Tuesday 30 December 2014

A happy and healthy New Year to you all

This picture helps show that life is really worth living and we are looking forward to the new  year and getting over this current hiccup

My two sheep dog had a good run, helped by my grandson

Saturday 27 December 2014

Results have got better again

My liver has improved improved 

My liver counts have improved again, and the yellowness in the eyes decreased again. 
The ALT liver count has gone done to 936 - 20% or so down again (from the highest it got to a week ago of ~ 2400)
The BIL has gone to 139 down quite a bit since last time.

So the primary objective is slowly being achieved
Of course nothing is simple. My kidneys are taking a hit trying their best to clear toxins

So the consultants have switched me off  Valgancivovir and put me on Aciclovir  to protect the kidneys. And various minor tweaks in dosages of other things

Shortly, some of the important drugs will come to the end of the treatment

I just took the dogs for a workout with a bunch of Rams - lovely weather





Thursday 25 December 2014

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 

Monday 22 December 2014

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


Friday 19 December 2014

Thursday 18 December 2014

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


Wednesday 17 December 2014

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

Tuesday 16 December 2014

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

Monday 15 December 2014

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.

Wednesday 10 December 2014

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


Tuesday 9 December 2014

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

Friday 5 December 2014

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

Thursday 4 December 2014

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

Wednesday 3 December 2014

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

Monday 1 December 2014

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 ☺️

Saturday 22 November 2014

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.

Tuesday 18 November 2014

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

Tuesday 11 November 2014

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

Tuesday 4 November 2014

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

Thursday 16 October 2014

Royal family

In one minor sense I am a bit like the Royal family. Today is the first anniversary of my transplant, and given the enormity of the change of getting someone else's bone marrow and thus blood, blood type, etc. So I , and other transplant patients, think of it as a second and very significant birthday

I still may need a few topups. In a few weeks I will get my childhood vaccinations

Meanwhile I am doing more and more on the farm

Saturday 13 September 2014

First top up was an anti-climax

My donor very kindly donated a goodly amount of T cells so that I can have many topups if I need them. He did this on Thursday some where in London, which enabled me to have 20 mls yesterday afternoon. It only took 5 minutes, but they did have to give me a physical check up and tests my blood and especially liver first 

Just to make me feel better, one of the doctors has to tell me all about the risks. One is that I might get a reaction such as a rash or really bad diarrhoea from graft Vs host ( or the other way around)

The other is my blood counts might crash if the donor cells take over from too many of my original cells too quickly. 

Apart from that it went very smoothly. It was great chatting to the nurses and doctors again, many of whom I had not really seen since my transplant 11 months ago

On Wednsday I have a quick clinic to check for possible reaction

A couple of nights ago we went to the Rock Fish restaurant in Dartmouth and had a lovely meal of very fresh fish

Ros is doing very well, with both her children at secondary school now

Thursday 21 August 2014

First stem cell top up planned

I had clinic yesterday and we found that my chimerism for T cells had gone down to 56%. Luckily my donor has agreed to provide more cells, so these will be harvested on 11th Sept before a fresh lot is given me on the 12th. This will be a small amount, and the rest will be put on ice for future use. Rosalind had 5 or 6 top ups.

The process is much easier for the donor, as we only need T cells which he will have lots of and can be harvested in minutes. And I need no preliminary chemo or anything - it is just like a small blood transfusion and should take 20 minutes or so.

Apart from that we are both feeling reasonably well

A friend, who is on azacitadine and doing well, went out for fish and chips at a local restaurant the other day. It was a beautiful location.
.
Tomorrow the family is all going to the New Forest for a week's holiday.

Wednesday 16 July 2014

Nine months on

I had a clinic today. I feel great, although get tired from things like having 40 or so school children from an inner city area on a trip around the farm for 5 hours. That visit was a real worry when we found out that many of the children would not get a meal when they get home, or would have to cook for their family.

My blood results were normal, ferritin excellent, virusus at a negligible level. 

However my chimerism percentage for CD3 has not gone up, and has gone down slightly to 70%. Because it has not gone up the consultants have decided to ask my donor to have more stem cells harvested and put in the freezer. 

The consultant said that often that acts as a catalyst for the percentage just going up without treatment. Otherwise after a year they would hope to give me one or more topups, like Rosalind had. They did not mention what would happen if no stem cells were forth-coming for what ever reason

Rosalind is very well and looking forward to going to a festival with her children this weekend

Monday 14 July 2014

My first calving since being attacked

You might remember that 10 months ago I was attacked by an Irish Moiled cow who had just calved. This was a few weeks before my transplant. She was sent off to be bagged up for the freezer some time ago.

Today I went into a field to check on a newly born calf from another Irish Moiled cow. I went in with one of my staff, and an actual staff - just in case. But she happily let us spray the calf's umbilical cord and check its gender - a strong bull calf.

