OMG! What a day! I don't know where to start.
Let's get the less important news out of the way first. Nearly ran over Richard O'Brian (Riff,Raff in The Rocky Horror Picture Show) on the Brompton Road. He was attempting to cross the road against the lights and I don't know who was more horrified. Him because he realised not only had we nearly killed him but that I'd recognised him too. My husband, who called him a 'burke' not realising who he was or me at the ghastly brown/orange ensemble he was wearing. Anyway all passed peacefully and we continued on our journey. The trip in was so quick and so quiet we arrived at the hospital half an hour early.
Mindful of what happened last time we skipped the coffee and went straight to the appointment. The doctors had just finished their ward round so I was seen straight away by a very nice lady doctor called Dr. Wood. (Why do all my doctors names start with a 'W'? Wort, Wong and now Wood?) She was very sympathetic to the sickness and pain I'd been experiencing and after a quick examination of my swollen joints and a detailed description of what triggered the sickness etc prescribed yet another anti sickness tablet which she has assured me will do the job without ANY side effect. I start these tonight and if it is the old anti sickness tablets causing the pain then things should start easing off by the weekend. If I am still in pain and/or being sick by Friday I am to ring her.
I was then seen by my PH consultant who gave me a thorough examination and told me that as far as the PH was concerned I'm in pretty good shape. He reckons that it might not be the tablet that is causing the problems but the Flolan. I was weighed and found to have dropped another two kilos so I am about six kilos under what I was when I started the treatment. The problem he thinks is that because I am still getting the dose based on the weight I started at, I'm getting a massive hit instead of the gentle increase that was intended. So they recalculated all the doses based on my current weight and have reduced me down to 1.1 for a short period in order to clear all the excess out of my system. From now on I will be having my weight checked every time they intend to change the dose and increase accordingly. It will take longer as they will probably need to recalculate every time but it will be safer for me. He thinks I will be able to ditch the tablets by next week, I have no trouble doing this as I know I'll be fine at the new dose, even at the too high 1.2 I was fine at that level. They are concerned that my breathing might suffer slightly but it will only be temporary and then we will try again. I have a feeling we are going to be yo-yoing for months.
So once all that was sorted out it was on to the news about the transplant. Harefield have studied all my medical notes right up to my last visit to the Brompton and have decided I am not suitable for the heart/lung procedure. Having examined my new MRI and ECHO scans, coupled with the clinical notes they don't think my heart is as badly damaged as everyone first thought. Good news indeed. It is enlarged and the walls have thickened but the pumping action is strong and efficient. It seems that my heart also has good recovery properties. Throughout this last year, whenever my breathing worsened for whatever reason my heart showed significant strain. However when the breathing improved my heart recovered quickly and suffered no permanent damage. The thinking now is that because my heart is strong and has good recovery if the lungs can be replaced then the heart will be able to recover to such a degree as to not cause me any further problems. Complicated or what?
So the next step in the process is that I've got to go and see a cardiologist who will test me to make sure there is no signs of recurring arrhythmia (I had an ablation for this almost two years ago) and they have to be satisfied that it is unlikely to reoccur anytime soon. Once I have been signed off by cardiology it is then over to the lung function department for a battery of tests to find out exactly how bad my lungs are. Then it is off to Harefield for more specialist tests and tissue typing. I could of course fall at any of these hurdles but for now it all sounds pretty positive. I should be getting an appointment for the cardiologist in about two weeks, so not long to wait. At least I have got over the first step.
In other news Andrew is a bag of nerves as his AS results are due out tomorrow. He is off to a party tonight so hopefully that will take his mind off things for a while.
Laurence hit a small hitch with his house sale when the Halifax, who'd already approved his mortgage, decided that they were not going to include his shift allowance after all and demanded more money from him. Laurence finishes his probationary period in September after which his salary will significantly increase. So he was on HR this morning who have agreed to write a letter and fax it to the Halifax stating what Laurence's salary will be from October. Bastards, I hope they choke on it, after they'd agreed his mortgage, again, of course.
Interestingly Laurence has forty rioters from north London staying at his specialist hotel at the moment. And a 'right bunch of sulky gits they are too.' You don't say! I wonder why? Maybe because they really thought they wouldn't get caught or if they did all they'd get is a slap on the wrist. Well surprise, surprise, wrong!
Well it has been a full day. I've been told to take it easy over the next day or two while the meds settle. If all goes well I'll be better by the weekend and back to work on Tuesday. Here's hoping.
