Transplant waiting list imminent/Nintedanib feedback

[dodgylungrunner]

Hi all,

Been a while again since my last update.

I was hoping to bring you definitive news on the transplant situation but we're not quite there yet as I've still to meet the team to discuss when to go on the transplant list and find out how long my window of opportunity might be. However, the good news is that they have got back to me to confirm that I am suitable for joining the waiting list which they will recommend if I decide that's what I want to do as there are no medical contradictions to the contrary and they feel that the time is now if we want to ensure that transplant is something that they can consider surgically.

That's a huge relief as I was worried that they might have found some issue with my heart that makes transplant impossible. I'm almost certainly going to decide to go on the list but I need to talk to them to find out more about going on the list and when I should do that. I appreciate it's got to be sooner rather than later but if, say, they feel I can take the summer before going on the list without it putting the transplant into jeopardy then that's something to consider.

In the meantime, I've booked in at the dentist to hopefully get a full bill of dental health that I need before they'll consider putting me on the transplant list. I've also started on the Nintedanib which, touch wood, hasn't caused any nasty side-effects so far which is great. No idea yet just how effective it might be in the short to mid-term but hopefully it will slow down the scarring to some extent to give me the best shot of getting the lungs through to transplant before my window closes.

I've also had my second Covid booster - 5th vaccine in total - after a bit of back and forth with my GP. Ridiculous that you have to push so hard to get a vaccine you know you're entitled to and have received a letter inviting yourself to go for but that's the way of these things sometimes and I know there's a lot of confusion abound. In the end, I had to go through 119 as the GP is no longer organising boosters in my area any more. Once I got through to a person (you've got to be very patient and persistent) it was really easy. Well worth pursuing this route if you're finding the going tough with your GP and haven't already had your latest booster...

Speaking of Covid, my Dad and I managed to avoid catching it off my wife who is now fully recovered. She is normally super fit and healthy but found it tough going for a few days and only returned negative lateral flows after 10 days so it stayed around for a while. Just goes to show that it very much hasn't gone away despite government's best efforts to seemingly sweep it all under the carpet.

Our recent IVF cycle was also successful and we now have 4 good quality embryos which we've put on freeze for now while we figure out next steps with the lungs.

Last and by no means least, I celebrated my stem cell transplant for leukaemia at the weekend. It's now 18 years post-transplant and leukaemia free for me. Whilst the transplant may well have played a part in my lung disease, I don't regret my decision in the slightest. If a lung transplant is anywhere near as effective I'll be a very happy man!

I think that's everything for now but in the meantime I wanted to encourage anyone currently on Nintedanib to consider submitting a few lines to Asthma and Lung UK for them to include in their consultation response as part of NICE considerations to wider the qualifying criteria to include those with FVCs of 80% + For me personally, it's a no brainer that anything that can slow down the rate of fibrosis could and should be available to patients at the earliest opportunity. Alternatively, you can submit your own response directly to NICE though the process is quite fiddly. Here's the link:

nice.org.uk/guidance/indeve...

Really hope you're all well and wish you all the best as we rush on towards the summer!

[sassy59]

Lovely to hear from you again Andy and thank you for the update. Good to hear you can go on the transplant list and keeping everything crossed for you. Great news about your wife’s recovery from covid and so pleased you and your dad didn’t get it. Very pleased about the IVF treatment too. We have two beautiful grandsons courtesy of that so wish you well as and when.

Glad you managed to get your 5th jab eventually. Well done on being 18 years post stem cell transplant for leukaemia. Amazing.

Take care and wishing you well as always.

Love and hugs, Carole xxx🤗❤️😘

[dodgylungrunner British Lung Foundation in reply to sassy59]

Thanks sassy59 ! Knowing I can go on the list and that I have a choice is all I could have asked for. Just got to work out now whether that's what I want to do or not and if so when to go on the list. I imagine they'll advise that I do that sooner rather than later when I see them on 10 June to go through everything and ultimately make a call not long after.

Fantastic to know that you've got two grandsons courtesy of IVF. We've had three previously unsuccessful rounds so we know it doesn't always work out but we're hoping it'll be 4th time lucky for us when we do decide to try implanting one.

Really hope you're well and thanks for all your support as ever. It means a lot!

[sassy59 in reply to dodgylungrunner]

Good luck with your decision whatever it is. Hoping the IVF works and thinking of you. We’re doing ok thank you. Take care xxxx

[Hidden]

Thank you for your long and very informative post. Reading it has moved me so much. Your positivity and the way in which you have dealt with your health problems and are going ahead with planning your future is humbling. I shall be willing you on with your transplant and looking forward to the day when you can tell us that you have babies as a result of the IVF. XX

[dodgylungrunner British Lung Foundation in reply to Hidden]

Hidden this message has made my day! Thanks so much!!! I've always been a positive person but I'm lucky because I've always had so much love and support from friends and family. That's key really and I couldn't do it without them. Really hope you're well and wish you all the best going forwards.

