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
Wednesday, February 9, 2011
Wednesday, February 2, 2011
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.
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.
Thursday, January 13, 2011
CT scan shows no significant changes.
I just got back from my appointment with the haematologist. Dr D'Souza is away on holiday so I met with one of the registrars. He was very good and seemed to know a lot about my respiratory disease as well, so that helped build my confidence in him.
The written report for Monday's CT scan shows that none of the enlarged lymph nodes that appear on previous scans have changed significantly. Some have even shrunk slightly.
What this means is that it's "status Quo" for now. It's been eight months since I was advised of several enlarged lymph nodes in my pelvic region. At that time the doctors were very grim and suggested that I had relapsed and that there were very few treatment options available to me.
With no change in such a long period of time, it's fairly safe to say that the nodes are indolent and may not develop into anything significant at all. Or if they do it will be very slowly. This opens up other treatment options in the future should they be required.
So once again it's good news. It would have been better if there were no signs of any enlarged nodes, and everything had shrunk away, but the fact that nothing is growing in a hurry is pretty darn good ! I'll take that with open arms. I think after 8 months I might even use the word "Dormant".
Just how much of that is attributable to the masking effect of prednisone I don't know, but it seems odd that nodes could grow while under the highest dose of pred a year ago and then be held in check by lower doses now.
It's almost two years since I had the Stem Cell Transplant (otherwise known as a Bone Marrow Transplant). That's a significant milestone. Time to celebrate. I'll have one beer. :)
Cheers! ...Ron
The written report for Monday's CT scan shows that none of the enlarged lymph nodes that appear on previous scans have changed significantly. Some have even shrunk slightly.
What this means is that it's "status Quo" for now. It's been eight months since I was advised of several enlarged lymph nodes in my pelvic region. At that time the doctors were very grim and suggested that I had relapsed and that there were very few treatment options available to me.
With no change in such a long period of time, it's fairly safe to say that the nodes are indolent and may not develop into anything significant at all. Or if they do it will be very slowly. This opens up other treatment options in the future should they be required.
So once again it's good news. It would have been better if there were no signs of any enlarged nodes, and everything had shrunk away, but the fact that nothing is growing in a hurry is pretty darn good ! I'll take that with open arms. I think after 8 months I might even use the word "Dormant".
Just how much of that is attributable to the masking effect of prednisone I don't know, but it seems odd that nodes could grow while under the highest dose of pred a year ago and then be held in check by lower doses now.
It's almost two years since I had the Stem Cell Transplant (otherwise known as a Bone Marrow Transplant). That's a significant milestone. Time to celebrate. I'll have one beer. :)
Cheers! ...Ron
Friday, January 7, 2011
Squeaky wheel..
If there is one thing that I have learned from five years of dealings with the public health service in this country (and it possibly relates to any country for that matter) and that is that the squeaky wheel gets the oil.
If you feel you have somehow dropped off the radar or are waiting too long for a referral, an appointment, surgery or a scan. Say so! Don't just sit around and presume that someone is on to it. They probably aren't. People most certainly have died waiting for treatment in this country.
On Wednesday after my lung function tests I physically visited the Blood and Cancer Centre reception and voiced my concerns about the three month wait to see my Haematologist, and the overdue CT scan.
I was immediately booked in to see someone in the Haematology dept next Thursday, and by 8am the next day the radiology dept had phoned me, apologised and scheduled my CT scan for next Monday afternoon, just five days after asking. The system works, you just need to know that it needs a bit of a push start sometimes.
I'll post once I know the results of the CT. Fingers crossed for no further growth of the enlarged lymph nodes discovered in my pelvis on the last scans.. Or better still nothing to see at all !! :)
..Ron
If you feel you have somehow dropped off the radar or are waiting too long for a referral, an appointment, surgery or a scan. Say so! Don't just sit around and presume that someone is on to it. They probably aren't. People most certainly have died waiting for treatment in this country.
On Wednesday after my lung function tests I physically visited the Blood and Cancer Centre reception and voiced my concerns about the three month wait to see my Haematologist, and the overdue CT scan.
I was immediately booked in to see someone in the Haematology dept next Thursday, and by 8am the next day the radiology dept had phoned me, apologised and scheduled my CT scan for next Monday afternoon, just five days after asking. The system works, you just need to know that it needs a bit of a push start sometimes.
I'll post once I know the results of the CT. Fingers crossed for no further growth of the enlarged lymph nodes discovered in my pelvis on the last scans.. Or better still nothing to see at all !! :)
..Ron
Wednesday, January 5, 2011
Lung Function much improved!
Well it certainly pays to take responsibility for your health and treatment.
The decision to nearly triple my prednisone last week when I noticed a sudden decline in my health and the onset of a low grade fever was the right thing to do.
Today I had a lung function test and all parameters were greatly improved over the previous test, including the all important diffusion test, which measures how well the lungs actually get oxygen into the blood. (to the respiratory techies out there..yeah I know I've over simplified that description)
Sarah and I have done the hard walk (read "grunt") to the top of our hill four times in the last five days.
It's part of the Belmont regional park network of tracks and it's a thirty minute steep walk to the top gate.
Each time I've done it it's become easier. Must be doing wonders for my heart and lungs.
I've now got a new respiratory doctor, the previous one has now moved on to another field of medicine elsewhere in the hospital. I brought the new one up to speed today and asked if he agreed with my emergency prednisone regime. He did.
What is really good is that, like me, he doesn't like me being on prednisone for so long and agrees that I need to be off it. To that end he is going to see if there is an alternative treatment we can try.
I popped up to the Blood and Cancer center after my respiratory appointment and prepared to thump the counter over my non-booked CT scan and three month delay in seeing the haematologist. I didn't have to thump.
The young lady behind the counter was most helpful, found me an appointment for next week and promised to chase up the radiology people about my scan and phone me tomorrow.
What's good there is that I can now book a private CT san if I have to and have the results back in time for next weeks appointment. It's a win-win situation. I just want to know one way or another if this darn skin itch is Hodgkins or something else. Either way I can focus on either getting treatment or relaxing.
..Ron
The decision to nearly triple my prednisone last week when I noticed a sudden decline in my health and the onset of a low grade fever was the right thing to do.
Today I had a lung function test and all parameters were greatly improved over the previous test, including the all important diffusion test, which measures how well the lungs actually get oxygen into the blood. (to the respiratory techies out there..yeah I know I've over simplified that description)
Sarah and I have done the hard walk (read "grunt") to the top of our hill four times in the last five days.
It's part of the Belmont regional park network of tracks and it's a thirty minute steep walk to the top gate.
Each time I've done it it's become easier. Must be doing wonders for my heart and lungs.
I've now got a new respiratory doctor, the previous one has now moved on to another field of medicine elsewhere in the hospital. I brought the new one up to speed today and asked if he agreed with my emergency prednisone regime. He did.
What is really good is that, like me, he doesn't like me being on prednisone for so long and agrees that I need to be off it. To that end he is going to see if there is an alternative treatment we can try.
I popped up to the Blood and Cancer center after my respiratory appointment and prepared to thump the counter over my non-booked CT scan and three month delay in seeing the haematologist. I didn't have to thump.
The young lady behind the counter was most helpful, found me an appointment for next week and promised to chase up the radiology people about my scan and phone me tomorrow.
What's good there is that I can now book a private CT san if I have to and have the results back in time for next weeks appointment. It's a win-win situation. I just want to know one way or another if this darn skin itch is Hodgkins or something else. Either way I can focus on either getting treatment or relaxing.
..Ron
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