UPS AND DOWNS

I haven't been on for a few days as I have been a bit down, and didn't want to tell everyone that I wasn't my usual cheerful self. When I told my friend this, she said that I should still do my blog, as it was quite normal to have ups and downs with everything going on in my life at this present time....and I suppose it is. And after talking to my friend for a while I feel a lot better than I did ...so here I am!
Since having been told I am on the transplant list, things have seemed to be a bit of a daze. I feel shocked. Even though I feel really ill, somewhere in the back of my mind , I thought they might say that I wasn't quite ready for a transplant just yet. So when they said I was, it was a shock, and I think my family felt the same way! It was finally happening. I got home and realised that my life would be like living on a knife edge. Every time that my phone rings I nearly have a heart attack.So on Saturday I went to the town with my friend Val, we hadn't had a day shopping for a while. Bob will come anywhere with me bless him......but he hates shopping, Like most men..... he tags along, and you can see him thinking that he would rather be somewhere else. So every now and then, I let him off the hook and get Val to come with me.I thought a girly day might take my mind off things .So I got onto my scooter, and I was whizzing ahead, when a nice healthy smell of a cheeseburger came wafting down the road. I looked at Val and she knew exactly what I was thinking. So I pulled up outside the van and ordered 2 cheeseburgers and 2 cups of tea to wash it all down with. We sat at the table outside the burger van. I stayed sitting in my scooter and Val sat at the table. We was chatting away as we always do, then I had the biggest scare ever! I heard a loud buzzing noise. GOD MY PAGER HAD GONE OFF!!! Well I nearly choked on my burger...Val spilt her tea everywhere, then I realized that it was not my pager...just that I had leaned on my scooter and the reverse alarm had gone off. We both cracked up laughing....but I realized just how I would feel when that pager would go off!
Sunday was a lovely relaxing day. I had a long lay in, and then Bob and I went out for Sunday dinner with Bob's son and his partner. It was a lovely meal.....roast beef and Yorkshire pudding. Eating is getting harder for me now, I can still eat but it takes me longer as my breathing is so bad now. But I also realize that I have to maintain a good body weight, as when I have my transplant I will be in ICU.....so will lose weight. But I am not used to sitting down all the time, and I have more than my fair share of spare tyres. But just wait until I get my new lungs....I will shed the fat on my treadmill.....ha ha !
Monday I held the support group that I chair for people with lung disease. I love this work with a passion, as it makes my illness have a purpose. Over 45 members turned up,and they seemed to have a wonderful time. It was hard to tell them that my time had come to go on the list. Even though many of them are a lot older than me...I love them all so much. I know you are not meant to get involved. But when you get to know people who are so poorly, you cannot help but hold a piece of that person in your heart. They are all individuals, and they always shower me with affection. People cannot understand why I still do the group even though I am not well. But it really helps me to put my own life into perspective. I have said before that there is always someone worse off....and you will hear me say it many times as I write my blog.
Tuesday I had a hospital appointment, we had a long wait. Bob had a lot of work on so Val came with me. I had my lung functions first. I hate having this done, even though the staff are lovely it gets so hard for me now.I got called in, then went to do my blows. I knew that it would be hard today.My breathing had been more laboured the last few days...to the point where I have been frightened a few times. But life goes on...although I do realize that I will have to tell the doc when I see him. Anyway back to the blows( I do tend to ramble), I tried doing my long blow....but it was useless, I kept trying but no joy! Every time that I blew I started coughing. A* said that I was to leave it. This concerned me as I had only just got put onto the list, but she assured me that it would not make any difference, so i went back into the waiting room more relaxed. They are all so lovely..and I am so lucky to have the staff there to look after me!
We seemed to wait in the waiting room for ages........I asked Val to get me a cup of Hot Chocolate.....mmmmm Papworth Hot Chocolate is to die for, it is always the highlight of my trip. Anyway empty cup, and falling asleep I finally got called by a nurse, it seemed busy that day for some reason. We went into the office then had to wait for a doctor to come along. K* , the nurse,came in for a chat.We was talking when my pager started to bleep again. My heart was beating like a drum....I felt sick..my breathing was getting more difficult. Val looked flustered even the nurse looked slightly alarmed. Then she looked at me and laughed.. it was HER pager. Twice in a week and it was not even my pager.....so whatever will happen when my pager goes off! Who knows when that will be?
The doctor came in, he was not my usual doctor, but I had heard a lot of good reports about him. He asked me how I was, and I just started to flood his room in tears. I felt stupid, but also relieved. I try to be brave when I can, but unfortunately I cannot do this all of the time. Everyone sees this strong persona, and underneath I am the same as the people who are reading this now...human!!!! Sometimes I forget this, but I am allowed to feel like this. Anyway... I told him that I was getting short of breath, but that I was scared to say about infection in case I got took of the list. But he reassured me that the TX team would not take me off the list just for an infection....so if I needed to come in for IVs then just to let him know. I am going to wait for a while to see how I go, I am not to bad at present...so might just need a rest. Bob always seems to make me feel better, so please don't worry. I will be back to my normal self in no time! Be happy.

