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

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

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

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.
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Tomorrow the family is all going to the New Forest for a week's holiday.

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

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.

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

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

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

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

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

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

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.

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 

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

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