Well the trip to Papworth was a lot better than I though it would be. They all seem really, really nice and were very sympathetic to what I'd been through with Harefield.
After lots of talking and a mini consult between registrar, consultant and surgeon I was lead into a room and told that they were happy to move onto the next stage which is the full assessment. There are some issues with doing just a lung transplant as my plumbing isn't quite normal but it is not impossible. So the plan is to assess me for both lung and heart/lung with a view to putting me on the list for one or the other or both. I am pencilled in for the assessment on 26th November but they are trying to find me an earlier slot as they think I've been messed about enough this year. They have promised they will not let me leave the hospital after the assessment without knowing the result and if that means keeping me in an extra day to repeat a test or do an extra one then that's what they will do. I am glad about this as it means I can ask questions and really understand why a decision has been made, something I didn't get to do with the brief call I got from Harefield.
All in all I'm happy with how things went, I was on top of the world coming out of there as I was convinced they were going to say no there and then. I'm trying very hard to to be excited right now but I can't help myself. Time enough for doubts and worries during the assessment, for now I'm going to enjoy the first real feeling of hope I've had for a long time.
Whilst waiting for my appointment I had the immense pleasure of meeting fellow PH sufferer Kath. We have exchanged comments, views and banter on the PH forums for some time but never met. She is a really lovely lady and has been through a similar journey to myself, especially the problems with the Flolan. Just like me she is unable to increase the dosage she is on now because of nausea. Kath is already on the transplant list and was there for her three monthly check. I was so nervous I couldn't help talking too much and I just hope I didn't bore her silly with my banal chatter.
Back in the real world I'm have a lazy day today, Peter is at work so I've got the house to myself again but no inclination to do anything naughty. Instead I'm going to catch up on some TV and then have a long chat with my mum about yesterday.
In the news I see the X Factor is in trouble again and it is only week one of the live shows. As you know I've only watched about one programme so far this year and completely forgot it was on this weekend so did not see the cause of the row first hand.
From what I understand it has been claimed that Louis was ordered by production staff to go to viewer votes by making it two judges votes all for the two contestants in the sing off.
On the one hand you had Carolynne who by all accounts is a bit of a stunner and can hold a note. On the other you have Rylan who is all flamboyance and emotion but is a bit dodgy when it comes to actually singing. Carolynne got the least viewers votes and was booted off causing her mentor Gary to walk off in disgust and the audience to boo and cat call.
Come on, any X Factor viewer worth their salt should know how it works by now. If you look good and can sing then you may as well pack your bags because despite all outward appearances X Factor is no longer about the singing, that's just too boring. X Factor is primarily about making lots of money for Simon Cowell and beating Strictly Come Dancing in the viewing figures. To succeed on X Factor you must have a heart wrenching back story, throw tantrums, dress oddly and scream in tune, but only just. Rylan ticked all the boxes and was deemed 'great telly', Carolynne just had talent, no contest.
Talking of Strictly I am in seventh heaven that the glitter, false eyelashes and outrageous costumes are back. I absolutely loved the opening shows, there were some surprises and some disappointments and I was totally entranced by it all. I've even recorded it so I can watch it again this afternoon.
The biggest surprise for me, indeed I think for all of us, was Lisa Riley. That girl can move! I also enjoyed Sid Owen, Colin, Kimberley, Jerry Hall and of course Lewis, though I did think the splits and handstand were a bit unnecessary. I can't stand Denise Van Outen so she could dance like an angel and I'd still dislike her. The biggest disappointment and shock was Victoria Pendleton. Nerves took over, the dance went to pieces and she cried her eyes out. Hopefully she will pull herself together and do better next weekend. I'm just glad Craig did get a chance to say anything, I doubt we'd have seen her again if he had.
Ah well the settee and TV remote await, until tomorrow.
After lots of talking and a mini consult between registrar, consultant and surgeon I was lead into a room and told that they were happy to move onto the next stage which is the full assessment. There are some issues with doing just a lung transplant as my plumbing isn't quite normal but it is not impossible. So the plan is to assess me for both lung and heart/lung with a view to putting me on the list for one or the other or both. I am pencilled in for the assessment on 26th November but they are trying to find me an earlier slot as they think I've been messed about enough this year. They have promised they will not let me leave the hospital after the assessment without knowing the result and if that means keeping me in an extra day to repeat a test or do an extra one then that's what they will do. I am glad about this as it means I can ask questions and really understand why a decision has been made, something I didn't get to do with the brief call I got from Harefield.
