Back on the transplant list - Lung Conditions C...

Lung Conditions Community Forum

52,202 members63,038 posts

Back on the transplant list

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation
79 Replies

Yesterday I returned to the lung transplant waiting list after an enforced break due to my Dad picking up his second bout of Covid. Fortunately, Lauren and I didn't get it, too. We've all been doing regular testing and we must have caught Dad's covid very early before he could unwittingly pass it on. I notified the hospital immediately and they understandably erred on the side of caution asking me to take a 2 week break from the list.

In some ways it was quite nice having a couple of weeks off the list. It meant Lauren and I didn't need to worry about having a drink or whether our phones were on loud and fully charged or not. We could kick back and relax a bit - even if we were living in the house of someone with Covid hoping and praying that our daily lateral flows remained negative!

Having not been in contact with Covid directly since the first phase, pre-vaccine, when Dad was very poorly, I'd forgotten just how anxiety inducing it can be when it's on your doorstep. Having reared it's ugly head again, it's got me feeling a little twitchy about going out and doing things especially when there are many out there who aren't quite so careful these days.

Transplant could be a matter of weeks away but it could also be months or even years so we can't just squirrel ourselves away as we'd all go bananas. At the same time, I can't afford to pick up Covid as that would further extend the period of limbo as I'd have to come off the list again. It could also do serious damage to my lungs which could result in the transplant becoming more difficult or potentially not even possible at all. A real catch-22.

I got a bit blue about it last week when Dad was still testing positive but I'm in a much better place now that he's fully recovered and I've managed to avoid picking it up. I went to see my sister in a play at the weekend and as of yesterday I was officially back on the transplant waiting list.

Generally I'm doing well, I think, all things considered but the longer the wait drags on the harder I'm finding it all. A lot of it is the usual frustration that my life remains on hold with no end in sight which has impact both on me and those around me. However, recently I've also started to feel a little bit more mindful of the fact that my condition isn't getting any better and that slowly but surely my window of opportunity (along with my right lung) is literally shrinking. As a result, I've allowed the odd doubt to creep in about whether I'll get my opportunity after all. That's made worse by the fact that I've noticed another little dip in my performance on the exercise bike...

However, I need to remember that I've only been on the list for 5 months and I've already had two call ups. While my performance on the bike has dropped slightly, the fact that I can still cycle on the bike at all is encouraging and can only stand me in good stead if/when the transplant does finally happen. Ultimately, I can't really do much about about the disease progression itself. I just have to keep taking my prednisolone and Nintedanib and hope that they do their job of keeping the scarring at bay long enough to get me into that operation room for the transplant.

Look after yourselves everyone and thanks as ever for all your support!

79 Replies
sassy59 profile image
sassy59

So pleased your dad has now recovered Andy and great that neither you nor Lauren caught covid. It’s a bit of a rollercoaster at the moment and you must feel as if your life is on hold.

I strongly believe you will get the call again at some point, hopefully soon, but in the meantime just keep mask wearing and doing all you can to stay safe.

Thinking of you as always and wishing you well.

Take care, Carole xxx 🤗🥰

eleanordigby profile image
eleanordigby in reply to sassy59

I don’t know you Andy but I looked at your profile and a few posts and I agree with Carole! With your history you must be a priority for new lungs so you’ll get the call before too long. It must be a strain, being “on alert” all the time. I suppose you must get to a point when you don’t jump every time the phone rings, but it’s hardly a relaxing life is it. So glad you didn’t get covid though! Carry on being strong, I’m on the “rooting for Andy” list now too and can’t wait to hear good news!

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to eleanordigby

Thanks eleanordigby ! I've got a lot of things going in my favour in regards to the transplant waiting list that should mean that I get the opportunity again at some point sooner rather than later though I must say I do have mixed feelings about that at times as my getting some lungs will always be as the result of someone passing on and always in favour of someone else. Can't think too much about that though and just have to focus on keeping going in the meantime as best I can. You're right about getting used to being on the list after a while. It starts where you're paranoid every time the phone goes but that passes. The frustration is not really being able to go anywhere and constantly having to be aware of the possibility the call could come - kind of takes the fun out of things at times and not good if you like being spontaneous!

