Thursday, 19 June 2008

I got my Transplant and I'm a new woman!!

I MADE IT !!!!!!

First of all may I apologise not updating my blog for so long....but I have got a good excuse. On the 20Th of May after being on the transplant list for just over 3 weeks, I got my call. I could hardly believe it. I really was expecting it to be a false alarm.....but it wasn' time had come and thanks to my donor I can look forward to a new life
Below is a diary that my partner helped me to keep, I will warn you all that you will find out that I have but when you read the notes we made you will understand why I had to tell you. I could have left it out of our notes, but felt that sometimes humor is good for the soul.
I decided to have an early night, so after taking 2 hours to paint my toenails and half an hour getting my PJ's on ,as for the last 6 months my breathing had got so bad. Bob my partner had his grandson staying at his house, so I thought it would be nice to catch up with all my TV programs. Anyway at 9.30pm I received a phone soon as she asked for me, I knew that it was the Transplant Co-ordinator. She said that I was to get there in the next hour....I am not sure how I felt, I went into auto-pilot and started making the calls. I phoned Bob first as he had to come and pick me up, but first he had to take his grandson home. I then phoned my children,brother and best friend. There was no beds available so we all went into the visitors rest room. I was happy with this, as if I was in a bed ,there would only have been allowed one person with me.....but I was able to spend time with all my family. They took blood for more tests and then we just had to wait. It was the longest night of my life. I felt more for my family, it must have been so hard for them. I was trying not to cry as it would have made things worse for them. Deep down we all thought it would be a false alarm, as this happens so many times to others. But at 4.45am the Co-ordinator walked in the door in her scrubs, I knew then that I was about to be given the biggest gift of my life.
Bob took me to the anaesthetists room at around 5am where I was prepared for the long journey into the unknown.
Here began the saga of my lost teeth. I am paranoid about being seen without my teeth so I wouldn't take them out until Bob had gone. They had a tub ready for me with my name on it. I gave them strict instructions to put them back before anyone saw me after the operation......some hopes!!!!!!!
The operation took about 9 hours after which I was taken to Critical Care. I wasn't aware, but I was visited by family from around 3pm. I didn't have my teeth in as I was still on a ventilator, so my carefully laid plans went straight out of the window! Unbeknown to me, my teeth in the tub had gone missing! It took several hours for them to be located.....they turned up in the same bag as my O2 cylinder!
I was on a very high dose of morphine for the rest of the day. I remember absolutely nothing. The ventilator was removed that evening.
I was taken off the morphine this morning. I opened my eyes and responded to the consultant call to squeeze his hand and wriggle my toes. The anaesthetist had decided that my pain management would be better served by coming off the morphine and having an epidural instead.
Whilst I was able to open my eyes in response to voices, I was still unable to speak. I caused some concern as I didn't respond to the consultant this time in that I wouldn't squeeze his hand or wriggle my toes. He was looking to have my brain scanned the next morning (as I haven't got one I couldn't understand the
As it turns out, given a while longer, I began to respond to verbal answers, they then put the earlier concerns down to the morphine clearing out of my system.
My teeth saga continues in that I wouldn't let them put my teeth back in. I must have thought they was taking them out. As a greatest dread of my family and Bob seeing me toothless became meaningless.
The nurse managed to get my teeth in at some time during the night, s I was now complete with my new lungs and a steradent smile to show my immense pleasure!I managed to have a high calorie drink and yogurt for lunch. After this they decided I was fit enough to be put into a chair, where I stayed until that evening. For tea I was given some chicken soup and another small yogurt. They tasted awful...not your usual soup.....thank goodness it was only a few spoons full.
At this time I am still on a cannular with 2 litres of O2.
Progress continues, they have removed some of the chest drains, the epidural is still okay.
At 2.30pm they moved me from critical care into the ward. I was on Bay E...or as Bob said "E-Bay"! I don't know what my reserve was or if there was a buy it now price! I am getting to know the other ladies in the ward....they seem very nice.
Cannular running on 100% my own lungs after being on oxygen for 8 more help needed!!! Yippeeeeeeee
Didn't feel much like breakfast as the pains are a bit more severe today. They are talking about removing the epidural today. My pain relief will be by using Paracetamol and Tramadol. They decided to delay this until maybe tomorrow....we will just have to wait and see.
