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

And then there was Plan C

So I met up with the Professor who had my latest bone marrow results

Last time my blasts had gone up to 7% - which is not good

So the idea was to give me Azacitidine three times and get the blast to below 5%
Plan A - if less than 5% - they straight for a transplant
Plan B - if greater than 5% then have heavy duty pre-conditioning chemo, a rest for two weeks for body to recover and then have transplant

So all very clear. Well perhaps not

The problem was that my blasts had only come down to 6% - which is better but not good enough
And my cellularity is only 15%, which means that it would be quite risky to go for plan B

So Plan C it is!!

He has therefore specified the following firm process After this week's full Azacitidine is finished on Wednesday have three more full doses starting 9th Sept, 7th Oct and finally 4th Nov 

Then a bone marrow test on 26th or 27th Nov

He expects the blasts to be on or below 5% and cellularity much the same as it is now

(but cellularity will not now be critical - see below)

Have all the tests to ensure heart, liver etc are OK

Then 4 to 6 weeks after the bone marrow test, start a transplant with 4 days of special chemo (rather than 2 days which folk normally have on Plan A) immediately prior to giving me the stem cells.

Ie transplant late Dec or early Jan

These bodies we have are very complex and it requires real judgement a lot of the time.

Luckily the message got to Plymouth just before they ordered the stem cells.

The good news is that the extra time will enable me to get fitter, get over the bruising and sprained ankle from the mad cow, do dental work etc

Stem cells ordered

I am on my fourth day of full strength azacitidine tomorrow. Its going well but it does make you tired and all the other symptoms mentioned in earlier Blogs - but you get used to it and just carry on.

The Transplant Coordinator  came and had a chat with me this afternoon when I was waiting for my jabs. As we are all sure the transplant will go ahead, unless something very weird happens when I get my bone marrow results, she has decided to go ahead and order the stem cells (bone marrow) from my preferred donor. All I know is that he or she lives in this country and is a 100% match. The logic is that if the transplant goes ahead quickly; say end of September; then we might just be able to tie in with the donor's timescales. If not it is relatively easy to change the date. Meanwhile the donor will be confirmed, checked out medically and a tentative date set.

She also booked me in on the Sept 2nd to have my pre-transplant medical - heart, lungs, kidney, bloods, etc

So if we go down the line of no pre-conditioning chemo, then I might be admitted last week in Sept for a transplant the week after. This would give me time to get fitter, have dental treatment and anything else needed. My rendition of 'When the Saints' on the clarinet is nearly good enough for listeners to approach within say half a mile. Well, at least with ear defenders on! It does give you a great work out for the lungs. And walking up 4 floors at the hospital each day helps heart and lungs

So the next step is bone marrow results on Monday, after which the dates might well change. But its more progress

A Leg up

Yesterday I had an ex marine health expert aged 70, examine my lumps over the bruises with a scanner. He then used mechanical massage and gentle electric currents to try and break up the scar tissue. This let the blood get in and repair the damage. Using ice causes the blood capilleries to close and reopen, again stimulating repair by my blood. Obviously I had to wait until my blood counts were good enough to respond to this stimulation

He also used shock wave technology to stimulate repair of my sprained ankle and ligaments. 

Today I had a medium deep leg massage on my legs to promote the same reaction

I have also taken up speed walking, using large ball based exercises, co trolled deep breathing, gentle push-ups and light weights to get my heart and lungs fitter. For the speed walking I go 1/2 mile up hill to a field with sheep in, give my sheep dogs some training and then come back. And tonight Roz is bring a couple of wind instruments over so that i can try and play one of the clarinets to exercise my lungs 

After the massage, I was told to drink lots of water and would feel tired. So I had the drinks and went out wrapping silage bales with a JCB telehandler

Next step in the process to my transplant

Yesterday I had bloods and a bone marrow test. The results will be in two weeks, when I see the Prof again. Then we will decide how and when to go ahead with the transplant.

