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Lung transplant - how do youmake that decision?

Kelda profile image
146 Replies

hi everyone,I have just been told that I forfill the criteria for a double lung transplant at Birmingham QE.

It’s massive news and I am delighted to be accepted and have that chance, however I’m not sure I’m ready to make that decision. It all feels a bit surreal.

I lost my partner 2 years ago to cancer and don’t really have anyone apart from my now grown children to mull it over with.

How do you go about making such a huge decision?

Any input is welcome, I’m feeling out of my depth.

Thanks everyone for all your support

Love K

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Kelda
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146 Replies
Damon1864 profile image
Damon1864Volunteer

Hi you don't sound too sure about the transplant, but only you can decide if you want to go through with it. Have you talked to your GP, Nurse or consultant about it. Talk to your family and friends it will help. Hope you make the right decision for you, please let us know. Maybe someone on here can help , I really hope so. Take care.

😊 Bernadette xx

Kelda profile image
Kelda in reply toDamon1864

Hi Bernadette,

Thanks for your reply. It’s early days and I’m feeling a bit overwhelmed but I will talk to my gp and I’m going back to Birmingham next month to see the transplant psychologist and to meet someone who has been through the procedure. I’m also talking it through with my family.

It’s wonderful to have so many responses and help here.

Warm wishes

K X

Damon1864 profile image
Damon1864Volunteer in reply toKelda

I really do hope everything goes well for you, please keep us all informed. Don't forget to keep posting, take care.

😊 Bernadette xx

Hi Kelda, that is great news...and you now have options. Let the info sink in and weigh up all the positives being offered to you and live your life to its full potential xx

Kelda profile image
Kelda in reply to

Cheers Sukio1,

Good advice. I’ll do my best.🙂

Good health to you and my thanks.

Love K X

Hacienda profile image
Hacienda

Hi Hun. I replied to you on QueenBean's post. xxxxx

SquirrelsHolt profile image
SquirrelsHolt

Hi. Dont feel you have to make a final decision today. You may have so many questions that your nearest and dearest can't answer. Take a deal breath(no pun intended) but definitely speak to your GP or Lung Con.

Kelda profile image
Kelda in reply toSquirrelsHolt

Thanks Squirrelsholt,

I’ll do that. There is a lot to consider and I’ll probably have loads of questions. When I was there, there was so much information to absorb after 3 days of tests that my brain started to fog over and I just wanted to get home, but they are happy to wait for me to decide. It’s good to talk to other people and get their personal first hand experiences rather than just read about it.

Good luck to you and thanks.

Love K

Hi kelda,

Such a huge decision and it is something I so had to make when I was told I needed a lung transplant. I had no choice I needed it or I'd be dead within a year. I also had a little girl who I needed to be there for. Decision made I was having it. I waited 7 months and then I got the chance and here I am two years later sucrssfully lung transplant living life to the full and I'm here to see my daughter grow up. For me there was no alternative. Think of the things you miss out on if you didn't have the transplant? And think of the things you see if you do?

Kelda profile image
Kelda in reply to

Hi ejbid,

Thanks for your uplifting post.

What a wonderful result. It’s a lot to get my head round, but I will get there. It could be amazing. I’m sure if I go through with it I’ll be asking loads of questions and your input will be much appreciated.

The best of luck for the future.

Love K X

Spacecat1 profile image
Spacecat1

Well done. My consultant mentioned that I may fit the criteria for lung transplant. My hubby said I looked shocked and pleased at the same . Like yourself so many questions to ask. I wonder if there other people who live nearby to us ( I live in Birmingham as well) who we can talk to sometimes I think talking to someone who's had the same thing done could help. Obviously keeping in mind the nurses and consultants to 3rd ok to you don't say how old you are I'm 58. Hubby still with me our daughter all grown up we lost our Son about 6 years ago to a rare illness. While he was here he was supportive I'd just been diagnosed with copd. You will be amazed how your kids can help. Tell them your worries fears or may be talk to a close friend or relative don't bottle it up. Best wishes

Kelda profile image
Kelda in reply toSpacecat1

Hi Lizzric,

Thanks so much for your post. I’m sorry to hear that you lost your son. I too lost my first son, to Sids 28 years ago now and my daughter was still-born 4 years later. You never forget. He was only 6 months old. They are both forever in my heart. I now have two children; my beautiful daughter who is 26 and my wonderful son who is 20.

It’s good to talk things over with people who have gone through or are in the same position. I’ve never been great at asking for help. I’m beginning to realise it’s one of my biggest faults. Im 50 soon to be 51. My kids are fantastic and I’m so proud of them. They’ve had so much to cope with over the last 21/2 years ; my Illness getting much worse and losing there dad.

They give me so much support. Now we have this opertunity. It could change so much. It could be wonderful, but there’s no guarentees and it’s such a risk. I’ll get there eventually I just need to have faith that I’ll make the right call.

Wishing you good health and good luck

Love K X

Spacecat1 profile image
Spacecat1 in reply toKelda

Thank you. Speak soon.

