Ok so I will start right from the beginning. So I had kinda given up chasing the whole having a transplant having a chance to have slightly normal life thing.
Then a week before June half term we got a phone call mum answered it we just getting ready to go out as the phone rang I was already at the door.
I hear mum saying sure that's fine, will she have to stay the night? I knew it was hospital regarding me have to come in. I thought great more tests and prodding and poking. I asked mum who it was, It was someone from the transplant team they want you to come in overnight, great I thought now what do they want. Did they say why? mum said they Had said something about getting listed. It wasn't one of the actual coordinators just one of the staff from the ward. So while I was out all I could think about was why they wanted me to come in? was I actually going to listed? I thought can't be as my last admission raised a lot of questions and lots of people were confused as to what was happening in my lungs.
So I got home sat around for a bit them obviously went straight onto msn as usual, and of course Megan was online. Me and Megz talk about everything literally everything. So I told her about the phone call and told her I was bit worried about why they wanted me in, I was afraid they would want more invasive tests. I put my mind at rest by thinking maybe they wanted updated bloods, x-rays and lung functions and just generally re-look at things. I rang the coordinator then and he was in theatre and couldn't talk much, but he also said hopefully to get listed.
Later on the day or maybe the day after I think I told Robbie I was going into hosp next week overnight he seemed so excited and nervous a bit OTT if I'm honest. I was bit like I'm only going into hospital overnight. In the run up to the Wednesday I was due to go in he was constantly talking about it asking if u was ready etc etc as if I was actually going in to have a transplant!
So Wednesday morning came and I woke up got dressed packed what I needed to and headed off to hospital I arrived at about 11 and got to the ward all the cubicles were full so I had to go to the next ward they were connecting wards so was ok. I looked at the board and a name in caught my eye skinner... I thought hmm it as that much of a common name and someone had mentioned they saw rob (who's surname is skinner)in freeman Lung function department on facebook. So i was like no he can't be here he lives 300 miles away! so me and mum went to grab something to eat while ward 30 got my cubicle ready as we were walking off the ward I saw Rob's Sister.
So i got back to the ward and I though ahh Rob's here and I'm going to be on a different ward... but it turned out the wards were connected, a double door connected them I was just trough the double doors at the end of ward 30 and he was just next to the doors on ward 29. I saw his sister again and decided to text him letting him know. I told mum he was here and she went to say hi. Then mum had to go home. so waited around for Doctors and nurses to come around. Rob came to say hi with his sister maria, but then I was having bloods done and they said that was all they wanted for today.
Later on the transplant doctors did their round. The consultant that day I hadn't met before but he was very blunt and very negative about everything and said there was no Way he could give an answer yet and they had no idea what was happening in my lungs and whether a Transplant would actually work and it wasn't a decision to be taken lightly he then asked me some more questions and said he wanted some tests done that he originally didn't want repeated I wasn't very happy about this as they really tire me out. He wanted some special lung function tests and a 6 minute walk test. So I really was a bit gutted and didn't have my hopes high at all. I had nice evening watching a movie with Rob so that made things better.
Next morning I woke up and had to go to lung function followed by the walk test straight after as results are needed for the multi disciplinary meeting at 11:30am. So my lung function was as rubbish as usual and really tired me out. I waited for results and then went straight to have my walk test with the physio which also went appalling I walked 130 meters in the 6 minutes on 6L of oxygen and still my sats where 77% my the end and I was panting and coughing like a 90 year old who had smoked 40 a day all their life.
Then I got back to the ward pretty tired and eventually mum arrived with my sisters and then the TX Team came around they asked my sisters to go to the waiting room. Again the doctor was very brutal about the risks involved especially as they have no idea whats exactly happening in these pesky lungs of mine. I was thinking okay okay I get it no transplant and just wanted them to shut up and leave frankly. But surprisingly he said but now is the time to stop faffing around inventing new diagnoses we know you lungs don't oxygenate very well at all and we thing now transplant is the only way forward and it is the right choice so we are offering you a place on the transplant list. I was really shocked and felt like saying. you idiot you could've started with that!
They also told me my bones were dangerously thin and I admitted myself I hadn't been taking my calcium supplements because no one had told me my bones where bad so I figured I didn't really need them. But I'm taking it now and trying to take in as much calcium as I can.
