Chats with the Doctors

Last week I had a couple of appointments at Wgtn hospital, a Chest Xray, lung function test and then a meeting with Darren Bowles the registrar who has been treating me for COP.
Both Sarah and I developed a cold/chest infection about four weeks ago and this has set back my recovery and length of treatment by a couple of months.

I'd been reducing the steroid dose by a 5mg a month and was on 20mg a day when I developed the cold and it's associated cough. The resulting lung inflammation was unable to be controlled by the lowered dose of steroid and so both Darren and I agreed that we should go back up to 25mg for the next two months and then start reducing again after that. I may need to go even higher if I show any signs of worsening. Doubling the dose is the first line of attack if I relapse severely.
Then it would be several more months before the dose was back to 20mg again.

It's a little annoying as I really don't want to be on prednisone any longer than I have to.
Some days the side effects are really bad, others they are no problem at all. Monday night for instance I was in intense pain in my lower back and hips for four hours and nothing I took or did would reduce it. I've had no pain since.

Yesterday I had my three month follow-up with Dr D'Souza my haematologist. It's now been over a year since my bone marrow transplant (stem cell transplant) and we covered a lot of stuff.
It's a bit like attending a medical lecture, the amount of information he pours out is incredible and I'm not sure if it's because he knows I like to hear all details or what, but I'm sure it would be lost on most patients .

I asked him if he had any ideas on the possible cause of my muscle cramps and we went through a few possible causes. There is a treatment, quinine, but it can cause a drop in platelet numbers and I have a low enough platelet count as it is (compounded by the steroids as well) so we excluded that as treatment and I've decided to put up with the cramps. I was pleased though that I knew quinine was not an option as I'd read about it's side effects when researching my thrombocytopenia a few years back.

I've been trying to reduce my dependence on Fluconazole, an anti-fungal drug I have been taking daily for over a year now. My severely compromised immune system leaves me open to fungal infections as well as virus's and bacteria. My T cell and CD34 counts are pretty much the same as a person suffering from AIDS, however there is very little research done in this area and the doctor said that although I have a CD34 count of just 200 there is no definitive comparison between that of a post autologous STC patient and that of someone with HIV with the same counts so we really don't know what to expect with regards to infection etc.

Hence he wants me to continue with the anti-fungal, start on a weekly antibiotic and strongly suggested I be taking a daily anti-viral as well. I really don't want to be taking fists full of drugs for the rest of my life and I voiced that concern with him. We agreed to take a wait and see approach to the anti-viral and I'll take the weekly anti-biotic as it will help guard against a repeat of the pneumonia I suffered last November.

Dr D'Souza said that some of the top overseas lymphoma specialists are now moving away from regular CT scanning post treatment and are now using it only to confirm involvement rather than look for it. He asked what I thought about not having regular scans and I said I'd like to have one mid year just to see what does or hopefully doesn't show up. The steroids shrink any activity in the lymph nodes, so even then it could well be a waste of time. Doesn't hurt to look I guess.

We are still settling into the new house. I've yet to complete the painting of the workshop, but hope to have it all done in the next couple of days. Then the hoist can be installed and hopefully I can start on the back-log of jobs I have booked from various customers who have patiently waited for me to get set up again.

...Ron

So much to do...

I've been flat out since moving into our new house. I've been learning new skills almost every day. I've learnt how to prepare and varnish timber, how to paint, how to install wiring into walls, how to make a wooden letter box, how to repair an electric domestic water pump. The list is endless.

I've installed heated towel rails, mounted a Big screen TV on a wall and connected it to my home network, I've set up a home theatre system, installed a water purification system and tweaked the water supply system for better pressure. I've carted gravel from one end of the property to the other, assembled shelving units, painted floors and hung shower curtain rails to name but a few. Every day there is something new.

The water pump for the domestic supply and sprinkler system stopped working three days ago. It's a brand new pump and the biggest and most expensive in it's range due to having to run the sprinklers at full flow in the event of a fire.
A bit of research showed that the pump was not getting enough power and the voltage drop on start-up was causing it to not run. The addition of an extra large starting capacitor did the trick. (something else I've learnt).

