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%

Day 55

Week on week I feel quite a bit better 

I have had visitors, more due onThursday

Walking is better, though still slow and a bit painful

Results going well - I will get an update tommorrow 

Some things that have helped me feel better

Chatting to others - concentration levels need work

Reading

Doing useful things around the house

Make drinks, paying bills, etc

And trying to order a few Christmas presents - while trying not to scream too hard at web sites that do not work!! 

If your mouth is furry, try a piece of fresh (not canned) pineapple 

Gout - come off orange juice in any form

I mainly drink water, Ribena, and mixed berry drinks

I have an hour or so sleep during day

Chat to your new bone marrow - now lots of patients do this

Keep warm - have top layers to add and remove

Day 48

My vigor and drive has gone due to lots of minor things in combination - feet, poor walking, do not feel I can do exercises, still eating too little, feel cold, keep bringing stuff up, etc

I guess Lots of folks must go through this phase -  ideas welcome!!!

I need to get out of this and be more active and positive

We will try and keep one room warmer, where I can work

Snacks and a tad more each meal

Start to ask a few friends around for max 30 - 60 minutes on Tuesdays, Thursdays and weekend- others days normally hospital checks / tests

Go down to village and meet people at short events

Have meal out

Have a few friends for drinks - short duration 

Let's see if that helps

Day 47 - lots a small bits of good news

Over the weekend my temperature came under control and then went back to normal and I feel quite a bit better and have been able to be a bit more active around the house.

My legs both have slight swelling, but so far some anti inflammatory cream seems to help

My concentration has improved a bit, although 'not a lot'!

I have too increase my cyclosporine intake - the anti rejection drug, which they monitor once or twice a week

So in general good progress. My legs are limiting my progress as i can only walk slowly in a flat footed manner

Day 44

It's been an up and down week

My blood counts are good, though Hb still lowish 

My first chimerism test came back showing 100% white cells are the donor and 83% red cells donor - av 88% - which is pretty good

My CMV count went to zero - very good

All previous cultures negative 

On the down site my temperature has fluctuating between 37.2 and two bouts of 37.8C

Today it decided to go to 38.0C !!! Which is not good

I think inpart I was because I was wrapped up heavily but they have just taken it again - 37.9C Grrrrrr

So the blood results were fine, blood culture from earlier in week, slight eye issues - so more swabs, urine sample, full body check OK, too late to X-ray chest, a misc background infection test showed a slight level

So

Two different antibiotics prescribed and some eye drop. And then as nothing obvious , besides the temp, I was sent home

Barbara, meantime, had gone down for a set of MRI scans legs, back, neck and head.She gets clasuastraphobia so wasnot looking forward to it- I had hoped to be there for moral support, but no chance  yet

For each test, she was told how long they would - so 'eyes closed and Mississippi 1, Mississippi 2, ... ' Works as a great distraction