So I talked to the coordinator and some other people signed the consent I also have a hole in my heart they will repair at the same time. I said bye to Rob and I headed back down to lung function for 1 more test.
So I will go active once tissue typing is back and I got an all clear from the dentist and have had sum vaccines updated from the GP.
So that half term was full of unexpected surprises! xxx
Hope to update soon!
Tuesday, 15 June 2010
Wednesday, 26 May 2010
Feeling hmm and confused about anything
Hey guys (if anyone even reads this) I haven't blogged in a while, I didn't feel like blogging about recent events. Frankly I just couldn't be bothered anymore. But then I realised it was probably better than bottling it all up.
So I have been out of hospital nearly a week now. It was quiet a eventful admission.
I ended up in ITU once again and met a new doc he is the adult Itu consultant and resp/CF specialist. He didn't get my sudden drop in o2 SATS so he made me have multiple gasses at different Fio2's (Facially inspired Oxygen) More accurate then measuring it in litres. so I had gasses at 100% oxygen through bipap 70% 60% 50% and I would just plummet and below 50% and take a long time to get my sats back into the 90's my gases confirmed this.
They were confused a bit by this as my CO2 didn't rise but my PaO2 fell. So I had some special heart echos and a special CT scan. They were all fine showed nothing more than my Lungs being bad my heart was fine.
So they are still a bit confused but hey I've never been text book. So this Doc lets call him Dr smith offered to take over my adult care as he would be better than the Transplant team for when I get acutely ill as he part of the Adult Home Ventilation team.
So I slowly got better and Tx doesn't seem like its moving forward much at the moment and I'm home once again waiting for the next thing to happen. I can't be bothered pushing and chasing the whole Tx thing anymore if it they say I can be listed great if not no biggie.
Something happened yesterday that really hit me hard. Someone who I had just recently started talking to, who is in the same position as me I was in hospital when I last spoke to him, was on 10l o2 bipap 24/7 so was he minus the bipap 24/7 at the time. Like me he was fighting to be listed for Tx. Yesterday I heard he had passed away. I'm so confused as to why some people just go and others just bounce back why did he go and why didn't I. I don't think its fair. I think I'm correct in saying he had never been that unwell in the past. I have multiple times and bounced back. I don't understand why, why wasn't he given the chance. I just really don't get it.
Another thing getting to me is how some people get listed oh so quickly and others are practically dying and fighting for a place on that list. It isn't fair why should people have to suffer so much to get listed and others get listed so quickly get their call have fantastic superb recovery. A good Friend of mine recently got a Tx but she was on her death bed literally when she got listed yet other people I know OK they have restrictions etc but still get to do normal things. I know they are sick enough to be listed but it just annoys me that their people so much sicker waiting to be listed and fighting for the chance just because they are different.
I'm just all confused and my head is a bit of a mess atm. I don't want to be part of this world of oxygen, Tx, Illness anymore. I don't feel like talking to anyone I have met because of it. weird as that sounds you think I would talk to them more because they may understand.
I just feel like fading away and disappearing right now......
So I have been out of hospital nearly a week now. It was quiet a eventful admission.
I ended up in ITU once again and met a new doc he is the adult Itu consultant and resp/CF specialist. He didn't get my sudden drop in o2 SATS so he made me have multiple gasses at different Fio2's (Facially inspired Oxygen) More accurate then measuring it in litres. so I had gasses at 100% oxygen through bipap 70% 60% 50% and I would just plummet and below 50% and take a long time to get my sats back into the 90's my gases confirmed this.
They were confused a bit by this as my CO2 didn't rise but my PaO2 fell. So I had some special heart echos and a special CT scan. They were all fine showed nothing more than my Lungs being bad my heart was fine.
So they are still a bit confused but hey I've never been text book. So this Doc lets call him Dr smith offered to take over my adult care as he would be better than the Transplant team for when I get acutely ill as he part of the Adult Home Ventilation team.
So I slowly got better and Tx doesn't seem like its moving forward much at the moment and I'm home once again waiting for the next thing to happen. I can't be bothered pushing and chasing the whole Tx thing anymore if it they say I can be listed great if not no biggie.
