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.

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.