ON THE ACTIVE TRANSPLANT LIST!

Well from 1.35pm today, I had a call from Papworth to tell me that I am now officially on the Transplant List. Pager ready... mobile ready.. land line ready...and my bag packed, feeling excited, but god sooooo scared! Every time my phone rings I shall be on tender hooks. But I have waited for this for 7 years now, and just can' believe its happening. I have told all my family and friends that they might get a call. They are all elated for me. I hope that my new lungs come soon, but it is also very sad to think that someone has to die to give me a life !

Everyone has been so good to me over the years, but I just want to be Lynn again, I want to be able to breathe, and I don't think that it is to much to ask. After all, it is a natural thing that all of us do.....in fact without lungs we would die. Unfortunately I only have 14% of my lungs working now. So the only things that I can do, is go out in my chair or my scooter, doing wheelies in sainsburys, eating my partners lovely dinners(I even struggle doing that now) and cuddling my grandchildren. I am a happy person, and I always will be, and intend to remain so. I know having a transplant has it's risk's..but that I am prepared to take. After all, someone would have had to have died to give me the chance to have a life, so I think that I should relish that life, not to waste one second.... but savor every moment!

Many of my friends who have had transplants, have told me that they have had a few false alarms before they got their new lungs, so I am prepared for that to happen, even though it will be traumatic, it will be something I have to get used to. My partner Bob just said to me that it feels a bit like waiting for Christmas to come, but I did say to him not to expect me to jump out of a box wearing tinsel, because I might get a bit out of puff.

I am going to attempt to show Bob how to update my blog, so that when the time comes for my new lungs he can let you all know. So just pop me on the desktop and every now and then you can look in for updates. He will try I promise!!

I hope the rest of my friends who are poorly,also get good news. You have all helped me immensely. Thank you. Lots of love x x x x