[Hidden in reply to dodgylungrunner]

💖 XX to you and your family.

[CDPO16]

Good to hear from you Andy and read your good news. Wishing you well as always, Carole x

[dodgylungrunner British Lung Foundation in reply to CDPO16]

Thanks for all your support as ever CDPO16 , it means a lot! Very happy that things are going in the right direction. Next step is a face-to-face with the transplant team to discuss joining the transplant list which I imagine they'll advise should be sooner rather than later which is exciting but scary at the same time!

[CDPO16 in reply to dodgylungrunner]

Yes, I can imagine the adrenaline will be flowing that day. Good luck and I look forward to hearing how you get on. Carole xx

[Rattle10]

It’s really good to hear your news, you are so inspirational. Good luck with everything, wishing you and your family well xxx

[dodgylungrunner British Lung Foundation in reply to Rattle10]

Thanks Rattle10 . All is moving in the right direction at the moment but obviously a long way to go. Going to be a fair few bumps along the way but at least transplant is an option and I'll have a choice on which way I want to go.

[CarolMcl]

What a positive attitude you have, inspirational 😁. Wishing you well

[dodgylungrunner British Lung Foundation in reply to CarolMcl]

I do my best CarolMcl but it isn't always easy! I'm glad that things are going in the right direction at the moment but know there'll be some tough times ahead if/when I go on the transplant waiting list.

[CarolMcl in reply to dodgylungrunner]

I'm sure it's not but your positivity with everything that's happening is truly amazing. I was feeling sorry for myself the other day and then I read your post, it really put everything into perspective for me. Wishing you well and will be thinking of you on June 10th 🤞

[Damon1864 Volunteer]

It's lovely to hear from you, so very pleased to hear that everything is going well for you. Please keep us updated on how things are going, have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

[dodgylungrunner British Lung Foundation in reply to Damon1864]

Aww thanks Damon1864 ! Don't worry, I'll keep you all updated. The updates are very therapeutic and the responses and messages of support really help keep me going and staying positive. I actually got a call from the Harefield yesterday to confirm a face-to-face meeting to go through going on the transplant waiting list and ultimately make a final decision. All set for 10 June. Really hope you're well and thanks as ever for all your support!

[Alberta56 in reply to dodgylungrunner]

Good luck! 🤞🤞🤞🤞

[Jane2005]

Very inspirational post & good news all round. Good luck with it all. 🙂

[dodgylungrunner British Lung Foundation in reply to Jane2005]

Absolutely Jane2005 . Probably as good a set of news as I could hope for at this stage. Still a long way to go but hopefully everything will continue in a positive direction.

[Patk1]

So pleased things r going well for u x

[dodgylungrunner British Lung Foundation in reply to Patk1]

Thanks Patk1 still got a long way to go but so far so good!

[HollyBoyd]

Hi Andy. Many thanks for your update, always good to hear from you. All sounds positive for the future, lots of challenges but until then, take good care of yourself xxx😊

[dodgylungrunner British Lung Foundation in reply to HollyBoyd]

Thanks HollyBoyd ! As you say lots to be positive about at this stage. Getting towards decision time in terms of whether I'm going on the list or not which I imagine would be sooner rather than later if I do decide to go ahead with it. I have an appointment with the transplant team on 10 June and will make my decision shortly after that I think after I've come back from a holiday with my wife and cockapoo Bertie in the Lake District.

[HollyBoyd in reply to dodgylungrunner]

Good luck with the appointment on the 10th and have a great holiday in the Lake District, no doubt walking some hills xxx

[Biofreak]

You have a very positive attitudend that will serve you well when you go on the transplant list. I'm also pleased you have started Nintendab to slow down the fibrosis. Being as healthy as you can be in the meantime is the goal before transplant as the healthier you are the quicker you will recover after transplant. Good luck Andy. Also good luck with the embryos. My daughter and husband have just embarked on the same quest. Best wishes all round.

[dodgylungrunner British Lung Foundation in reply to Biofreak]

Hi Biofreak thanks so much for taking the time to message. Completely agree that being as healthy as possible before transplant has to me primary goal now. As/when I go on the list I'm going to give up drinking altogether and I've already set myself some exercise goals. Wishing your daughter all the best with the IVF - we've already had three failed rounds so we know how tough it can be. Got everything crossed for her and her husband.