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to sassy59

Hi sassy59 thanks as ever for your lovely message. Definitely a bit of a roller coaster at the moment but when isn't it for us all with lung disease. I love your optimism about the call coming at some point. I share that belief and all I can do in the meantime as you say is keep taking precautions, stay out of trouble and keep pedalling the bike as best I can. Really hope all's well with you, too, and thanks again for taking the time to read my post.

sassy59 profile image
sassy59 in reply to dodgylungrunner

💞❤️💜🤞🏼🥰👍 keep the faith Andy. Xxx

Zero02 profile image
Zero02

fingers and toes all crossed for you

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Zero02

Thanks Zero02 - I'm going to need all the luck I can get if/when the call comes

Don_1931 profile image
Don_1931

The third time is sure to do it, I just hope it doesn’t keep you waiting too long. 👍🤞x

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Don_1931

Haha absolutely Don_1931 . Here's hoping it's third time lucky! Loving the profile pic with your cat. Reminds me of my old cat Theo. Black cats are the best!

Littlepom profile image
Littlepom

Hang on in there Andy. You have done so well to avoid the covid and are doing everything to make you as fit as possible when your turn comes. We are all routing for you and I do hope that it won't be long before we are celebrating with you.

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Littlepom

Thanks Littlepom . Hanging in there is a good way of describing where I'm at. Some days it's great and others it's a bit more of a struggle but I'm generally doing well I think. Avoiding Covid when it's literally been in the home has been very fortunate indeed and I'm doing my best on the bike that's for sure. Overwhelmed by how supportive this community is on Health Unlocked. Thanks so much and wishing you all the best yourself :)

peege profile image
peege

Thank you for your update and insight into your way of life, it must be pretty hard work to stay positive whilst waiting for that phone to ring and how amazing that you and your partner remained covid free!Glad your dad has survived it - again.

Very best wishes to you as always, Peege

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to peege

You're welcome peege ! In many ways it's therapeutic for me writing these updates as it allows me to go through the thought process of understanding what I'm feeling and getting the feelings out on paper helps me stay on top of things. Definitely tough at times to stay positive but you have to keep going and living one day at a time as best you can otherwise you can get overwhelmed. Really hope you're well and thanks so much for all your support.

peege profile image
peege in reply to dodgylungrunner

🤗 do you keep a journal or diary I wonder P

Patk1 profile image
Patk1

Hope the drugs slow down the disease while u wait + hope u get a donor soon x

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Patk1

Thanks on both counts Patk1 ! I hope the Nintedanib is doing its bit to further slow down the disease progression though in the absence of regular monitoring and testing its very hard to tell to be honest. Hope you're well and thanks so much for taking the time to read my update ;)

johnderby profile image
johnderby

Hi so pleased that you managed to avoid COVID and that your dad is better now. I can understand all the doubts and niggles that you are having, it must be really difficult. I hope you don't have too much longer to wait. All the very best. John

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to johnderby

Thanks johnderby ! Got a bit nerve wracking for a while with the daily lateral flows but each day that passed after Dad started isolating the more confident we became that we had managed to avoid it. It is hard to not let the doubts creep in at times but keeping going on the exercise stakes really helps with the mood as does having all these lovely messages of support. Thank you!

Seapop-in20 profile image
Seapop-in20

Hi there It’s great to hear of someone else on transplant list. Are you under Harefield or Papworth? I have been attending Harefield for 5 years. Im on the active list and met Prof Dunning two days ago who assured me they are still looking. I have a rare blood group and high antibodies so getting a match is hard for me. I have never had a call up but have had three near matches. I’m lucky to still be on the list as I am 70 now! So if you look at that positively at your young age of 38 you will get a transplant. You may ask how am I still on the list? It’s because of exercise. I still do body pump, spin and yoga albeit it a lot slower and this is mostly as I am static. I do have trouble walking though and even doing the 6 minute walk is difficult but I still do it with oxygen, I now walk alongside the beach pushing a wheelchair as it’s easier to keep the upper body still it helps. I don’t know about you but do you cough a lot? That drives me mad sending the heart rate right up so I use a hand fan on the face to bring it down again - try it it works. I am on oxygen most of the time even talking if do too much of it. Sitting I don’t usually use it but as you know you have to protect the organs in your body so when I’m moving about I use oxygen. One thing I must advise you is that you must be really careful amongst who you mix with. You have got to avoid crowds and you must wear a mask when you go out even to shops, and anyone you see must be cold free or had Covid jabs. You are right about protecting your lungs … you can get an exacerbation at anytime so be careful. Have you put yourself forward for research? I did as I am under the Brompton Hospital in London and this is good for you to do. You are helping to find a cure, secondly, you are monitored even more closely and this combined with the checks at Transplant clinic ensures you are getting the best screening and help as possible. Research is key to IPF as you know there is no cure. If you go on reach drugs and they work you will be the first person to continue to use them … look for Phase Three drugs if you are offered any. My advice to you is to keep moving as soon as you stop your lungs will stiffen and as you know you won’t get that capacity back again. I hope in some way my message to you helps .. this is a cruel disease but you can do a lot to help yourself whilst your waiting for a transplant. I’m at the end stage of this cruel disease you are not so live life, keep fit and I promise you from my heart you WILL get a transplant.