Something happened yesterday that really hit me hard. Someone who I had just recently started talking to, who is in the same position as me I was in hospital when I last spoke to him, was on 10l o2 bipap 24/7 so was he minus the bipap 24/7 at the time. Like me he was fighting to be listed for Tx. Yesterday I heard he had passed away. I'm so confused as to why some people just go and others just bounce back why did he go and why didn't I. I don't think its fair. I think I'm correct in saying he had never been that unwell in the past. I have multiple times and bounced back. I don't understand why, why wasn't he given the chance. I just really don't get it.
Another thing getting to me is how some people get listed oh so quickly and others are practically dying and fighting for a place on that list. It isn't fair why should people have to suffer so much to get listed and others get listed so quickly get their call have fantastic superb recovery. A good Friend of mine recently got a Tx but she was on her death bed literally when she got listed yet other people I know OK they have restrictions etc but still get to do normal things. I know they are sick enough to be listed but it just annoys me that their people so much sicker waiting to be listed and fighting for the chance just because they are different.
I'm just all confused and my head is a bit of a mess atm. I don't want to be part of this world of oxygen, Tx, Illness anymore. I don't feel like talking to anyone I have met because of it. weird as that sounds you think I would talk to them more because they may understand.
I just feel like fading away and disappearing right now......
Monday, 3 May 2010
Just a few more tests....
Well I had clinic on my birthday which was the 26th of April, All that was said was I am obviusly sick enough for trabsplant and have been for sometime. My kidney fucntion was a bit low so they needed to do some more tests which they did which came back ok. But they didn't really tell the doctors much. So they wnat me to see the renal specialist and make sure my condtion isn't affecting my kidneys as it usually does if it is then unfortunatley I can't have a transplant. I am really hoping this is the last bunch of tests and I get an answer after this whether is be a yes or a no an a straight answer would be nice!
Apart from that I really haven't been upto much.
xx
Apart from that I really haven't been upto much.
xx
Friday, 5 March 2010
A tunnel with no end
It seems at the moment my life is like I'm climbing up a dark tunnel with no end. It seems like my life is a huge maybe and the maybe is like a rope I'm holding onto keeping be from falling into the dark abyss below. Some of times I feel like letting go and let myself fall and just fade away, just give up I guess. Whilst other times I thing wait things could go right I could get a transplant this makes want to hold on with all my strength. Everybody seems to think I'm coping fabulous with everything. They only see what's on the outside. On the inside these uncertainties of what lies ahead are eating away at me, like some kind of monster!
over the past week I have fallen asleep in tears thinking what if I can't have a transplant? what do I do then? without one I won't have very long at all. If I try talking to people about it I get ahh you'll have ages you always seem to pull through. OK I have so far but every time I end up in hospital I seem to worse and never get back to what I was before the admission.
I feel as if I have to be that happy positive person all the time because its the image people are giving me. That I have a happy-go-lucky attitude towards everything. I come across that way because what else am I meant to do!
I get asked wow isn't it scary you maybe the first person to have a Lung transplant with Wegener's Granulomatosis?
Well duhhhhh, of course it is! But what am I meant to do! sit screaming that I'm scared!
I get the oh you are so brave, how do you cope? I cope because I have to! I don't know what it would be like to have life of a "normal" child my age, this the life I have. Yes I do get jealous, very jealous but hey you can't have everything. Don't get me wrong I am grateful for what I have and all that etc etc.
The more people say oh you are so brave and positive, you are such a fighter etc, the more I hide how I really feel and the more I put on happy face. but I've taken to sitting alone in my bedroom listening to music through my headphones as loud as possible usually depressing music to block out every other sound and just think about whats going to happen if I don't get listed and if I do what if I don't get a one in time and having a good old cry. This usually takes place when my sisters are at school and then before I go to bed, that sounds so sad it's become part of my routine.
It's like I'm two different people there is the me that everyone knows and sees happy clappy Ayesha, also a chatterbox to those that have me on msn/facebook. Then there is the me I know, the Ayesha riddled with worry, fear, paranoia.