[HungryHufflepuff]

Thank you for the update. It's good to hear from you. I'm glad things are going ok for you and looking good for transplant. Congratulations also on your 18 years post stem cell transplant. That is so uplifting 😊

[dodgylungrunner British Lung Foundation in reply to HungryHufflepuff]

Thanks HungryHufflepuff ! The stem cell anniversary gave me a real boost actually as it reminded me that I've been through tough times before and made a tough call then opting for the transplant. 18 years later and still going ok so while scary there's every hope that a lung transplant could be similar. Really hope you're well and thanks so much for all your support as ever!

[MMaud]

Cue spooky music......

I was only wondering about you this morning.

I'm so glad you have positive options ahead and that you are grasping all opportunities. You are one grave chap.

I have been on Nintedanib since November and seem to tolerate it very well. I've had the odd queasy hour but no special relationship with the loo.

I have a review on Friday with the excellent clinical pharmacist but don't anticipate any changes.

Obviously I have no idea yet how, if in any way, the Nintedanib is working. I've only ever had one lung function test, done in a drive-through, during lockdown, but it will be repeated before my September appointment, so, fingers crossed.

I'll have a look at he NiCE stuff.

[dodgylungrunner British Lung Foundation in reply to MMaud]

Spooky indeed MMaud ! Having options is all that I could have hoped for and after the next meeting on 10 June I'll be in a position to finally make a decision on transplant one way or another including when to go on the transplant waiting list.

I'm glad that you're tolerating the Nintedanib ok so far. I was worried about the diarrhoea aspect as the pharmacist went on about that a lot. Like you, staying clear so far.

The million dollar question that we'd both like answers to is if its working or not. Not sure when my next lung function appointment is actually but that will hopefully show some positive signs then it's a case of comparing CT images at some point I guess though when they don't do them every year or whatever that could be quite difficult to judge.

Good luck at your appointment in September and give me a shout if you need any help with the NICE stuff.

[MMaud in reply to dodgylungrunner]

Thanks for your message.

I don't know if you have it, or have been offered it, but I do home spirometry? The device was provided by the clinic and uploads my readings over wi-fi in real time.

My initial massive frustration, being a professional data monster, was not being able to gauge how I was doing, because the phone software expresses in litres, as opposed to percentage of expected normal performance. All the nurses just brushed it aside, unable to explain, aside from that their computer works it all out. Anyway, I now have the relevant information, so can see on a day-to-day basis how it's going. It varies, but it is clear my lungs do best when I am exercising quite hard.

Yesterday in my conversation with the pharmacist she confirmed I seem to be rock solid stable, with my bloods also excellent. It was such a relief. I'll literally keep taking the tablets.

If you don't have it, perhaps home spirometry might be helpful to you. Although I will admit being a real competitor I am driven to achieve decent numbers. I hate to think how it could be should I progress.

I'm sure that sounds like I am in denial of my condition. I'm not, but I'm determined my mind will do it's level best to keep me looking forward positively. Mind over matter doesn't always work, but I'll be putting it to the test.

Hopefully, we can bot raise a glass to your 18th anniversary of your transplant. By then I'll be ancient, but still here.

[Ravey]

Wow 💪💪👏👏👏.. you are incredible..🍻 Goodluck with absolutely everything Big respect to you x

[dodgylungrunner British Lung Foundation in reply to Ravey]

Awwww thanks Ravey ! I'm doing my best but I'd be lying if I said I hadn't struggled at times as we all do. Things certainly going in the right direction currently and I definitely won't give up. Hope all's well with you and thanks so much for all your support.

[JetJet]

Congratulations on , well, everything! Positive attitude helps with everything especially when you are dealing with so much! Great news you can go on the waiting list and amazing news re your IVF process. Fingers crossed for you and your family. Take Care

[garshe in reply to JetJet]

Good luck re transplant and congratulations on IVF. Hope all works to plan xxSheila 🙈💕💕

[dodgylungrunner British Lung Foundation in reply to garshe]

Thanks garshe . Long way to go on both fronts but definitely steps in the right direction!

[dodgylungrunner British Lung Foundation in reply to JetJet]

Thanks JetJet . After a frustrating and uncertain period things do look like they're finally heading towards a conclusion one way or another. Got a meeting with the transplant team on 10 June to discuss the transplant and if/when I go on the waiting list. After that things will all be a lot clearer!

[Izb1]

Thanks for the update Andy. Its heartwarming to hear how well you are doing and what a great attitude you have, which I am sure will see you through this next chapter in your life. Thank goodness you escaped the threat of covid, thats something you really dont need at this stage. 18 years post stem cell transplant for leukaemia, wow, another fight you have come through. Just remember you are amazing. Please keep us updated x

[dodgylungrunner British Lung Foundation in reply to Izb1]

Thanks for all the amazing support as ever @Izb1. Definitely helps keep you going sometimes and will definitely be needed if I do go ahead with transplant and I'm lucky enough to find a donor. Got a date now to go over everything with the consultant and surgeon. Most interested in finding out timescales in terms of how long they think my window of opportunity is and when I should go on the list.