Injecter1 profile image
Injecter1 in reply to Seapop-in20

Hello there…. I’m so pleased to hear your still on the transplant list and I pray you get your transplant soon. It is the most cruel and devastating illness and I still can’t believe It has happened to me. I am now 67 yrs old and was diagnosed in 2017, like you I am on oxygen which is pretty much most of the time. I try to keep as active as possible and have just finished another pulmonary rehab course. I was rejected for the transplant list last year due to an antibody and what they described as small lungs, but I felt my age was a factor, they also said the chance of a match was vertically impossible. I’m on Perfenidone but I don’t think it’s doing anything as my lung function has declined 6% over the last 4 months. I’m under the North West Lung Centre at Wythenshawe Hospital, I feel as though I’ve had to push and ask for everything. I would be really interested to know what your lung function is, I have an appointment next week. Thanks for listening to my rambling! X

Alberta56 profile image
Alberta56 in reply to Seapop-in20

That's a great reply. Having tried pushing a wheelchair along a beach, I admire you for doing it. Perhaps it made a difference that mine had a person in it. 😄

Seapop-in20 profile image
Seapop-in20 in reply to Alberta56

good for your muscles!

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Alberta56

Couldn't agree more Alberta56 ! Your determination is commendable Seapop-in20 !

Karenanne61 profile image
Karenanne61 in reply to Seapop-in20

Hi! Just jumped in cuz I'm under Harefield and their palliative team have helped me enormously. They are so positive and knowledgeable.

Seapop-in20 profile image
Seapop-in20 in reply to Karenanne61

I have mixed views about them to be honest alot of lip service from them - how long have you been on their list and w

Hi do you see as consultant?

Karenanne61 profile image
Karenanne61 in reply to Seapop-in20

First visit was this summer, my regular consultant is based in the John Radcliffe, Oxford. Consultant was Dr Carby, coincidentally he was registrar for my first resp. consultant. Palliative care consultant is Dr Das.

Seapop-in20 profile image
Seapop-in20 in reply to Karenanne61

I’ve met Dr Carby a few times … his very good .. my visit this week was Prof Dunning I thought he was going to take me off the list but he didn’t!

Karenanne61 profile image
Karenanne61 in reply to Seapop-in20

It's all such a delicate balancing act isn't it? Bad enough to need the tx but well enough to withstand life changing surgery.

Seapop-in20 profile image
Seapop-in20 in reply to Karenanne61

totally agree. Keep well and fingers crossed for you!

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Karenanne61

Spot on Karenanne61 the window is such a tight one. I came to the conclusion that I didn't want to delay and run the risk of the window closing before going on the list and a suitable set of lungs being found

Karenanne61 profile image
Karenanne61 in reply to dodgylungrunner

Such hard decisions to be made. X

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Karenanne61

Hi Karenanne61 my experiences of the team at the Harefield have been equally positive but I appreciate that everyone's experiences are quite different. Wishing you all the very best going forwards - are you still exercising?

Karenanne61 profile image
Karenanne61 in reply to dodgylungrunner

I am! In fact I'm grabbing a tea in between classes now! Next is pilates but I've developed a sore pelvis/hip and it catches me unawares if I'm not careful. How do you keep fit?

Kcn3 profile image
Kcn3 in reply to Seapop-in20

Andy has PPFE . But like IPF no cure. The main research for this disease is in Japan. There is some I believe at the Brompton . University college hospital London is, I know, doing research for PPFE looking at scans to determine the differences between IPF and PPFE. PPFE can be misdiagnosed because of lack of knowledge and education of the consultants and drs.

The added, massive, kicking is that the possible/probable cause of PPFE is some of the chemos, the total body radiotherapy and the bone marrow transplant that Andy needed to survive the Leukaemia he had many years ago.

There is also IPPFE with no known cause just like IPF.

To get this 'side effect' is horrendous.

I am told it is like a hidden graft versus host disease.

Keep your chin up Andy and keep moving.