And to top things off my appointment after my transplant assesment which I will proabably be given a decision as to wether I can be listed or not, well this appointment is on the worst day ever. I'd rather not mention the date on such a public blog. but yeh if it is a no, my word what a day that will be, I could change the date but that won't change the what is said in the appointment and I will most likely have to wait months for another.
so yeah this was basically a blog just to write what I'm feeling sometimes I wish I had a duplicate me to talk to. there isn't really many people I can talk to about it like anybody is even bothered anyway. They just say "aww""stay postive" really they are probably thinking "not my problem"
so this is a post from the Ayesha on the inside not the one everybody sees.
remember "When you breathe, you inspire, and when you do not breathe, you expire."
adios amigos
xx
over the past week I have fallen asleep in tears thinking what if I can't have a transplant? what do I do then? without one I won't have very long at all. If I try talking to people about it I get ahh you'll have ages you always seem to pull through. OK I have so far but every time I end up in hospital I seem to worse and never get back to what I was before the admission.
I feel as if I have to be that happy positive person all the time because its the image people are giving me. That I have a happy-go-lucky attitude towards everything. I come across that way because what else am I meant to do!
I get asked wow isn't it scary you maybe the first person to have a Lung transplant with Wegener's Granulomatosis?
Well duhhhhh, of course it is! But what am I meant to do! sit screaming that I'm scared!
I get the oh you are so brave, how do you cope? I cope because I have to! I don't know what it would be like to have life of a "normal" child my age, this the life I have. Yes I do get jealous, very jealous but hey you can't have everything. Don't get me wrong I am grateful for what I have and all that etc etc.
The more people say oh you are so brave and positive, you are such a fighter etc, the more I hide how I really feel and the more I put on happy face. but I've taken to sitting alone in my bedroom listening to music through my headphones as loud as possible usually depressing music to block out every other sound and just think about whats going to happen if I don't get listed and if I do what if I don't get a one in time and having a good old cry. This usually takes place when my sisters are at school and then before I go to bed, that sounds so sad it's become part of my routine.
It's like I'm two different people there is the me that everyone knows and sees happy clappy Ayesha, also a chatterbox to those that have me on msn/facebook. Then there is the me I know, the Ayesha riddled with worry, fear, paranoia.
And to top things off my appointment after my transplant assesment which I will proabably be given a decision as to wether I can be listed or not, well this appointment is on the worst day ever. I'd rather not mention the date on such a public blog. but yeh if it is a no, my word what a day that will be, I could change the date but that won't change the what is said in the appointment and I will most likely have to wait months for another.
so yeah this was basically a blog just to write what I'm feeling sometimes I wish I had a duplicate me to talk to. there isn't really many people I can talk to about it like anybody is even bothered anyway. They just say "aww""stay postive" really they are probably thinking "not my problem"
so this is a post from the Ayesha on the inside not the one everybody sees.
remember "When you breathe, you inspire, and when you do not breathe, you expire."
adios amigos
xx
Sunday, 14 February 2010
What next?
Well since I last blogged not much has been happening, I managed to get to britans got talent which was fabulous! Just this week I finally got a date for my transplant assesmnet There is a approx 6 month wait but I been squeezed in for the 16th of march so not long! and Then I have got transplant clinic appointment for the 12th of april (which I need to change) It will be very unlikely that I will get decision after this assesment. I have also got an appt with the gastro surgeon he seeing me to make sure I have no reflux and am not aspirating into my lungs. so Hopefully everything is going in the right direction and I will have more answers and more of an idea if it will be possible for me to be listed for transplant.
On anothe note I now have a car! and my driving lessons are going well trying to get as much in as possible and get them over with and pass rather thank take it slow as I end uop in hospital don't drive for while then end up spedning a few lessons getting used to the road again!.
Also I'm looking forward to going to manchester tomorrow to see my good friend Rachael Wakefield will be a long day but well worth it!
On anothe note I now have a car! and my driving lessons are going well trying to get as much in as possible and get them over with and pass rather thank take it slow as I end uop in hospital don't drive for while then end up spedning a few lessons getting used to the road again!.
Also I'm looking forward to going to manchester tomorrow to see my good friend Rachael Wakefield will be a long day but well worth it!
Friday, 29 January 2010
Home
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!
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!
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
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