Well I'm home my CRP had started to come down and my temperature. The doctors still have no idea what caused it but I definatley had some sort of infection or virus. But all is well now and I'm looking forward to going to watch Britans got talent auditions tomorrow. thanks to robbie for updating my blog while I was in hospital.
Also on the transplant part of things, the transplant consultant rang and said he would like to carry on goign ahead but I need to go back in for another assesment and have more tests and would try and get me in asap but at the moment people who where reffered in september are being given dates for march. But they are trying to fit me when they have a space. It's all a waiting game!
that's all for now folks!
Friday, 29 January 2010
Sunday, 24 January 2010
Ayesha Needs Some Positive Thoughts
Hi Everyone.
It's Robbie. I just wanted to update you all on how Ayesha is doing at the moment.
She was taken into hospital on the 23rd of January. She woke up with a temperature of 40 and she hadn't been able to stop vomiting.
She was given Paracetamol, Fluids and she was put on Gentamycin and Ceftazidime. Ayesha is certain that is is not her chest as her SATs and breathing are normal. She thinks it might be a stomach bug.
Her main concern is being able to go to Britain's Got Talent, Please send her positive thoughts and prayers. She really doesn't want to miss BGT.
Today she is still waiting for bloods to come back but she is certain it is not her chest. I will inform you all of any test results ASAP.
Her temperature keeps shooting up after 4 hours post paracetamol. She is still vomiting non stop and she has not managed to eat or drink in the past two days as she cannot stop vomiting. She was given Ondansetron which has had no effect. She was then given Cyclizine IV and that has seems to be having some affect but she is getting blury vision as a result.
Her Cannula has now became unusable, this cannula took 3 attempts to get in and was accessed in the back of her wrist. She is now waiting for a Doctor to put another one in.
Ayesha really needs your thoughts and prayers now. Please send her some positive thoughts. You can leave any messages you have for her in the comments section on this blog post or you can send her a message on facebook by clicking here.
Get well soon Ayesha x
It's Robbie. I just wanted to update you all on how Ayesha is doing at the moment.
She was taken into hospital on the 23rd of January. She woke up with a temperature of 40 and she hadn't been able to stop vomiting.
She was given Paracetamol, Fluids and she was put on Gentamycin and Ceftazidime. Ayesha is certain that is is not her chest as her SATs and breathing are normal. She thinks it might be a stomach bug.
Her main concern is being able to go to Britain's Got Talent, Please send her positive thoughts and prayers. She really doesn't want to miss BGT.
Today she is still waiting for bloods to come back but she is certain it is not her chest. I will inform you all of any test results ASAP.
Her temperature keeps shooting up after 4 hours post paracetamol. She is still vomiting non stop and she has not managed to eat or drink in the past two days as she cannot stop vomiting. She was given Ondansetron which has had no effect. She was then given Cyclizine IV and that has seems to be having some affect but she is getting blury vision as a result.
Her Cannula has now became unusable, this cannula took 3 attempts to get in and was accessed in the back of her wrist. She is now waiting for a Doctor to put another one in.
Ayesha really needs your thoughts and prayers now. Please send her some positive thoughts. You can leave any messages you have for her in the comments section on this blog post or you can send her a message on facebook by clicking here.
Get well soon Ayesha x
Monday, 4 January 2010
Transplant clinic
Well I have just been to transplant clinic, Unfortunately I am not listed... yet but I didn't expect to be, we discussed the things that posed added problems with my underlying condtion, they transplant team are willing to take a risk they said even if they are 80% sure that it is the right way to go they will take that risk if I am willing to. They said they obviously have some hope it could work out and could be listed as otherwise they wouldn't be assesing me. one the things they are worried about and they no means of finding out is will my wegener's granulomatosis attack my new lungs and in how long a week, a year 20 years but thats gamble they are willing to take again if I want to. The other major concern is, is the airway where they sew the new lungs on damaged if so then really there is no point in transplant as the new lungs won't heal and will just pull away which is the main cause of rejection in early days. They were also a tad confused at the damage in my lungs as it my disease doesn't usually present like that also what causes these sudden dips in health when it isnt caused my infection. I hope all this makes sense and no doubt it has lots of mistakes.
I would like to congratulate rachael wakefield on her media work recently which has so far resulted in 3000 people signing the organ donation register she literally is a lifesaver and can proudly say I am glad to know her and be her friend
I would also like to thank Rob skinner for being such a great friend and being there for me when I needed someone to talk to.
