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

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

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

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

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 

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. 

New Years Day 2014

Another minor milestone - all is well

I wish everyone a Happy and Healthy New Year

Day 63 my line comes out!

After 70 days my Hickman line was removed this morning

I was very nervous and apprehensive 

Eg how does it happen?

How do the holes heal up?

Will it hurt when they pull it out?

In fact it was no real problem

It took around an hour. Lots of prodding but all under local anesthesia 

They have to find a cusp in the line that holds it in place. Then basically cut all the edges off the cusp, then the line justs slides out. The Registrar held his hand over the place, and within a minute it had sealed up - like magic

A few stitches and 'job done'

Day 56 post bone marrow transplant

A couple of milestones 

1. Wearing proper shoes and thereby being able to walk better

2. I drove us into the hospital. Barbara drove us back

My results were very good, except my red blood count is down a bit. They will probably give my some blood next week

I am moving to weekly tests and clinics,, as opposed to 2 or 3 times a week

Roz had a three monthly review. She is doing really well, so is being put onto six monthly reviews. She just needs to put on a bit of weight, the loss being from stress with becoming a single parent family after her partner left. These traumatic illnesses can bring on break ups , where things are not 100%