Mandy6513 profile image
Mandy6513 in reply toSpacecat1

If you have Facebook you can find loads of support groups for transplant pre and post and family and friends . If you just type in lung transplant it will bring groups up. I'm on the harefield transplant support group and freeman's support group and they have been invaluable to me x

Caspiana profile image
Caspiana

Hi Kelda . 😀

I have been on the waiting list for seventeen months now. I also found it hard to make the decision. I spoke to my family a lot about the pros and cons. They listened and let me bounce my fears off of them, but I am grateful that they never told me what to do. I knew I had to and wanted to decide for myself. At one point I almost thought I should just let nature take it's course, since my children were grown and were no longer dependant on me. But then, I thought of the things I'd always dreamed of doing , nothing grandiose but simple things like running with my dog on a beautiful beach, or spending time with my aged mum, being part of the lives of my future grandchildren, and I thought to myself "Are those things worth the risk?" . And I had to conclude that they were very worth it.

Transplant is not for everyone. It is such an individual choice. Don't rush.

I hope you find peace with your decision.

Warm wishes,

Cas xx 🌿🍂

Kelda profile image
Kelda in reply toCaspiana

Hi Caspiana,

Thanks for your post, you sound just like me. I know it’s early days and I need to think this out and learn more about how it all works. The team are arranging for me to meet someone who had a transplant a year ago, so that will be invaluable I think.

I hope you get your transplant soon. The best of luck to you.

Love K X

sibkev profile image
sibkev

for me it was simples live or die so no brainer and id do all again in a hart beat qe is brill to loads of after care

Kelda profile image
Kelda in reply tosibkev

Hi sibkev

Thanks for your post. Well done on making such a good recovery. I’m sure I’ll probably have loads of questions for you as this plays out.

Good health to you

K X

ClaireS75 profile image
ClaireS75

Hi Kelda.... we had to make that decision for our 10year old son 18 months ago. It was most difficult as we had to decide whether to put him through it. In the end I was ready to commit and his dad was not ready yet so we waited 3-4 months before deciding. At that point it was a no brainier as he was deteriorating but I think you need to be in the right place so do it when it feels right to you. That way you will be both mentally and physically prepared. Feel free to pm me and good luck xx

Kelda profile image
Kelda in reply toClaireS75

Hi ClaireS75,

Thank you so much for your reply. You have been through so much. It’s one thing to make this decision for me but as a parent it must have been worse. I can understand his dad’s initial reluctance. I would do anything for my kids and they play a huge part of this decision, even though the youngest is now 20. It puts it into perspective, though and I’m constantly aware of the clock ticking away in the background. I just need some time to let it all sink in I think and I need to have faith that I will make the right decision for me and my family. It’s an incredable offer of what could be a better future, after all.

I hope that your som is now in a better, healthier place and wish you all the luck in the world.

Love K X

ross-35_ profile image
ross-35_

Hi Kelda,

In May this year I had a double Lung Transplant, the decision was one of the hardest things to make, but once you decide just go for whatever you choose. However PLEASE READ THE FACTS, its after the transplant that you have to be prepared. Read the book you should have been given. I flicked through it not realising some of the disadvantages that could Occur.There are lots of drugs to be taken each day, it will be hard for you to remember them all, some drugs i was on made me feel really sick, or upset my stomach, its trying and testing until they get it right. The fatigue will slow you down, read up on the side effects..some will happen some won't, we are all different. I would not have made it until Christmas, I have two grandchildren and that was my incentive, i want to have fun and spend time with them. I also live alone, and it can be hard until the strength comes back, but you will manage. I am scared to write too much, it is a big decision, at times i have regretted having the transplant when physically its been hard to cope. However I know i did the right thing. All the best for you, please take care and read ALL THE INFO before you make decision. Good Luck xxx

Mandy6513 profile image
Mandy6513 in reply toross-35_

Hi Ross. Just wondering where you had your transplant. I'm on the list at harefield x

ross-35_ profile image
ross-35_ in reply toMandy6513

Hiya I had mine done at Wythenshawe Hospital in Manchester a superb place and its like a family visit when i go for check ups. I am sure you will also be taken care of at Harefield and i wish you a speedy wait. x

Caspiana profile image
Caspiana in reply toross-35_

*HUGS* ross-35_ Hang in there. xx 🌿

ross-35_ profile image
ross-35_ in reply toCaspiana

Hiya I really hope you get your transplant very soon...I had a friend of mine to phone up the Unit and tell them i was a lot worse than i was...in fairness i was very ill...two weeks later i got the phone call to go! So see if a bit of pressure can help you too. I wish you well. x

Caspiana profile image
Caspiana in reply toross-35_

Hello Ross. 👋

In a way I do want to get the operation soon. But on the other hand , because of all the reading up I have done, I know perfectly well all the difficulties that could arise post-transplant. So, I enjoy every day I have now, rather than live in the hope that transplant will give me back a somewhat normal existence. Of course if I can live without oxygen, be able to run again and feel good, that would be absolutely fantastic. 😀