DANCING ON TARMAC

A few day's ago one of my friends asked me if I would like to go to see Dancing On Ice with herself, her boyfriend and her mother as they had a spare ticket. I grabbed the chance, because If I get on the transplant list I will be too frightened to go far for a while...it was in Birmingham which is 85 miles away. So Saturday at 4.30pm off we went, going at a steady speed all the way. But I must admit when we got into Birmingham my heart did stop a few times. The driver lived in Birmingham, so he knew how to dodge in and out of traffic, it is the only way in a busy city. My Bob does it when he go's back to London.But I felt completely safe anyway!
We got to the show, I was in my wheelchair and I must admit the staff were excellent. Nothing was to much trouble for them. We had brilliant seats, but were not allowed to take photos as they had cameras there doing a DVD. Chris Fountain and Gareth Gates were there...so I was happy! The skating was superb. Much better live than on TV. During the break we were told that towards the end of the show there would be a lot of pyrotechnics and that would cause a lot of smoke, so might affect people with lung conditions. But it was not as bad as we thought. But still spectacular without the smoke, so it suited me.
Anyway it was time to go home. A fantastic night was had by all.Now for the long drive home. I had a shopping trip the next day with my daughters, so I was looking forward to getting into my bed. It was raining and very cold.I was in the back with V's mum, and then we got on the way. Dodging in and out of traffic as we had to on the way there. D soon got us out, back onto the motorway. We approached the roundabout that would lead us onto the A14, D pulled out, he was a very good driver. Then from out of nowhere an old BMW came out and hit our car on the side! I was terrified. It then hit us again, we spun round several times and hit the crash barrier twice. I prayed we would all be OK. There were a few witnesses so at least we had proof that we were not responsible. Both drivers got breathalysed but none had been drinking. The other driver just got a bit cocky and wanted to show off. We called 999 but had to wait for over half an hour for the police. When 1 policeman finally got there he said we were lucky to be alive, if the car had turned over then we would have had it!! I really think that there was an angel with us that evening. In a few days time, I find out if I can have my transplant, and then I end up nearly being able to donate my own organs.....OK my lungs have had their day, but there is a lot more of me that can be donated. So thank God I am OK! A big thank you to D,V and M. If you read this then you know who you are.And at least we got our pyrotechnics. Ha Ha.
My big day is on Wednesday, so I am very emotional at the moment.I might do another post before then, but If I don't get the time, then please keep all your fingers crossed. By the way..Dancing on Ice was much better than Dancing on Tarmac, you get to have a nice hot coffee in the interval.... Ha Ha. Be safe x x x

ANGIOGRAM RESULTS

Sorry for the delay..only the last few days have been rather hectic! I went in for my angiogram on Tuesday. I had to be there at 8am , so got up at 5. It seems to take me forever to get ready these days. I can remember the good old days when I would jump out of bed, drag a pair of joggers on, and take 15 minutes to get showered and dressed. How I wish for those days again....but I am going to do just that.....WAIT!!!
Anyway I had the procedure. I had never had an angiogram before, but I have to admit that it was OK...no big deal! I felt a slight pushing feeling but that was it. I think the worse part was waiting for the actual procedure! It seemed to be forever, but that was just nerve's I realise that now. Anyway I have a bruise that looks like I have done 10 rounds with Mike Tyson! It is massive. I tend to bruise very easily, but this one beats them all. But with the results that I received it was worth it. The registrar came to see me on the ward to tell me that I have no sign of coronary heart disease!! YESSSSSSSSSSSSSSSSSSSSS!!!!!
So this means that I am one more step towards that list......and to getting my new life. Roll on Wednesday the 23rd April...less than a week to find out. I have all sorts of emotions going on inside my head.....excitement,anticipation,fear,frustration and even anger.Yes for the first time I feel angry that it has to be me that is going through all this, and that makes me feel awful. I just want to be like everyone else. To be able to do enjoy a life with my partner......and not have to rely on him to be my carer, to be able to be a good Nanny to my grandchildren......pushing them on the swings, not having to put my family and friends through all this worry.....just to be a normal lover,mother, Nanny, sister and friend. I ask myself is this to much to ask? But then I realise that I am not the only person out there waiting for this chance of a life. So I stop the "negative Lynn" and get back to the person that I am. Because at this moment I need to be positive!
So Wednesday is the day that I find out....so I intend to give it my best. I might even crack open a bottle of bubbly to celebrate if i get on the list! even though I would only have a sip. Then I will think about all the other people that are waiting for the chance to get new organs. I really wish there were more donors. I have met so many people who need a chance of a new life. Please....if you, or anyone else you know, would be able to sign the Organ Register then it could make a real difference! You can't take your organs to heaven with you, so why waste them,when they could give someone a new life. I have seen adults and children that have died because they didn't get that chance! That breaks my heart! If through all of this, I can help one person to decide to sign that register, then I will be happy.


