All is well

It's been a really good couple of weeks on all fronts in the period since I last posted.
I got over the cold/chest infection I had and the increase in my steroid dose soon fixed the cough and fatigue that had returned.

I can honestly say that I'm feeling the best I have since starting treatment nearly five years ago. I can work around the house and section without any undue fatigue, and other than a few aches and pains that come with the steroids, I feel great!

Over Easter Sarah and I ventured up to Napier for a friends wedding and I indulged in a small quantity of wine for the first time since 2006. I used to really enjoy a good glass or three of wine, usually a Riesling or a Gewurztraminer, and my dwindling wine collection which is now down to around just twenty bottles has remained untouched by myself since that time.

Every time I'd try a wine it would taste bland and un-enjoyable. Suddenly I can taste complex flavours again and if I take a few painkillers before hand, I don't get the associated back pains. :) It's great that once again the little things in life, like good food and wine are able to be enjoyed. I really did think that after nearly two years since I had radiation treatment that the damage to my sense of taste was going to be permanent.

I've almost finished setting up the workshop. I've still yet to find a home for all my stuff and get all the tools and equipment in their final resting places, however I've so far had five cars on the hoist for various work from exhaust systems to suspension repairs.















Would you believe we have been in the new house for nearly two months! There's still heaps to do. Mostly landscaping stuff and laying the courtyard pavers etc. I've just been down in the bush cutting down dead trees with my new chain saw.. fun, fun ;)















The Evo race car has been completely disassembled and the rear end cut off at the windscreen so that new rear bodywork and chassis rails can be fitted. I cannot thank Deane McMillan of D.E McMillan Ltd enough for kindly offering to rebuild the car following it's crash over a bank during the Dunlop Targa 2009. It's a huge job to undertake as a sponsor and I'm very grateful. Please support Deane's business if you require any paint and panel work. They do a fantastic job!

OK.. shall run away again.. It's so good to be back to (semi) normal health again!!!!!

..Ron

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