Had an appointment with my consultant last Wednesday.
Normally my friend has been taking me but she had to work so I decided to give it a try myself. I needn't have worried I was fine. :)
We arrived in good time and was called through after a little wait.
He said that the X-Ray showed that the shadow was still there so he wants me to have another CT Scan on August 1st.
I asked him his opinion on stem cell therapy and he says what they all say that stem cells is the way forward but that we are not there yet. It could take another 10/15 yrs. :/
I also asked about my FEV1 which is at 10% and he says the last one was recorded in 2009 so I am arranging another one to coincide after rehab has finished at the end of August.
We finished by him asking for the website I showed him at the last consultation regarding COPD and taking daily antibiotics as he had mislaid it and he gave me his secretaries email address.
In all it was a productive consultation, however at this stage I sm no further forward. *sigh*. Patience Jools patience!
Sunday, July 17, 2011
Friday, July 15, 2011
Rehab Starts In Earnest
The day was warm and sunny with a cooling breeze as we motored over for my next morning of Pulmonary Rehab. I was a little fearful that we were slightly late but I needn't have worried, everyone was there but not properly started.
I was hit by the stench of somebodies perfume and recoiled and had to say something. They quickly moved me next to the open outside door and Jon said that it had even got to the back of his throat. You would have thought folk would have more sense but oh well.
Anil the physio along with Gemma were going along taking everyone's SAT's and heart rate and giving them a clipboard and pen with a sheet printed with columns and rows of a list of the mornings exercises. We had to put the date, SAT's and Heart rate and the number on the Borg scale that we felt regarding how breathless we felt in the first column. As we completed each task we entered at the side of that in the same column the number of repeats we did in the 2 minutes allowed us. Thus we could see at a glance at the end of the six weeks how we had progressed week by week if at all.
Anil explained that it was important that we didn't go past the severe stage of breathlessness and a good way of telling if we wern't sure was if we had trouble saying a sentence, e.g. "the cat in the hat came back" lol. If you had to take a breath in between the words then that was above severe and to stop.
That being said they decided to make my first exercise throwing the ball and that so happened to be right by the door where I was sat. lol. Basically I had to throw a soccer ball at the wall and catch it. I was to do as many repetitions in the 2 mins as I liked and to pace myself so I didn't burn out in the first minutes. Take a breath and throw...catch. Take a breath etc.... Jon got out his camera, I gave Oliver the clipboard and asked him to count and Gemma said go and we were away. Pretty easy that one I got 34 although I was glad when the time was up.
Next up was sits to stands. Not one of my favourites but at least I was getting it over with. I took it very steady. I took a breath in and let it out...stood. Breath in and out sat...etc. I did 5 I was SOB but next time I will try to do a few more.
Next came arm raises at the side (I was told not to use the weights yet) I did a very respectable 22.
On to trunk rotations. Sit with hands on hips and face forward then twist head and body to first one side and then the other. 37
Then to my least favourite step ups which they very kindly lowered for me. I was allowed to hold onto a chair placed at the side. We were to step and then down with right leg and then the same with the left leg, that way we were assured that each leg got an equal work out. 4
Wall press's next. Stand facing the wall place hands on wall and lean into wall. Repeat. 25
Marching on the spot 45
Arm curls 23
Bike. Which I missed this time
In the future we would at this point do a walk for up to 10 minutes if able and then break for tea or coffee while we had a talk. However because we had a late start while each exercise was explained to us we left it out.
While we drank a much needed beverage Anil gave us a talk on the facts about our condition which I will cover later.
I have to also say that I look and feel horrible. Years of steroid medication, bad diet and no puff left to brush let alone wash my hair. A year ago I was malnourished now I am just into the over weight category. I was not even this big at full term while pregnant. So be kind to me I am only putting these pics out in the hope they will motivate others and after all, the fact is I am still breathing. ;)
I was hit by the stench of somebodies perfume and recoiled and had to say something. They quickly moved me next to the open outside door and Jon said that it had even got to the back of his throat. You would have thought folk would have more sense but oh well.
Anil the physio along with Gemma were going along taking everyone's SAT's and heart rate and giving them a clipboard and pen with a sheet printed with columns and rows of a list of the mornings exercises. We had to put the date, SAT's and Heart rate and the number on the Borg scale that we felt regarding how breathless we felt in the first column. As we completed each task we entered at the side of that in the same column the number of repeats we did in the 2 minutes allowed us. Thus we could see at a glance at the end of the six weeks how we had progressed week by week if at all.
Anil explained that it was important that we didn't go past the severe stage of breathlessness and a good way of telling if we wern't sure was if we had trouble saying a sentence, e.g. "the cat in the hat came back" lol. If you had to take a breath in between the words then that was above severe and to stop.