Anyway on a more cheerful note I have an exciting weekend coming up! My friend came over a few days ago and said she had a spare ticket for Dancing on Ice with Torville and Dean....right at the front. I am sooooooooo excited. I will have to take plenty of oxygen and my good old wheelchair..you never know they might ask me make an appearance if Gareth Gates doesn't turn up. So a big Thank You to Yvonne and her mum! Then on Sunday I am going shopping with my daughters for the day.They have all their birthday money to spend! I am really looking forward to spending the day with them in a different setting. A happy...cheerful retail therapy setting...much better that transplant talk. I have my scooter now, so I can go as far and as fast as I like.No doubt I will be very tired after, but it wil help me to think about something else! I will update you on how low my bank balance is next time I log on. But until then.. if you see me stuck on my Scooter in Bedford on Sunday then come and get me out!

THE LONDON MARATHON

The London Marathon 2006.............................But watching it on TV in 2008


Today I have experienced some great memories! Watching the London Marathon on the television. I had such a wonderful experience in 2006...indeed it was one of the best weeks in my life. I have just been on You tube and watched the the video that British Lung Foundation put on there for me. It brings back so many memories. Take a look if you would like to:


I would never have done it without the support of my friend Val, and the nurses who walked with me every day. I hope one day if I get my new lungs then I will be able to do it again, but this time, not having to struggle with my breathing! I just want to say a big WELL DONE! to everyone who entered the London Marathon today! I hope that you all raised the amount that you intended to for your charity.

NOT LONG NOW

My daughter Louise and granddaughters Cary's and Evie. I didn't have a nice photo when I included my family, but I love this one!


I am pleased to say that this month seems to be flying by....even though I would love to have it over with right now! But not long to go. I had my pre-assessment this week. I was terrified, some of my friends had already had an angiogram, yet had not had to attend hospital days before , so I was wondering why I had to.....but it was nothing to worry about. The reason for my pre-assessment was that I was having my angiogram first thing Tuesday morning, so they liked to get the tests done before, as there wouldn't be much time before, so tests over with.....bloods,ECG,blood pressure. So once again panic over and a waste of my energy getting worried. So if any of you have to go for pre-assessment then please do not panic!!! it's not as bad as it seems!
I have to be at the hospital at 8am on Tuesday. I am not worried as the test is done so many times,I am sure I am in capable hands. They are so good at Papworth. I have to stay all day...so my Bob will be pleased, he might get some peace. I might need new lungs, but if there are people on here that know me...you will all know that it will never stop me talking...ha ha. I always have a good excuse, I have to improve my lung function, and at 14% it needs improving.
I haven't really done much this week, apart from the pre-assessment. Just spending time with Bob, and seeing my grand-children. They are poorly at the moment. Sharlie has got Slap Face (no I didn't slap her, it is a virus) and Cary's has glandular fever. Fortunately I haven't caught it. Obviously my daughters wouldn't have let me have contact with them if they had known, but as you all know, sometimes that is not possible. But I am fine, so hopefully I will remain germ free, and it is always nice to spend time with my family. Bob's daughter Sue also came over, so we had a lovely time. I enjoy spending days with family, they are so important to me!
I had a busy day on Friday..I am in a DVD for the NHS, so they came to film me. I just had to say what I thought about long term conditions. It was brilliant. I love to put my illness to good use.And by being positive and showing people that you can be in control of your condition is a good way to start. So a busy few days, but I am not complaining! I just want to get this month over with, as then I hope I can concentrate on getting my transplant!
Until the next time!

OUT OF PUFF!!!!!