[Straddie]

That’s just a wonderful story. Your positive attitude really shines through. Also how lucky we are to live in an age where stem cell transplants and lung transplants are possible. Isn’t that amazing? And that we have an NHS which for all its faults works for us at important times.

[dodgylungrunner British Lung Foundation in reply to Straddie]

Awww thanks Straddie . I'm a positive person generally but I'd be lying if I said that I hadn't had my moments of doubt and feeling sorry for myself as we all get from time to time. Completely agree about both the science and the NHS. Medicine is amazing and our NHS do a brilliant job in the main in extremely trying circumstances. I already owe my life to them once and could soon be saying the same again if all goes well.

[Otto11]

That all sounds very positive so keeping everything crossed for you. 🤞🤞🤞🤞Take care.

[dodgylungrunner British Lung Foundation in reply to Otto11]

Thanks Otto11 ! News so far is all very positive. I've now got an appointment with the team on 10 June to decide ultimately if I want to go for transplant and if so when to go on the list. Going to need an awful lot more luck going forwards so keep the good vibes coming

[Otto11 in reply to dodgylungrunner]

It’s a huge decision for you to make so I certainly don’t envy you in that. I do however wish you all the luck in the world & will definitely keep the good vibes coming. Stay positive you’re doing great 👍

[Karenanne61]

Pleased to hear from you. Everything seems to be positive. I especially love the news that the ivf has been successful thus far. It's interesting hearing from people who are at different stages of the tx process, I have an appointment at Harefield at the end of June.

[dodgylungrunner British Lung Foundation in reply to Karenanne61]

Thanks Karenanne61 ! Everything going in the right direction though it feels like forever to get to this point and I'm not even on the list yet. Next step is an appointment at the Harefield for me, too, on 10 June to go over any questions I might have and decide if and when I go on the list. Relieved in the main but also a little scared as if/when I hit that button I'll be on the list and then things start to get very real. Hope you're well and wish you all the best with your appointment at the end of June. How's everything going?

[Karenanne61 in reply to dodgylungrunner]

Thankyou. Everything is ok. Still doing lots of things I enjoy.

[watergazer]

Great to hear from you Andy. What a positive post. So glad you can go on the list if you wish . Good news about the IVF and your 18 YEARS post stem cell transplant. What a warrior you have been in your life Take care xx

[dodgylungrunner British Lung Foundation in reply to watergazer]

Thanks watergazer ! Life's certainly been a challenge and rarely dull this far. A very big challenge now on the horizon but I'm determined to give it my best shot and see where that takes me. Now got a date - 10 June - to discuss with the transplant team what my window is for transplant and options in terms of when to go on the list. Then it'll just be a case of deciding what I do.

How are things with you? Hope you're well and keep fighting the good fight!

[watergazer in reply to dodgylungrunner]

I’m like most people at the moment-getting the bugs that are going around which lead to bronc/asthma flare ups. Take care. Good luck with your appointment xx

[dodgylungrunner British Lung Foundation in reply to watergazer]

Sorry to hear that you've been picking up some of the bugs doing the rounds. I hope you manage to catch a break soon and that antibiotics and/or your inhaler(s) help get them shifted.

[Caspiana]

Hello Andy, Very nice to hear from you. I just want to say I'm glad everything is going well and many congratulations on the successful IVF treatment. Very happy for you. Take good care. xx 👋🙂

[dodgylungrunner British Lung Foundation in reply to Caspiana]

Thanks Caspiana ! We're moving towards having all the options on the table and knowing what we'll be working with. Decision will be a tough one but I'm 95% there in my head now. So relieved that options are there and that it's my decision to make. IVF round was fantastic. Still a long way to go in that respect, too, but to have 4 good quality embryos at our disposal is fantastic.

Really hope you're well and thanks as ever for all your support.

[Stratos20]

Oh Andy you have such a lot of positive stuff going on. So happy for you. Fingers crossed all goes to plan. Best wishes to you. Diane 😊

[dodgylungrunner British Lung Foundation in reply to Stratos20]

Thanks Stratos20 ! So much positive stuff going on as you say - hopefully it'll remain that way going forwards. Have a great weekend and thanks so much for all your support.

[BreatheasyBe]

Hi oh goodness a lot of emotions no doubt with the listing, ivf success along with the worry of avoiding covid. Best of luck on your journey- both the transplant and potential growing family. Now I’ve to get in touch with gov to get this drug available for all needing it.

[Alberta56]

Thank you for the update. I'm glad things are going swimmingly. xxx