Take good care. xx 🙋🐕

skylas profile image
skylas in reply toross-35_

Hi ross I've bn in hospital over Christmas and new year with bad infection in both lungs and very high heart rate am home now but still really ruff cant move at all without gasping bad I'm on 44mg steroids a day so they wont call u in unless u on 15mg a day so hoping I feel better soon so I can start cutting down on them x hope u ad a good Christmas n new year x how r u feeling now any problems cheryl xx

ross-35_ profile image
ross-35_ in reply toskylas

Oh dear you do sound in a bad way! It will pass honest. I had been in and out of hospital with loads of infections, i know its hard but please be patient until this one goes... and it will. Then you need to phone your Lung Coordinator and tell her whats been happening over Christmas.....it will be to your advantage, as she will pass it on to Consultant. They will move yo on the list I hope! Meantime do all you can to aid your recovery steroids will help too., although 44 seems high 6 per day @ 5mg can be 30g which id normal ish...but no more antobios is good,infection is cleared. So just Rest, drink lots and do not over work you r lungs, rest then. Let me know how you get on , I am sorry for this but so many of us have these awful infections......it will go!!! Fight it xx

skylas profile image
skylas in reply toross-35_

Aw thanks so much yea il let u no what happens x how u feeling n doing x

ross-35_ profile image
ross-35_ in reply toskylas

I am doing ok ish I Have to see a Kidney Consultant next week,then a Urologist about my bladder...but the lungs are well and healthy!! I just hope they can sort them out so I will be fine then.xx

skylas profile image
skylas in reply toross-35_

Why they giving u problems cause of the medication x glad your lungs r doing well though x

Kelda profile image
Kelda

Hi Ross-35

Thanks for your honest reply. I like you flipped through the book the morning before the final meeting. There’s so much information. I can’t really remember what questions I asked. I don’t know how to weigh up the pros and cons ,either can be extreme, maybe it just comes down to luck. I’ve been ill for so long I can’t imagine what it would be like to be off the oxygen and to be able to breathe.

It’s an amazing thing they do and it could change my life.

You sound like an incredably strong person and I’m really pleased to meet you.

Good luck with your ongoing recovery. May you go from strength to strength.

K X

ross-35_ profile image
ross-35_ in reply toKelda

Hi Kelda,

I hope i wasn't too honest! I wish you lots of luck, and a speedy waiting list! Take care and if you need me just write xx

Kristicats profile image
Kristicats

Hi Kelda

Well at least now you know that transplant is an option open to you.

So nows the time to find out as much as you can from actual people whom have gone through the transplant op. I do know Birmingham Is one of the leaders in this field. It may take a while for a transplant but worth starting your considerations now to at least get you on the waiting list. Let the info sink in and make enquiries where you can. There may be support groups offering advise and real information worldwide as well as on here.

Kelda profile image
Kelda in reply toKristicats

Thanks Chriskho,

I will do that. I know we’re all different but first hand advice will be invaluble and forewarned is forearmed- (sorry for all the cliche)

I’m just trying to talk to as many people as possible and get all the facts.

There’s a lot to consider, I’m a little overwhelmed but hopefully the fog will clear soon and I’ll know.

Good health and thanks for your advice.

Love K X

Mandy6513 profile image
Mandy6513

As someone who is on the list I would suggest you do all the assessments then ask all the questions you have. I waited a few years before I said yes and I wish I had said yes sooner. X

Candyred profile image
Candyred

Hi Kelda .. if this were me I think I’d need a few days to let things settle .. ask questions .. maybe have a family meeting? .. get a wee book and write everything down .. good luck xx

mikeadams51 profile image
mikeadams51

What ever you decide will be the right decision because you made it

Kelda profile image
Kelda

Thanks for all your good advice. I’m having a few days trying not to think too much about it, going back up to Birmingham I’m a couple of weeks so I’ll be sure to write all my questions down before I go.

Love K

ross-35_ profile image
ross-35_

Well done for getting the assessment at Wythenshawe! You will be with the Jim Quick Team who are the best!! There's quite a lot of tests to be done...all over your body not just the chest, so they can see if the rest of your body will be ok after transplant. I just trusted them entirely with the tests, I did not go into details.However you will have a Transplant Nurse who will explain them all.1. Appreciate you have the assessment..many do not get this chance. 2. Be brave and go for the tests, its a full MOT, 3. Everyone is different do not listen to 'the expert patient' unless they are being positive. Be brave and just do what they tell you to do, it does not hurt, each test is different......what a chance yo have. Let mw know how you get on, This is the start....