Meanwhile the consultant at Kings wants me to continue with the Azacitidine, starting another session next week. It's the 'if its down (the blasts or Cancer if you like) then let's keep it down' strategy

Meanwhile my biggest issues are trying to fully recover from the mad cow problems

My sprained ankle is a lot better, but a ways to go yet. The bruises are still very swollen. I am seeing a sports expert on such things tomorrow and getting a special massage on Thursday

And then it's down to getting fit, losing a bit of weight and getting my heart and lungs tone improved

I thought I might try playing the saxophone to help my lungs, so my granddaughter is going to teach me

As for the heart - exercise - possibly hitting  old bags - punch bags that is

And I am trying to get my teeth in top shape. The cow knocked half of one tooth off ( now capped) and hair lined cracked two others. So today they were X rayed. Before the transplant the dentist may need to do root work on them, and get my teeth very clean and gum disease free. Luckily they are in otherwise quite good shape

When your immune system is zapped the biggest danger of infection is yourself

Roz is doing well and helping me as I used to do to her before meet transplant

Possibly last dose of Azacitadine

The transplant nurse told me I have a choice of two donors, both with 100% match. One is in late twenties and the other early forties.  So this is great news, if a bit scary that I have no real choice but to go through such a risky process. 

I am on Azacitidine for 7 days, which might be the last dose I have if the bone marrow tests shows very low blasts and if the transplant can be arranged for early Sept. But it is possible they might give me one more dose, just to keep the blasts down if scheduled for later. Or, I might have preconditioning chemo. The Prof and my consultant will decide in a few weeks

Meanwhile my bruises and sprained ankle from the cow episode are getting better - but I have three or four large areas of  swelling on my legs which might take 4 weeks to be re-absorbed.

Clinic

Rosalind is very well and came to help on Saturday when we had the ward around for a walk around the farm and BBQ

I had clinic today. My blood counts are not brilliant, but OK and so I will start another bout of chemo next Monday. The consultant thought my body is not going to stand full strength chemo for many more months. Then I have another bone marrow tests before deciding which protocol to follow for a transplant

Donors

Seemingly I am bog standard Anglo Saxon and there are 'loads' of potential donors on the books. Three people are having detailed tests done and we should have a positive outcome in the next 2 to 3 weeks. So it was a good thing having a mum and dad from Sheffield all those years ago.

So the 99% likelihood is that I will be an inpatient in Bracken ward ( the new transplant ward) in September either having

1. Preconditioning chemo before a bone marrow transplant in October

2. Or if my blasts are fully under control with the Azacitidine, then straight into a transplant in September

Meanwhile we have made loads of hay today

Feeling a lot better and getting around

Rosalind is getting ready to go to France for a few days with some friends. Her counts are now good enough to get normal insurance.

I went to the Fracture clinic and they took off my leg plaster from the cow fracas. They also re-checked the X Rays, and now believe that I had been luckier than I thought - ie there appears to be no break on re-examination. It had been the right thing to do to err on the side of caution. I now have a snazzy plastic boot leg protector on. This means that I can just about walk without crutches and even carry things - cool. So its ice packs on the heavily bruised parts of both legs - 20 minutes a time.

Meanwhile I had bloods, which showed I had used up a lot of hemoglobin and platelets repairing my bruised body, so the consultant decided not to give me the last two dose of Azacitadine and just let my body recover.

Cow tries to kill me and fails

I am feeling fine while in bed now

Basically last night a cow that had just had a calf needed to have her calf checked, mainly spraying the calf's umbilical cord.

I got very close and the mother was fine, gently mooing

In the last three feet she attacked me. I ran about 15 feet before the cow caught me and knocked me down. She then proceeded to stomp on me. Luckily I went into a prenatal shape and most of the damage was on my left leg and arm.

She stopped and went back to the calf, and I managed to crawl 15 feet or so further away before attempting to get up - this assured she did not attack again

I got up, like a shaky tree, and somehow went the extra 60 yards to the gate, where I collapsed until Barbara and Simon came to help. I really like adrenalin :-)

The ambulance arrived in minutes, they trussed me up against neck, back, torso etc possible damage

The right leg - which was hurt least

In the emergency ward

When at Derriford Hospital they did the usual checks, CT scan, various X rays and found I am really lucky having a hair line crack on my left lower leg, extensive bruising on that left leg and arm, and hoof prints / and bruises elsewhere, one tooth knocked out, and shock - nothing of any concern

The day after - she tried to attack my farm hands when she was moved
A nice calf though

Given my medical history with varicose veins and a DVT in the past plus my current treatments they feel I am at above average risk of a blood clot with a limb encased in plaster so they want me to have 3 days of subcutaneous jabs of anti clotting stuff

I do not feel up to having the azacitidine  today. I could probably hobble in, given a wheel chair, from tomorrow

The Fracture clinic are going to put a better cast on my leg on Wednesday this week.So the good news is that the cow did not kill me, I it was about time I learnt how to walk with crutches

The bad news is I got to bed at 7:00 in the morning

I must say that the emergency services were excellent