Home early from the Brompton for a change so a quick update.
Arrived after a quick and pleasant trip ten minutes early for my appointment at the clinic. When I got there the receptionist asked if I'd attended my ECHO appointment. What ECHO appointment? I hadn't been told anything about this but apparently I'd been booked in for nine, two hours earlier. It seems that ECHO thought the clinic were going to notify me while clinic expected the ECHO department to do so. Another appointment is being made and I'm assured I will be notified. I will not be holding my breath.
So with that little crisis over I was weighed and had the usual tests done before being packed off to see Carl, my Nurse Specialist. We had a good long chat and ironed out a few little problems and agreed to leave the increase in dosage for another month or so to give me a chance to put some weight on for transplant. Of course the proviso was that if I suddenly started to go downhill then I was to contact him immediately and we might have to revise that decision. I am happy with this as, although I do feel I've slipped back a bit, I'm not ill, ill, if you know what I mean. I can still do things, it just takes a bit more effort. I was then passed to Lisa, the other Nurse Specialist for a walk test. This is basically to see how far you can walk in six minutes and how the walking affects your oxygen levels and this is where the real fun and games began.
Lisa had a new oxygen sat reader which she popped on my finger at the beginning of the test to get a base line. To everyone's amazement it showed a reading of 97%! I haven't had a reading that high for years. She took the machine off my finger reset it and this time it read 89%. So off I went, up and down the corridor while Lisa shouted encouragement and time checks. I was three minutes in when I started to flag and by four minutes I had to stop and lean against the wall to get my breath back. I did the last two minutes at snails pace. My oxygen levels at the end were 79% so quite a drop.
We were sitting, chatting while I got my breath back and Lisa wrote up her findings when another patient interrupted us. She was a rather large lady, heavily made up and very angry.
"I going out for a fag."
I was rather taken aback by this statement as I couldn't imagine why anyone with PH would want to risk further problems by smoking. However she wasn't finished there and launched into a tirade.
"I hate that Doctor! He's bloody useless. He told me that if I didn't start loosing weight I may as well go back to smoking so that's exactly what I'm going to do."
She stormed off leaving us and everyone else within hearing range completely gob smacked. All that because someone had dared to tell her to loose a few pounds, how ungrateful! These doctors are some of the best in the country and if one of them told me to loose weight I'd do it, not get all upset and use it as an excuse to carry on doing something else that was bad for me. I know this will offend some people but I honestly believe that if you have PH, or any other heart/lung problem for that matter, and you smoke then you deserve everything you get. You also shouldn't be using a service that is doing its best to keep your life as normal as possible when you have no intention of lifting a finger to help yourself.
We saw this woman outside as we left and judging by the number of butts at her feet she'd indulged in more than just one 'fag'.
We called in on the Ace Cafe on the way home for a mug of tea and a bacon butty, delicious, and then hit the motorway and then stopped. The overhead signs were flashing telling us that there were long delays between junctions 14 and 18. Dismayed we struggled on until junction nine and then bailed off to continue our journey on the A5. We put the radio to catch the traffic news to find out what was going on and were bemused when they announced that the M1 was running normally.
Once home a letter was waiting for me, it was the results of on of the extra tests I've had to get done for transplant and much to my relief it was normal. Another hurdle crossed.
So after all that I'm quite tired now so I'm off to spend the rest of the afternoon with my feet up on the settee catching up on some TV recordings.
Next Blog Sunday.
Arrived after a quick and pleasant trip ten minutes early for my appointment at the clinic. When I got there the receptionist asked if I'd attended my ECHO appointment. What ECHO appointment? I hadn't been told anything about this but apparently I'd been booked in for nine, two hours earlier. It seems that ECHO thought the clinic were going to notify me while clinic expected the ECHO department to do so. Another appointment is being made and I'm assured I will be notified. I will not be holding my breath.
So with that little crisis over I was weighed and had the usual tests done before being packed off to see Carl, my Nurse Specialist. We had a good long chat and ironed out a few little problems and agreed to leave the increase in dosage for another month or so to give me a chance to put some weight on for transplant. Of course the proviso was that if I suddenly started to go downhill then I was to contact him immediately and we might have to revise that decision. I am happy with this as, although I do feel I've slipped back a bit, I'm not ill, ill, if you know what I mean. I can still do things, it just takes a bit more effort. I was then passed to Lisa, the other Nurse Specialist for a walk test. This is basically to see how far you can walk in six minutes and how the walking affects your oxygen levels and this is where the real fun and games began.
Lisa had a new oxygen sat reader which she popped on my finger at the beginning of the test to get a base line. To everyone's amazement it showed a reading of 97%! I haven't had a reading that high for years. She took the machine off my finger reset it and this time it read 89%. So off I went, up and down the corridor while Lisa shouted encouragement and time checks. I was three minutes in when I started to flag and by four minutes I had to stop and lean against the wall to get my breath back. I did the last two minutes at snails pace. My oxygen levels at the end were 79% so quite a drop.
We were sitting, chatting while I got my breath back and Lisa wrote up her findings when another patient interrupted us. She was a rather large lady, heavily made up and very angry.
"I going out for a fag."
I was rather taken aback by this statement as I couldn't imagine why anyone with PH would want to risk further problems by smoking. However she wasn't finished there and launched into a tirade.
"I hate that Doctor! He's bloody useless. He told me that if I didn't start loosing weight I may as well go back to smoking so that's exactly what I'm going to do."
She stormed off leaving us and everyone else within hearing range completely gob smacked. All that because someone had dared to tell her to loose a few pounds, how ungrateful! These doctors are some of the best in the country and if one of them told me to loose weight I'd do it, not get all upset and use it as an excuse to carry on doing something else that was bad for me. I know this will offend some people but I honestly believe that if you have PH, or any other heart/lung problem for that matter, and you smoke then you deserve everything you get. You also shouldn't be using a service that is doing its best to keep your life as normal as possible when you have no intention of lifting a finger to help yourself.
We saw this woman outside as we left and judging by the number of butts at her feet she'd indulged in more than just one 'fag'.
We called in on the Ace Cafe on the way home for a mug of tea and a bacon butty, delicious, and then hit the motorway and then stopped. The overhead signs were flashing telling us that there were long delays between junctions 14 and 18. Dismayed we struggled on until junction nine and then bailed off to continue our journey on the A5. We put the radio to catch the traffic news to find out what was going on and were bemused when they announced that the M1 was running normally.
Once home a letter was waiting for me, it was the results of on of the extra tests I've had to get done for transplant and much to my relief it was normal. Another hurdle crossed.
So after all that I'm quite tired now so I'm off to spend the rest of the afternoon with my feet up on the settee catching up on some TV recordings.
Next Blog Sunday.
Hazel I completly agree with you on the smoking issue, words fail me I didn't think anyone with PH would smoke, how wrong could I be!!! And as for losing weight it's the first thing I did when I was diagnosed, some people just can't be helped.
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