skylas profile image
skylas in reply toross-35_

Hi thanks for replying I'm terrified as I hate n I mean hate needles dont no how I'm guna get threw it r u glad u did it what wud u say were the worse times dont b afraid to say ha x can u tex me instead if not that's ok x

ross-35_ profile image
ross-35_ in reply toskylas

We are not able to text or phone..sorry its in the rules! Now i want you to stop being scared, nothing or nobody will hurt you, it may be a bit uncomfortable, at positions you have to go into to. You may wonder what they are doing...but you will be so looked after, so no need to be scared honest.....only needles I can remember is for the blood test. Just do not look at the needle, if yo don't see it you won't know when it is being put in, and they are so gentle they say just a little prick...but they are so good at it I never felt that even...so don't look and take a deep breath and it will be over....Rather than concentrate on the assessment and being so scared, please try some relaxation breathing this will help you so much, it did me, and knowing that my whole life would be better after the transplant... I am proud of you for asking for help and want to know how you on, let me know when you are having the assessment please. Learn to control YOU, breathing in and out you are in control, plus it helps. I wish i could say this awful thing will happen in the test.....but really there is no pain and I am certain yo will handle it all really well. xx

skylas profile image
skylas in reply toross-35_

Hi thanks for getting back to me x it's the heart catheterization that's freaking me out especially if it's done by the neck omg x r u glad now that u ad it done n what wud u say was the worst part I no everyone different n thanks so much for the words of encouragement x

ross-35_ profile image
ross-35_ in reply toskylas

The heart catheterization does not involve the neck..the incision for mine was in my groin, it can also be in the wrist...you are numbed so don't think of pain!! Thus is a bit uncomfortable but pain free!!You can see the whole thing on screen if you want, its very clever and lets them see if your Heart is ok , I There are videos you can watch to see how this is done, if you are brave!! The camera down your throat...if you need that before op, you will be numbed, in fact I think i was knocked out..PAIN FREE!! I have had a few after, no worries painless and done in a short time.

I wish i could stop you frightening yourself, its totally understandable I can sympathise with you, ..but I honestly just thought what a great place to have a transplant, I am lucky to get this chance...try to be brave my friend, it will let them see that you are mentally able to go through it all too. I just trusted them to do what they had to do.....I did not go into any details, I still haven't!! however I can walk and breath without being attached to oxygen tubes! I can talk...the benefits out weight an assessment, please try to be positive. Hope this helps x

Caspiana profile image
Caspiana in reply toross-35_

Actually it can be done through the neck too ross-35_ I only know because mine was done through the neck and the second , the groin and the third the wrist. But I should add it must be uncommon because they could not get a good vein at the time. It's nice they knocked you out too. 😊 I hope you are doing well. xx

skylas profile image
skylas in reply toross-35_

Il let u no how I get on x thanks so much for all the advice x

skylas profile image
skylas in reply toross-35_

Aw thanks so much x

ross-35_ profile image
ross-35_ in reply toskylas

Be brave and optimistic, always xx

skylas profile image
skylas in reply toross-35_

Il try n hope u keep well x

skylas profile image
skylas in reply toross-35_

I ment to ask u did u say your under wythenshawe how long after the 3 day accesment did u wait till they told u if u ad passed the test or not x

ross-35_ profile image
ross-35_ in reply toskylas

Hiya i think i went in on the Tues, got out Thurs night and got the phone call on the Friday afternoon..that bit was quick..i then waited a year for the phone call to go in!! I was really bad then constant oxygen could not walk or talk.....different now!! Your turn will come look forward to each step, i really hope you get a yes!! When you are there, do not be scared, be optimistic, Take care xx

skylas profile image
skylas in reply toross-35_

Aw thanks il let u no how I get on I've got a few other health issues like stomach ulcers n a hernia n cyst in one kidney n kidney stones in other so I'm hoping these will not go against me x

ross-35_ profile image
ross-35_ in reply toskylas

wellk whoever put you through for transplant will know that...and they are not concerned. You will just have to go ahead and see what they think I am off out now, perhaps you could ask your doctor and see what they say xx

skylas profile image
skylas in reply toross-35_

Ad my 3 day accesment just waiting to go home but dint have bone s an cause short of staff I will find out end of month weather it's a yes or no il let u no x hows u x

ross-35_ profile image
ross-35_ in reply toskylas

I am so proud of you!! Well done. Was it ok? Did it hurt..I hope not, how did the blood tests go. you were scared of them? Did you like the nurses, they will be helping you once you get YES X

skylas profile image
skylas in reply toross-35_

Aw yea went ok tuk bout 30 miles of blood ova the 3 days n the ct thing with needle went ok but the heart one hurt a bit cause they were doing it for 2 hours n sore afta wards but not unbearable so glad it's all done just hope afta bone scan they say yes x aw thanks so much for asking n keeping in touch x how r u today x

ross-35_ profile image
ross-35_ in reply toskylas

SO pleased it went ok , you did well with the blood too. I am sure the bone scan will be ok, they are very busy there at the moment to. I told you the nurses were great it will be like a family there for you.so now its wait and see, then wait ad see again until they phone you and tell you they have a match!!! I go next week for check up but lungs are fine, its just keeping away from colds and flu as the immune system is very low but the tablets help with that. Please let me know when you get the YES. x

skylas profile image
skylas in reply toross-35_

Aw keep well as u can x yea il let u no when they let me no x aw thanks x take care x