I had a fabulous christmas at home with my family, I managed to get home on christmas eve. I spent the day with my cousins and the evening with the rest of my cousins and aunts and uncles and grandparents it was lovely having three generations in one room. New year was good, I spent it talking to a very good friend on msn and watching fireworks from the window. I hope you all had a fabulous Christmas and New year.
Take care all xxx
I would like to congratulate rachael wakefield on her media work recently which has so far resulted in 3000 people signing the organ donation register she literally is a lifesaver and can proudly say I am glad to know her and be her friend
I would also like to thank Rob skinner for being such a great friend and being there for me when I needed someone to talk to.
I had a fabulous christmas at home with my family, I managed to get home on christmas eve. I spent the day with my cousins and the evening with the rest of my cousins and aunts and uncles and grandparents it was lovely having three generations in one room. New year was good, I spent it talking to a very good friend on msn and watching fireworks from the window. I hope you all had a fabulous Christmas and New year.
Take care all xxx
Saturday, 19 December 2009
been a long time
Hi all,
been a long time since I've blogged, well things where going pretty good I was out of hospital and stable managed to get to the Jonas brothers concert and meet them!! Also just spending time with the family and the usual stuff you learn to appreciate so much! I also won a bravehearts award!!
however since last week things took a down turn, and I ended up needing to go to A+E my normla ward I have open acces to was full so they informed A+E at the local hosiptal I was on my way and to have resus ready. I went in was seen staright away and settled overnight on my Bipap with 15l of oxygen I was managing on that untill midnight the next night where my O2 sats just didn't want to behave. So ITU it was where i went and stayed for a few days to be kept on eye on and was put on more poweful bipap machine called vision. before I went to ITU earlier that day I saw my consultant who was concerned and said he would get my transplant assesment sorted asap but freeman hospital had no beds so It was just a case of waiting for a bed. I am out of ITU know and back on the ward still not my regular but it is better than ITU I am slowly improving and having short periods off my bipap. my 3 day transplant assesment is all booked for monday hopefully there will be a bed. The transplant consultant came to see me briefly and said he would like to have good proper chat about transplant straight after the new year with me and my mum and consultant in clinic. I am hoping that after my asssesmnt I should be able to go home and atleast have christmas at home even if it means i am still using my biapa for most fo the day, It is something I feel I can ween at home.
Christmas shopping and buying presents for my sister has been put on hold, But i would like to thank postpals very much as my sisters and myself have recieved lots of lovely cards and gifts. It lovley of postpals to count siblings as they feel left out alot and obliged to to act grown up and sensible but after all they are just children.
well that is all for now hopefully I will update again soon!
Ayesha xx
P.S I have also made some very special friends recently, You know who you are xxxxxx
Also a great congrats to rachy for making onto the transplant list!!
The best present for some one at christmas would be for the phone to ring saying a match has been found! why not let something postive come out of death and pass your life onto some one else. give the gift of life and sign the organ donation register.
been a long time since I've blogged, well things where going pretty good I was out of hospital and stable managed to get to the Jonas brothers concert and meet them!! Also just spending time with the family and the usual stuff you learn to appreciate so much! I also won a bravehearts award!!
however since last week things took a down turn, and I ended up needing to go to A+E my normla ward I have open acces to was full so they informed A+E at the local hosiptal I was on my way and to have resus ready. I went in was seen staright away and settled overnight on my Bipap with 15l of oxygen I was managing on that untill midnight the next night where my O2 sats just didn't want to behave. So ITU it was where i went and stayed for a few days to be kept on eye on and was put on more poweful bipap machine called vision. before I went to ITU earlier that day I saw my consultant who was concerned and said he would get my transplant assesment sorted asap but freeman hospital had no beds so It was just a case of waiting for a bed. I am out of ITU know and back on the ward still not my regular but it is better than ITU I am slowly improving and having short periods off my bipap. my 3 day transplant assesment is all booked for monday hopefully there will be a bed. The transplant consultant came to see me briefly and said he would like to have good proper chat about transplant straight after the new year with me and my mum and consultant in clinic. I am hoping that after my asssesmnt I should be able to go home and atleast have christmas at home even if it means i am still using my biapa for most fo the day, It is something I feel I can ween at home.
Christmas shopping and buying presents for my sister has been put on hold, But i would like to thank postpals very much as my sisters and myself have recieved lots of lovely cards and gifts. It lovley of postpals to count siblings as they feel left out alot and obliged to to act grown up and sensible but after all they are just children.
well that is all for now hopefully I will update again soon!