That being said they decided to make my first exercise throwing the ball and that so happened to be right by the door where I was sat. lol. Basically I had to throw a soccer ball at the wall and catch it. I was to do as many repetitions in the 2 mins as I liked and to pace myself so I didn't burn out in the first minutes. Take a breath and throw...catch. Take a breath etc.... Jon got out his camera, I gave Oliver the clipboard and asked him to count and Gemma said go and we were away. Pretty easy that one I got 34 although I was glad when the time was up.
Next up was sits to stands. Not one of my favourites but at least I was getting it over with. I took it very steady. I took a breath in and let it out...stood. Breath in and out sat...etc. I did 5 I was SOB but next time I will try to do a few more.
Next came arm raises at the side (I was told not to use the weights yet) I did a very respectable 22.
On to trunk rotations. Sit with hands on hips and face forward then twist head and body to first one side and then the other. 37
Then to my least favourite step ups which they very kindly lowered for me. I was allowed to hold onto a chair placed at the side. We were to step and then down with right leg and then the same with the left leg, that way we were assured that each leg got an equal work out. 4
Wall press's next. Stand facing the wall place hands on wall and lean into wall. Repeat. 25
Marching on the spot 45
Arm curls 23
Bike. Which I missed this time
In the future we would at this point do a walk for up to 10 minutes if able and then break for tea or coffee while we had a talk. However because we had a late start while each exercise was explained to us we left it out.
While we drank a much needed beverage Anil gave us a talk on the facts about our condition which I will cover later.
I have to also say that I look and feel horrible. Years of steroid medication, bad diet and no puff left to brush let alone wash my hair. A year ago I was malnourished now I am just into the over weight category. I was not even this big at full term while pregnant. So be kind to me I am only putting these pics out in the hope they will motivate others and after all, the fact is I am still breathing. ;)
Monday, July 11, 2011
Early morning appointments are the very devil to me, however I heaved my aching body into a sitting position and tried to focus and wake up. I was spending my morning at my first Pulmonary Rehabilitation aka rehab. and had to be there in 3 hours. Easy you might say. Yes if you are not me. I know it will take me at least an hour to get me out of the house and drive the few miles to the next village where it will be held. In the meantime I have to wake up, wash, eat breakfast and get dressed.
All that being completed I head out down the stairlift out the house to the car. My husband Jon and my son Oliver have come with me to help me to accomplish this feat and we make it to the venue in good time. They wheel me in to find 4 others there who with me will be weighed and had vitals taken, medication noted and about 3 forms to fill in related to how we feel at certain situations in the course of any given day. All useful for their research I guess. The people running it was Anil who is a senior respiratory physiotherapist, and two nurses, Gemma and Wendy.
The last thing was a walk that we had to do, where we set off between 2 cones when the beeper sounded and turned back and walked the other way. If the beeper hadn't sounded again we had to wait until it did before setting off again. The idea was to see how much we could do in 6 minutes. I started out with my A frame rollater and the first there and back was okay but I was starting to get that feeling and I knew the number of steps I could do was numbered from there on. I got to the cone at half way point and made the mistake at looking down at the oximeter they had put on my finger at the start. It read 83 and I wasn't happy, I probably panicked after that because I asked for a chair and it was 4 mins before I was capable of talking.
Its pretty pathetic that I only managed one and a half circuits which I don't know the correct length but is approx. 30ft. They then explained that this was not so much a test but a guide. They will get me to do the same thing at the end of the six weeks exercises and see if I have improved at all. All I can say is I better! None of this is fun for me. I hurt and on the verge of panic but I have to get past this, I have to keep telling myself that I will be breathing better the more I move...as Gemma says all the time .."think lungs"
Monday we start in earnest....exercising!
All that being completed I head out down the stairlift out the house to the car. My husband Jon and my son Oliver have come with me to help me to accomplish this feat and we make it to the venue in good time. They wheel me in to find 4 others there who with me will be weighed and had vitals taken, medication noted and about 3 forms to fill in related to how we feel at certain situations in the course of any given day. All useful for their research I guess. The people running it was Anil who is a senior respiratory physiotherapist, and two nurses, Gemma and Wendy.
The last thing was a walk that we had to do, where we set off between 2 cones when the beeper sounded and turned back and walked the other way. If the beeper hadn't sounded again we had to wait until it did before setting off again. The idea was to see how much we could do in 6 minutes. I started out with my A frame rollater and the first there and back was okay but I was starting to get that feeling and I knew the number of steps I could do was numbered from there on. I got to the cone at half way point and made the mistake at looking down at the oximeter they had put on my finger at the start. It read 83 and I wasn't happy, I probably panicked after that because I asked for a chair and it was 4 mins before I was capable of talking.