skylas profile image
skylas in reply toross-35_

Hi just to let u no I'm now on the waiting list for a lung transplant x how long did u wait n did u have any dry runs x and what do they do to u when u get to hospital xx hope u r doing well xxx

ross-35_ profile image
ross-35_ in reply toskylas

You passed well done!! I Waited for a year, I was really bad on oxygen concentrator most of the time...but i did exercises everyday to try to keep muscle...that will help you. I got the phone call and they said ambulance was on its way to get me as my lung were waiting for me....Pack a bag for when you go, do it now you never know when the call will come. I was put into a room and changed into nightie thing...my sons came in their car to be with me. I Spoke to the anaesthetist answered his questions. They have every detail on you in file. I was then put to sleep, my boys stayed with me until i was taken to theatre. It took 3 hours for the first lung to go in, the second one was difficult, it was a lot longer, But it worked. I was out for a day or two, wired up...but i was breathing. The nurses will help you all the time you are there, you will get to meet other patients too. Just get there and let them do whatever, it will be worth it. No worries these guys know there stuff. I am so excited for you. Take care keep away from colds xx

skylas profile image
skylas in reply toross-35_

Aw thanks so much x did they do any needles or I.v.s or anything while u were still awake b4 they put u to sleep I'm guna ask will they do then when I'm asleep x hope u r keeping well x n thanks so much x

skylas profile image
skylas in reply toross-35_

Hi x sorry to keep mithering u x so when u got your call n went to hospital did they put the needle in your neck or the epidural in b4 they put u to sleep x how u doing now r u getting out n about how u feeling in yourself x any problems xx

ross-35_ profile image
ross-35_ in reply toskylas

I honestly don't remember about the needles but HH gave you more info...i was so ill i did not care about what they were doing! All i know is it eventually went well and I am out and about now with out a piece of plastic stuck up my nose and carrying the oxygen bottle.....just relax and wait for the call it will come and you will be in the best hospital with a great team looking after you. Did you get the book with details from them...if not ring your Transplant Nurse as that will answer so many questions! Take care xx

.

skylas profile image
skylas in reply toross-35_

No not got the book I fink because I new everything she was telling me n she said how did I no so much I said I'm on forums n have red loads about it x so do u get out n about now x r u havin any problems at the mints with anything x n r u at the hospital a lot of check up x thanks for message in x

ross-35_ profile image
ross-35_ in reply toskylas

Honest you need that book...I didn't read it but wish i had, as there are a few things that can go wrong, and its best to know about tem, they tell you everything you need to know. Yes I am up and about now and enjoy breathing ok. Its the tablets there are lots to take and we need to take them, thats only moan. I used to go every two weeks,m then once a month now ts every two months! Safe hands at Wythenshawe! xx

skylas profile image
skylas in reply toross-35_

Aw that's great x yea they said I cud take up to 60 tablets a day x how many r u on x n il definitely ring them n ask bout the book x

ross-35_ profile image
ross-35_ in reply toskylas

its more like a leaflet book, sure they will know its about everything! My tab;lets have been reduced about 20 per day now, its morning and some night. Pain at the start but easy now.

Read up on Wythenshawe Jim Quick ward.. its so special.c xx

skylas profile image
skylas in reply toross-35_

Aw thanks for getting bck to me glad your doing well yea will have a read on the wythenshawe mom quick wardcthingvc what it says x thanks again n keep doing well x take care x cheryl x

skylas profile image
skylas in reply toross-35_

Hi x how u doing now x any problems x

ross-35_ profile image
ross-35_ in reply toskylas

Hiya

My lungs are great breathing is easy, taking drugs and doing as they tell me. However I have other problems I have to deal with, I just don't want to talk about them as nothing to do with Lungs. They are the healthiest part of me! There will be others on here that will give you doom and gloom stories, not me sorry. xx

skylas profile image
skylas in reply toross-35_

Ha aw I no u always say positive things x so glad your lungs r doing great x have a great Christmas x tex me in new year let me no how u still doing x take care x cheryl x

ross-35_ profile image
ross-35_ in reply toskylas

I really hope you have a lovely Christmas and ext year will BE Happy new LUNGS year!!!Take care xx

skylas profile image
skylas in reply toross-35_

Ps your the only one on ere who is in wythenshawe like me x do u no any more who have ad it done there x

skylas profile image
skylas in reply toross-35_

Ps aw the nurses were great x

ross-35_ profile image
ross-35_ in reply toskylas

Hu there, any news yet? Really hoping for you x

skylas profile image
skylas in reply toross-35_

No got to have bone scan on 25th cause they were short staffed n then they said afta that shud no by the end of this month il let u no as soon as I no x aw thanks x hows u x

ross-35_ profile image
ross-35_ in reply toskylas

Oh that sounds good...cos everything else must be ok....if it wasn't they would not do bone scan, fingers crossed again!! I went for check up on Thursday my lungs are fine!! You take care now xx

skylas profile image
skylas in reply toross-35_

Aw thanks so much xxx n that's great news your lungs r doing fine hope they stay that way xx take care xxxxx

skylas profile image
skylas in reply toross-35_

Ment to ask why was u in hospital 5 month x and what wud u say was the worst bit x n did u have stitches or stapled DiD it hurt x how r u getting on now is it a lot of metinance x

ross-35_ profile image
ross-35_ in reply toskylas

Hi there, I don't want to give you all that i went through as you will not have the same. I had stitches but i was out for the count so never felt a thing. You have yet to get your YES for transplant if/when you get it you will receive a booklet that will give you all the good points and bad points. Read it thoroughly please it will help you lots.