So this was psycholical milestone for me

Roz and I are both well, but a bit tired as we both had busy days last week and then ran a stall at the local village fair.

Tuesday 17 June 2014

Helping Each Other

One thing that has helped me a lot during the past few years is getting advice and guidance from other patients, and frankly just sharing war stories. Often this has been when I was the patient first to go through some treatment, such as the use of Azacitadine, and others have asked me what was involved or followed this BLOG.
Pete on a slip way


Richard with the Tamar Bridge behind
Pete has become a close friend, after sitting next to him and his lovely wife in waiting rooms etc. He has undergone similar treatment and is doing very well I am pleased to say. Pete has
just completed his 21st session of Azacitadine - every 5 weeks and for five days, and this has gone on for just over 2 years now.  So we both bare witness that Azacitadine can really work for some people.

We meet up away from the Hospital to shoot the breeze and visit different places in South Devon. A few days ago went to a very nice pub next to the Tamar bridge between Devon and Cornwall - the Royal Albert Bridge Inn. We had great fish and chips and a good natter
I do recommend that patients make such friends as the mutual help can be very rewarding

Wednesday 4 June 2014

Great test results

I went to the clinic today and got some good test results following extensive blood tests last week

All my normal blood results were fine. The viruses I had earlier are staying away and of most importance my CD3 result was 76% which is up from the mid 60s five weeks ago. This means that 76% of my CD3 is from my donor. It should be 95%+

My whole blood value is 88% (lowered by the CD3), while my Neutrophil count. Has gone up to 100% donor, which is great

The consultant say that at least it is stable and at best improving a bit. If it does not get into the high 90s they will still want to give me a top up of stem cells from my donor, but ideally not until after 12 months to minimise side effects.

I am now off all medication except for penicillin tablets twice a day for the rest of my life, and an allopurinol tablet to stop me catching gout again. Clinics frequency has again changed from 5 weekly to once very six weeks

Coming off the anti viral drug Aciclovir may have a side effect of catching shingles. This might explain why Rosalind caught shingles a couple of weeks after she came off Aciclovir

Tommorrow I achieve another transplant objective, which was to replace my car that I have had for five years. Same model, different colour, and less miles per gallon, and a few more goodies eg blind spot car detector

My friend Pete who is on Azacitidine like I was is doing really well after many many months, so I am very pleased

Sunday 25 May 2014

Another post transplant objective met

I set myself an objective or target of going to the three day Devon County Show and have achieved it. We not only went, but manned the Rare Breed Survival Trust stand and trained up and took 10 sheep which we showed on the Primitive Rare Breed sheep class. I am delighted to say we won most classes, along with Champion and Reserve Champion sheep
So if you are going through a difficult path, set your own objectives and then strive to achieve them. It's amazing how it helps

Notice my hair has returned to an acceptable level

The event exhausted me, but Hay Ho, we did it

Wednesday 7 May 2014

Nearly 7 months and doing well

I have just had clinic and my chimerism is a bit better 67% donor up from 61% a month ago. 

I have been told that I can just use up the remaining pills of three different types and then stop having them all together. I will remain on an antibiotic and anti gout tablet for as long as I live

I will now switch to four weekly clinics from three, and soon will be on Friday clinics which Rosalind is already on, for less acute cases 

Yesterday we started training 8 sheep to show at the Devon county show. Two of the rams are so fiesty that I will not be able to control them until one of my staff had 'broken' them - which is basically just a matter of being stronger than they are when they buck. One of my post transplant objectives was to show at the Devon County show. I will let you know how I get on
Here is one of the rams being selected and having his hooves trimmed

Monday 21 April 2014

Six months post Transplant milestone


Six months Post transplant and still feeling well, although very tired as we have just taken 20 days to lamb 67 ewes. Lambing is a 7x24 operation unless you have enough ewes to warrant hiring folks to run a shift system

When in for my transplant, like many other patients, I set myself various goals. Christmas, survive 90 days, a replacement car, were some. I have ordered the car!!

And a new puppy called Pippin, seen here with our nine year old senior sheep dog Josh in the All Terrain Vehicle we need for our steep hills

I am waiting to see if the virus has gone away completely, and to check my chimerism. Roz is fine

Monday 7 April 2014

Well our holiday is booked

We have booked a week away for the whole family in August. A self catering cottage in the New Forest, Hampshire - with lots to do near by.

My last blood test shows that £&@#%^ CMV virus has come back again, so I have to have a repeat blood test tommorrow and probably I will have to go back on the relevant drugs - what a pain

Friday 28 March 2014

Good news, and one less good

Roz is looking good and her clinic today was positive. She is having a chimerism test as normal to prove all is in correct balance ie close to 100% of all cells from donor. She only goes to clinic every three months these days.