I thought I heard a slight tinkling noise from the pump when it was restarted so I spent an hour today removing the pipework from the front of it and letting the system back-flow. The theory was that if there was anything loose in the pump it would be flushed out and I would see what it was. I didn't detect anything coming out with the torrent of water that poured from the open pipe, so I put the pipework back on, not an easy task as it's of a very large size.

I had just finished getting it all back together when I noticed a stainless steel nut sitting beside the pump housing. It didn't belong to anything I'd been working on but it did look exactly like the sort of nut that belonged on the end of an impeller shaft! Bugger.
I phoned the agents for the pump and asked the service manager whether there were any 10mm stainless locking nuts inside the pump. He said there was and it was probably the lock nut for the impeller. Tomorrow I'll strip the pump and refit it. :(

I've still yet to paint my workshop, something I urgently need to get done so I can get my hoist installed. In the meantime I have yet to find a home for all the "stuff" laying around in boxes.

Sarah and I splashed out and bought a new TV and home theatre system last week. It was part of the original plan to have the TV on a big canter-levered arm that allowed us to view the TV from either the lounge or our bedroom at night. It took me over twelve hours to set everything up but it works like a charm. The electrician had put just one TV outlet socket on the wall behind the screen. I installed another seven cables into the wall in order to get everything working.

The technology of these new systems is amazing. If I insert a DVD or Blue-Ray movie into the home theater system the TV sees what I've done and automatically changes channels and plays the movie. The TV also "talks" to my home computer network and can play any movies I have on the computers in my office, along with viewing pictures and playing music files, which it then sends back to the home theatre system. It sounds complicated to use but most of the functions are intelligent and happen automatically. Such as plugging a USB stick into the TV and it again changes to that channel (the USB input) and loads and plays the files. Fun fun!!

Both Sarah and I have been suffering from colds for the last few weeks and I must say it's knocked my health around a fair bit. I've lost a lot of my energy and some days I feel like I've been hit by a train. It can take until midday before I feel well enough to function properly.
I hope it doesn't last. I think the steroids have a big part to play in it all. I dropped the dose from 25mg to 20mg about ten days ago and I've not had a good day since in contrast to how great I was feeling a few weeks back.

I attended the Hutt Valley Motorsport club's annual prize giving last night. (I was told I should attend) I took away five trophies, all for Hillclimb and sealed sprint events. Not a bad effort considering my state of health during the 2009 year!. One person commented that had there been a trophy for racing hospital beds I would probably have won that too!

Well that's enough of a ramble for today, I have a stock take to do this weekend and a garage to organise. Wish me luck!

..Ron

A really quick post :)

The big move to the new house went really well. A huge thanks to the McCalls, Anthony Futter and Tim Sutherland for there invaluable help.

We absolutely love the house, it's location and the new life style. To stand out on the deck on a still clear Saturday night and take in the peacefulness, the serenity was truly awesome.
A huge thanks to Rob, Marty and Keiran for a great job on building our perfect home.

I'm working 12+ hours a day getting things sorted, painting and doing a thousand other little and not-so-little jobs. Sarah is much the same, spending her evenings getting the place into some sort of organised state. Personally I think it will take several months before things are fully sorted but that would include the landscaping etc too. We are only a week or two from having the place fully painted and looking complete inside.

Healthwise this is the best I've been in over four years. My energy levels are fantastic. The three days of lifting heavy boxes, fridges, stoves and furniture had no physical effect on me at all. However on Monday I had a series of 'turns'. Probably thirty in total. I'd suddenly be overwhelmed by a strong feeling of deja-vue. Like I'd just landed back into a dream from the night before. I'd feel faint and nauseous for about thirty seconds and then be fine again. I have no explanation for it other than maybe I missed my steroids that morning. Although I'd swear I'd taken them.

I've been fine ever since..

View the latest pics of the house here ...House pics.

Later...Ron

Moving House..

The new house is almost finished and Sarah and I move in this weekend 14th Feb.

Last Fridays sausage sizzle and drinks went very well with a few surprise visitors, some I hadn't seen in years! We are planning to have a big house warming party once we are settled in. I'll post the details here once we set a date.