Its pretty pathetic that I only managed one and a half circuits which I don't know the correct length but is approx. 30ft. They then explained that this was not so much a test but a guide. They will get me to do the same thing at the end of the six weeks exercises and see if I have improved at all. All I can say is I better! None of this is fun for me. I hurt and on the verge of panic but I have to get past this, I have to keep telling myself that I will be breathing better the more I move...as Gemma says all the time .."think lungs"
Monday we start in earnest....exercising!
Wednesday, July 6, 2011
Whine Anyone?
I am going to have my whine today.
I had the year from hell last year, I spent 6 months of it mostly lying down even to eat because I was too weak to sit up. I won't go into detail but it came to a head when I was called for transplant assessment.
That was back in Oct/Nov. Shortly after that, despite the fact that they found a shadow on my lung I started to feel stronger.
The transplant co-ordinator had stressed to me that my consultant would look more favourably on me, if when next I saw him, I could walk from the waiting area into his office. I decided that this was going to be my mission and instead of using the commode like I had been doing I was walking passed it and going to the bathroom.
By the January I was looking and feeling much better. I was eating more and breathing better. They wanted to do a bronchoscopy to find out what this shadow was but they were loathe to sedate me as they thought that my lungs would not stand it. I was sent for a lung function test and I was happy to hear that I had made the leap from 92% to 96% and could be sedated after all.
Since then until now I have suffered three bouts of Pleurisy that have kept me pretty sedentary and I stopped visiting the bathroom or doing anything really until quite recently.
Okay so my SAT's are between 93 and 97 on 2L of oxygen on a good day. Gemma my nurse has been coming and I have managed to get downstairs and completed all but the walking exercises to prepare for the Pulmonary Rehabilitation that starts at the end of this week. She has stressed to me that I won't be holding back the others, that I can work at my own pace which is fine, but I am just having creeping doubts about whether I can really do this or if I am just kidding myself. I want this. I asked for this. Everyone is behind me, there is nothing stopping me except my worn out lungs and myself.
I suppose it's the whole logistics of getting there and being on time. It took me an hour and a quarter just to wash my hair. I started by thinking I could just do it quickly by kneeling at the side of the bath and bending over. I got down on my knees and I couldn't get up! Seriously I had NOTHING that I could use to get me in a standing position. How Jon managed to lift me is beyond me cos I was a dead weight and he is still suffering from his op. It brought it home rather brutally what a worn out creature I was.
I have to have a plan for Friday when they start or I will be arriving as they are leaving. I have to drive myself there and find a parking place. It all sounds like a total nightmare and I can feel myself panicking already.
I had the year from hell last year, I spent 6 months of it mostly lying down even to eat because I was too weak to sit up. I won't go into detail but it came to a head when I was called for transplant assessment.
That was back in Oct/Nov. Shortly after that, despite the fact that they found a shadow on my lung I started to feel stronger.
The transplant co-ordinator had stressed to me that my consultant would look more favourably on me, if when next I saw him, I could walk from the waiting area into his office. I decided that this was going to be my mission and instead of using the commode like I had been doing I was walking passed it and going to the bathroom.
By the January I was looking and feeling much better. I was eating more and breathing better. They wanted to do a bronchoscopy to find out what this shadow was but they were loathe to sedate me as they thought that my lungs would not stand it. I was sent for a lung function test and I was happy to hear that I had made the leap from 92% to 96% and could be sedated after all.
Since then until now I have suffered three bouts of Pleurisy that have kept me pretty sedentary and I stopped visiting the bathroom or doing anything really until quite recently.
Okay so my SAT's are between 93 and 97 on 2L of oxygen on a good day. Gemma my nurse has been coming and I have managed to get downstairs and completed all but the walking exercises to prepare for the Pulmonary Rehabilitation that starts at the end of this week. She has stressed to me that I won't be holding back the others, that I can work at my own pace which is fine, but I am just having creeping doubts about whether I can really do this or if I am just kidding myself. I want this. I asked for this. Everyone is behind me, there is nothing stopping me except my worn out lungs and myself.
I suppose it's the whole logistics of getting there and being on time. It took me an hour and a quarter just to wash my hair. I started by thinking I could just do it quickly by kneeling at the side of the bath and bending over. I got down on my knees and I couldn't get up! Seriously I had NOTHING that I could use to get me in a standing position. How Jon managed to lift me is beyond me cos I was a dead weight and he is still suffering from his op. It brought it home rather brutally what a worn out creature I was.
