<b>*warning, long post* sorry for that...</b>
First of all, thanks very much for the message to my previous post. They were very sweet and I know they have helped me.
So i made it home yesterday evening from my 3 days of tests.
On Tuesday i saw my doctor, but only for a minute or so. He asked me how i was and i said I'm still the same really. He said that's what he thought and he said we just have to wait for the test results. My pft's were about the same and I think my chest is clear so i could go.
After that I had the ventilation/perfusion scan. That went ok, of course they couldn't tell me much about it as that is what the doc has to do. They did show me but only very briefly and they said they could see both lungs completely but it was a little irregular.
On Wednesday I had the bike test. I was in there for 2 hours! Now does that sound impressive, I have to say I didn't ride the bike for that long hehe. The doctor how was there was the head of the pft department, he was really nice. He went over a lot of my pft's of the past year. He said that he could see there is the emphysema. But what he could see to was that the curve that shows when I breath in isn't quite right. It's not a nice curve, sometimes it's a little flat, and it has some bumps in it. Some are mostly always in the exact same place. So that shows it's not a technique thing as it's repeatable... Also he didn't like it that you can hear it when i take a deep breath in with my mouth open.
Then they started the process of putting an iv in the artery in my wrist, attaching me to the heart monitor.. I had to sit on the bike, they put the mouthpiece in...
First I had to just sit still and they would monitor my breathing, heart rate and my blood gasses. I think that was about 5 minutes. After that I could start and first ride the bike for 3 minutes without any resistance. After that they put it 10 watt higher every minute. I came to 80 watt! I never would have guessed that. At the end my legs were very sore and breathing was very hard. I might have gone a little bit further but only for about 30 seconds I think. Before I started they had estimate that I would get to 55 liters of something (don't know what they were talking about, maybe breathing per minute) and I only got to 35, while with emphysema people usually get to the estimated level or even higher, like 60 in my case.
They took blood every 2 minutes I think. It showed that I'm hyperventilating, I probably do that a lot. CO2 was low before I started, it was 4 ( don't know what that means really but the doctor said it was low). While riding the bike it went upto 6 but soon after that it dropped down to 4 again. With the blood they also checked lactic acid (is this the right word in English? This is why your legs start to hurt while exercising) That went up soon and a lot too. It's a common side effect with the meds post transplant. My breathing was supposed to pick that up and change so it would get a little better but my breathing didn't change. The doctor said that wasn't good either.
With all the things he found out he thinks that the problem is somewhere central in my chest, like in the bronchii or even my windpipe. He asked if my voice has changed, but it has not. He said he asked because it could even be near my vocal cords. He asked if they had found something with my last bronc, like scar tissue where they attached the lungs to my windpipe or an obstruction somewhere. But they never saw anything, it looked really good, specially the area where they attached the lungs, you couldn't even see it that well. He found that strange as he expected to find something there. But he said it could be higher up. And they never really look at that area with a bronc as they only pass it to go to the lungs.
He was going to talk about this in the meeting with the whole team next week and see what the other think. So these are a few extra pieces to the puzzle
Yesterday I had an ultrasound of my heart. First the man who did it checked all sorts of things. Then he went to talk to a cardiologist and he came back to have a look too. They did some more tests. I don't know what for really. When it was finished the man said he didn't really find something. But that they couldn't see from one side that good. That has to do with the emphysema and also with being post tx as then they can't look through the 'sack around the lungs (don't know what to call that in English)' that well. They did see really well from below, so that was good. They tried to measure something too. He said that there is a way to measure that (don't know what) with ultrasounds but that you would have to have a little leak in a valve, he said lots of people have that, but of course I don't. If you can think of 100 ways for something I will have 101. So I said that was a good thing, he said it was but on the other hand it wasn't because they couldn't do the measurement. While the cardiologist was in I heard them talk about searching for pulmonary hypertension and that they couldn't find hard evidence of that. I don't know if that was because they couldn't see everything and that they couldn't do that one thing.. But I think I will hear that from my own doc too. At least I will ask. I know the man from the ultrasound is not supposed to tell me anything.
I also had the big set of pft's again, we finished in 30 minutes hehe, so it went quickly. Nothing had changed there. Only the pressure, that was better again better than September, the same as it was in August.
I have to go back on the 6th of November. I really hope to get some answers.
That these new pieces will make the puzzle complete.
Or even that they can already see what the picture will be...
I created a blog for this because it has gotten so long (I did it in Word first) but that takes a while to get. So thought I'd post it on the forums..
