Sad News

This will be the last post about Richard. 

As readers of this blog will know Richard had been struggling for the last few months with a succession of infections - mostly affecting his lungs. He had always had a weakness in his lungs and a tendency towards bronchitis. In early June he contracted bronchial pneumonia, sadly this was one infection too many.

Although we are deeply saddened by Richard's passing, we are grateful for the five years from diagnosis, which he lived to the full. This is in no small part due to the fantastic teams at Derriford and Kings College Hospital and the support of the MDS UK patients support group.

In particular, the clinical staff at Derriford did a magnificent job of getting all the transplant related problems under control and Richard was looking forward to building his strength up again. He had even bought a new tractor, was planning a family holiday, and was looking forward to meeting his new grandson.

Thanks to the hard work of these dedicated people, Richard was able to see one son married and build an award winning dream home with his wife. He celebrated his grandson passing his first GCSE and his granddaughter passing yet another ballet exam. He visited his other son in Iceland and Estonia where he drank vodka with his son's partner's family. He was able to share his childhood haunts in the Peak District with his family, grandchildren, and extended family and win several more sheep show championships with his wife. Most importantly he was able to see his daughter conquer the same condition and, now healthy, return to teaching. Nearly five years past her own transplant date and three years in remission, she has four hundred budding artists to inspire and is thoroughly enjoying the challenge!

Richard's unflagging determination, positivity, optimism, and hope made all of these treasured moments possible. We had a beautiful service where many friends, colleagues, and family gathered to celebrate his life. We will all miss him dearly.

Life goes on. Richard was a keen supporter of the Barn Owl Trust and he would have been thrilled to discover that five new owlets are flourishing in one of the barns on the farm.

Thank you for reading and good luck in your own journey, Richard's family.

In and out of day case

The place is really nice, but i'd rather not be here 

Today loads of tests, and two or three IV drips, and subcutaneous injections

Luckily they do not need me in tonight for a repeat dose of Ganciclovir - with travel it takes 4 hours

Getting there slowly 

Having various IV drugs over the weekend

I have a series of IV drugs at 8:30 a.m. And 8:30 p.m. Each day over the weekend, including Monday, which is a bank holiday 

To do this I am sat in a lounge in the inpatient ward. 

This is much better than than the day case unit, just because the get on with things without delay

I know virtually all the staff which helps

Cup of tea on its way

Hopefully being discharged today

Monday is a bad day for discharge, mainly to get the medication from the labs and through the paper work

I shall have to come in once a day for an hour or so for an IV drip. And blood tests I guess

The hope is that my morning drips can be done by yet more tablets. 

They are weaning me off steroids, which has stopped me being hyper. I was awful a few weeks ago

Anyway

I can go home during the day today, come back for an evening drip

Then I go back to being a day case patient

Hoorah

Out for a few hours

The treatments have improved for the better

The labs decided the main issue is CMV virus, not Graft Vs Host (GVH)

So I am on Intravenous drips to counter that. Over a few days they expect the bowel to settle down

The fungal infection will gradually come under control with the AmBisome

So I am at home for 6 hours or so. Bit of our own steak for lunch and a sleep in my own bed will be lovely

It's a beautiful sunny day, which helps enormously

So things have taken a turn for the better

CT scan results

I haves nasty fungus on my lungs, which has got to dealt with fast

Intravenous AmBisome

AmBisome (amphotericin B liposomal) is an antifungal medication that fights infections caused by fungus.

AmBisome is used to treat serious, life-threatening fungal infections including leishmaniasis, and a certain form of meningitis in people infected with HIV (human immunodeficiency virus).