I have to have a plan for Friday when they start or I will be arriving as they are leaving. I have to drive myself there and find a parking place. It all sounds like a total nightmare and I can feel myself panicking already.
Wednesday, June 22, 2011
COPD Exercise Programme
Gemma has just been.
I was ready and waiting just like she asked me to be. In fact she was a little late. lol. After a little chit chat we got down to the job in hand. I gave Jon the iPad so he could take some shots of the proceedings and we started off with the first exercise...
Home Exercise Programme
1). Sit to stands - Inhale stand - Exhale sit. Repeat. I managed 4
After the first exercise I was shown a Borg scale and asked how breathless I felt and told to keep my breathing in the moderate to severe scale while exercising.
2). Lateral Arm Raises - arms by the side, lift both arms to shoulder height. Repeat. I managed 10 (I probably could have managed more but she said stick to 10 for today)
3). Biceps curls - with arms in lap bend both elbows to shoulder - repeat Again I just did 10 for today. (I find this one the easiest)
4). Marching on the spot - x 10 today
5). Sit and straighten knee curling foot upwards - x 10 today
6). Wall Press - place hands on wall at shoulder height and lean into wall x 10 ( I only managed 9 today)
7). Step Ups - step up and then down with same leg and repeat with the other. I only managed 5 (this is the hardest one for me)
After I had done that she put the oximeter on my finger and it read 87 but within a minute had returned to my resting rate of 94.
There is also a walk but we left that for this week.
We have scheduled 2 dates for next week. Wednesday and Friday.
Overall I am pleased at how it went. Considering that I get zero exercise at all, I was not too out of breath, as I feared I might. We took it as baby steps so I didn't get over anxious and I was allowed to rest well in between, so I could give it my all to each individual exercise. I definitely feel better and breathing well for completing this and looking forward to her coming again. In the meantime she wants me coming downstairs daily and moving around a little. That should strengthen me more for when I go to rehab. I also intend to do some of my own exercises in-between her visits.
I was ready and waiting just like she asked me to be. In fact she was a little late. lol. After a little chit chat we got down to the job in hand. I gave Jon the iPad so he could take some shots of the proceedings and we started off with the first exercise...
Home Exercise Programme
1). Sit to stands - Inhale stand - Exhale sit. Repeat. I managed 4
After the first exercise I was shown a Borg scale and asked how breathless I felt and told to keep my breathing in the moderate to severe scale while exercising.
2). Lateral Arm Raises - arms by the side, lift both arms to shoulder height. Repeat. I managed 10 (I probably could have managed more but she said stick to 10 for today)
3). Biceps curls - with arms in lap bend both elbows to shoulder - repeat Again I just did 10 for today. (I find this one the easiest)
4). Marching on the spot - x 10 today
5). Sit and straighten knee curling foot upwards - x 10 today
6). Wall Press - place hands on wall at shoulder height and lean into wall x 10 ( I only managed 9 today)
7). Step Ups - step up and then down with same leg and repeat with the other. I only managed 5 (this is the hardest one for me)
After I had done that she put the oximeter on my finger and it read 87 but within a minute had returned to my resting rate of 94.
There is also a walk but we left that for this week.
We have scheduled 2 dates for next week. Wednesday and Friday.
Overall I am pleased at how it went. Considering that I get zero exercise at all, I was not too out of breath, as I feared I might. We took it as baby steps so I didn't get over anxious and I was allowed to rest well in between, so I could give it my all to each individual exercise. I definitely feel better and breathing well for completing this and looking forward to her coming again. In the meantime she wants me coming downstairs daily and moving around a little. That should strengthen me more for when I go to rehab. I also intend to do some of my own exercises in-between her visits.
Thursday, April 21, 2011
A question
Jools can i ask you something? I've been thinking about you, how quick did it take your COPD to progress, how long was the progression, hope you don't mind, I think it would help to have some idea?
************
I have had this thing for over 10 years only I kept it well hidden because I was a smoker who didn't want to quit. I was diagnosed in 2006 when they called me in for a routine asthma check and I couldn't get the thing to budge when I blew on it. That's when they sent the COPD nurse to my home to help me quit smoking, but by that time I had stopped walking anywhere.
I used the shopping trolley like a Zimmer frame or the Internet to shop. Housework became more and more impossible, I can remember scrubbing some outdoor table once and being too puffed out to continue after only half a minute. It got to the point where the only place I could get any relief from pain and discomfort was my bed, so once we got a wireless router I took the laptop and made a life for myself up here in my bedroom.
