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