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Kcn3

Thanks so much for your reply Kcn3 ! You're extremely knowledgeable on PPFE and I suspect know more than most of the doctors! I think it's inevitable that TBI played a part and I got through the bone marrow transplant without any real GvHD at all which I felt was lucky at the time. I think this was bubbling away in the background but didn't get picked up until late effects did a CT scan as part of a clinic. In reality my lung capacity had been in decline for a while but I was masking it to a large extent because I was so active.

Kcn3 profile image
Kcn3 in reply to dodgylungrunner

My daughter too got through her bone marrow transplant in 2009 without any GVHD and had more complications building up to the BMT . Apart from c-diff, post transplant was relatively plain sailing for her .So devastating to then get PPFE caused by it.

What I find even worse is that when I enquired with my daughters late effects team in 2020 as to whether the main treatment centres are aware . The answer at that time was yes and that treatment preparing for and the BMT remain the same as nothing else works.

We have a justgiving page that is fundraising for Dr Joseph Jacob at the University College London Hospital with the charity Breathing Matters.. He is a consultant radiologist and is part of a team researching PPFE by looking at scans to determine the differences between ppfe and ipf.

As ppfe is misdiagnosed and under diagnosed. The aim of the team is then to educate consultants and drs into recognizing ppfe. The hope is then in a few years to find and trial drugs.

Breathing matters helps fund research at UCLH into lung diseases. Under the just giving page we have set up I have agreement with Breathing Matters and Dr Jacob that monies raised go specifically to PPFE research.

Justgiving.com/Nathaliesoffe

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Seapop-in20

Seapop-in20 thanks so much for all your advice. I agree entirely on the exercise front. The last time I did FEV-1 etc I had 42% lung capacity and similar oxygen transfer levels and my right lung has shrunk significantly however I remain off the oxygen at the moment and I'm able to lead a relatively normal life. Like you I put the fact that I can still cycle on the exercise bike for 20+ mins at a fair old rate down purely to the fact that I've kept exercising as much as I can without over doing it - a tricky balance to reach at times.

The validity of that as an approach is epitomised by the fact that you're still in the list and I really hope that you get your call. I'm also under the care of Harefield and the Brompton. I've mentioned many times that I'm happy to help with research etc but haven't had anything back from them on that front. Completely agree that research is the key though if we're going to find better treatments and even cures for IPF in the future.

Keep up those beach walks and thanks again for all the advice.

Cloudancer profile image
Cloudancer

Thinking of you and Lauren and keeping you all in my thoughts and heart.So impressed both with your positive attitude and your fitness regime on your exercise bike.

Keeping everything crossed that you get the call soon .

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Cloudancer

Awww thanks so much for your lovely message Cloudancer - replies like this always give me a boost. Was wavering on whether or not to go on the exercise bike today but you've given me the boost to get on the bike. Thank you!

BreatheasyBe profile image
BreatheasyBe

Hi geat to hear you’ve avoided covid this time round. Keep fighting those demons that pop into your head. Think positive as much as you can but allow yourself those little blue moments in short bursts, they help bring balance and grounding regarding the enormity of what’s going on. Wishing you success on the transplant journey. B x

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to BreatheasyBe

Thanks BreatheasyBe ! Very lucky to have avoided Covid when it was literally on our doorstep and super relieved that Dad was ok as he was very ill first time round. Completely agree that it's ok to let the blue moments happen now again. You can't bottle everything up and it's good to acknowledge what's happening from time to time. Really hope all's well with you and thanks as ever for all your support.

Ergendl profile image
Ergendl

Thanks for the update. Glad you didn't catch covid from your Dad. Keep holding on. We're all here rooting for you.

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Ergendl

Thanks Ergendl . The level of support is amazing and if anything a bit overwhelming. Thank you so, so much :)

B0xermad profile image
B0xermad

Hi, good morning and try to keep positive, I am a great believer in positive attitude and you will get that call soon I hope and have a bright future ahead.wishing you the best possible going forward

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to B0xermad

Thanks B0xermad . We're definitely on the same page when it comes to positive mental attitude. For me it's essential and something of a defence mechanism that kind of kicks in whenever I face adversity. It got me through my bone marrow transplant and I'm hoping it'll get me through the lung transplant if/when it arrives. Stay strong yourself and thanks again for all your support.

helenlw7 profile image
helenlw7

I’m glad that your dad has recovered, and that you’re back on the transplant list. It must be so wearing, not being able to plan anything, and waiting for the call all the time. I will be thinking of you all.