My granddaughter phoned me for a chat...made me very tearful as I was thinking of the near future when I will be able to take them to the park.
My brother and sister-in-in law came back from Cuba..I didn't tell them until it was all over, I didn't want to ruin their holiday. They was so pleased that it was all over!
Not a very good night last night, still getting a lot of pain. There was talk about removing the epidural, but its still there although it doesn't seem to be working very well.
My grandchildren phoned to cheer me lovely to hear from them.
I had a fright when I moved to get into my chair. The vacuum pump for my drain went crazy, it sounded like a bubbling kettle. The nurse's managed to sort it out. I had another X Ray to check my new lungs and the possibility of removing that final drain.
Much the same happened today. Lots of people having seems that a lot of donors must have signed up. I will make sure that I do all I can to raise awareness...not one second will I waste with my new lungs.
A mad day...I had so many visitors I was totally shattered, but it was so lovely to see that so many people cared.
I had the Chief Executive visit me today. I was at an NHS talk a few weeks before my transplant, and was talking to him. When he got to work and saw my name on the transplant list he couldn't believe it. I thought it was so nice that he took the time to come and see me. When he had gone all the nurses bowed to me in . The ward clerk kept bringing my cards...I ended up calling her postman pat, I actually got over 150 cards. I was so emotional to think that so many people had taken the trouble to send them to me.
30TH MAY (Day 10)
My daughters brought my grandchildren in to see me today. They had told them that nanny had a magic zip where they had taken my old lungs and given me some nice new shiny ones. My granddaughters didn't seem to phased by it, but when Kieran saw my scar he said "that's not a zip nanny..that's a cut" ....out of the mouth of babes!
Had a very bad sleep at all. The pain was at its worse, but I cannot complain, I had been given something that was I tryed to be positive when I could! I just wish they could find the right cocktail for me.
I had my first bath and hair wash since the 20th of May. I took a long time even with the nurses help, but the effort was so worth it. Bob arrived as I finished...great timing, I got him to dry my hair for me........he will never make a hairdresser!!!!
I was feeling very emotional today....but they said this was normal!
After being very sick the pain in my back eased suddenly. They think it must have been a pocket of trapped wind or air following the operation. What ever it was I felt much better.
My twin daughters came with my granddaughters.
I have been walking a lot today!
Bob came this morning as I finished my second bath. I have started to fill in my blue book myself, and getting very confident with giving myself my medication. I was ready a while back, but you have to wait until they say. It has just been like swapping one lot of medication for another really.
Great day today.....I met with my friend from MySpace. I have know Justine since before her transplant nearly 2 years ago. She was all I had anticipated, and I felt so grateful that she had travelled such a long way to see me. So if your reading this Jussie.......Thank you!
Another bad night...still yet to have a good nights sleep since the operation. Finding it so hard to cope with the pain. I had several operations on my stomach years ago, and was on very high doses of morphine for several years. I have not been on it for years, but the tramadol is not having much effect because of this. It is like giving me aspirin. I do not want anything stronger as this would affect my stomach, so I am just going to get through it. I have a few wheat bags that I can warm in the microwave.....this will be better than being out of my head on pills!
I had a good afternoon. I saw my best friend Val for the first time since the operation. She had to go away and I missed her so much. We have been through so much together.
Went to the thoracic clinic today to do my spirometery. It was nice to see so many friends there. They was shocked to see me without my oxygen.
I had some good news from the consultant, he said I could go home for the night on Saturday and come home Sunday afternoon. I was so excited.
I had another night of being awake....the ward was so busy and full of really sick people, but I really needed some sleep. In the morning I had the shock of my life. The consultant came round and said I could go home! I was soooooooo excited. I thought he meant until Sunday, but when he said I could stay home I was in tears. I knew then I had crossed my first hurdle..and thanks to the donor I was looking forward to a new and happy life!
I will keep you all updated and do it more regular now. I just had to have time to accept it first. It happened so fast...which was a good thing, but I still can't believe that it has happened! But I thank god that it has!

