steroids, and of a couple of other
things. Counts are stable or a bit down in last two days

The special stem cells they gave me yesterday will take 4 to 7 days to
determine whether doing a good thing - Yep Christmas day when everywhere is
short staffed
I am lined up for a second dose start January - with a long shot date of
between Christmas and New Year  - so that if it is working well they will
hit it again. Normal protocol, but delayed a week.
I will not be going to Kings, should I need to, until the new year. But they
are all set to receive if needed
Next step is to get me off intravenous steroids tomorrow, check out levels
of other drugs and is charge me home tomorrow evening. I will then get the
weekend off, self-medicating and testing.

Next week I will probably have to go in for tests and some of the week time
intrusiveness stuff  - but that is no problem - a three hours per day and I
should be able to drive myself in and back

Pippin my 10 month old  sheep dog is going mad at home without exercise -
so I hope to take both dogs out and give them a good run each day and work
the sheep. Josh, our top dog is just looking sad. Anyway home for the weekend

Quick update

I am in Derriford and just have 90 minutes or so of drips etc today and tomorrow- monitoring and then see about the Kings blood treatment 

The liver is now causing my eyes to go yellow and skin bronzed

So, as I feel just fine, I am going to get my laptop all working nicely, take a special backup, and then try and put a new fast disk drive in it. I have had the laptop for several years and it makes sense to do cheap upgrade now and buy a new one in say a year when Windows 10 has settled down, and the touch screen laptops have moved on a bit

So the picture my laptop doing backups etc to two external drives

Next phase GVH lowering campaign happening now

I am being admitted into Derriford for the special "knock down the GVH" - (hopefully) stem cell treatment, which they will start tomorrow and Wednesday

If that goes well I will be down in Kings in the next few days for the treatment of my blood with high intensity uv light, which should be complimentary

To prove they are serious, (or just to annoy me 😊) they have just taken a whole lot of extra blood samples (13 sample bottles !) to send to Kings. And this is after 4 bottles this morning for local use - so that will keep my ferritin level nice and low

So I guess they are serious about me being down there soon

From your friendly reporter at Derriford hospital, Devon, in the United Kingdom

Next Stage to get on top of this pesky GVH

The steroids are not working as well as they might have been as the were started days late at too low a dose
I have been on max dose for 10 days - after two or three more they will have to reduce the dose as it can have adverse effects

Two other things are being used to calm down the attacking cells from my donor. This combination seems to have stabilised things, but no improvement. (Ie the nasty big weekly jab, and some antfungal treatment three times a week

My liver and other system were scanned to today - no apparent physical damage to any organs

I feel very well besides being tried for lack of sleep due to the steroids

Over the weekend the doctors tracked down a coupe of GVH leaders. They advise two things

1. a special T cell thing which is being couriered up from London to Plymouth for Wednesday morning. I go in tomorrow to expect to be an inpatient for a few days to have this treatment and be monitored

However
2. There is  blood irradiation treatment which the all want me to get on. This may be available widely in a year, but there are only 4 centres where it is now
 - Birmingham  - the only guy that works it is away for 2 weeks
 - Bristol - happy to help, but requires permissions and it will take a while - maybe two weeks
 - Nottingham - not contacted
 - Kings. My doctors rang Kings and talked to a fried who remembers me whe I was at his clinic several times. They have a machine, and are willing to use it on me this week if schedulable, and sort out paper work funding later.
So I may, instead of being admitted locally, be going down to London tomorrow after noon and admitted for both treatments (or later in the week) and they will take over from Plymouth

I should know whihc way by mid morning

Its all happeneing - quite exciting really. Bit of a logistics nightmare

Luckly one son and Rosalind will take it in turns to look after the house. We just about have the farm covered

My other son will put us up in London, and help down there.

Officially acute GVF now

The results today went back up  to the plateau it had got to on Sunday. So the consultant wants to progress to treat it with a plan C as well as the plan A (steroids) and B (the big nasty jab once a week - entanercipt - a cytokine blocker that stops the donors cells attacking my liver so hard)

There are lots of alternative ways of treating acute and chronic GVF, but hardly any world wide better on when they work and do not, effects etc. I am now on the research programme😉

The plan

1. They had lowered the steroid dose, from high to a bit lower to wean me off it. Instead they will go back to full dose for another few days, as I seem to cope well with it

2. The entanercipt is due again on Saturday. That will be brought forward a day

These actions might have the desired result

3. Meanwhile they are looking at C This could be filtering my blood and irradiating it, which will remove other donor cells physically which are currently harming me. This is additive so should help. Unfortunately this has to be done in Birmingham, so they are trying to set that up for mid next week. This is not on NHS unless I was chronic- but should not cost too much as its only a day case half day treatment 

Meanwhile some CMV and other viruses have reared their heads, so medication may be added to sort them out - just like after my original transplant- been there done that got the Tshirt. 

Anyway I am still feeling well which is a great sign, and we are going out to dinner with friends tonight

Officially acute GVF now

The results today went back up  to the plateau it had got to on Sunday. So the consultant wants to progress to treat it with a plan C as well as the plan A (steroids) and B (the big nasty jab once a week - entanercipt - a cytokine blocker that stops the donors cells attacking my liver so hard)

There are lots of alternative ways of treating acute and chronic GVF, but hardly any world wide better on when they work and do not, effects etc. I am now on the research programme😉

The plan

1. They had lowered the steroid dose, from high to a bit lower to wean me off it. Instead they will go back to full dose for another few days, as I seem to cope well with it

2. The entanercipt is due again on Saturday. That will be brought forward a day

These actions might have the desired result

3. Meanwhile they are looking at C This could be filtering my blood and irradiating it, which will remove other donor cells physically which are currently harming me. This is additive so should help. Unfortunately this has to be done in Birmingham, so they are trying to set that up for mid next week. This is not on NHS unless I was chronic- but should not cost too much as its only a day case half day treatment 

Meanwhile some CMV and other viruses have reared their heads, so medication may be added to sort them out - just like after my original transplant- been there done that got the Tshirt. 

