Hmmm..

It almost feels wrong to be posting about my state of health at a time of such devastation in Christchurch. My grumbling aches and pains are nothing compared to pain felt by those who have lived through such a terrifying experience or who have been injured or lost loved ones.
My heart goes out to them.

I did however receive a phone call last night from my #2 GP, Kyra Jones. She fills in for my usual GP, Dr Stu, on the days he has off. Kyra is very thorough and seems to enjoy her work. She usually phones in the evening following a visit and updates me with test results and her thoughts on what may be ailing me.
Last night she called to say that my blood tests had shown that almost everything was normal (relative to me) except my haemoglobin count which was well down at 95, when normal range is 135-170.

This would explain the lack of energy and fatigue. There is just not enough oxygen getting into my blood. It also explain the tachycardia (rapid heart rate). However I've never looked at the haemoglobin levels in my previous blood tests so I don't know if this a new thing brought on by the new Azathioprine drug which is myelosuppressive (damaging to bone marrow) or it's a result of a steady decline in the overall state of my already fragile bone marrow.

I've always know my bone marrow is shot (read F&#ked), it never recovered after my first lick of chemo back in 2005. Add to that dozens of sessions of ABVD chemo, the salvage chemo, the conditioning chemo before the stem cell transplant, the high dose chemo for the STC and you can see why my platelets never get much above 50 (normal 150-400) these days. However if the low haemoglobin count is because of Hodgkin's lymphoma infiltration. There's nothing we can do to fix that.

So fingers crossed that the fatigue is just a fact of life, that the low blood count is a new thing and can be fixed with regular transfusions and or drugs until I'm off the immunosuppressive medication in a year or so. I've emailed Kyra asking her to review the last few blood tests and get back to me.

This can't be right?

My heart rate just won't drop. It's 110bpm just sitting here typing.
My breathing is pretty good so I'm slowly coming to the conclusion that maybe it's not lung related.
I emailed my respiratory doctor and asked him what he thought. He had no ideas, but suggested I get an ECG.

One symptom of tachycardia that I have is becoming breathless with little effort which is inversely what I'd expect from BOOP. ie heart racing due to breathlessness. Maybe I'm looking at this from the wrong end?. The problems with my heart not my lungs. ?

I'm trying to get an appointment for an ECG as soon as I can. I was going going to go for a walk tonight, but from what I've been reading that's probably not a good idea. This isn't going to get better with exercise. In fact it could be fatal.

Cortisol, thyroid and adrenaline levels will need to checked too. Shall ask for those when I get to see a doctor.

To say I'm a little frustrated would be an understatement! I just want to be well and get out and do more without breaking out in a sweat, fatigue and dizziness. Mentally my mind keeps telling me I can still run, cycle and do anything. Then I pick up a box or walk up a short flight of stairs and reality hits.

Fingers crossed for a simple fix.   Yeah right!!  ...Ron  :)

Ohh the new garage is progressing again after a week or so of no activity.
Both my architect/builder and the engineer/labourer are on extended holidays for another week so I took the liberty of getting a team of concrete placers in to do the pour of the slab today. Took them just 45 minutes. (You know there's a down-turn in the economy when your builder is an architect and the labourer is an engineer).
Once it's cured and the builder returns from holiday it should progress rapidly from there.

I hate drugs!

This new drug Azathioprine (Imuran) really knocks me around. I'm only on half the usual dose so we can evaluate what effect it has on my blood counts, but even so it's making me incredibly fatigued.
I spent a lot of Sunday sleeping on the couch and the rest of the time fighting to stay awake.

That's a real pain as I was hoping that it would give me a hassle-free way of weening off prednisone.
Bugger! However I still managed to go to a pistol club and fire a handgun for the first time, then fix a friends Camaro in the evening, so the day was not a total write-off

My resting heart rate is still all over the place. Ironically I got excited yesterday when it dropped to 70bpm for a while, but today it's back up to 120 again.