Ayesha xx
P.S I have also made some very special friends recently, You know who you are xxxxxx
Also a great congrats to rachy for making onto the transplant list!!
The best present for some one at christmas would be for the phone to ring saying a match has been found! why not let something postive come out of death and pass your life onto some one else. give the gift of life and sign the organ donation register.
Sunday, 18 October 2009
shortest hospital stay ever
well all my sister have had bug and i think I got it but beacuse of me being on chemo and having a low immune system means if i have temperature it can turn nasty very quick. so I was vomiting non stop all since i woke up on friday morning and felt terrible. Mum rang up the GP as i dint want to go to hospital he came home first time i've actually seen my GP its usually hospital!! anyway my temperature was 39.4 when he came so he said was best go into hospital espically as i was vomiting so much. so i went in wasn't ablt to keep any Paracetmol down so had some Iv was tested for swine flu but it unlikley i have it still wiating results started on tamiflu had chest xray and started on sum Iv antibiotics as the doctor said lokked like I had a bad infection. the nest morning i was fine tempertaure had settled kept some water and my tablets down the resoiratory consultant came who i know well and he said my xray looked fine for me better than it lokked when ive been sick with my chest the other doctor must not have know my history. so i cam home that afternoon I was in for 24 hours only hehe. still felling a bit run down but apart from that I'm fine.
oh and I passed my theory test on thursday!!!
oh and I passed my theory test on thursday!!!
Monday, 28 September 2009
Clinic
well today was my 1st clinic appointment after going to GOS my lung function was the same as the usual 15-20% when im well. we talked about me moving into adult care and what the transplant doc her at freeman, newcastke had said my consultant had breifly bumped into him in the corridoor and he said he had recieved the reports, but he didnt think he had read through them thoroughly one of his main concerns was my biospy from 2008 suggested aspiration which has been ruled out but a common cause of rejection post transplant is aspiration especially when your under sedation and this will be a huge risk factor if i do aspirate or silently aspirate due to reflux. so he wanted an Ph impendance test to make sure I not getiing bad reflux and aspirating. But my consultant said he write to him for his formal view and a list of anything else he wanted doing and wether he wanted to see me yet.
so things are moving slowly forward!!
xxx
so things are moving slowly forward!!
xxx
Tuesday, 1 September 2009
much needed update
well since ive been back home from GOS hospital I havent done much I've had a few driving lessons which are going well and have my theory booked. Ok now back to what the outcome of GOS was well I saw the transplant team the next morning the day I was due to go home and they said it looked like I did have wegener's granulomatosis and that they won't transplant me if I have WG becasue noone has ever been transplanted with WG before. they have said I'm no old enough to be seen by a adult centre so i can ask somewhere else for another opnion.
Just as i was about to leave with the ambulance crew when the vasculitis(rheumatology) speicalist rang the ward and asked if we could wait 20 minuntes but we were already running late. So he took my mum mobile number and passed his e-mail address on to me.
About halfway home 2 1/2 hours into the journey he rang. He explained all tests and clinical evidence showed that my disease is actaully inactive he believes that its is lung damage causing the problem that a transplant will only fix. he sed he had emialed the Uk adult vasculitis specialist and he also thinks transplant would be good idea and hopefully be succesfull he is bassed in addenbrookes in cambridge so all my details will be sent there and I will hopefully be seen by them so they can see me and build a case to present to the transplant team and hopefully they may agree. I will be the first perosn in the world with WG to have a lung transplant if I have one!! I think I'll get on the list eventually but it will be a long road!!.
ayesha
xxx
Just as i was about to leave with the ambulance crew when the vasculitis(rheumatology) speicalist rang the ward and asked if we could wait 20 minuntes but we were already running late. So he took my mum mobile number and passed his e-mail address on to me.
About halfway home 2 1/2 hours into the journey he rang. He explained all tests and clinical evidence showed that my disease is actaully inactive he believes that its is lung damage causing the problem that a transplant will only fix. he sed he had emialed the Uk adult vasculitis specialist and he also thinks transplant would be good idea and hopefully be succesfull he is bassed in addenbrookes in cambridge so all my details will be sent there and I will hopefully be seen by them so they can see me and build a case to present to the transplant team and hopefully they may agree. I will be the first perosn in the world with WG to have a lung transplant if I have one!! I think I'll get on the list eventually but it will be a long road!!.
ayesha
xxx
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