I don't think I've ever been so happy to be so sick.
Once I'd been informed that I had macrocytic anemia and that it had been brewing for several weeks, a lot of things started to make sense. The tachycardia, the fever, the fatigue. All are symptoms of lung disease, but together and without an increase in my white cell counts, they are not typical of lymphoma. Phew!
I've just returned from a visit with my #2 GP Kyra Jones and although she is cautious about my decision to run with 60mg of prednisone until I see my haematologist on March 10th, she didn't exactly say no either. (She freely admits that there's not a lot of people that know much about BOOP, least of all her.)
There's no point in trying to treat a BOOP relapse with 40mg, I tried that last month and it didn't work. I wanted to go with 60mg then but the respiratory doctor insisted on 40mg. I think had he looked at the blood work he would not have gone down that route.
Oh well... It's sorted now. I should learn to go with my gut feelings. I knew I had relapsed in January, Knew I should have gone with 60mg.. but at least it's not lymphoma, and my marrow is probably fine.
I'll get my strength back over the next few weeks and then I can start back on the path to weening off pred all over again.
At least it hasn't ended with me in hospital like it did last time no one would listen.
Friday, February 25, 2011
Thursday, February 24, 2011
Back to the Doctor's
Woke this morning with a racing heart. 130bpm just sitting at my desk. A quick check of my temperature revealed that I was running a low grade fever of 38C. Any form of movement had me breaking out in a sweat and my heart rate soaring to a galloping 160. Bugger!
I phoned Kyra and left a message, she phoned back straight away. She said that the low haemoglobin had been there since before I started on the Azathioprine. Double bugger!! That explained the lack of energy over the Xmas break. Why on earth had my respiratory doctor not noted the low count when I saw him a few weeks back?? Surely the lung diffusion rates were meaningless unless he considered them alongside my blood counts and my blood's ability to actually absorb oxygen? Grrr.
I've got another appointment tomorrow with Kyra for a check over. Could be lung infection.. I live in hope.
It would appear that if it were Lymphoma related I'd expect to see an increase in my white cell count, the white cells crowd out the red cells and cause anemia. I don't think that's the case. Another possibility would be bone marrow infiltration of lymphoma... A bone marrow biopsy would show that.. again I have my doubts but will have to wait and see.
Meantime I've been told to stop the Azathioprine immediately (which is what I wanted when I phoned Kyra) and we shall look at the blood counts etc again when I see the Haematologist on March 10th.
I'll have to crank the prednisone back up. But I guess it's better the devil you know...
Annoyingly I have heaps of work booked for next week. I don't like to tell people I'm too sick to fix their cars because often that's the last you hear from them. Might be time to hire a spanner-hand to do the work I can't do (which is almost every thing right now).
Another post after tomorrow's GP visit. :)
I phoned Kyra and left a message, she phoned back straight away. She said that the low haemoglobin had been there since before I started on the Azathioprine. Double bugger!! That explained the lack of energy over the Xmas break. Why on earth had my respiratory doctor not noted the low count when I saw him a few weeks back?? Surely the lung diffusion rates were meaningless unless he considered them alongside my blood counts and my blood's ability to actually absorb oxygen? Grrr.
I've got another appointment tomorrow with Kyra for a check over. Could be lung infection.. I live in hope.
It would appear that if it were Lymphoma related I'd expect to see an increase in my white cell count, the white cells crowd out the red cells and cause anemia. I don't think that's the case. Another possibility would be bone marrow infiltration of lymphoma... A bone marrow biopsy would show that.. again I have my doubts but will have to wait and see.
Meantime I've been told to stop the Azathioprine immediately (which is what I wanted when I phoned Kyra) and we shall look at the blood counts etc again when I see the Haematologist on March 10th.
I'll have to crank the prednisone back up. But I guess it's better the devil you know...
Annoyingly I have heaps of work booked for next week. I don't like to tell people I'm too sick to fix their cars because often that's the last you hear from them. Might be time to hire a spanner-hand to do the work I can't do (which is almost every thing right now).
Another post after tomorrow's GP visit. :)
Wednesday, February 23, 2011
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.
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.
Thursday, February 17, 2011
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.
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.
Monday, February 14, 2011
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
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
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