Saturday, 17 May 2008

A busy week........but hospital free!

This week has flown by, just lately everyday seems the same, maybe its because I can't do so much at the moment. But I am not complaining, at least I can still get out of my bed, even though these days I look and feel more like Roly Poly. But hopefully my weight will stabilise now and I will start to lose a few pounds. Stupid steroids..but very necessary to help me breathe.

If you remember in my last post I mentioned that I had a rash due to my medication making me sensitive to the sun. Well for those of you who haven't noticed...the sun has gone and so has the rash! So maybe I should move to the cooler climate, and all will be well. In the future I will make sure that I put some high factor sun screen on then the rash should not be a problem.

I have had a really busy week this week. I was asked to appear in a DVD about people with Long Term Conditions. I am all for helping anyone with a LTC as it is sometimes very easy to get yourself into a downward spiral....I know as I have been there. So I appeared in the DVD. It was for the NHS to report the New Vision. There has been a lot of controversy about the Vision, but I believed strongly that the work would make a difference for patients like myself. I will let you all decide what you think of the video. If you click the link I am on another link "Launch in Vision 2". Then fast forward to LTC. I will put the link on, but not sure how to do this properly so please forgive me: ( think it might be wrong)
It was an interesting day, but very tiring. I really do enjoy talking about raising awareness etc.... and I met some very interesting people. Lady Archer was there and she was a lovely woman. Very genuine and friendly. I would like to have a job doing public speaking when I get my transplant( Notice I said when and not If ). I can remember the first time that I had to speak in public. I was terrified, but I really enjoy it now. I just stand and try to make sure that no one falls asleep before I am finished. If I see someone nearly dozing at the back,or waving a white hankerchief... then I know that I have rambled for to long, so I try to bring it to a close. I don't think that has happened just yet...but give it time! Bob came with me, usually I must admit that he seldom comes with me during my talks, as he finds it very hard. Most of the talks come straight from my heart and can be very emotional. As he has had to see me suffer from my disease, it gets very hard for him to see me discuss it to everyone. But I feel if it makes the world more aware then we must try everything that we can to make a difference.It also makes me feel useful....there is so much that I cannot do now, that it is always good to focus on things that I can. Bob has been my rock the last few years and I don't think I would have got on the list if it had not been for him and my family. I have not always been the nicest person to know when I am not well...but hopefully it will all be worthwhile in the end.

This week I have been hospital free,no appointments all week, must be a record! but it has been lovely and has given me some spare time. I have my support group on Monday, so had a few jobs to do before the meeting. I must admit that I have not been so active as Chairman the last few months, I have just not been well enough, but there is still a lot that I can do. We have a newsletter every quarter, so I got into action and decided to print the summer edition before Mondays meeting. This sounds easy....or so I thought, but it took me ages. Trying to find relevant articles for the Summer edition wasn't easy....but I love a challenge. Now I have finished and it will be at Mondays meeting to hand out to all our members. What a relief, at the rate I was going it would be next Summer that they would be looking at! This meeting we are having a pie and mash day, I am so pleased that I have not got to cook. 45 hungry people wanting their dinner....I pity the chef! Most of our members have COPD, and many of them are 55+ they are wonderful people with hearts of gold, and I have learnt so much since being with the group. It makes such a difference to chat to people who are going though similar circumstances as yourself. And I feel that I have them to thank for being so positive...I was such a negative person before I joined and would never be here now, if they hadn't changed my life around. So for anyone who has a illness, it really does help to have support.