All in all I'm happy with how things went, I was on top of the world coming out of there as I was convinced they were going to say no there and then. I'm trying very hard to to be excited right now but I can't help myself. Time enough for doubts and worries during the assessment, for now I'm going to enjoy the first real feeling of hope I've had for a long time.
Whilst waiting for my appointment I had the immense pleasure of meeting fellow PH sufferer Kath. We have exchanged comments, views and banter on the PH forums for some time but never met. She is a really lovely lady and has been through a similar journey to myself, especially the problems with the Flolan. Just like me she is unable to increase the dosage she is on now because of nausea. Kath is already on the transplant list and was there for her three monthly check. I was so nervous I couldn't help talking too much and I just hope I didn't bore her silly with my banal chatter.
Back in the real world I'm have a lazy day today, Peter is at work so I've got the house to myself again but no inclination to do anything naughty. Instead I'm going to catch up on some TV and then have a long chat with my mum about yesterday.
In the news I see the X Factor is in trouble again and it is only week one of the live shows. As you know I've only watched about one programme so far this year and completely forgot it was on this weekend so did not see the cause of the row first hand.
From what I understand it has been claimed that Louis was ordered by production staff to go to viewer votes by making it two judges votes all for the two contestants in the sing off.
On the one hand you had Carolynne who by all accounts is a bit of a stunner and can hold a note. On the other you have Rylan who is all flamboyance and emotion but is a bit dodgy when it comes to actually singing. Carolynne got the least viewers votes and was booted off causing her mentor Gary to walk off in disgust and the audience to boo and cat call.
Come on, any X Factor viewer worth their salt should know how it works by now. If you look good and can sing then you may as well pack your bags because despite all outward appearances X Factor is no longer about the singing, that's just too boring. X Factor is primarily about making lots of money for Simon Cowell and beating Strictly Come Dancing in the viewing figures. To succeed on X Factor you must have a heart wrenching back story, throw tantrums, dress oddly and scream in tune, but only just. Rylan ticked all the boxes and was deemed 'great telly', Carolynne just had talent, no contest.
Talking of Strictly I am in seventh heaven that the glitter, false eyelashes and outrageous costumes are back. I absolutely loved the opening shows, there were some surprises and some disappointments and I was totally entranced by it all. I've even recorded it so I can watch it again this afternoon.
The biggest surprise for me, indeed I think for all of us, was Lisa Riley. That girl can move! I also enjoyed Sid Owen, Colin, Kimberley, Jerry Hall and of course Lewis, though I did think the splits and handstand were a bit unnecessary. I can't stand Denise Van Outen so she could dance like an angel and I'd still dislike her. The biggest disappointment and shock was Victoria Pendleton. Nerves took over, the dance went to pieces and she cried her eyes out. Hopefully she will pull herself together and do better next weekend. I'm just glad Craig did get a chance to say anything, I doubt we'd have seen her again if he had.
Ah well the settee and TV remote await, until tomorrow.
I'm so thrilled for you Hazel, I know you've been put through the ringer a fair bit.
ReplyDeleteThe Papworth team really are lovely and they did the same for me when I went there my first time. They told me I wouldn;t leave without knowing whether I was going to go on the list or not because I had done thee whole Harefield thing too. (not to the extent you did) But they told me I would be on the list and I was soooo chuffed. :-)
Soooo pleased for you Hazel I hope the 3 day assessment goes well. If it's anything like mine there will probably be less tests than the Harefield one because they will already have a few results.
Good Luck Hazel
Stacie xoxo
Thanks Stacie, maybe we will meet at clinic too.
ReplyDeleteHazel, you know I'm really pleased for you too. It was really lovely to meet you as we have been chatting together on the various forums for quite a while now. It was great to chat to you face to face and I thought you were very calm and collected considering all that you have had to go through. Wishing you lots of luck with the next step, they give you lots of time and chance to ask all the questions you need during assessment. x
ReplyDelete