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to helenlw7

Hi helenlw7 thanks so much for your message! It definitely gets draining at times and not being able to move forwards with life is frustrating but I've got to keep the bigger picture in mind and remember that I'm doing this to be able to hopefully move forwards with life with a better quality of life than I could possibly have without the new lungs. Really hope you're well and thanks again for reading my post and taking the time to leave a message.

Injecter1 profile image
Injecter1

Hello Andy…I’m so happy to hear your back on the list, your transplant won’t be long now. Keep safe and away from anyone with cough/colds, just don’t take any risks. That phone is going to ring soon! Good Luck x

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Injecter1

Loving your positivity Injecter1 ! Thanks so much for all your support and wishing you all the best going forwards too!

ghousrider profile image
ghousrider

matey this is ghoust rider here i am sorry to here your health not htere i feel sorry i got copd 10myears ago on a machine in my flat breathing not good all i can say keep smiling mate its keeping me going my dr told me nothing they can do i lost my job through the copd 10 ears ago and moved in to a ground floor flat could not handle stairs but keep smiling mate good luck 👍

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to ghousrider

ghousrider thanks so much for taking the time to read my post and leave a message. Sorry to hear that the COPD has taken away a lot of your independence but love the fact that you are remaining positive and doing what you can to stick to fingers up to the disease. Keep smiling and remember that this community has got your back when you need a boost

ghousrider profile image
ghousrider in reply to dodgylungrunner

i have now started doing to a coffee morning once a week through a local charity now 10am/ 12pm we have got a raffle going up and running & staring A bingo just one book no money in voled just fun but we stating get good now i called it this week it was ok yes use the fingers to health problems have a goood day thanks for messaging me 🖐️ghoust rider

Thepainterswife profile image
Thepainterswife

Hi , from reading your post I’d say your coping really well 😃 You have a great attitude and whilst it’s only natural to have down days and doubts etc ( and all the stuff life throws at us like covid etc really doesn’t help 🙄) I’m sure your positivity will pull you through . You are young with all your life in front of you so concentrate on the future post op and keep on working to stay well until your chance comes along which it surely will 😊 xx

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Thepainterswife

Thanks Thepainterswife ! Certainly doing my best and feel that I'm not coping too badly all things considered. It can just get so frustrating at times especially when you don't know how long you're going to have to wait and whether it'll even be a success long term or not. As you say, no point dwelling overly on the future or things out of my control. All I can really focus on is staying as fit and well as possible in the meantime to give myself the best chance of success with the transplant. Hope all's well with you?

Thepainterswife profile image
Thepainterswife in reply to dodgylungrunner

you’re doing everything within your power and you have the right mindset and I truly believe those two things are every bit as important as medication and interventions. My husband is now under palliative care and we’ve had the conversation with the Gp etc regarding end of life but he has battled copd which is now end stage emphysema for 18 years and continues to do so 😃 He’s always been a DIY fanatic so for his 75th birthday two weeks ago I bought him a small shed close to the house ( he has a big one further away in the garden that he can no longer get too ) today he’s planning to put in the windows - it’s been two weeks waiting for a good day ( health wise ) but he will do it 💪 I provide a healthy diet ,encourage him to keep moving and keep his spirits up and I believe this has given him years more than was expected. We re under no illusions and are at peace with the future, he’s had a good run which will inevitably end but at his age , having seen his children and grandchildren grow up and welcomed two great grandchildren into the world he has no complaints whatsoever You on the other hand , have a whole future in front of you , dismiss any negative thoughts , carry on doing what you’re doing and your positivity will go a long way to getting you through this testing time . Much love Geoff & Val xx

Izb1 profile image
Izb1

Well done for not catching covid from your Dad, keep up with the handwashing, masks etc. I still wear a mask when getting a taxi or shopping and still clean my shopping with a bleach solution . So many people have now relaxed about covid thinking its only mild so it doesnt matter, they forget about people like us who have to be careful and more so you waiting for this chance to have a better life. Keep up with the exercise Andy and dont let go of your positive thoughts. Sending good vibes your way x

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Izb1

Hi Izb1 we've been taking more precautions than many but even we were getting a bit complacent before Dad's positive test. Couldn't agree more about the need to stay vigilant or the fact that many people are no longer taking the same care as they did this time last year. It's easy and understandable to get annoyed at people's lack of care and regard for those at risk but at the same time I do understand that it's easy for people not to be as mindful of others when they aren't affected themselves. Really hope all's well with you and thanks as ever for all your amazing support.