I have been on two rehabs so far. They have tried everything to get me to move but nothing works. I told my COPD nurse Jacki about Geoff, and she said, great if he can get you moving it will be a miracle. lol.
Truth is I think I have given up. Even the transplant team have lost interest in me. I while away my days...correction my nights talking to my friends on the Internet and reading and learning stuff that I can either use or pass on. I don't leave this room unless Lola comes to see me and that is usually every 2 months or so. I am too weak to pick her up or hold her so I can only watch.
What more can I say? With every time I get sick I lose a bit more lung capacity.
Why don't I exercise more, go back to rehab, try harder? Simple answer hyperventilation. I still cannot find what is causing it and when it is happening, in full throw I can do nothing. It stopped briefly for over 3months just recently. I felt so much better, my sats had gone up, I could walk to the toilet rather than use my commode by the bed. I was thinking positively and was so much happier.
Now they have returned and it is as before and I am so disappointed because the good weather is here and I want to go out and enjoy it. It is so frustrating.
Does that answer your question? Sorry for wittering on. lol
************
I have had this thing for over 10 years only I kept it well hidden because I was a smoker who didn't want to quit. I was diagnosed in 2006 when they called me in for a routine asthma check and I couldn't get the thing to budge when I blew on it. That's when they sent the COPD nurse to my home to help me quit smoking, but by that time I had stopped walking anywhere.
I used the shopping trolley like a Zimmer frame or the Internet to shop. Housework became more and more impossible, I can remember scrubbing some outdoor table once and being too puffed out to continue after only half a minute. It got to the point where the only place I could get any relief from pain and discomfort was my bed, so once we got a wireless router I took the laptop and made a life for myself up here in my bedroom.
I have been on two rehabs so far. They have tried everything to get me to move but nothing works. I told my COPD nurse Jacki about Geoff, and she said, great if he can get you moving it will be a miracle. lol.
Truth is I think I have given up. Even the transplant team have lost interest in me. I while away my days...correction my nights talking to my friends on the Internet and reading and learning stuff that I can either use or pass on. I don't leave this room unless Lola comes to see me and that is usually every 2 months or so. I am too weak to pick her up or hold her so I can only watch.
What more can I say? With every time I get sick I lose a bit more lung capacity.
Why don't I exercise more, go back to rehab, try harder? Simple answer hyperventilation. I still cannot find what is causing it and when it is happening, in full throw I can do nothing. It stopped briefly for over 3months just recently. I felt so much better, my sats had gone up, I could walk to the toilet rather than use my commode by the bed. I was thinking positively and was so much happier.
Now they have returned and it is as before and I am so disappointed because the good weather is here and I want to go out and enjoy it. It is so frustrating.
Does that answer your question? Sorry for wittering on. lol
Thursday, February 3, 2011
I am an idiot
Its been a weird day. I say day but really I should say evening. I didn’t wake up until after 4pm. Apparently I had a conversation with Jon on the phone around 1ish but I don’t recall any of that. To be fair I didn’t go to sleep until after 6am. So I have had about 10hrs which is pretty average for me.
I am an idiot, I thought I was suffering with hypercapnea but really I just needed to put my oxygen levels back to 2L.
I had been breathing so much better lately and my lung function test 2 weeks ago confirmed it. Because of this there was some talk that I would have a review of my oxygen intake and being the sneaky bitch that I am I had asked Jon to just tweak the knob a teeny bit down every day, thinking that when they put it down themselves it will already be there and I would have been used to it.
Then I got Pleurisy didn’t I!
What with the lung cancer scare and the pain and worry I completely forgot. It is now back at 2L and I feel better than I did. Not great but better. Note to self don’t try and run before you can walk...literally.
I need to ring Jacky my COPD community nurse tomorrow and ask her to call on me. There is the medication to change and I also want to discuss with her possibly changing my consultant.
Thats it for now, I need to sleep now.
I am an idiot, I thought I was suffering with hypercapnea but really I just needed to put my oxygen levels back to 2L.
I had been breathing so much better lately and my lung function test 2 weeks ago confirmed it. Because of this there was some talk that I would have a review of my oxygen intake and being the sneaky bitch that I am I had asked Jon to just tweak the knob a teeny bit down every day, thinking that when they put it down themselves it will already be there and I would have been used to it.
Then I got Pleurisy didn’t I!
What with the lung cancer scare and the pain and worry I completely forgot. It is now back at 2L and I feel better than I did. Not great but better. Note to self don’t try and run before you can walk...literally.
I need to ring Jacky my COPD community nurse tomorrow and ask her to call on me. There is the medication to change and I also want to discuss with her possibly changing my consultant.
Thats it for now, I need to sleep now.
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