Anyway I am still feeling well which is a great sign, and we are going out to dinner with friends tonight

Going home again

Well at last the liver results have flattened out and gone down 5 or 10%.

So the doctors are happy that the special horrid injection they gave me for tackling the GVH disease that was not reacting well to the steroids is doing its job.

And the rash is still fading. Besides tired from steroid endured lack of sleep I feel fine. Looking forward to fresh food, my own bed and family. All the children will be here later in the week as it happens, so that is something nice to look forward to

I will now be able to go to a Christmas dinner party on Wednesday evening, which we have been looking forward to.

Mind you it is not over yet. I continue as a day case each day, including the weekends, for tests, infusions of steroids, some other anti-fungal intravenous drip, and of course another of those big doses of anti GVH stuff on Friday

I will be reviewed each day when the liver results are back - so they can react if things go pare shaped again 

All packed to go home

Well back into hospital as an inpatient for a few day

The good news is free board and lodging, and time to redesign the Parish website

The bad news is lots of tests, changes in medication, boredom etc

The key liver test result went worse again, and the skin biopsy of my rash proved I have GVH disease 

Unfortunately, as my symptoms were atypical and the three consultants here not seen them like this, so recovery treatment was delayed by two or three weeks beyond ideal

So it's a bit more serious

They will do liver biopsy on Monday if necessary, and on to plan b or c, if my results have not improved by then

The daft thing is, I actually feel feel

Wrong way

Today my liver test results went the wrong way, so they have doubled the dose of ciclosporin to suppress the donor T cell attack 

More tests and steroids tommorow 

Mind you I feel well in myself, slept better last night and delivered a rare breed ram to some sheep of a friend of ours

Steroids seem to be working

I'm After two full days of intravenous steroids the higher liver readings have come down by 20%. A long way to go but it's in the right direction. The other two readings are a bit better.

After a week they will gradually wean me off the heavy duty stuff. Meanwhile they are monitoring for all the post transplant issues again eg CMV virus and putting me on other drugs that I was on at the time.

I feel fine, other than the steroids stop you sleeping and I have only had a couple of hours sleep each night. Meanwhile I have to keep away from snotty nosed kids, mucky farm work, no alcohol and nothing to make my liver work any harder.  Apart from that I can do most anything - so we are going out for a meal tonight with some friends

This is Bittaford railway bridge last night nearby, designed by Brunel

Well here we go with intravenous steroids

The final liver test was worse, so I am going to get daily intravenous steroids and tests, plus antifungal etc to really get it under control

Normally they would admit me, but I am happy to do it as an outpatient which saves HHS money and my boredom😉

A bit of GVH - graft versus host desease

I have had a rash and mouth ulcers  for a month, which was probably partly down to a virus. But now my liver has also been effected and they know I have GVH

The rash is atypical for GVH, which is why it was harder to diagnose 

This is basically my donor's top of T cells attacking my liver. The level is high but manageable 

They are treating me with oral steroids - 16 a day - which is helping a bit. The rash is much better but the liver only slightly better. I am waiting results to see if they need to put me on intravenous steroids to knock it on the head

The worst case scenario is my donor knocking out my liver. But they are in control ☺️

Good news on the topup I had

The virus or what ever I have had for 4 weeks is still causing problems. The mouth ulcers have gone, the cough has improved, throat still raw from coughing, and I am starting to feel better. However I have lost 12 lbs in weight in last few weeks and the rash, which we thought was a reaction to medication I have now been off for 10 days, suddenly got worse over night. It has spread to the whole of my trunk, and now arms, underarms and the first signs on my legs.

So I popped into hospital and the Dr put me on strong Aciclovir in case it is shingles or similar- but frankly neither he nor the other two doctors know exactly what it is.

On the very good side, the latest chimerism test has showed that the topup has done very well and the percentage of the key cells that was at only 55% has gone up to the 85% donor! 😊

If it keeps going up I may not need another topup, but if it does not get to >95% or so I may need one or more topups.

Great news for Rosalind

Four years after her transplant, and a year after her partner left and I had my transplant, a bit of excellent news

She has just got a half time teaching post to cover for maternity leave at a nearby secondary school. This will be for 6 months to a year.

She will be teaching art, probably to 10 to 13 year olds

She is absolutely thrilled and we are very proud. 

This is a fantastic achievement by the National Health Service who has helped her back from the brink to being a significant contributor to society again

Not much better

After two weeks my throat is still full of ulcers. Other symptoms being persistent cough, cold, and rash on trunk as side effect to antifungal treatment. Then tiredness because of all of that and again side effect of antihistamines 

Still I am feeling a bit better

The consultant thinks it is viral - so just tough it out

Fourth birthday for Rosalind

 Four years ago today Rosalind had her transplant in Kings Hospital London. She is very well these days, although has lost some some hair which is either stress related or to do with hormones that she is on. It is a year since her partner has left her and the children, and the last bits of sorting that out were in recent weeks

She is hoping that she might get a part time teaching job, to go with the art workshops etc that she runs - she loves teaching, but could never manage full time again.

I feel a bit rubbish, having got a sore throat, cold, fungal attack in the mouth, ulcers and the odd rash. It could be graft Vs host or the other way around I can never remember which is which - they are doing tests. 

My chimerism has not changed after the stem cell topup, so I expect they will want to do more. It is the first real set back in 10 months, so I cannot complain, and it's not too bad eg I cannot smile or eat other than soft food

The Autumn ( that is "fall" for my American friends) has been lovely