Let's get the less important news out of the way first. Nearly ran over Richard O'Brian (Riff,Raff in The Rocky Horror Picture Show) on the Brompton Road. He was attempting to cross the road against the lights and I don't know who was more horrified. Him because he realised not only had we nearly killed him but that I'd recognised him too. My husband, who called him a 'burke' not realising who he was or me at the ghastly brown/orange ensemble he was wearing. Anyway all passed peacefully and we continued on our journey. The trip in was so quick and so quiet we arrived at the hospital half an hour early.
Mindful of what happened last time we skipped the coffee and went straight to the appointment. The doctors had just finished their ward round so I was seen straight away by a very nice lady doctor called Dr. Wood. (Why do all my doctors names start with a 'W'? Wort, Wong and now Wood?) She was very sympathetic to the sickness and pain I'd been experiencing and after a quick examination of my swollen joints and a detailed description of what triggered the sickness etc prescribed yet another anti sickness tablet which she has assured me will do the job without ANY side effect. I start these tonight and if it is the old anti sickness tablets causing the pain then things should start easing off by the weekend. If I am still in pain and/or being sick by Friday I am to ring her.
I was then seen by my PH consultant who gave me a thorough examination and told me that as far as the PH was concerned I'm in pretty good shape. He reckons that it might not be the tablet that is causing the problems but the Flolan. I was weighed and found to have dropped another two kilos so I am about six kilos under what I was when I started the treatment. The problem he thinks is that because I am still getting the dose based on the weight I started at, I'm getting a massive hit instead of the gentle increase that was intended. So they recalculated all the doses based on my current weight and have reduced me down to 1.1 for a short period in order to clear all the excess out of my system. From now on I will be having my weight checked every time they intend to change the dose and increase accordingly. It will take longer as they will probably need to recalculate every time but it will be safer for me. He thinks I will be able to ditch the tablets by next week, I have no trouble doing this as I know I'll be fine at the new dose, even at the too high 1.2 I was fine at that level. They are concerned that my breathing might suffer slightly but it will only be temporary and then we will try again. I have a feeling we are going to be yo-yoing for months.
So once all that was sorted out it was on to the news about the transplant. Harefield have studied all my medical notes right up to my last visit to the Brompton and have decided I am not suitable for the heart/lung procedure. Having examined my new MRI and ECHO scans, coupled with the clinical notes they don't think my heart is as badly damaged as everyone first thought. Good news indeed. It is enlarged and the walls have thickened but the pumping action is strong and efficient. It seems that my heart also has good recovery properties. Throughout this last year, whenever my breathing worsened for whatever reason my heart showed significant strain. However when the breathing improved my heart recovered quickly and suffered no permanent damage. The thinking now is that because my heart is strong and has good recovery if the lungs can be replaced then the heart will be able to recover to such a degree as to not cause me any further problems. Complicated or what?
So the next step in the process is that I've got to go and see a cardiologist who will test me to make sure there is no signs of recurring arrhythmia (I had an ablation for this almost two years ago) and they have to be satisfied that it is unlikely to reoccur anytime soon. Once I have been signed off by cardiology it is then over to the lung function department for a battery of tests to find out exactly how bad my lungs are. Then it is off to Harefield for more specialist tests and tissue typing. I could of course fall at any of these hurdles but for now it all sounds pretty positive. I should be getting an appointment for the cardiologist in about two weeks, so not long to wait. At least I have got over the first step.
In other news Andrew is a bag of nerves as his AS results are due out tomorrow. He is off to a party tonight so hopefully that will take his mind off things for a while.
Laurence hit a small hitch with his house sale when the Halifax, who'd already approved his mortgage, decided that they were not going to include his shift allowance after all and demanded more money from him. Laurence finishes his probationary period in September after which his salary will significantly increase. So he was on HR this morning who have agreed to write a letter and fax it to the Halifax stating what Laurence's salary will be from October. Bastards, I hope they choke on it, after they'd agreed his mortgage, again, of course.
Interestingly Laurence has forty rioters from north London staying at his specialist hotel at the moment. And a 'right bunch of sulky gits they are too.' You don't say! I wonder why? Maybe because they really thought they wouldn't get caught or if they did all they'd get is a slap on the wrist. Well surprise, surprise, wrong!
Well it has been a full day. I've been told to take it easy over the next day or two while the meds settle. If all goes well I'll be better by the weekend and back to work on Tuesday. Here's hoping.
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