Woke this morning feeling like crap, and running a slight fever. Now sweating it out as I get myself organised to do a full days work. Shall see if I can muster some energy and push through this fatigue.

...Ron

And another update...

Yesterday I met with the respiratory Doctor and we discussed my current situation.
He agreed that my diagnosis of BOOP relapse was the most likely cause of my drop in health.
Yay! I'm not completely paranoid after-all!! 

I've lost 4kg in weight over the last two weeks, sadly none of it off my prednisone enlarged stomach! :(
My heart rate still rests at a rather rapid 105BPM, which is concerning, but I've borrowed a sports heart rate monitor and will be keeping an eye on it from now on. It could have been high for months, who knows.

The plan is to get me weened off this darn prednisone as soon as we can. To that end we have started on Azathioprine, an immunosuppressant that should suppress the inflamation in my lungs like the pred does but without quite as many side-effects. One likely side-effect however is bone marrow and platelet suppression, something I already suffer from so we are looking at regular blood testing to keep an eye on my blood counts. (My platelet count this week is 49, normal is 300-400, so there's not much room to move before I start leaking!)

I was pleased that the respiratory Doctor managed to get hold of my Haematologist on the phone while I was with him and the treatment plan was discussed by them both. Haematology will keep an eye out for my bi-weekly blood test results and contact me if there's a problem.
If my counts look safe in two weeks time we shall double the dose of Azathioprine and start reducing the prednisone.

From there we just have to hope that those pesky nodes in my pelvis stay dormant and don't wake up once I ween off steroids. Should take about a little under a year to ween off. Roll on next summer!

Sarah has me on a no wheat, no sugar diet to see if I have a yeast imbalance causing my skin itch. So far no change. I've come to the conclusion that sugar is the drug for the masses, It's in everything!!. I could hardly find a single item in the supermarket that did not contain it. One has to ask why do the manufacturers think they need to put sugar in mint sauce?? It's vinegar and mint FFS!!  and that's just the start of it.

Not much else to report.. haven't shaved in a week, look like a scruff... don't care..

Cheers!   ..Ron

BOOP Relapse? and some fun behind the wheel.

I'd mentioned in earlier posts that I believed my BOOP had relapsed. I'd increased my daily dose of Prednisone to 40mg for a week, then 30mg for another week and then down to 20mg which is where I am now.

However I recently noticed that I was feeling more fatigued than usual, was running a low grade fever in the morning and my resting heart rate was a rapid 120 beats per minute, nearly twice the normal rate.

Looks like I should have gone for a higher starting dose last month, 60mg would have been better.
It's a week before I see the respiratory doctor and have another lung function test, so in that time I'll run with the high 60mg dose and see what the lung function tests tell us.

I just can't sit and wait as the longer I leave it the more chance of heart problems and further lung damage.

Oddly enough I feel quite well.

Last weekend I entered the Wallaceville hillclimb in Upper Hutt. It's an event that is primarily run for classic type cars, but they will let anyone enter unless it's a four wheel drive car. This meant I couldn't enter the Evo. I'm told it's because the 4WD's would win and take all the fun out of it for the guys further down the field. Somehow I think the organisers have missed the whole point of building a high powered car capable of winning hillclimbs.. but never mind, it's their event and as such they can make up the rules.

In light of that I was asked by my good friend Alf Hole if I would like to share the driving duties in his little 1973 1200 Datsun. It's got over 400 less horse power than the Evo and was running on some very old and dried out road tyres. It was going to be fun!!

And fun it was! I managed to fling the little Datsun over the 1.5km course in a time that was 3.4 seconds faster than the owner could manage, winning it's class and taking home the trophy for 3rd over-all in the index trophy category. This is worked out by the age of the car, the power and the times posted.
So a really good day's motorsport, great result and a huge amount of fun!!  Roll on next year!
I must say it's a lot less stressful than driving the Evo, where the pressure is on to win outright and the speeds are so much higher.