ross-35_ profile image
ross-35_ in reply toskylas

Caspiana had hers done through her neck, she may explain it to you xx

skylas profile image
skylas in reply toross-35_

Ps how often after the transplant do u have the camera down your throat x

ross-35_ profile image
ross-35_ in reply toskylas

Caspiana had hers done through her neck, she may explain it to you xx

soulboy118 profile image
soulboy118

I was offered a double lung transplant last dec at whythenshaw but decided to wait and see, I'm not on oxygen not been admitted to hospital ,come close but I've been lucky yet I'm at 18% lung function , I'm not yet at the point were I concider myself ready for transplant although my consultant thinks I am , you must decide when you are ready ,it's a lonely decision which must be made very coldly and clinically and decided only for you by you , may I suggest you read posts by Caspiana she has excellent linguistics skills and puts a human face to transplants

skylas profile image
skylas in reply tosoulboy118

Hi why r u waiting n seeing n not just goin for it it's a lot to take in isn't it I go for the 3 day accesment in 2 weeks at wythenshawe x

soulboy118 profile image
soulboy118 in reply toskylas

Good luck with the assesment ,they are very thorough with the tests ,hopefully you will pass these tests, being on the jim quick ward is an eye opener and to be honest a little scary, I'm in a peculiar situation ( but who isnt) I'm not at deaths door, at rest I breath reasonably easy I still get out for a pint with my m8s go on holiday twice a year abroad with difficulty but I've never been one for giving up or backing down but I must admit walking is difficult as is doing simple activities but i struggle through so for me my copd is medically controlled enough so i can lead a restricted but fulfilling life ,that's why I've put myself on the wait and see list , I'm not at the point were life is too difficult yet although i know it will come , I excercise 4 days a week at the moment, it's usually twice a week ( this chi,gentle excercise and just started pul rehab course) .

Luckily in still me and not let my copd rule me ,oh it has its days and beatsxme up sometimes but as long as I win the war I'm prepared to lose a few battles .

Good luck at whythenshaw the staff and docs are lovely , these tests are sometimes invasive but you will be fine ,stay strong x

skylas profile image
skylas in reply tosoulboy118

Yea I'm the same I'm ok if I dont move n still drive n stuff I'm dreading it as i hate n I mean hate needles I just want it done with x

soulboy118 profile image
soulboy118 in reply toskylas

By the time your 3 days are over you will have lost your phobia of needles lol x

skylas profile image
skylas in reply tosoulboy118

Ha why do u say that cause il b havin loads u mean or I hope not x

soulboy118 profile image
soulboy118 in reply toskylas

Does the word " pin cushion " mean anything lol

skylas profile image
skylas in reply tosoulboy118

Omg aw why u say that will I b having that many aw dont no weather il cope but I've got no choice if i want to b able to breath n have a life I'm guna ask can i put numbing cream on first I've got loads of tubes of it ready ha x

soulboy118 profile image
soulboy118 in reply toskylas

The " vampires" are good at taking blood I'm just playing with ya lol

skylas profile image
skylas in reply tosoulboy118

Ha I dont mind them taking blood cause they only give u one needle then take it all from there ha I hope x when it's your turn il say the same to u lol x

Twinsmum10 profile image
Twinsmum10 in reply toskylas

I was assessed at the queen Elizabeth in Birmingham last month for a double lung transplant and the tests are really not that bad the only needle I had was for a blood test the rest was just the usual basic tests apart from the heart catheter which is not painful please try not to worry the hardest part for me was waiting for the decision I hope all goes well for you

skylas profile image
skylas in reply toTwinsmum10

Hi x u no the heart catheterization where did u do it threw the groin or the wrist x aw I hope I'm the same n just have blood test n the rest just normal test x ps did u pass them all x

soulboy118 profile image
soulboy118 in reply toskylas

They did both to me ,right wrist and left groin, the groin didn't work so mine was done through the neck ,right hand side

skylas profile image
skylas in reply tosoulboy118

Ad my 3 day accesment but not my bone scan cause of short staff just waiting to go home so will no at end of month weather its yes or no x il let u no x hows u x

Twinsmum10 profile image
Twinsmum10 in reply toskylas

I've had it done twice and both times have been through the neck. I passed the assessment and I'm now on the active list waiting for that call

skylas profile image
skylas in reply toTwinsmum10

Aw wow good luck hope u get the call soon x

Twinsmum10 profile image
Twinsmum10 in reply toskylas

Thankyou..hope all goes well for your assessment keep us updated

skylas profile image
skylas in reply toTwinsmum10

Ad my 3 day accesment just waiting to go home now but dint have bone scan cause short staff so will no by end of month weather it's a yes or no il let u no x hows u x