This weekend I intend to get some rest....I am feeling really tired after my hectic week, and it will just be nice to chill out for a time, with Bob, family and friends. Sorry this post is so long it always takes me forever to get started,and then I am never able to stop! most of it is a load of rubbish, but as I said before it comes from the heart! Off to get my PJ's on now. Night Night x x

PS .....I want to say that I am thinking about everyone who has just had a transplant, I have been reading a few blogs about their experience since the operation and I feel that it is really helping. So a big thank you. I hope you all have a fulfilling life, and that the people that are still waiting, get their new organs soon! x x

Saturday, 10 May 2008


I know that most people will be enjoying this hot weather...but I am really suffering at the moment. I am covered in a rash which apparently is caused by a sensitivity to the sun. Even though I have been sat in the shade. They think that my medications have caused it. I was aware that post transplant I will not be allowed to sit in the sun as the anti-rejection drugs will cause the same symptoms. So I had to get up at 5am today to have a cold shower as the rash was really itchy ,and then had to cover myself in a cortisone cream that the doctor gave me! So much for summer, I was looking forward to sitting under the parasol...hoping there might be some breeze to help my breathing, but not a chance now! I suppose I could always stick my head in the fridge or spend the entire day sat in my bedroom with the air con on! I have also been given a sun block, the pharmacist hasn't got it in yet, but hopefully that should do the trick.

My week hasn't been to good health wise, I am still coughing and even more breathless at the moment. I am on antibiotics, but its not really doing the trick... so I might have to go in for a few days next week for IV's. I have a port... so the access is easier than having to find a vein, my veins are non-existent so my port makes such a difference. I am hoping if I do have to be admitted they will let continue IV's at home. I am very lucky as I only live 20 minutes away from my hospital, so I don't think it would be a problem. I really want to avoid being a patient at the moment, but I think it is important to stay infection free in case my pager goes off.

I had 2 birthdays to celebrate on Bob's birthday and my son-in-laws, so it has been a busy and expensive week. It seems to be that 70% of people I know or am related to have their birthday in May. So I think that in the future I will be asking everyone who is thinking of being my friend when their birthday is...if they say its in May then I might avoid them a find a friend who has one in August! Joking aside I had a lovely day yesterday...Bob was happy with his presents and spending the day with me, and all the family came over. In the evening we went to Bobs son's and had a massive Chinese meal, so much for my diet! I treasure days like this...each day is precious and should be lived to the full. I intend to live mine.......its a struggle but worth it and hopefully my day will come!

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Monday, 5 May 2008


Not a lot has happened health wise since my last post. It has just been a case of getting used to my pager and actually being on the list! This can be traumatic.. as for some reason every noise you hear seems to sound like the stupid pager. Noises that you would never have heard in the past seem to become very common..even the sound of a child's horn on their scooter nearly gave me a heart attack. But I am pleased to say that I am a little more settled now!

My breathing is a little more labored than usual. I am not to worried about it, and am trying to stay as mobile as I can. I know if I sit down all the time then it will make matters worse. With COPD it is always better to stay as mobile as possible...even when on the transplant list, as if you have no exercise and you get mucus lurking in your lungs, it will always turn to infection. I am not saying that I will be walking marathons at the moment, but even a slow walk around my bungalow will help to keep it moving...even though at times this proves much harder to achieve now! little and often is a good motto to have.

This Bank holiday my scooter has had an airing. I could hear the shops calling my name! Yes I could have stayed in bed, but the weather has been beautiful and I thought that fresh air would do me good...not that the air around here is very fresh... but better than staying inside on my PC. Yesterday we went to Cambridge. It was so nice to see family's out together. I love this time of year. At the moment I can't seem to manage the heat very well, so this weather is perfect for me! We managed to get around all the shops on the Retail Park without me knocking anyone over...which for me is a miracle. I always seem to find the highest stack of toilet rolls or some mad person who walks right in front of my scooter...if looks could kill I would have been gone a few times by And as for toilet rolls you may have noticed that the Andrex puppy seems to be off our TV screens.... I think he is still hiding from me.

On a more serious note I have decided that if my breathing still feels like this next week then I might call up the docs and see If I do need some IV antibiotics. I am on tablets at the moment, but they don't seem to be making much difference. I will see how things progress and keep you all posted. I hope you have all had a good holiday weekend!

Wednesday, 30 April 2008


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 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 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 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 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 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 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 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.

Friday, 25 April 2008


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 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

Monday, 21 April 2008


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 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 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