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.

Hair today

I had my hair sheared to level zero on the clippers the other day, as you know. And it is a lot thinner than before 

But what is weird is that my remaining hair has definitely grown !!

Day 12

On day 10, I was delighted to hear that my platelets had gone up so this is the first indication that the new stem cells are doing their thing. On the down side I had a couple of temperature spikes and the usual runs. Simon and Jaanika visited for the last time before returning to Estonia and Robert and Jessica came in later.

My sons were delighted that I ha shaved my head, and looked more like they did - until they realised that mine would go back

Day 11 even more platelets, haemoglobin  level stabilizing at 10.8 and the first neutrophils turned up - not a lot, but measurable at 0.04 (as I said, not many!) - and another day of temperature spikes. Robert and Jessica visited before heading back to London before the predicted bad storm caused travel disruption. Rosalind was in early then off to sort out sandbags, Barbara came in later after sorting out various lines of sandbags around farm buildings.

Day 12 - high temperatures again (38.7 C) It was great seeing my consultant again, as she had been off ill for a week. She thought I was doing really well. My blood results today gave total white count at 1 with neutrophils at 0.2. Good stuff these new cells. 

When the ward visit came around, one prof, one consultant, and registrar , the prof said that was not a high temperature in our terms, and that I am doing well

Day 9

I woke up this morning with a temperature of 37.8c. Juat to make sure I asked them to check my other ear with the temperature ear probes that they use and it was showing 38c. So we discarded that measurement as I had been lying on that ear. They were obviously worried about any infection, but luckily within an hour my temperature has reverted to normal.

Just to be on the safe side the doctor wants to check out my lungs, in case I had a slight lung infection. When Rosalind had to do this they put masks and gloves on her and wheeled her down to the basement of kings hospital. Instead here a charming operative turned up with a portable x-ray machine and took my x-ray within two or three minutes. But Barbara is running a temperature so she was not able to come in to see me today. My son simon came in and after the usual quick update,  we did some important things... That is we watched several episodes of blackadder.

I have three slight rashes, one on my face, one on my chest, and one on my groin. My sons are happy though, as my hair is falling out now by the bunch load. I will get them to shave it all off as soon as they can so that I do not wake up breathing in my own hair. Pictures to come...

The transplant nurse popped in and was hopeful that I might be out in the next ten to twelve days... But who knows. 

Day 7

My Platelets are at 4 so I am getting some later

HB at 10.4, so will get blood tommorrow or day after

All very new to me - it just shows how important it is to have loads of folks giving blood regularly

The Dr says I am doing well. My biggest problems at the moment are no energy and feeling bitterly cold all the time

Mind you at this stage patients do not eat much

Day 6 after transplant

Feeling not too bad after a good nights sleep, albeit getting up once an hour to go to the loo and stretch a bit

One of the problems that everyone gets to a degree is fluid retention form the volume of liquids being pumped in and because some of the capilleries leak fluid a bit. This my right foot. I have always prided myself on my good looking feet - no longer! You can see the swelling around the ankle in particular. 

The big toe on this foot is suffering as well. I occasionally suffer with gout - which is usually accompananied by shouts of 'too much red wine and red meat' . If you have never had it, it is hard to explain the intensitity of pain from an attack. The treatments have complications such as:

Suppress stem cell production

Or inhibit the anti rejection drugs 

So my consultant had figured out a strategy to control my gout through the transplant by very careful use of one drug, varying the dosage carefully. Some patients have the same drug for a while pre-transplant and are then taken off it. So by accident I was also taken of it, and then had a gout attack. Normal pain killers do not work, so we used an ice pack to dull the pain

Apart from that I feel week and rough but I could be a lot worse

I'll be in touch

Day 3 after transplant

All things considered the doctor says I am doing well, mainly because I haven't had an elevated temperature or infection yet. However, I will have been on drips for 9 hours by supper time. These include K and Mg and the usual range of anti rejection, antiviral, anti fungal and anti sickness drugs. And surprise, surprise I am still retaining too much fluid so my feet, legs and trunk are all a bit bloated. So I am also having diuretics to keep me seeing plenty. Coffee is actually diuretic but I can't face that at the moment. Currently my platelets are at 30, my neutrophils are zilch but my haemoglobin is still quite reasonable so I haven't needed a blood transfusion yet. My concentration level isn't very high and my conversation level is boring (nothing new there then).