Well I have to admit, the last few days have been very hard. Sometimes I try to continue.. even though life is a struggle, but more often than not, I like to remain my normal, positive self!
Yesterday I did a talk at my hospital. I do this once every 6 weeks, to the people who attend the rehabilitation group! It is an excellent way to show people with COPD, etc......that living with a lung disease does not have to stop you enjoying your life.They reintroduce exercise, diet, breathing techniques, and all of this gives the person more confidence to life their life to their full potential. The reason that I go, is to tell them all about the support group that I chair. And to tell them about my perspective on living a life with lung disease! But I have to admit that yesterday was a struggle.
My breathing has been more laboured the last few days, and to talk to the group, trying to remain positive and my usual cheerful self, was extremely hard. But I am honest with them, and I do tell them that sometimes we get days when life gets difficult. But if we take life a day at a time then it becomes easier to deal with. So at this time I have to remember what I preach!! even though it is not how I want to feel.
I did intent to write in my blog every day.....so that I can put my anger, fears and frustrations down on paper, hoping that it will help me to cope when life gets hard, and to let other people who are going through similar circumstances, know that these feeling are normal. But if some days you notice that I have not been on here...these are the days when I need time out, or I might be having such a good time out there in the real world, that I do not have time to get on my PC. I promise that all my post's will not be miserable, I am not that sort of person, and if that appears on here..... leave me a comment and tell me off! ha ha.
Anyway I am off to start another day. I might be out of puff...... but I have a smile as well!

TRIP TO IKEA

Well I had a mad day on my scooter today. Bob decided that I needed a day out so we went to Ikea. We went to the one near Tottenham, please don't ask me where it was exactly as I have no idea! and after the day we had I think that we will go to Ikea via the Internet next time...mind you, can you get nice hot Swedish meatballs online..will have to check that one out! Anyway on the way there, we got stuck in a traffic jam. The M11 south had come to a stand still, and we had to get diverted, the queues were awful. I find it hard to sit in one place now, especially if it is in a small place. I get cramp very easily...so I am better if I try to get around a little, even if I get breathless!

Bob was as good as ever, I think we ended up eating about 5 packs of Polo's in the car and I must have got through a bottle of water, but thankfully I didn't need him to stop half way for the loo...which is most unusual for me! As we finally pulled up in Ikea car park...Bob mentions that he thinks we left the keys to the scooter back at the house. I couldn't say on here the thoughts that was going through my head, but I looked at Bob and he didn't look very happy. He was worried as we had wanted to come here for age's, but I hadn't felt up to it until now, and if we didn't have the key to the scooter, then I wouldn't be able to get around the store. We had to wait until he pulled up ,then he went to check and the key was in the scooter. I have never seen a man cheer up so quickly....lol. So scooter put together... we was ready for the off! first call was the restaurant for their Swedish Meatballs. We have this every time we come. I find eating difficult now, my breathing gets harder when I have had a meal,but I do love my food, so meatballs it was for both of us...and I must say they was delicious, It made waiting in queues well worth the while.

After the meal I raced off down the shopping aisle,forgetting that I had wheels and Bob had legs... looking at all the new things that they had. The purpose of our trip was to look for cabinets. For those of you that I haven't told, Bob and I are buying a bungalow together after my transplant, so we are looking for ideas for our new place....I wasn't as struck on Ikea as much as my first visit, but we still had a good day. When we got home it was straight on the nebuliser for me. I was puffing and panting like someone 100 years old! after 10 minutes on my neb, I was much better. Ready for bed and ready to face another day tomorrow,and I am sure that it will bring me another challenge!

Photos of my family

My partner Bob,Evie,Mollie and Carys

My Grand Children Kieran, Sharlie and Mollie...not forgetting Benji the dog!
My Son-in-law Scott, Sharlie, Kieran, my daughter Laura and grand daughter Mollie.
My Grand Daughters Carys and Evie
Carys and Evie
My Son James and his girl friend Natalie

Sorry to bore you all, but I had to put some photos in of my family.I am missing a pic of my daughter Louise and her husband Daniel, but I will get one ASAP. I wanted to show you my family, as they are the most important people in my life, and as I add more posts..they will come up in them quite often, as they all have to go through the fears of transplant as much as myself. I will also be putting other photos on here in due course. I can get carried away ...as you will all find out.

