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

35 days post transplant

Doing well. Gradually doing more each day

It's a long haul, getting over the feet problems went from dragging myself up the stairs, to slow climb with one hand holding, to yesterday when I managed several flights of stairs - albeit slowly

I am starting to do a few small things around the house, drinks, parts of meals, feed pets etc

I think the more you dio the better, within reason , though I still get tired very quickly.

I am also feeling the cold less now, which helps.

Richard

Day 30

I had clinic on Wednesday and they were very please with progress, and even cancelled the Friday check up.
When I do not need to go for check-ups I wander around the house a bit,  make calls, and do a few hours on the computer, We went out to Langs - our nearby abattoir and butcher to collect some gammons we had coming 

I mentioned some time ago how they filter the stem cells from the blood of the donor, in some case yourself or a sibling.

Well this is the machine they use. Using a line, they connect your blood flow through the machine. When in the machine it does a complex process called a hokee cokee, followed by turning the blood around. That is what it is all about. I nice simple multi-purpose machine

My daily pattern is get up, work and mess around, lunch, sleep for 2 hours, get up again and go to bed at 10:00

Day 21 Discharged home & Day 22 At home

Day 21

I have been working hard to remove any reasons that were preventing discharge. The gout is easing and I managed to stomach the oral version of my one remaining intravenous drug, plus the sickness is under better control again.

After the entourage of doctors had examined me they asked me if any of the other doctors had told me when I might go home? I asked them when they thought I ought to be going home? So the senior doctor said anytime really! We discussed alternatives then agreed that today would be fine (I.e. Day 21).

Minor panic ensued as Barbara couldn't be available until late afternoon as there was a group of students visiting the farm, a sick ram awaiting the vet and a new rare-breed Portland ram arriving sometime in the afternoon. Roz was happy to bring me home but was having difficulty getting hold of friends to pick up the children from school. Persistence paid off, the children were sorted then we had to wait for a big bag of drugs, discharge papers, and a wheel chair. Roz had to do three or four trips to the car with bags of my stuff. When we at last got out we had the last four bags - which was strange as we only came in with four bags !!! I said my goodbyes and then FREEDOM after four weeks of encasement!!

The dogs were pleased to see me, when they realised who I was!!

Day 22

I am sleeping better, eating and drinking better, my gout is nearly under control, temperature still up and down a bit, Barbara has me organised on pills and potients 

Tomorrow I have to be in the DayCase unit by 9:00 am to got various tests and monitoring. If needed I will get drips or what ever the results suggest

Day 19

Feeling much better - my ability to concentrate had improved and I am sitting up in my chair more. I even managed to read a bit. Blood counts fine

The three things to fix are my feet, sickness and getting me off the IV anti fungil before they will let me out.

You can possibly see my skin flaking off. Not a pretty sight!

Day 17

Yesterday and today my counts have improved again 

Heamoglobine up a bit to 11.3 - (14 or 15 would be great, but Hb always takes a bit longer)

Platelets 316 - very respectable 

Neutrophils 6.1 !! Which is fantastic

They have taken my off antibiotic cover, and all but one of the IV drips have been switched to tablets

My biggest issue is the gout. I can barely walk with it. Which also limits my exercises. They will try a tweak on one drug and some anti-inflammatory cream

The gout has spread to both feet, I have pains under the arch of my left foot

 

Day 15

My counts are even higher so they will gradually ween me off the Intravenous drips, onto tablets 

If all goes well they aim to discharge me to the DayCase unitsetime next week

They would like to see the runs decrease a bit more, get some energy back, and a few other things

Meanwhile I have felt very tired and slightly sick all the time. So my eating is very limited. Joy of joys I was violently sick 20 minutes ago

Anyway, progress on the big ticket items is great

Good night

Richard

Day 14

Another day of mainly ups and a few downs 

Ups

My neutrophils are now a massive 1.5  !! And working hard

Platelets are at a normal 300+

Haemoglobin counts will need a few more days

The stitches for my Hickman line were removed and no sign of infection - I may need it for another 6-8 months

Acyclovir is going to be switched from IV ( intravenous ) to tablets

My weight is back down to normal 

I ate a cooked breakfast

Barbara brought in some nice chocolates   and fruit chewy sweets

She also read my book to me until I fell asleep

Downs

I could not face lunch, and 10 minutes later brought up every thing I had eaten that day

My muscles are going thin and wasted looking in areas

I had two severe attacks of gout overnight. My nurse and I figured the only  thing we could do was to use an ice bath for my foot. They had no footbaths, but found a cardboard disposable bottle bath, big enough for my foot to fit diagonally. There was no ice though! They searched high and low. So I suggested lollipops. In the end we also used a small ice pack and a frozen drink

In general a very positive day

Day 13

Some very good news. When I got my blood count results today I was delighted to find that my total white cells are at 1.7 and my neutrophils are at 0.7. My consultant's response was 'Yessssss!!!!!' She says they will start to change my medications from intravenous to by mouth over the next several days, then if there are no setbacks I will be able to go home in a week to 10 days time.

Apparently quite a few transplant patients develop a bit of gout during their treatment, so when you have a gout problem to start off with it can be more tricky to manage and yours truly gets gout. My right foot doesn't look too pretty at the moment and is very painful. Luckily my donor's stem cells have produced loads of platelets so I can take quite a high dose of a non-steroidal anti-inflammatory drug, ibuprofen in my case. It isn't fully effective yet but should improve over time.

Another good sign of recovery is regaining a bit of appetite. I even managed a small cooked breakfast this morning. I assume my new neutrophils are starting to do a good job as I haven't had a fever now for 36 hours. Barbara still comes in and bosses me to make sure I have a shower every day (or if not Barbara, my daughter does the bossing). It is really tiring but I feel so much better after showering.

And yet another encouraging sign is getting a bit of concentration back. I was even able to read 5 or 6 pages from 'The Lord of the Rings'. Rosalind brought the grand children in to hospital and because my counts have improved they were allowed in to see me in my isolation room.

 I have had several emails and messages in the last week from other MDS patients and their carers and I would like to thank them very much for contacting me and for their encouragement. I hope this blog will be useful for them as they go forward on their own journeys. On our journey Roz and I have found several sources of help and information including the MDS Foundation, the UK MDS support group  (our first port of call), Macmillan Cancer Support, Leukaemia and Lymphoma Research

Of course there will be daily trips back to the day case unit for quite a time after I get to go home, but I will be able to sleep in my own bed and my dogs, Josh especially, will be so pleased to have me home.