Twinsmum10 profile image
Twinsmum10 in reply toskylas

Hi really pleased for you fingers crossed for you they say yes at the end of the month thanks for letting us know I'm doing ok take care and let us know the outcome

skylas profile image
skylas in reply toTwinsmum10

Will do n n same to u xx take care xxx

Caspiana profile image
Caspiana in reply toTwinsmum10

Good luck Twinsmum10 . xx 😊😀👋

Twinsmum10 profile image
Twinsmum10 in reply toCaspiana

Thankyou Caspiana I passed the assessment and now on the active list..well done to you I have been reading your story with interest seeing a more real side to life after transplant thankyou for sharing and best wishes to you x

Caspiana profile image
Caspiana in reply toTwinsmum10

Very very pleased for you Twinsmum10 . I don't want to sound like a know it all, but please, please keep your core and legs as strong as you can. The sooner you can use your legs again post transplant the better your recovery. I look forward to reading about your journey too. Best wishes. xx 👋😁

Twinsmum10 profile image
Twinsmum10 in reply toCaspiana

Thankyou I am oxygen dependent but I do push myself to get out and about when I can. I'm also signed up for pulmonary rehab which will hopefully start soon x

Caspiana profile image
Caspiana in reply toTwinsmum10

Very, very good Twinsmum10 . xx 👋

Caspiana profile image
Caspiana in reply toskylas

Hi skylas . You will get used to needles. I remember on the first day of evaluation they take a dozen viles of blood. The needles are the easy bit. You will get used to it. Please learn as much as you can about transplant whilst you are there. It's so very important to understand fully this undertaking. The best of British luck! xx 👋

skylas profile image
skylas in reply toCaspiana

Hi x why do u say the needles r the easy bit x I cud never get use to them but I've got to haven't I to go threw with this x r u glad u did it x u sometimes have no choice do u x I'm just sick of gasping every time I move or walk x

Caspiana profile image
Caspiana in reply toskylas

Hi skylas , 😊

I say it because it is true. Compared to the actual transplant operation and the weeks following the operation, needles are a very small inconvenience. And yes, you will get used to it. And yes, I was sick of gasping every time I moved. So grit your teeth and just go for it. It will be okay. xx 👋

skylas profile image
skylas in reply toCaspiana

What u no now wud u still have gone threw with it n what wud u say r the worst parts n how do u feel now have u got your life back x

Caspiana profile image
Caspiana in reply toskylas

I would go through it again. The worst part is being unable to control the side effects of taking so much medication. The pain afterwards you get used to. You must keep physically as fit as possible before the transplant. Walk as much as you can even if it's difficult. Keep your muscle tone especially in your legs. The longer you are lying down after the operation, the harder it is to get your fitness levels back.

And I never got my life back. I started another different life. And it's ever changing. xx 👋

skylas profile image
skylas in reply toCaspiana

What side effects have u got x n how long ago did u have your transplant x yea I try an exercise every day even though its getting harder n harder u got to keep trying n I still drive my daughter to school n back x

Caspiana profile image
Caspiana in reply toskylas

Hi skylas . Rather than write it all down again I will just paste my latest post for you to read. 😀

healthunlocked.com/blf/post...

skylas profile image
skylas in reply toCaspiana

Aw thanks so much xxxx

skylas profile image
skylas in reply toCaspiana

Ad my 3 day accesment just waiting to go home now but dint have bone scan cause short staff so will no end of month weather it's a yes or no il let u no x hows u x

Caspiana profile image
Caspiana in reply toskylas

I have good days and bad days but I am managing thank you skylas . Hoping to hear your news soon. xx 😊

skylas profile image
skylas in reply toCaspiana

Aw do u what r your bad days if u dont mind me asking x n how many tablets do u take a day x

Caspiana profile image
Caspiana in reply toskylas

Hello again 😊

Well I have a number of issues at the moment. But you see the medication we take especially the anti rejection medication and the high amount of steroids will inevitably mess with our bodies and minds. It's normal considering the toxicity of it. For some people side effects are very few, for others it's more severe. So you must not think that because I have issues you will too. It's very case by case. I suffer from tremors, headache, insomnia, hypertension, increased creatinine levels, hypophosphatemia, hypomagnesemia, anemia, leukopenia, asthenia, pain and fever on occasion. (These are side effects of Prograf mostly. ) But, very importantly, my transplanted lung is working beautifully. And the first year is the most difficult. Things will level out eventually. It is often said when we undergo transplant, we exchange one set of problems for another. But being able to breathe for me is such a major win.👑🎉🎶🏆