So untill tomorrow x x x

What a day!

Yesterday's talk went very well, I did my talk first..I was very nervous to start with,but as usual, once I got into the flow of things I was ok. I was the only Volunteer person there, everyone else was working for the NHS or one of the other establishments. I really enjoyed it, and I have decided that if the day comes when I can return to work, I would love to be a speaker...obviously doing something for people who have lung disease. I even managed to mention to people about organ donation..so maybe a few people will sign up? I hope so.

My best friend Val came with me, I can't walk far enough to be able to go alone anymore...Bob would have taken me, but I find it hard to do my talks when we are together...as it can get very emotional at times. As you can read from my last post, I didn't get any sleep the night before...not even 5 minutes so I was shattered. We could have stayed until the end, which would have been 4.30, but when my friend looked at me, she could tell that I was having trouble staying awake...so we decided to leave early, and this way we would avoid the rush hour traffic. I set the tom tom up with my postcode and the stupid thing couldn't even manage to get us out of the car park!! lol. I am sure it must have been in male mode that day.

We eventually got home, and after dropping Val off I came home, got my pj's on and looking for something to eat. I was so tired, that i decided to have some soup and then get to my bed. I was meant to have my friend come over and do my hair, but I was even to tired for that, so I rang and cancelled. Anyway I had my gourmet meal, and then laid on the bed. Next thing I remember was at 7.30 this morning! I had fell asleep with the TV,lights, and PC still running, and my tablets still on the bedside cabinet. I had not even had my nebuliser. I was so tired from the night before that I think I would have slept through a major disaster! But at least I had a solid nights sleep, which is something I had not done for a long time.

In the post this morning was the letter I had been waiting for. It was from the transplant team to let me know when I would be going to see them after I had the angiogram. I will be going on the 23rd of this month..so not long to wait now. I should know if I am suitable to go on the list. I thought I would have been really pleased to get the date, but to be honest I feel terrified. How am I meant to feel? In one way I am really pleased to know that I could finally be on the list, but I am also scared of the unknown. There are so many questions I want to ask! Then I keep thinking that this time next year I could be planning a holiday with Bob, or could even just go shopping without having to worry about my oxygen running out, and being able to walk far enough, without gasping for air. The world could be my oyster. But it would just be nice to have a more normal life. I hope my grandchildren are ready for there nanny to join them going down the slide!!!

Wide Awake!!

This is my first post, so I am not expecting anyone to read this one. It is 3 am and I am still wide awake. My sleep pattern has much to be desired at the moment, but I am getting anxious as I am a key speaker tomorrow for the NHS,I will be talking about living with a long term condition.
I love to do these talks as it makes people realise that you can still live a life with an illness, it just means that you have to adapt your life. Even though I am on oxygen 24/7, I still wake up every morning and thank god for another day...and I live each day as if it was my last!

I am a lot luckier than some, I have a wonderful partner and we are in the process of selling our houses and buying a bungalow between us...so I am very excited about this, I have 3 children and 5 grandchildren all of whom I love deeply. My partner has a lovely family whom I am also very close to. So really you could say that I am blessed! But the one thing that I really need is a nice new pair of lungs!

On February the 4th I was assessed for a lung transplant, I went in on a cancellation, so I have had to return a few times for tests as they was not booked up for me on my assessment. I have just got to have my angiogram which is on the 15th of this month and then I will see the transplant team again. If all the tests are ok and I am suitable for transplant then they have told me I will go straight on the list. I only have 14% lung capacity now so I am really struggling. But even though I sometimes feel really sad, I realise I am a lot better than some. I can still smile and I feel quite humbled by the people that I have met or spoken to since having this disease, so I feel very lucky compared to some!

I hope this first post has not sent you to sleep, and I will put another post on here soon. I am now going to turn off my light and see if I can finally get some sleep! Night night everyone! x x