The date is set - and its soon!

I went in for my pre-transplant clinic, expecting to hear that the date had not been finalised, or set for the end of October / or November

Instead it had all moved on.

I had my meeting, where they told me I would have my transplant in about 2 weeks! I then went through the whole process, side effects, how they would be mitigated against, and % risks in each major stage. As we had been through this before we understood it all, albeit needing some refreshing of memory - and there were a few differences as technology and drugs have moved on.

Seemingly my heart, kidneys and lungs and anything else they tested for are in top notch condition, and I am feeling very fit

I then had a bone marrow aspirate by Dave, who did a brilliant job - I hardly felt it. They will check that on Monday or Tuesday, and only if my blasts have rocketed would they deviate from the plan below. (If it had gone up badly, I would be whipped in for heavy duty extra chem inpatient stay)

So the schedule is
7th Oct - blood tests
8th Oct - have a line put in my chest so that all tests, intravenous medicines, transfusions etc can be done by that, which is great as it save having 10s of jabs a day
9th Oct - admitted to a Transplant isolation ward.
14th Oct High dose chem to wipe out my entire bone marrow, and mess with a few other things probably
16th Oct Stem cell transplant - which is just an infusion a bit like being given blood
Then for two week I will be given blood and platelets as needed, as the new bone marrow needs time to activate. During this period I am at risk of infection due to no white cells.
After 5 weeks or so I will be let out when my counts have come up - particular the white cells

Meanwhile they monitor carefully and pump me full of all manner of stuff to preempt problems or fix them

A delightful morning out

Pete and I are fellow MDS sufferers at Derriford Hospital. Pete is also on azacitidine , being just over a year behind me on the number of treatments. 

While waiting for treatment we have 'shot the breeze' about many things and given each other great support for over a year now.

Yesterday Pete very kindly picked me up in his lovely Aston Martin sports car, seem here between us with my Jaguar behind. We went to Buckfastliegh where the renovated railway track and rolling stock has its main station and sidings.

There we had coffee and 'put the world to rights'. It turned out that he was in the Sea Scouts while I was in the Air Scouts

He has very kindly offered to keep me company in hospital when Family cannot make it. 

Heart, lung and kidney tests

This is basically to make sure my main bodily functions are up to having a bone marrow transplant

Check out my heart

I stripped to the waist and then was hooked up to a series of machines by three heart monitors - which measured my pulse and then presumably super imposed the trace along side the ultra sound traces that followed

The nurse examined my heart and major veins from three different directions taking images and short video clips as my heart beat. She showed me some results. My heart and all valves seemed to be just fine. It was really interesting when she showed me a main vein - vena cava - as I breathed in deeply the vein closed up completely and as I carried on breathing the vein filled up again. Good job really !

Kidney test using Nuclear Medicine

This was very easy. A nurse gave me a low dose of some radioactive tracer, which then has to be dealt with by the kidneys. Then at 2 hours, 3 hours and 4 hours to the minute if possible, I had blood tests that were all sent for analysis. Presumably they also monitored my other normal blood counts at the same time. This is then a good test of kidney function

Lung function test in the chest clinic

The tests were much more thorough than I remember from years ago. They hook you up to a lung monitoring machine, through a disposable sterile mouth piece - mine was blue. Then I did three tests, and repeated each until they had consistent results. They all involved  normal breathing, very deep inhaling, very deep exhaling,very fast and slow, and lastly after a fast inhale all the way; I had to hold my breath for 8 seconds. I felt perfectly fine during all of it - no problem.

Hopefully all the hard work the past few months trying to get fit should show dividends. Everyone says that the fitter your body functions are the better. This is not getting fit in the sense of loads of extra muscle - although muscle tone of the heart and lungs is important

I will get results on Friday.

We could have just sat there and read all day, but in the bigger time gaps between things we walked around, had snacks, and found a local nature reserve which we walked around for 45 minutes. Barbara and I both have the 'Pacer' App on our iPhones so were able to record how many steps we have taken during the day. So I had done over 5000 steps by lunch time.

 

Pre Transplant Procedures commence

Well here we go

I finished my last dose of Azacitadine yesterday (probably :-) ). I have managed the effects of these last two courses quite well, even though they knock me out for several hours given the full strength nature. I suspect that my fast recover from the chemo is in part due to diet, a lot of walking, climbing stairs and hills quickly, and doing controlled deep breathing for a few minutes each day.

I just got details of my next steps
The transplant is not a 'go' until I pass various tests and have a pre-transplant special meeting with my great consultant.  This mainly to go through the procedure and the risks and what can be done about them. So the tests start on Monday with:

09.00hrs-ECHO(Heart test) Cardiology

10.00hrs-Nuclear Medicine for Kidney tests

A series of blood tests taken at 12.00/13.00/14.00 in the venepunture suite

12.30-Lung function test- Chest clinic 

Special pre-transplant clinic on Friday

Bone marrow test and other things to follow

During all of this we are waiting for the preferred donor to be checked out and confirm a mutually acceptably date - hopefully mid to late Oct

So this is good. A transplant is the only opportunity for a cure, so even though it is scary I will go forward to it with all my will power and strength. I can count on a great team at the hospital, and the constant support of my wife and Roz and help of other family and friends when they can make it. 

All prayers gratefully received.

Day 5 of this bout of chemo

I am feeling very well, having kept as active as I could all week

However the Azacitidine is hitting me quite hard this week, lowering my Neutrophils to .2, that is hardly any immune system

So no musli, uncooked fruit or veg, no nice cheese, no pepper, etc and only pasteurised fruit juice, yoghurt etc

The rashes I get after the injections are longer lasting and worse this week, so I have to keep an eye out for possible infections

I am now getting very impatient about the transplant. Most people at this stage 'just want to get on with it'. I keep being told 'be patient ' but I have always been one to want all my ducks in a row, and see a plan executed. So I might have been. Good in the 'A Team'

Anyway, so far so good

Roz is very well and very active

Keep well

Richard

October it is for my Transplant

In the end we have gone with plan D!!

The Prof at Kings and my local super consultant had a chat, assessed risks and benefits and decided to go for a transplant in Oct, all being well. I am very happy with this solution and was going to ask if I could do that anyway instead of waiting 4 months - as it is less time to catch something nasty, less time to worry about it and frankly you get to a stage when you just want to get on with things (while at the same timing thinking this is scary)

So the process is

• Request the stem cells and schedule the donor
• Next week I have my last round of Azacitidine at full strength for 7 days - which should carry on the process of knocking down the blasts
• Have a pre-transplant formal planning and risk assessment meeting
• After a while to get over the chemo - have a series of tests to ensure I am medically fit enough - heart, lungs etc.
• Have a bone marrow test, when my local consultant will check the blast level herself on the same or next day

This whole process is part of the seven stages as outlined in a book  - click on the link if you want to read it.

Meanwhile continue getting fit and sort out other bits and pieces

• Clarinet to help my lungs
• 6000 to 10000 steps per day to get my heart and lungs going (often vigorous)
• Various minor exercises
• Massage and Osteopath to tone up muscles
• Make sure my teeth are in good nick - I still have two damaged teeth which should be removed or have root canal treatment, neither of which should be done given my status - negotiations ongoing
• etc

 And of course to try and keep stress levels down. We had a smashing holiday last week which helped a lot in this respect

Where my extended family stayed in South Derbyshire

The pub / restaurant in Bamford where my wife and I had our wedding reception many many years ago

Dovedale - a beautiful restful valley in mid Derbyshire