Post transplant life is hard, hard work, but anyone can do it with determination. I will not go into how much medication I take, as it varies from person to person. It is a lot. HOWEVER, from six months post onwards, they start to ease up. We start to decrease doses in some medication. We will never be able to go without anti rejection medication, but we will have less. I have gone down on Predisone over the past few months. 😁 Don't worry. If I can do it, you can too. *HUG* xx 🙋💕

skylas profile image
skylas in reply toCaspiana

Omg your goin threw a very lot but your doing it arnt u u have to that's what I'm guna think what ever happens I will deal with it n best part is I will b able to breath x aw hope it gets easier for u soon x take care x cheryl x

Caspiana profile image
Caspiana in reply toskylas

I am! ! And so will you Cheryl. xx ❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤

skylas profile image
skylas in reply toCaspiana

Aw hope all the things your goin threw eases off a bit soon for u keep in contact n take care x cheryl x

Caspiana profile image
Caspiana in reply tosoulboy118

Hello soulboy118 . 👋

I know transplant is not for everyone. It is a huge undertaking requiring much work and very little room for slacking. I say this with utter respect for your decision, but at 18% lung function you have very little wiggle room should (heaven forbid) something happen to cause your function to decline further. Sadly, unlike the U.S. the waiting time spent on the transplant list can last for years in countries like the U.K. and Japan. But of course I am sure you have already considered this and discussed it with your lung consultant. Having the option is fantastic I think. xx 😊👍

skylas profile image
skylas

What's that clearing your tubes x but like u say u can cope with most things as long as u can breath x

skylas profile image
skylas

Ment to ask why u goin to stock hospital n not wythenshawe and what I fink bout your bladder they will find a cystvot something x good look on the 13th let me no x

ross-35_ profile image
ross-35_ in reply toskylas

Wythenshaw deal only with hearts and lungs. they referred me to Stoke its easier for me travelling x Hope you are feeling better x

skylas profile image
skylas in reply toross-35_

O rite x aw no feel worst got brought in by ambulance again today still ere il let u no x

ross-35_ profile image
ross-35_ in reply toskylas

You are in the best place, let me know how it goes and do all they say!! Needles or not! x

skylas profile image
skylas in reply toross-35_

Aw thanks I've never ad so many needles in all my life the arterial ones r the worst but ad 6 different ones now n they never get it first time fink I've got to the stage at last to just say just do what's got to b done got no strength to even put the numbing cream on ha so it's been a good thing x

ross-35_ profile image
ross-35_ in reply toskylas

Well done!! Its true you get to a stage when its almost normal after a few in one day! I hope yo are beginning to feel bit better now too.Its awful going through the exasperations... not sure if thats how its spelled? Are you in Wythenshawe or local hospital? Keep your chin up its really hard but it pays off. x

skylas profile image
skylas in reply toross-35_

No dont feel any better yet am hopein will do soon no not at wythenshawe I'm in oldham lung ward I've just tried me on 3rd different antibiotics cause other 2 not doin nowt so hopefully this one will il let u no xxxx

ross-35_ profile image
ross-35_ in reply toskylas

Good job they spotted that! It happened to me once and its scary cos you think anti bios will help and wen they don't you do panic a bit! Hope all will be well with these, let us know how yo get on xxx

ross-35_ profile image
ross-35_ in reply toross-35_

Not sure if i sent that before x

skylas profile image
skylas in reply toross-35_

I ment to ask was your heart rate very high even at rest b4 your transplant x

ross-35_ profile image
ross-35_ in reply toskylas

With infections my Blood Pressure was high. P;us i sometimes got Palpitations mainy when i panicked due to lack of breath.

skylas profile image
skylas in reply toross-35_

Yea my heart rate 110 at resting n 150 if I even move n inch my blood pressure is sky high as well cant wait to get home but they wont let me till they get to bottom of it cause I've bn on 3 different antibiotics n still the same x hows u doin x

skylas profile image
skylas in reply toross-35_

Hi how u feeling n doin now do u wear a mask if yes is it a cloth or paper one do u sterilise everything n as your food changed n how many broncopyises have u ad since transplant x I'm home now but still bed ridden its shit x

skylas profile image
skylas in reply toross-35_

Hi were u bed ridden leading up to u getting your call x

skylas profile image
skylas in reply toross-35_

Ment to ask u how long from u arriveing at hospital to u goin down to op room to put u to sleep x

skylas profile image
skylas in reply toross-35_

Went to c the last one of the assessment today on my god she was telling me about the hallucinations I'll probably have x did u have any x

skylas profile image
skylas in reply toross-35_

Ment to ask u what did u put on the phys .cant remember the name. The one who asks u bout support n what u can n cant do .did u say u do a lot or very little x I wanted to ask u b4 I c her again cause dont want it to go against me n they take me off the list x

ross-35_ profile image
ross-35_ in reply toskylas

I hospital.broken back not able to answer

skylas profile image
skylas in reply toross-35_

Omg r u ok x how did that happen x I was so worried sumat ad happened to u x well it did x how r u doin x

HungryHufflepuff profile image
HungryHufflepuff in reply toross-35_

Oh my goodness. How are you (is that a stupid question?) I hope you’re able to make a gradual recovery from this.

skylas profile image
skylas in reply toross-35_

How u doin now x hows your back x omg how did u do that x

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