Katinka46 profile image
Katinka46

Thank you so much for the update. I am not surprised by your anxieties and ups and downs. I imagine that it is a very hard place to be. But, as you have discovered, you can only take it a day at a time. A breath at a time.

Lots of love and the gentlest of hugs

Kate xxx

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Katinka46

Hi Kate, thanks as ever for all your support and understanding. It does feel hard at times but there are always going to be ups and downs on a transplant journey. I agree 100% that it's all about taking one day at a time and remembering for every down you'll get another up again so the key is to manage the downs and focus on the belief that you will enjoy another up!

Hope you're following your own amazing advice.

Love and virtual hugs,

Andy

Timberman profile image
Timberman

Good luck; you have earned it!

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Timberman

Thanks Timberman ! Going to need all the luck I can get if/when the transplant comes

dunnellon profile image
dunnellon

Best of luck to you and hope you're called soon!

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to dunnellon

Thanks dunnellon ! I really hope I get that call sooner rather than later too. I'll be super nervous if it does turn out to be THE call but at the same time I need to rip off that plaster now and get the transplant done so that I can get moving with life again.

primrose123 profile image
primrose123

Hope that you get word soon dodgylungrunner, your positive attitude will certainly help you, you are a great inspiration to all.Lots of Love, 💘 & all your friends here are with you every step of the way.. Take care, & may God Bless you always.. xx Primrose 123.. xx

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to primrose123

Really appreciate all your support as ever primrose123 . Thank you! Doing my best to keep going and about to hop on the exercise bike to give the puffers another work out. They'll have earned their rest when they get replaced lol

Alberta56 profile image
Alberta56

Best wishes and good luck. I hope the call comes soon. Thinking of the three of you and hoping you can keep clear of covid and all the other bugs going around. xxxx

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Alberta56

Thanks as ever for all your support Alberta56 . It really does mean a lot and I hope that you also receive all the support that you need. Love this community!

Alberta56 profile image
Alberta56 in reply to dodgylungrunner

Thanks for your kind words, dodgylungrunner. Love this community too.

MoyB profile image
MoyB

Sounds like you and Lauren could do with a few virtual hugs again, so here are some from me! ((((( ❤️ ))))) Glad to know you're back on the list and also glad to know that you avoided the COVID again, even though you were sharing a house with the bugs! The way it strikes is very random.

I hope everything falls into place for you soon so your transplant can go ahead, but meanwhile, do your best to keep as well as possible. Best wishes for a successful outcome.

xx Moy

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to MoyB

Awww, thanks MoyB ! Super relieved to have avoided Covid and that it wasn't too bad for Dad who was really ill first time round. Just goes to show how important the vaccine and the boosters are...

I'm doing my best to stay well I promise and am just about to hop on the exercise bike. Wish me luck!!!

MoyB profile image
MoyB in reply to dodgylungrunner

I do, with all my heart! xx Moy

watergazer profile image
watergazer

keeping fingers crossed for you Gosh what an emotional roller coaster the last few weeks have been. Thank goodness you and Lauren managed to swerve covid Hope your dad is fully recovered now. Take care. 🤗🤗

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to watergazer

Definitely been a bit of a rollercoaster watergazer but when isn't it when you're living with lung disease?! You're never quite sure how you're going to feel on any given day when it comes to energy levels/reactions to meds etc and I think the key is to just focus on the day in front of you rather than thinking too far ahead. Hope all's well with you and thanks as ever for all your support.

Karenanne61 profile image
Karenanne61

What a time you've had! I'm glad you're on the list again and hope that call comes very soon. I'm joining the rooting for you team and can't wait for the celebrations we and your new lungs will have.

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Karenanne61

Awww thanks Karenanne61 . Maybe if the team gets big enough the transplant team will hear you and I'll get that call by default. The new lungs provide huge hope and I'll do everything I can to make them a success although there are no guarantees of course. Really hope you're well and thanks again for all your support

spk64 profile image
spk64

Wishing you well, stay strong

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to spk64

Thanks spk64 ! Hope you're well, too, and wish you all the best going forwards.

MMaud profile image
MMaud

Good to hear from you Dodgylungrunner, albeit to update after a very stressful time.

I'm glad you are back on the transplant list and really hope your wait won't be for too much longer.

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to MMaud

Thanks MMaud ! After two call ups in just two months on the list I think I thought it would have happened by now but I realise that that was unusual and just need to remain patient. Another call will come at some point and when it does I just need to make sure that I'm as ready as I can be.

You may also like...