Roz has been busy all day running a felting course at the farm.

Day plus 1

I do not feel brilliant, but am told be the doctors that I am doing really well

I have had bed sores, so they got me a new mattress with a ciculatong air system, that provides less direct pressure when you move around - elbows feet and bum. It also gently massages you - you cannot feel it, but it seems to work 

Apart from that I was able to get up for while, manage nausea mainly, and catch up on some sleep

Day 0 - the stem cells are in

The last couple of days have been rough, although I am told I got off reasonably lightly compared to some people. Side effects included nausea, the runs, interesting hot flushes and slight hallucinations when trying to sleep. A bit like experiencing holiday excesses and the menopause with a bad trip thrown in. I had vast amounts of fluid given by drip over a 24 hour period which meant a visit to the loo every 45 minutes or so during that period.

Today I feel a lot better and am even eating a little bit of food again. (Just off for another quick visit to the loo.) I have had more anti- rejection drugs and antiviral to add to the antifungal and antibiotics I have been on already. Just after 1 o'clock  2 bags of stem cells arrived from my donor. They didn't harvest quite enough from my donor on the first (I am rather a big bloke) so they took a second harvest the next day. Now the magic begins. This is when the stem cells circulating in my blood migrate to the bone marrow and start producing new and healthy blood cells. 

Ros and I, other other transplant patients cannot thank the donors more - if you are not a donor but are in good enough health, please sign up.

End of day - feeling a lot better

Well that was a horrendous three hours, the second half of the chemo

Trying to remember to breathe, whenody shivering, temperature, and generally feeling crap. The brought my tea, which I sent away, other than some jelly

It a few hours later. I slept a lot and now feel a lot better, and have had drinks and I am now tucking into some toast . 

Day -3 starting Campath

Yesterday was a relatively straight forward day. Barbara wasn't in because she had a sniffle. I did lots of exercise and worked on remodelling the Fowlescome website. The lunch was surprisingly OK

 Today they are hitting me with the heavy stuff so I don't think I will be very productive today. I packed a good lunch in - I may not feel like eating much later. I wouldn't recommend this as a way to lose weight.

 

Day -6 and -5

Well I am feeling very well. I have had two days of Fludarabine out of a course of five days. It has already hammered my Nuetrophils quite well, having gone down to .3 from around .8 in just one day - powerful stuff. No side effects, which is good

The food is very acceptable. This is breakfast, so you will note that I have not yet lost my appetite. Tonight I did not fancy any of the main courses, so they let you choose from the hospital restaurant menu
Yesterday was very busy. I have not even opened a book or watched a DVD yet. They managed to get the Xbox attched to the TV working, so I can watch DVDs later - we nearly got it working on our own (we had to find a controller that had disappeared, new batteries, push the connectors in better) but it took a 18 year old on the ward to get the controller to talk to the box!! Then I had great service from the nurses, doctors, cleaners, catering and other staff - they are a very professional, dedicated and friendly team. Ros came in in the afternoon with a matching pillow and blanket (Tesco's best at £10) for my bed - I get cold for some reason just for an hour or so after going to sleep

As I am confined to the room mainly they have set me up an entire gym, which I can use while enjoying the view

My Gym

The view is over the hospital roof and its air con ducts

Mind you its a lovely day out there. The construction work with the crane is quite interesting. If you look very very carefully there is one plant on the roof in the left hand photo above. There is a debate about trying to mask some of the ducting with low flowers - even if artificial. In the distance there are trees and blue sky - so no complaints. When Ros was in Kings, the view on one occasion was of a wall about ten feet away, and the second they had boarded up the windows as there was construction work right outside about 20 feet below, and the noise was of drilling and hammering etc. But you can get used to anything

I think Ros is enjoying doing to me what I did to her - the nagging is to come, which is when I will feel rubbish and need pushing to eat, exercise and just cope. It has to be done, and the nurses have already told me they will switch to nag mode in a few days - but hopefully that phase will only last 2 or 3 days

So, so far so good

And thanks to everyone who has sent best wishes via the blog, email, phone or snail mail. It is much appreciated

Richard