I had my clinic on Wednesday. I look well, feel well and blood tests were good. However my last chimerism tests showed showed on one blood type that the % of donor had gone down from 69% to 61% which is less good than going the other way. This could be error levels, minor glitch or anything else. My consultant is not worried, and we agreed that i was OK enough to buy some new heifer cows!!

I will test in a few weeks. If the counts have gone down further they will probably ask my donor for more stem cells for one or more top-ups. This will be frozen until needed.

So overall, its looking good. We are starting to think about a family holiday in the summer.

Tuesday 11 March 2014

Hair today

Over 4 months after my transplant my hair is coming back really well. With the warmer weather I can go out without a hat now.


We are opening our second self catering cottage again, as we feel we can cope again. We are also entering sheep to show at the Devon County Show, which is in May.

However I still get tired very quickly when doing physical work, so I do desk / website work to make up my day.

On Saturday we got a new puppy, Pippin, to replace my senior sheep dog who died recently 




Thursday 6 March 2014

Consultants very pleased with my progress

The top consultant spotted me and said "Great to see you Richard. How are you?".
I responded "Very well", to which she said "Correct answer" and wandered off with a big smile on her face.
The registrar checked me out and said I was doing very well. Results


  • Neutrophils 3.8 which is excellent
  • Haemoglobin 132 which has gone up to this very acceptable level from110 three weeks ago

So I stay on three weekly check-ups. Meanwhile she gave me some cream for dry skin and OK'd me to go to the dentist for a check up - which they do not normally allow for many more months

Monday 3 March 2014

Birthday milestone

There was a time when I was not sure if I would live to today - my 68th birthday

I feel very well, and am doing more each day. On the farm I can now check stock, feed up the cattle, use the digger etc. But I still get tired after an hour or so

We re-opened one holiday cottage a few weeks ago, and now we have decided to open the other one after Easter

Clinic for me on Wednesday following three weeks without having to attend hospital

Rosalind is very well, and coming to help get the cottages ready for guests

Wednesday 12 February 2014

Some good news at my clinic

All normal blood results are normal, the CMV virus has stayed away and the consultant hopes that my new immune system will cope with it in the future.

Even better news is that my chimerism test results came back from two weeks ago. It showed 69% of my CD3 (a critical part of my blood) is from my donor, which has improved from 64% a few weeks ago. All my other blood types are close to 100% from my donor.

So my clinics have been spaced out to once every three weeks, instead of every fortnight.

So it's been a good day as far as my transplant is concerned.

Meanwhile my brother in law had a heart attack yesterday. The emergency services were fantastic and he is already out of danger. My best wishes go out to him

Sunday 2 February 2014

109 days and some better news

The CMV virus has gone away again for a while, so I  hoping to come off the anti viral drug on Tuesday after tests tommorrow

My strength is coming back slowly, so that I can do a few things around the farm now eg put up a race with hurdles for scanning the pregnant ewes, or push the silage up for the cattle.

I had to drive for 2 1/2 hours yesterday to pick up my dog after an operation for an infection in his leg. He is recovering well


Sunday 26 January 2014

Day 102 - a nice number

Passing the 100 days post transplant is another key milestone
I feel OK but a bit weak. The CMV virus has come back and the treatment inhibits bone marrow production which probably explains the weakness. More tests on Monday
Rosalind is well, and we all went to The Hobbit part 2 in Plymouth

Sunday 19 January 2014

Day 91 post transplant

Summary - all going well
I had a clinic on Wednesday and got some good news
I have had a resurgence of the CMV virus, but it has gone away again.
Cytomegalovirus (CMV) is a member of the herpesvirus family. Infection is worldwide and usually asymptomatic. Until your immune system gets on top of things CMV can be dangerous to post transplant patients.

My latest chimerism test was good but we need the % of CV3 result needs to improve. Coming off the drugs that were treating CMV will help. It's all a balancing act. If the CV3 gets poor ie a low percentage of donor cells to do with nymphocytes, we would have to ask my donor for a top up like Rosalind had.

Rosalind is doing well. We have been working on her web site www.allfiredup-devon.co.uk 

Friday 3 January 2014

Clinic update

Yesterday at clinic the consultant was very pleased with my progress 

Last time she took me off various drugs, yesterday she took me off even more. This will give my new bone marrow every chance to be most efficient , as many of the drugs inhibit the bone marrow production, but are essential to keep you alive in the early days post transplant 

The next thing to watch out for is rashes or other gentle or severe signs of graft Vs host fighting as the new cells try and mop up any left over cells. A smallish reaction would be good

Ros is slowly recovering from her shingles from before Christmas - luckily she had gone past the infectious stage before they and the rest of the family came for Christmas and New Year. We had a lovely time

The weather now is strong winds blue sky and sunlight. Half an hour ago I moved some rams to new pastures and the sky went black, thunder, lightening, rain, hail and strong winds. 

Wednesday 1 January 2014

New Years Day 2014

Another minor milestone - all is well

I wish everyone a Happy and Healthy New Year