Two interesting procedures

The first was a colonoscopy – used to examine your large intestine (colon)
 which basically did not find I had anything seriously wrong other than it is incredibly tender, probably caused by GVH. So no cancerous polyps or anything. Which is good

I also had an MRI SCAN, which is fun technology. I have a chest infection that they wanted data on

Busy day

Another few days

They still have not got to the bottom of this probable GVH in my gut

So loads of tests coming up and a change in drugs

Endoscopy

MMR Scan

Loads of advanced micro biology tests

And change in drug regime

Some a bit experimental

I feel like a lot of a guinea pig

Several things take a while to do, but while in hospital they will happen in a few days as opposed to weeks 

My consultant says she basically wants to get on top of it this week to maybe get my home at end of week

Picture below shows two prunes - one dehydrated and the other re-hydrated

This was a bit like my body felt like after being given a three saline continuously over 20 hours

Quick inpatient stay

I am being admitted for an endoscopy test tommorrow to check out my lower bowel

My liver and kidney, and normal blood results are OK

We just need to sort out what is happening to my bowels

I am at least eating a bit better, and getting to do a few more things

Meanwhile the weather is awful, which when it improves will make everyone feel better

My friend Pete popped around this morning and we had a lovely chat about Parrots, lighthouses and fast cars

GVH in my gut

I have been suffering badly with Kidney and liver problems but they are just about OK now

The problem is GVH graft versus host desease which is giving me terrible diarrohia particularly overnight

I have managed to cope with it and still keep a bit active around the farm and in the house

Barbara has been a star, taking most of the brunt of lambing while running the farm and looking after me

The long weekend is a bit of a pain as it throws plans to change medication and try and get this GVH under control

But it's only a few days to put up with

I would dearly like to get my appetite back for fish and chips and go out with my friend and fellow patient Pete. Perhaps in ten days

We have booked a lovely house for a holiday in Cornwall in August, so I must get better well before that

Our staff our doing a great job running the day to day jobs on the farm

Peacock

One of our randy Peacocks is seen here trying to impress a couple of hens!

New Barn

Today I hope to complete planning permission for a new barn on the farm to hold grain and equipment

We are getting ready for lambing. I am allowed to check them, but not to get my hand up to help a difficult birth😳 Exciting.

The eclipse is in a few minutes. Last time is was fascinating to watch and listen to the reaction of the animals and birds 

I am slowly recovering from two lots of flu and one chest infection 

I can drive again, and walk a bit further. 

My concentration is also improving

And at last, I have the runs under control

So each day sees some improvement 

Still on loads of tablets, and a really cool inhaler for flu

Getting there

I am gradually walking better. The two tight muscles in my left leg are responding to exercise and an infra-red supported massage tool I have

I still get very tired, but I have my appetite back mainly

Today we joined my son for lunch at the Sea Trout restaurant. Tommorow we have lunch with Ros and the kids at a National Trust property

Gradually improving

I have another week of antibiotics to get rid of that persistent lung infection 

Gradually starting to come off tablets and potions. One called Posaconazole is very expensive , so I have been told to keep it safe in case needed in the future

I now need to build up my strength and put back on some weight. So a little bit of pushing myself

 I have had difficulty eating enough, but am getting better. Tonight we are having a lovely mixed cheese vegetarian lasagne

Food and walking

Last week I had the runs badly, interspersed by sickness, probably induced by the medication. I lost a lot of wieght and have gradually been weaning myself back onto food

The muscles in one leg became knotted, which gave me quite a limp when walking. The muscles are a lot better today, following eating eggs, and the use of an exercise bike

Après 'flu

I was finally allowed home on 25th January. The medical and nursing staff did a terrific job keeping me alive because I was admitted with vicious diarrhoea, but not satisfied with that I managed to develop parainfluenza and full blown type A 'flu. Just as they were hoping they could send me home I went a bit 'doolally' so I lots more tests which showed some 'flu particles had got into the cerebrospinal fluid - not a good idea!

Meantime the graft versus host disease has be brought nicely under control although I will have to keep on with all the medication for some time.

It will take a while to build up my strength again. First trip back to the day care ward I was pushed in in a wheelchair (well pulled actually) by Barbara; next visit I walked slowly with a stick and a shoulder to lean on; today I got there under my own steam. I have been told I have to get back in shape by April ready for lambing.

Back in as an Inpatient

The good news

My liver and kidneys are stable / getting a tad better each day. So the underlying trend is slowly the GVH issues are coming under control. A long way still to go

The less good news 

Various things in my blood ( Sodium, magnesium etc) need to be monitored, my body has taken quite a bashing so they admitted at the end of last week so that they could monitor things carefully.

I may be in for some time until this complexication with the GHV is back under control

I am restricted to my bed at the moment as I had three fainting fits yesterday - side effects of something or other

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

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