First of all, thanks very much for the message to my previous post. They were very sweet and I know they have helped me.
So i made it home yesterday evening from my 3 days of tests.
On Tuesday i saw my doctor, but only for a minute or so. He asked me how i was and i said I'm still the same really. He said that's what he thought and he said we just have to wait for the test results. My pft's were about the same and I think my chest is clear so i could go.
After that I had the ventilation/perfusion scan. That went ok, of course they couldn't tell me much about it as that is what the doc has to do. They did show me but only very briefly and they said they could see both lungs completely but it was a little irregular.
On Wednesday I had the bike test. I was in there for 2 hours! Now does that sound impressive, I have to say I didn't ride the bike for that long hehe. The doctor how was there was the head of the pft department, he was really nice. He went over a lot of my pft's of the past year. He said that he could see there is the emphysema. But what he could see to was that the curve that shows when I breath in isn't quite right. It's not a nice curve, sometimes it's a little flat, and it has some bumps in it. Some are mostly always in the exact same place. So that shows it's not a technique thing as it's repeatable... Also he didn't like it that you can hear it when i take a deep breath in with my mouth open.
Then they started the process of putting an iv in the artery in my wrist, attaching me to the heart monitor.. I had to sit on the bike, they put the mouthpiece in...
First I had to just sit still and they would monitor my breathing, heart rate and my blood gasses. I think that was about 5 minutes. After that I could start and first ride the bike for 3 minutes without any resistance. After that they put it 10 watt higher every minute. I came to 80 watt! I never would have guessed that. At the end my legs were very sore and breathing was very hard. I might have gone a little bit further but only for about 30 seconds I think. Before I started they had estimate that I would get to 55 liters of something (don't know what they were talking about, maybe breathing per minute) and I only got to 35, while with emphysema people usually get to the estimated level or even higher, like 60 in my case.
They took blood every 2 minutes I think. It showed that I'm hyperventilating, I probably do that a lot. CO2 was low before I started, it was 4 ( don't know what that means really but the doctor said it was low). While riding the bike it went upto 6 but soon after that it dropped down to 4 again. With the blood they also checked lactic acid (is this the right word in English? This is why your legs start to hurt while exercising) That went up soon and a lot too. It's a common side effect with the meds post transplant. My breathing was supposed to pick that up and change so it would get a little better but my breathing didn't change. The doctor said that wasn't good either.
With all the things he found out he thinks that the problem is somewhere central in my chest, like in the bronchii or even my windpipe. He asked if my voice has changed, but it has not. He said he asked because it could even be near my vocal cords. He asked if they had found something with my last bronc, like scar tissue where they attached the lungs to my windpipe or an obstruction somewhere. But they never saw anything, it looked really good, specially the area where they attached the lungs, you couldn't even see it that well. He found that strange as he expected to find something there. But he said it could be higher up. And they never really look at that area with a bronc as they only pass it to go to the lungs.
He was going to talk about this in the meeting with the whole team next week and see what the other think. So these are a few extra pieces to the puzzle
Yesterday I had an ultrasound of my heart. First the man who did it checked all sorts of things. Then he went to talk to a cardiologist and he came back to have a look too. They did some more tests. I don't know what for really. When it was finished the man said he didn't really find something. But that they couldn't see from one side that good. That has to do with the emphysema and also with being post tx as then they can't look through the 'sack around the lungs (don't know what to call that in English)' that well. They did see really well from below, so that was good. They tried to measure something too. He said that there is a way to measure that (don't know what) with ultrasounds but that you would have to have a little leak in a valve, he said lots of people have that, but of course I don't. If you can think of 100 ways for something I will have 101. So I said that was a good thing, he said it was but on the other hand it wasn't because they couldn't do the measurement. While the cardiologist was in I heard them talk about searching for pulmonary hypertension and that they couldn't find hard evidence of that. I don't know if that was because they couldn't see everything and that they couldn't do that one thing.. But I think I will hear that from my own doc too. At least I will ask. I know the man from the ultrasound is not supposed to tell me anything.
I also had the big set of pft's again, we finished in 30 minutes hehe, so it went quickly. Nothing had changed there. Only the pressure, that was better again better than September, the same as it was in August.
I have to go back on the 6th of November. I really hope to get some answers.
That these new pieces will make the puzzle complete.
Or even that they can already see what the picture will be...
I created a blog for this because it has gotten so long (I did it in Word first) but that takes a while to get. So thought I'd post it on the forums..