My energy levels are really good now and I'm using my regained strength to do as much work around the property as possible. Today I was securing 'Novadrain' pipework to waratah stakes down into the bush and into a small stream. Much swinging of a sledge hammer and climbing near vertical bush covered slopes left me puffing and sweating but it felt good to be doing such energetic work again. Last weekend I painted the workshop floor and tonight Sarah and I laid carpet in my "man cave" / Office.


You might remember a couple of weeks back I posted that I had a heavy fall in the driveway, a "Face-Plant" that left me with a grazed face and a badly bruised chest. Last week I was talking to the builders about how the steroids can cause sudden muscle weakness and spasms causing me to trip.
We were loading a trailer with rubbish from the building site. Suddenly my legs gave way and I tripped falling heavily against a metal tie-down peg that was protruding from the trailer, almost impaling myself. I say "almost" because to look at the black bruised and grazed circle on my back, it looks like I was shot with a rubber bullet. I think had the peg been a little sharper I would have been in more serious trouble!


I can see that I am going to have to be ultra careful over the next year while on medication :)



My daughter Ashleigh and her boyfriend Gary have been staying with Sarah and I for the last four weeks. They returned to Brisbane yesterday. Was so good to catch up with her, it had been two years since she last visited and so much has happened to me in that time, it's good to have had this measure of health so that we could get out and do a few things. Not as much as I would have liked though as the new house soaked up a huge amount of my time.






...Ron

Life's Good!

Other than a few muscle cramps at night I seem to be completely well.

It's actually kinda strange to not be sick. It all seems normal and at the same time unusual.
An almost deja-Vue feeling. You get so used to not being able to do things, that when you can it's a novelty even when it might be something that's so familiar. For instance.. Who would have thought that being fit enough to spend a whole day painting and sanding would be cause for celebration when in reality I hate decorating!

I've been very precise with my steroid dosage and timing and it seems to make a big difference.
Previously I'd have them at various times of the morning and play with the dosage if I thought it would help my aches and pains... turns out it was the "playing" with the dosage that caused the problems!.

My weight is still climbing but not as quickly as over Christmas. I'm now about 77kg which I'm happy with. However I just need to make it spread out a bit more, as it all seems to want to sit on my stomach :(

I entered in the Port Road sealed sprint the weekend before last. Murray let me use his Rally-Rides car (a very tired Evo Lancer). It had to be one of the worst cars I've ever raced in! I complained bitterly to Muz after my first run and he thought I was joking... (he hadn't driven it on Tarmac) That was until he took it out for a drive!
He returned to the pits after his run, slammed the door, said "good luck buddy" and went back to driving his yellow beast, to ultimately take out second place.

I took my daughter Ashleigh out for most of my timed runs and we drove the wheels off the car trying to post a half decent time. It had a slipping clutch, terrible handling, poor brakes and absolutely no power! In desperation I looked under the bonnet for something to "tweak".
A bit more boost and a tad more ignition timing was all I could do.

I went out for my second timed run without a passenger, hoping that the small weight saving might help. It didn't.. but I thrashed the car within an inch of it's life and managed to post a time good enough to take out 3rd place over-all. This was very much a surprise as there were nearly sixty cars entered and good deal of them were of a much higher spec than the bucket of bolts I'd been sent out in.

The house is really rocketing along now. There's just 14 days before we move in!
This Friday (5th Feb) we are having a few drinks up at the house to celebrate it being closed in and almost habitable. Feel free to drop in after work if you are so inclined! (83 Kaitangata Crescent, Kelson. Turn left at the 'regional park' car-park and then it's the first driveway on the right)

It's been three months since Targa, and Victor and I are in the process of preparing "Thank you" gifts for our main sponsors. Loosing two months to ill health put a huge hole in our schedule.
My apologies to those that have sponsored us and feel we have just disappeared off the face of the earth. Nothing could be further from the truth.

However I really do need to sit down at some point and detail all we learnt and what we did and didn't do right. It seems so long ago, and all a bit of a haze with me being so sick at the time with both pneumonia and pneumonitis. I'm sure if I get the team together and review our videos and pics we should be able to peace together the whole story.

..Ron